Eddie's Page Guestbook

Kristianne Kuipers - 12/21/00 21:45:29
My Email:kristianne1@mailcity.com
Where are you from?: Holland
Through which search engine did you find us?: www.ilse.nl

Comments:
This is great! I also have a brother with the same syndrome, only he's a little bit older, he's is 17 now. We just recently found out that Raymond ( my brother ) has this disease, it took the doctors years to find what it was! My brother is both physically as mentally handicapped, and you can compare him to a 7 months old baby. He can't eat, talk, walk or anything at all! It's just a baby, but he's really sweet and everybody adores him! I just wanted to say that it's great you want to share your little boy with the rest of the world!

sergio croce - 12/20/00 16:19:06
My URL:http://sergiocroce.interfree.it
My Email:croser@tin.it
Where are you from?: rome

Comments:
i speak little english my son have sindrom of west

eric - 12/15/00 04:28:30
My Email:eatuahene@msn.com
Where are you from?: Phoenix, Az
Through which search engine did you find us?: explorer/encarta

Comments:
5mnth son rcntly dgnsd. nt rspndng to phnbrbtl, now tkng topamax (2days) szrs cntnu. strtng erly nxt wk he will strt acth. my wife and i are ttly bffld by this. we dnt knw wht to expct frm the acth.

eric - 12/15/00 04:28:19
My Email:eatuahene@msn.com
Where are you from?: Phoenix, Az
Through which search engine did you find us?: explorer/encarta

Comments:

chanetha taylor - 12/13/00 20:05:34
Where are you from?: panama city fla.

Comments:

chanetha taylor - 12/13/00 20:05:32
Where are you from?: panama city fla.

Comments:

- 11/21/00 02:41:20

Comments:

Lakeisha Murray - 11/13/00 22:24:27
My Email:lmurray@maxinc.com
Where are you from?: Dallas,TX
Through which search engine did you find us?: yahoo

Comments:
Thank you for this website my 6 month old was just diagnosed with this and my husband and I need to know we are not alone.

- 11/08/00 18:19:31

Comments:

- 11/08/00 18:19:25

Comments:

Claudia Sturm - 11/07/00 14:52:58
My Email:c.f.sturm@t-online.de
Where are you from?: Germany, Freiburg
Through which search engine did you find us?: yahoo

Comments:
Hello, thank you for these great, although a hard theme, happy sites. That's what i needed I like these photos of eddy very much. My daughter Ricarda, born march 6th 1999, has down-syndrom and at the age of 9 month she was diagnosed west-syndrom (idiopath c). At that time, we lived in Berlin and were lucky to meet there specialist Prof. Dr. Spohr, who did a lot of research on the west-syndrom, especially the medication with valporic acid. We started with this (dosis now 600mg) combindes with Vitamin B6 (20 mg) she is now, since march 2000, free of seizes and the EEG is normal. (knocking on wood). She develops very slowly, but she is very funny and curious. I was glad, to find so many other parents and information. Good luck to all. Claudia

Ray Bush - 10/29/00 19:56:32
My URL:http://www.ntlworld.com
My Email:ray.bush@ntlworld.com
Where are you from?: Wales UK
Through which search engine did you find us?: Metacrawler

Comments:
I am sure that your web page has given hope to many people. Like you, I have found many stories which are not hopeful and, I fear, have much more in common with our friend's little girl, which is why I continue to search, just in case there is something o t there which has not already been tried.

JoAnn Miller - 10/26/00 20:56:23
My Email:jmm909@aol.com
Where are you from?: North Carolina
Through which search engine did you find us?: Infantile Seizures

Comments:
I love your site. Your children are adorable and your son is a miracle. We are not sure if this is what my niece has yet. She is in recovery as I type this for her muscle biopsy. She is at Scottish-Rite Hospital in Atlanta. In the beginning they said Mitochondrial disease and now they are leaning toward this because we dont h ve the family history for the mitochondrial. The biopsy will tell which disease and life expectancy. I will keep your family in my prayers. Noone should have to lose a child ever and my brother and his wife already lost one 3 years ago this Dec 9th. (Jess ca was 10 1/2 months old). Thank you again for your site. JoAnn

Annette DeWoody - 10/24/00 05:46:19
My Email:Adew602733@aol.com
Where are you from?: Ontario, California
Through which search engine did you find us?: aol

Comments:
Thank You!!! This gives me hope. My son Brandon was diagnosed with IS and hypsarrythmia when he was 16 months old. It took me along time to find a doctor who believed my husband and I. In the process of diagnosing him he has had tubes put in his ears. That only made the spasms much more severe. I found a pediatric neurologist and he was the first doctor of 6 that we had seen that knew what we were dealing with and that believed us. After reading the story of your son it give me hope. Brandon has bee through ACTH 9 weeks, multiple meds, CT Scan, MRI which were negative for abnormal masses, and 4 EEG which still shows hypsarrythmia but only in the frontal area of his brain. He is currently on Valporic acid and Lamictal. My question to you would be, ha e you looked at potential food allergies, via a blood test? Because nothing has completely worked for brandon, I was considering more intense bloodwork. Thank you for the hope!! thx..Annette

Vikki Brock - 10/19/00 19:36:04
My Email:Rhswildcat84@aol.com
Where are you from?: Knightdale, NC
Through which search engine did you find us?: AOL

Comments:
My daughter Melanie is almost 15 mos. old and she has Infantile Spasms as well as low muscle tone. She also has a G-tube. We are encouraged by what we have been reading on this website. Thanks!

wendy - 09/30/00 11:02:29
My Email:cwaproperties#vallkyrie.net
Where are you from?: oh io
Through which search engine did you find us?: unsure

Comments:
thanks for the encouragement, we are still looking for something to stop Ryker's seizures.

Carol Mastersanti - 09/27/00 17:27:04
My Email:cmastersanti@skandia.com
Where are you from?: Connecticut
Through which search engine did you find us?: Yahoo

Comments:
I probably have NO business putting in my comments for I am a mom with 2 healthy children.(God willing) I stumbled on to this website and I can't tell you how my heart goes out to each and everyone of you. This is not pity; yet something that comes dee within my heart. My prayers are with you.

maureen moore - 09/25/00 21:11:48
My Email:maureen

Comments:

nancy sadler - 09/16/00 02:41:05
My Email:theheritage@earthlink.net
Where are you from?: Whispering Pines, NC
Through which search engine did you find us?: Yahoo

Comments:
Our son Adam, born May 25, 1999, also has Down syndrome, a double whammy! He was developing age appropriately for a normal child until he was 4 1/2 months old. Then we noticed that he had stopped tracking with his eyes. He was didn't respond even to li ht up until a few months ago. His vision has improved dramatically, but at 15 1/2 months, he is not even close to sitting up. Even though he has come along way since January, he is still far behind. We did the ACTH injections for nine weeks and it was awful. We have tried Topomax, amictal (he broke out after a week), clonazapem (slept 23 hours a day), Vigabatrin, Piracetam and is on 800 mg of Neurontin three times a day. We see Dr. Lawrence Leichtman in Virginia Beach (he is a Genetic Disorder specialist, and Dr. Robert Greenwood at UNC Chapel Hill in NC. He is a Pediatric Neurologist. Adam's MRI also indicated it was idiopathic, but he experiences the "dips" like your on. We call it "being unplugged". Thanks for your son's story. Nancy

Jose Gomez - 09/06/00 22:17:13
My Email:jgomezf@telcel.net.ve
Where are you from?: Venezuela
Through which search engine did you find us?: Yahoo

Comments:
I didn´t read the history yet, but i hope that can help me. My son Jose Eduardo has a Several brain demage.

cinzia - 08/28/00 06:26:21
My Email:cinbar@katamail.com
Where are you from?: Rome Italy
Through which search engine did you find us?: IOL

Comments:
J am a nurse and J work with neurological patient. I am very interisting at the story of this little patient.

Garland Pohl - 08/16/00 05:18:56
My Email:gpohl@juno.com
Where are you from?: Houston Texas
Through which search engine did you find us?: juno

Comments:
Great story, Ellen, exciting, enticing layout. I know it has been therapeutic to create this site. You know we wish the very best for you and Ed and the children. You've done a great job of finding your way through the woods with no map. We are proud of y u. Hope to see you sometime soon. Aunt Garland

Garland Pohl - 08/16/00 05:14:05
My Email:gpohl@juno.com

Comments:

- 08/10/00 21:49:06

Comments:

CRAIG MUSTO - 08/03/00 17:47:39

Comments:

BILL POHL - 08/03/00 00:11:40
My Email:MAYAN@JUNO.COM
Where are you from?: HOUSTON, TX
Through which search engine did you find us?: THE GREAT GARLANDO

Comments:
YOU ARE GIVING ALL OF THEM HOPE. KEEP UP THE GOOD WORK BILL

sam & sonia mtz - 08/03/00 00:06:45
My Email:AMERVET59@AOL.COM
Where are you from?: las vegas n.m
Through which search engine did you find us?: infantile spasms

Comments:
thank fyou or sharing your story with me.The more storys I read the stronger I feel..

claude portugie - 08/02/00 21:05:14
My Email:cpp@ntl.sympatico.ca
Where are you from?: timmins ontario canada
Through which search engine did you find us?: canada.com

Comments:
we just found out today that our friend's child has (I.S) and im set to find out has much info as possible thanks for your story

Becky Stroup - 07/31/00 02:36:59
My Email:Jaxon 1125@ aol.com
Where are you from?: Tuscaloosa,Alabama
Through which search engine did you find us?: aol

Comments:

Becky Stroup - 07/31/00 02:34:43

Comments:

- 07/15/00 01:52:04

Comments:

William and Lois Beohler - 07/13/00 00:46:37
My Email:wbeohler@aol.com
Where are you from?: Parker Colorado
Through which search engine did you find us?: Aol web search

Comments:
Our son is 9 months old and his name is William also. He has just went in for his eeg and has gotten the blood work and urin samples taken. We are going in for his MRI on monday july 17th. We are gaining hope from your story although it is devastating o come to the conclusion that we are just starting this journey. We thank you for giving us hope and you can email us at Wbeohler@aolcom thanks and good luck with eddie and your decision for surgery or not keep us updated and our prayers are with you also. William,Lois,Lonnie and William jr. thank you

Marsha MIiller - 07/12/00 18:26:55
Where are you from?: West Virginia
Through which search engine did you find us?: Infantile Spasms

Comments:

wendy alcumbrac - 07/11/00 01:06:18
My Email:wendyr30@aol.com
Where are you from?: IL
Through which search engine did you find us?: yahoo

Comments:
Our son Ben was diagnosed 4 months ago. He's been on Topamax and Phenebarbatol since March. The Doctors want to start a protocol of ACTH because the seizures haven't gone away with the current meds and his low tone has not improved. Do you have any sugges ions for us while he's on the ACTH?

Brandi Walling - 07/09/00 23:04:32
My Email:mason97@altavista.com
Where are you from?: Houston, TX

Comments:
Thank you so much for sharing your story. It gives me hope. My son, Mason, began having IS at 3-mos old. He was born in March 1997. So, Eddie and Mason are very close in age and they also started having the same symptoms at around the same time. We irst noticed Mason's symptoms at the beginning of July 1997. God bless you and Eddie! I hope that if you have or are going to do the surgery, that everything works out well.

Tracy Beauregard - 07/07/00 00:47:25
My Email:beaufam@juno.com
Where are you from?: Hampden, ME

Comments:
My daughter was diagnose with infantile spasms 4 years ago. I am just now brave enough to see other stories. She continues to progress however we have a long road to go!!

Melody Monk - 07/06/00 15:18:13
My Email:trilliumeye@voyager.net
Where are you from?: Lansing, MI
Through which search engine did you find us?: voyager search

Comments:
I'm looking for my nephew, Nathan, who, at about 7 months began having "spasms". These are in addition to seizure activity since birth. He has not progressed now at 9 months, past about a 3 month state. He doesn't make eye contact, smile or reach. Doctors have not found a reason, nor has he been diagnosed with anything. We are searching websites hoping to find someone who has had a child similar to Nathan who can give us avenues to follow as far as finding a diagnosis. Thank you so much and

Kris Gentry - 07/03/00 06:44:28
My URL:http://75176556.home.icq.com/sethstory.html
My Email:WKSgentry3@panola.com
Where are you from?: Crowder, MS.
Through which search engine did you find us?: Infantile spasm

Comments:
Hello, My Name is Kris and I am a mother of an Infantle spasm child...I have soooo many questions I don't understand. Do you think you could help? And I would also like to put my son's story under the Infantile Spasm search and was wonder if you could hel . Eddie is a beautiful little guy and he is looking good!!!! e-mail me please..if it's not to much trouble or I have yahoo chat or aol chat I would love to chat with you about our son's............Kris

rebecca west - 07/01/00 14:46:58
My Email:jadeawest@cs.com
Where are you from?: plano, tx
Through which search engine did you find us?: infantile spasm

Comments:
I am currently acting as a part time children's minister at our church. (We are in the process of finding smeone full time.) I got a call that someone who attended our church a few times is in desparate need of prayers because their five month old son h s recently been diagnosed with infantile syndrome. I was looking for hope and your web page gave me some. At least now I can visit these parents with some form of encouragement. Thanks for eddie's story. Sincerely, Rebecca

r.odonnell - 06/28/00 00:21:19
My Email:rebecca12774@juno.com
Where are you from?: florida
Through which search engine did you find us?: yahoo/infantile spasms

Comments:
hi my son is 5 months old and we just found out that he has infantile spasms. after alot of eeg and cat scans and mri we found that he has this type of seizure disorders our family is greatful that there is hope after all. he starts his acth on thursday / u hope it works for him too. good luck if you have any advice please write back we need all the help we can help. thanks for your wonderful story and hope everything works out for you

susan athey - 06/27/00 23:59:43
My Email:jathey@zoomnet.net
Where are you from?: beckley west virginia
Through which search engine did you find us?: microsoft explorer

Comments:

Sally Robinson - 06/19/00 12:54:46
My URL:http://www.teletubbies.com
My Email:heysally@teletubbies.com
Where are you from?: France
Through which search engine did you find us?: yahoo

Comments:
Great to hear the Teletubbies help. Love from La La

tiziana tofanari - 05/25/00 21:20:40
My Email:titti.t@libero.it
Where are you from?: Florence-Italy
Through which search engine did you find us?: Virglio

Comments:
Our 17 month-old Andrew has had a paralysis celebrate her prenatal, you/he/she is recovering a lot with the therapy, but next month to sustain the psychic-motor development we will begin a care with sedativi(Luminelett). We have worried for the secondary ffects of the medicine (sleep or nervousness) because his/her level of attention for the external world that is excellent. Your home page is beautiful, above all for the love and the hope that it comes from it. Chje the Lord helps you. With affection Titt You excuse bad English

Laurie - 05/25/00 17:08:07
My Email:WilsonKenyon@aol.com
Where are you from?: Maryland
Through which search engine did you find us?: Infantilespasms

Comments:
I also have a son who was diagnosed with infantile spasms (in 1992). He is now 8 years old and has been seizure free for 4 years. His development has been impaired. He can only say a few words. I had no idea that so many other parents have been through th same thing that I had gone through. I only wish that I knew about this in 1992. Its been hard going through this alone. I wish you and your family all the best.

Christine Oyler - 05/18/00 04:27:21
My Email:christine_oyler@juno.com
Where are you from?: Pleasant Grove, Utah
Through which search engine did you find us?: Yahoo

Comments:
I have a niece with West Syndrome and I'm trying to learn more.

Kimberly Deans - 05/15/00 21:36:51
My Email:scdnkrd@att.net
Where are you from?: Plano, Texas
Through which search engine did you find us?: yahoo

Comments:
May 15, 2000 Ellen, My 6 month old daughter, Gillian, has been having seizures since February, and has been on Tegratol and Phenobarbiatl, with no improvement, and in fact they have increased. I purchased a book on childood epilepsy a week ago and found the pages on infant le spasms. We went to our pediatric neurologist for the second time today and after describing the seizures, he said he felt sure they were infantile spasms. We are having our second EEG Friday (May 20) for a definitive diagnosis. Until now, I have bee unable to find any info on the net about childhood seizures matching Gillian's episodes. did no know however, to type in infantile spasms. My daughter has a myriad of other developmental anomalies she was born with. This is really just the 'laterst' one we are dealing with. We feel like our baby is a miracle baby, and has been through so much. We know she will get through this. She is a blessing from God. How we, her parents will manage, is another story! Any info and support is appreciated. Thank you, Kimberly, Gillian's Mom

Sharon Harmon - 05/09/00 20:52:11
My Email:saharmon@drs.state.ok.us
Where are you from?: Edmond, Oklahoma, USA
Through which search engine did you find us?: yahoo

Comments:
My Grandaughter was diagnoised with Infantile Spasms at 3 1/2 months. They were diagnoised quickly and treated with ACTH. The seizures stopped immediately and she has developed physically normally to this point. They never found a cause for the seizur s. She is now 8 months old. She takes one B6 vitamin twice a day but is otherwise not on any medication. I am still concerned about mental delays as she gets older and welcome any information from other parents or grandparents.

SHAWN&MAYA MCCRACKEN - 05/08/00 02:27:15
Where are you from?: NASHVILLE,TN
Through which search engine did you find us?: YAHOO

Comments:

MAYA MCCRACKEN - 05/08/00 02:25:22

Comments:

OLGA ALVAREZ - 05/07/00 01:12:17
My Email:pete22101969@yahoo.com
Where are you from?: Cuba
Through which search engine did you find us?: yahoo

Comments:
My nephew has been sufering from West Syndrome since he was 5 month old,he was not suppose to reach one year old but fortunately the best neurological specialist applied different treatments on him and together with the amazing strength of his mom he has eached the age of 16 years.His case is worst than Eddie's,he used to have at about 80 spasms a day,he began walking when he was 10,he doesn't speak.My sister would like to contact you by means of my email.Right now we are living here in the U.S.,in Miami, l..I can tell how you feel about this and the great efforts you must have done because trough my sister's fight for his son I have realized that life is just worthy if people like her and you exist to take such a lovely and dedicated care .Hope is up to us.

Charlotte - 04/30/00 22:53:35
My Email:cpeterso@dayton.isd.esc4.net
Where are you from?: Texas
Through which search engine did you find us?: Not sure-just searched the web-infantile spasms

Comments:
Hi, I will keep Eddie in my prayers. He is a precious child. My son was only 4 months old and recently passed away (12 weeks ago) having infantile spasms which we thought he was cured of. I hope the best for your son.

Billie Berndt - 04/25/00 19:03:14
My Email:jkmetz@lsol.net
Where are you from?: Manitowoc, Wi

Comments:
HI my daugther has cortical dysplasia she is curently on medication but it does not seem to be helping her. she is curetly delayed the next step the doctor want is for her to have surgery to remove part of the left side of her brain. my family and i would like more information if you could please help. thanks and best wishes to you and your family.

Susan - 04/23/00 13:17:09
My Email:ReCynd@aol.com
Where are you from?: Southern CA
Through which search engine did you find us?: yahoo

Comments:
I just happened upon your site...WELCOME HOME, JANE! I realize she's a big girl now, but I'm a little late coming to the site (It's Easter day). Darling site!! Susan

Jan Silbermann - 04/19/00 22:30:20
My URL:/Heartland/Flats/2904
My Email:tead@ivillage.com

Comments:
HI! I was looking at your webpage again for the first time in months. Such a beautiful job. Your daughter is so cute. We just ahd another baby girl too, Shoshana. Eddie looks great and I know your story continues to be an inspiration. I love all your pag s. Jan

Christina Leighton - 04/11/00 15:19:10
My Email:ShirliValentine@aol.com
Where are you from?: Derby, England. UK
Through which search engine did you find us?: Yahoo

Comments:
My young grandson has problems and West Syndrome has been mentioned although we cannot find anything out about it at all. Thank you for your inspiring story so far. Love to Eddie from the UK

veronica escobedo - 04/08/00 19:33:18
Where are you from?: katy tx

Comments:
it is some hope not to know that our little emanuel is not alone and neither are we thankyou for giving us hope

josefina - 04/07/00 04:03:20
My Email:josport@latin mail.com
Where are you from?: mexico

Comments:
gracias.

Becky paris - 04/02/00 06:08:30
My Email:parisb@mail.com
Where are you from?: Utah
Through which search engine did you find us?: snap.com

Comments:
My son has Rasmussen's Encephalitis and had surgery to remove the left side of his brain. I had heard about Cortical Dysplasia and looked for information on the internet. There isn't much but I did run on to your page. I wish your you and your family a l the best.

Willie Ruhl - 03/28/00 05:02:22
My Email:william.ruhl@teligent.com
Where are you from?: Baltimore, MD
Through which search engine did you find us?: Yahoo

Comments:
Hello, everyone i'm a parent who has just been told today that my son who is 6 month has IS. I have a ton o questions and really don't have any clue on what to think or what to do. I had extreme high goals for my son, now which seem to be shattered. Read ng this story put our lives into perspectives. Now I can only hope we caught it in time.

David Mc Clean - 03/23/00 23:33:48
My Email:davymac_snr@yahoo.co.uk
Where are you from?: Ireland
Through which search engine did you find us?: yahoo

Comments:
we are just starting along this road with our baby son of just 4 months who was diagnosed with wests syndrome at just 10 weeks old. we thank you for the hope we have received from reading your story.

Sue Phillips - 03/23/00 20:47:49
My Email:chopsuey69@hotmail.com
Where are you from?: Manchester, England
Through which search engine did you find us?: Yahoo

Comments:
Hello, my names sue! my best friend Gill has a baby called Jade who has severe West syndrome and cerebral palsy. We know hardly any information about west syndrome only from what some people have told us. Gill doesn't have access to the internet,or a computer so I thought I w uld look for some information for her.So far the epilepsy drugs don't appear to be working for Jade, she still has many seizures. jade is such a beautiful baby, and I really want to help Gill through her stressful times. So please help us with any information or just simply to let us know that there are other people out there who know how Gill feels right now. She is feeling very isolated and pressurised. In forever hope Sue

David Salinas - 03/21/00 00:42:19
My Email:jojoda1992@hotmail.com
Where are you from?: I´m From México
Through which search engine did you find us?: WS Support Group by Simon Foden

Comments:
I have a baby girl she is 4 months old, she has west syndrome, recently my Wife Betty and I attendent with a fisisian Doctor, but we need to know how we can help our baby, we need to know more about this syndrome, ¿could you please send me more informatio , please? I will appreciate your valuable support, (my english is not good but I can try to do my best effort, ok) Kindly regards for you and for Eddie. David & Betty Salinas

Dr. Cesar calva-Pellicer - 03/20/00 17:34:00
My Email:ccalva@prodigy.net.mx
Where are you from?: MEXICO City
Through which search engine did you find us?: Yahoo

Comments:
As a 73 year old physician I have 55 years of study in order to help patients truthfully. The fact that even Evidenced Based Health deepend on statistically proven truth, this means that on the basis of that CONVENTION, physicians leave 5% for God to ent r in the treatment. Your Page is marvelous. It proves statistically based Medicine to be a predetermined agreement that will provide all new drug treatments a means to undeniably (on the pre-agreement principle) to be undeniably true. You page of hope nters the 5% of any disappointing information you may have been given. It helps me greatly to give and have hope of such a saddening syndrome. I congratulte you from the bottom of ny heart. Give Eddie my love, please forgive my error and receive my best wishes for Eddie

Dr. Cesar calva-Pellicer - 03/20/00 17:32:36
My Email:ccalva@prodigy.net.mx
Where are you from?: MEXICO City
Through which search engine did you find us?: Yahoo

Comments:
As a 73 year old physician I have 55 years of study in order to help patients truthfully. The fact that even Evidenced Based Health deepend on statistically proven truth, this means that on the basis of that CONVENTION, physicians leave 5% for God to ent r in the treatment. Your Page is marvelous. It proves statistically based Medicine to be a predetermined agreement that will provide all new drug treatments a means to undeniably (on the pre-agreement principle) to be undeniably true. You page of hope nters the 5% of any disappointing information you may have been given. It helps me greatly to give and have hope of such a saddening syndrome. I congratulte you from the bottom of ny heart. Give Dennie my love

Tarnesia - 03/19/00 17:00:58
My Email:Davante@aol.com
Where are you from?: Florida
Through which search engine did you find us?: Alex's story

Comments:
I have an 8month old daugther who at 4months old was diagnosed with cortical dysplasia. In the beginning everything was fine, but now we see development delays and more frequent seizures. the doctors are now thinking about surgery. I question is surgery t e best option. Overall she is doing well, therapy is a big help, but I can't stand to watch my child have seizures. I pray and ask to show me the right way and pray that she will be okay.

Eilis Manning - 03/06/00 23:43:52
My Email:eilismanning@aol.com
Where are you from?: N Ireland
Through which search engine did you find us?: AltaVista

Comments:
I searched the other night using my favourite -AskJeeves with no success. Tonight I decided to give it another go and bingo, success first go. We are going to be helping to look after a little one with West's Syndrome (shared care) and there is little o nothing known about it here. The social workers have very little information, so I was really excited to find your site. Be in touch again.

Kelly Bacci - 02/28/00 05:45:09
My Email:1kbar@gte.net or krzdd@aol.com
Where are you from?: Port Richey Florida
Through which search engine did you find us?: gte

Comments:

Loretta Owings - 02/27/00 01:55:35
My Email:owings80@aol.com
Where are you from?: Lexington, SC
Through which search engine did you find us?: aol.search

Comments:
My son has another diagnosis, however, he had infitle spasms when he was about 14 mos old. He was treated with ACTH and has not had any more.

george sadak & hany zaky - 02/26/00 15:55:22
My Email:hanyzakyh@hotmail.com.
Where are you from?: alexandria, Egypt
Through which search engine did you find us?: west syndrom

Comments:
Me&my friend hany would like to know more about eddie as we are currently intersted with west syndrom. As it began to be noticed in alex., any information will be helpful&will be thankful. JESUS loves you all&i am sure he will help you. At last for this time only,we hope to be your friend. George&Hany

george sadak & hany zaky . - 02/26/00 15:36:31

Comments:

Gail Biancucci - 02/18/00 04:29:47
My Email:none yet
Where are you from?: Beverly, MA
Through which search engine did you find us?: I came through Alex's story

Comments:
Thank you so much for your story. I also have a little boy who is 3 1/2 with seizures. He has atonic drop seizures and now we are just learning what we are seeing may also include infantile spasams. He is on the Ketogenic Diet and right now Lamictal an still having 40-60 seizures per day. We are just now contacting Dr. Cugnani and bracing for what's ahead. Thank you for such a positive web page on a night I'm having a little trouble being positive. I wish your family good luck and lots of good thing ahead. Gail

Dana Shepherd - 02/13/00 14:15:22
My Email:DanaShepherd@aol.com
Where are you from?: Indianapolis area
Through which search engine did you find us?: AOL search

Comments:
My son has the same symptoms of dropping his head and is being tested in a few days for infantile spasms. I'm glad to know that there is some hope of Gavin Ray Shepherd to grow up and be a good person. Thanks for your story. Dana

Donna Sherman - 02/09/00 21:38:36
My Email:sherman@axcs.net
Where are you from?: SSI
Through which search engine did you find us?: favorites

Comments:

Rebecca Young - 02/05/00 22:32:32
My Email:RBCYOUNG@AOL.COM
Where are you from?: smithfield.N.C.

Comments:
I also have a daughter that developed i/s at the age of 6mon. She is now 11 yrs. old. Her spasms were stopped with ATCH until she turned 6 and they came back as grandmal. Casie is my daughters name and she is very develope mentally delayed.She get's thera y everyday,but she can't walk, talk, or do any fisical activities, but she understands everything thats going on,and answers you with eye gazing or jestures.The doctors cannot find any reson why Casie had the i/s or why she is so delayed other than the sp sms settled in her muscles leaving her with palsy. Im looking someone that has the same condition and might have some new info.

vladimir ivan - 02/03/00 05:14:23
My Email:givq@aol.com
Where are you from?: california

Comments:
Thank you for sharing your experience with us. My son Andrew is diagnosed with the same disease this week, and he is only 3 months old. Please keep us posted with your progress. Good luck! We would like to contact to you if it is okay with you. Thank you! Vlad

Takashi tsuchimoto - 02/03/00 04:16:34
My Email:tkstcmt@aol.com
Where are you from?: Japan
Through which search engine did you find us?: YAHOO

Comments:
I have twin.One of them is west syndorome.

Lynda Bennett - 02/01/00 21:17:29
My Email:lyndaben@home.com
Where are you from?: Vancouver, BC, Canada
Through which search engine did you find us?: excite

Comments:
Your story helped me smile on a lousy day. My daughter Kira , 8 monhs old, still is having IS. She had gone 3 days this week without having a seizure until this morning. After the seizure is over, we cuddle, she sleeps and I cry - then we carry on. I h pe her future is like Eddie's - hopeful.

candi - 02/01/00 02:32:24
My Email:ckschempp@aol.com
Where are you from?: WV

Comments:
I spoke to you over the phone about a year ago. Congrats on your new one. Allison will be three in May. She is seizure-free, but still a loosy-goosy. She took a few steps on her own, but has given up again. I guess it will happen when she is ready! ( his is only my 2nd day online!)

brian stamm - 01/29/00 04:40:40
My Email:debts5@yahoo.com
Where are you from?: sandy oregon
Through which search engine did you find us?: health

Comments:
my son has west syndrom.it was nice to find your page to know i'm not alone.it is rough not knowing what to expect next.my son just turned six and does not walk,crawl,or talk.so my blessing go to you.

Kim McDonald - 01/25/00 06:43:49
My Email:ckk@cora.net
Where are you from?: Huntsville, AL
Through which search engine did you find us?: webmd

Comments:
My son Kobe was diagnosed with infantile spasms in January of 1999. it has been a long hard road. Most of the doctors and the little information that we do find give us little hope, but thanks to web sites like yours, it gives us hope for the future. Than you.

- 01/25/00 05:58:56

Comments:

Jennifer Scott - 01/15/00 21:58:01
My Email:Jenscott32@hotmail.com
Where are you from?: Search West Syndrome
Through which search engine did you find us?: Yahoo

Comments:
My son has infantile spasms and I was just checking out the sites. Good luck with all you guys do!! There is a reason we are blessed with these little angels! Have faith and take one day at a time. Love, Jennifer

nicki clour - 01/07/00 04:18:15
My Email:clour@delanet.com
Where are you from?: new jersey
Through which search engine did you find us?: yahoo

Comments:
adorable child.

Rebecca - 01/04/00 18:06:27
My Email:zeesma@hotmail.com
Where are you from?: BC, Canada
Through which search engine did you find us?: Yahoo

Comments:
Thank you for the uplifting story. My son, Zachary, was diagnoised with Infantile Spasms Nov. 27, 1999. As soon as I found out, I immediately searched the net. It all looked so grime that I cried myself to sleep that night. I hope my story turns out as wonderful as your.

paolo pioppini - 12/30/99 22:58:23
My Email:papioppi@tin.it
Where are you from?: italy
Through which search engine did you find us?: yahoo

Comments:

Kim Wall - 12/23/99 04:07:07
My Email:kwall@ns.sympatico.ca
Where are you from?: Dartmouth, NS, Canada
Through which search engine did you find us?: WebFerret (AOL Web find)

Comments:
Granddaughter diagnosed @ 5 mths. Just starting the long haul. The where I found you follows. Thanks Re: Infantile spasms..Under control? Ellen Sherman 14:22:52 12/08/97 (0)http://www.neuro.wustl.edu/wwwboard/newmessages/2277.html

Lisa Ruigrok - 12/10/99 20:18:26
My Email:ruigrok@HHSC.ca
Where are you from?: Ontario, Canada
Through which search engine did you find us?: yahoo

Comments:
What a darling little angel! So Cute. Love the name too.

Ramon Torras Toll - 12/02/99 23:07:57
My Email:25281rtt@comb.es
Where are you from?: Spain
Through which search engine did you find us?: News treatments

Comments:
Do you have information about the cranial osteopathy treatment? Thank you in advance!! Best regards!! Ramon

Lori Dioguardi - 12/02/99 05:33:26
My Email:dio@worldnet.att.net
Where are you from?: N.J.

Comments:
Thanks for your very positive story. It gives us hope.

- 11/21/99 07:03:11

Comments:

Juli Bick - 11/20/99 03:57:47
My Email:lionelbear@aol.com
Where are you from?: Indiana
Through which search engine did you find us?: Yahoo

Comments:

grand e - 11/15/99 00:22:38
Where are you from?: orange park,fl
Through which search engine did you find us?: who knows?

Comments:
WHAT A BEAUTIFUL BABY.I'LL BET HER GRAND E WAS THERE AT OCALA TO SEE HER & LOVE HER.......

marlon - 11/14/99 20:02:45
My Email:dracula02@hotmail
Where are you from?: barbados
Through which search engine did you find us?: yahoo

Comments:
it was a very touching story I wish you my best

Ulla-Maija Martikainen - 11/08/99 22:55:32
My Email:ulla-maija.martikainen@kajaani.fi
Where are you from?: Finland

Comments:
It's comforting to find mothers who have energy to share information and also feelings. We have had a terrible year with our son Topi's spasms. Nothing seems to stop the seizures.

Catherine Robinson - 11/06/99 13:32:40
My Email:camarobins@aol.com
Where are you from?: Lancashire, UK
Through which search engine did you find us?: Netfind

Comments:
Thanks. My sister's 9day old baby, Daniel, exhibits the symptoms you describe in Eddie. She is currently devastated, as are all the family. Stlii greiving, I suppose for the image of how it would all be. So far he appears an idiopathic case, but it is early days. We are all hoping. Eddie's story has helped me and I shall print it for my sister.

Raffi and Tina - 11/03/99 16:53:28
My Email:Josephg@dellnet.com
Where are you from?: Orange County, Ca
Through which search engine did you find us?: Yahoo

Comments:
Thank you for your story about Eddie. Our son was diagnosed yesterday w/ IS at 11 mo' old.He has had a long road and we have a long one ahead. Joseph was born w/ heart disease, had open heart surgery June 99 & suffered a stroke. We are suppose to start acth in a week or so and are skeptical So far, slight delays while continuing PT/OT. We are very concerned about his development for the future. ALL COMMENTS ARE WELCOMED & APPRECIATED. God bless those of you w/ this type of situation. Like Eddies Mom says, it is sad to see a child going through this.

LaDonn - 11/03/99 07:13:15
My Email:LRB595
Where are you from?: Bennett Colo.
Through which search engine did you find us?: AOL Search

Comments:
Our daughter hasIS. She was diagnosed at 11mo. We had good luck onacth she had no seizures for 6 mo. but they returned . We have beeen battling her seizures for over 2 years now. We've tried depacote, lamictal, topamax ,the keto diet,sabril and now felbatol and clonzapam. I'm so glad to knowEdddie has 't had any delays. Katelyn has lost her speech and is developmentally delayed at a l year level. We pray that we'll find a solution. Thanks for sharing your sucess story. Ive been searching forever it seems for info. on infantile spasms. Thanks again. LaDonn

Crystal Kruse - 10/28/99 06:04:30
My Email:smiles_cmk@hotmail.com
Where are you from?: Spokane WA
Through which search engine did you find us?: Yahoo.com

Comments:
I have noticed in the last few days a very strange movement with my little Christina. It only started on Sunday. I noticed that she was dropping her head like a spasm. It only happend once but it worsened. I called her doctor and they sayed to bring her i right away. She did not do it while we were at the drs. office so they sent me to get an eeg done. It was normal. Then I was sent to see a pediatric neurology specialist. He said that it should go away in a few months. If it doesn't, he wants to see her gain. I am very worried about what I am reading about IS. I am also very scared. Christina is such a delightful and wonderful baby. She is almost 7 mo. old. I don't want her to have any disabilities. It would crush my heart. I'm so glad your little one is doing well. Thanks for the hope! Crystal Kruse, Spokane Washington

jordan ray - 10/22/99 23:58:42
My Email:jordanray@ocalanet.com
Where are you from?: toybrary/playroom

Comments:
hi!! this our first night on the internet. of course we looked up eddie and jordan ray's page.i have got to update jordan's this week so you can put it in when ya'll return from kentucky. jordan was so excited to see eddie and his own picture on the compu er! see ya

Laura - 10/21/99 04:59:15
My Email:forauld@bconnex.net
Where are you from?: Canada
Through which search engine did you find us?: Yahoo

Comments:

erin varano - 10/19/99 00:13:24
My Email:www.rvarano.com
Where are you from?: plainville ct

Comments:
i think that this is so nice that he is doing better

Marie - 09/30/99 19:19:52
My Email:sloughster@juno.com
Where are you from?: Indiana

Comments:
My daughter is 7 mos old and we are in the weaning process of ACTH. We haven't seen a seizure since the 2nd shot and pray that we never see another one. She also has DS but was developing normally until these seizures. We are just now starting to get ou little girl back!!

geert karssemakers. - 09/30/99 10:17:04
My Email:joskarssemakers@hetnet.nl
Where are you from?: netherland

Comments:

JOAN GRAMKE - 09/30/99 07:52:39

Comments:

Donna Sherman - 09/18/99 17:41:01
Where are you from?: St. Simons Island, GA

Comments:
Great work on the web page!

lee de mouilpied - 09/12/99 18:41:11
My Email:dadio150
Where are you from?: jersey c.i.
Through which search engine did you find us?: dont know

Comments:
thank you for giving me some hope my son dean has west syndrome he took ill at 6 months old and it took 9 months to find out what was wrong in that time me and his mum nicky split up becuase we had such a hard time we just driffted apart dean is now 3 and theres no change at all. he is the only child in jersey with west syndrome and it hard not being able to get infomation. ive just got my computer so im still learning how to us it i hope ive given enof info for you to write back it would be nice to hear f om someone who knows what were going thew sorry about the spelling from lee and dean

Alice Roberts - 09/12/99 02:09:54
My Email:vicentia@aol.com
Where are you from?: Texas

Comments:
My grandson has infantile spasms. Will be six months old 9/14/99.

Alice Roberts - 09/12/99 02:09:13
My Email:vicentia@aol.com
Where are you from?: Texas

Comments:

Alice Roberts - 09/12/99 02:08:05
My Email:vicential@aol.com
Where are you from?: Montgomery TX

Comments:
I have a grandson borm 3/14/99. Complications at birth. 8lb 14oz. Developed infantile spasms.

- 09/09/99 04:07:42
Where are you from?: atlanta
Through which search engine did you find us?: alex story

Comments:
Thank you so much for sharing your story. I am a parent of a baby who is having seizures. Unknown cause as of yet, undergoing test. It is so nice to be able to read your story and see that there is hope. It is also reassuring knowing that there are o hers out there and I am not alone in my worry and despair over such occurences. The worst is the unknown. I pray that your child will continue to do well. and Thanks again and God Bless.

Nathalie Bisson - 08/27/99 14:38:10
Where are you from?: Ottawa, Canada

Comments:
My niece has that Syndrom. Thank You

Kami Hartig - 08/27/99 00:43:19
My Email:kjmhartig@yahoo.com
Where are you from?: Arlington Hts. IL
Through which search engine did you find us?: yahoo

Comments:
Thank you for your help and inspiring story. I know you will continue to help and keep hope for others.

Kim & Francis Macgillivray - 08/26/99 01:42:07
My Email:kfmacgil@sprint.com
Where are you from?: Edmonton,Alberta
Through which search engine did you find us?: MSN

Comments:
Hi there, I think this is a wonderful place to be. My husband and I just bought our computer and I found this site in no time. I tried the internet a couple of years ago and go little info, so I think it's wonderful that you had the time to set this lin up for all of us to use. My son Patrick was born Sept. 27/96 normal in all respects. Pat had his first seizure on Dec 23/96. It wasn't til Feb. 1997 that he was diagnosed with IS. Patrick is almost three, and he does not talk, walk, crawl, sit up, or hold toys. Pat's seiz res are under control with depekene, and sabril. He really only has his grand mals when he is sick. Anyone out there with a similar situation?

Pasquale GIORDANO - 08/25/99 18:41:37
My Email:pakigio@iol.it
Where are you from?: MILANO,ITALY
Through which search engine did you find us?: YAHOO

Comments:
PLEASE, CONTACT ME. MY SON 8 YEARS OLD IS AFFECTED BY INCERTAIN CORTICAL DYSPLASIA MESIOTEMPORAL IN LEFT.

Melissa - 08/17/99 18:41:57
My URL:http://www.geocties.com/Wellesley/9891
My Email:LaFemRoyle@hotmail.com
Where are you from?: Mississippi
Through which search engine did you find us?: Internet Sleuth

Comments:
I myself found myself in a similar situation with my son Zachary. He's six now, but started experiencing infantile spasms right after birth. A week later he started having partial complex focal seizures. We just found out he has Cortical Dysplaysia. Surg ry is our only option. Thank you for your site.

Melissa - 08/17/99 18:39:45
My URL:http://www.geocties.com/Wellesley/9891
My Email:LaFemRoyle@hotmail.com
Where are you from?: Mississippi
Through which search engine did you find us?: Internet Sleuth

Comments:
I really enjoyed reading your story. I myself found myself in a similar situation with my son Zachary. He's six now, but started experiencing infantile spasms right after birth. The partial complex focal seizures came a week later. He took ACTH,Depakene, and phenabarbital with some results. The ACTH never really worked that well. We eventually took him off of that when he was about 2. Then he went into status for about 2 months around the age of 3 and during that time he was taken off the Depakene and pu on Tegratol, Clorazapate and Lamictal. We even tried the Ketogenic diet with no results. He never even went into ketosis. Now he is up to over 20 pills a day, he's developmentally delayed and we are still struggling for a solution. Just yesterday we fina ly discovered that Zachary had Cortical Dysplaysia. Our only option now is surgery. Thank you for putting up your site.

- 08/14/99 19:21:30

Comments:

Colby Lenz - 08/10/99 15:20:19
My Email:colby_lenz@hotmail.com
Where are you from?: new york/toronto
Through which search engine did you find us?: yahoo

Comments:
Thanks for sharing your story! I have a beautiful baby sister named Mercey who was diagnosed with IS at a few months of age. Mercey is now 3 years old, has been on every medication, been through just about every testing procedure and even tried the ketoge ic diet, and the seizures continue. So her development is way behind. My family's at a bit of a stand still so any suggestions/support would be more than welcome (colby_lenz@hotmail.com). Also, we're looking into a nerve stimulator program in Boston, does anyone have experience with this??

Carrie Dickson - 08/10/99 15:13:52
My Email:cdickson@worldnet.att.net
Where are you from?: Atlanta, GA

Comments:
My 14 month old daughter, Claire, has been diagnosed with West's syndrome. She also has Down syndrome, so she has been receiving PT, OT and Speech for almost a year. We were devestated to learn of her seizures. We were given the choice of ACTH or an ex erimental drug. She is on Klonapin until we decide what to do. I have heard horrible things about the ACTH. I am so lost and confused.

Amanda Aaronson - 08/09/99 04:00:52
My Email:aaronson@best.com
Where are you from?: Mt. View, CA
Through which search engine did you find us?: didnt', you sent it to us

Comments:
Nice page Ellen!

Nancy Allgood - 08/08/99 13:16:43
My Email:dreams2@erols.com
Where are you from?: Chesapeake, Va
Through which search engine did you find us?: Google

Comments:
My grandson was diagnosed 8 days with IS. We are waiting for the results of his blood tests and he is scheduled for an MRI on the 18th of Aug. You know all of the emotions that I am going through.

Phyllis Reed - 07/24/99 22:46:54
My Email:4phyl@home.com
Where are you from?: Pickering,On.Canada
Through which search engine did you find us?: Epilepsy-Kids list

Comments:
Great site! I have a son who has improperly diagnosed Epilepsy and I am in the process of getting a proper diagnosis. I know how difficult it can be for all of us. My son had his first cluster of seizures at 14 months and he is now almost 8 yrs. Best of luck to all of you. Great job on the web site.

- 07/22/99 10:20:02

Comments:

Gus & Shelly Davidson - 07/21/99 07:12:54
My Email:davig@pacificcoast.net
Where are you from?: Victoria BC Can
Through which search engine did you find us?: Alta Vista

Comments:
We are the proud parents of a 6 year old boy with West Syndrome. It is heartening to see others have dealt with the same things we have. Thanks for letting us see, we are not alone. Gus and Shelly Davidson and Connor too!

- 07/20/99 02:31:15

Comments:

Wendy Taube - 07/14/99 13:55:08
My Email:ezwen@dezzanet.net.au
Where are you from?: Australia
Through which search engine did you find us?: altavista

Comments:
This is a very enlightening and encouraging Web Site. Thankyou for sharing your experiences. My daughter Claudia (5 months) was recently diagnosed with IS (09\07\99), so everything is very new and overwhelming to us. You are right, it is a very lonely nd scary time!

Heidi Lund - 07/13/99 11:43:07
My Email:heidilund@excite.com
Where are you from?: San Diego, CA
Through which search engine did you find us?: Cannot recall

Comments:
My daughter, Lisa, was diagnosed with IS at 7 months of age. At the same time the MRI showed a lesion in left side of brain (low-grade tumor or cortical dysplasia). Has been seizure free from 6 months on Vigabatrin, but are now starting to have partial eizures (infrequently, hard to detect). She is doing quite well, will have developmental evaluation next week. May be put on additional medication depending on frequency of seizures or Vigabatrin will be increased. This web-page has been of great comfo t to me, thank you!

- 07/06/99 20:21:45

Comments:

Dragan & Suzana Dimitrovi - 07/06/99 20:21:07
My Email:finko@mpt.com.mk
Where are you from?: Macedonia
Through which search engine did you find us?: yachoo

Comments:
We are very satisfied that you have disclosed this story on internet. We think that it maight help to lot of parents and children through exchange the experiance. Our douther has also Sy. West that appair when she was 1 1/2 year old. Now she is receiving he teraphy consist of Sabril and ATCH (Hidrocortizone). This therapy is succesefull and stop the seizures and enable normal development. We are very greathfull to Prof. Olivier Dulac from the Children Hospital in Paris, France. Wish all the best for children that suffer from the epilepsy.

Janet - 07/04/99 01:04:57
My URL:http://www.geocities.com/Wellesley/Atrium/1911
My Email:betjet@yahoo.com
Where are you from?: MD
Through which search engine did you find us?: Infoseek

Comments:
My 4 month old nephew started to have seizures 3 days ago and the doctors have yet to witness it. Just checking out the possible concerns for my brother-in-law and his wife. Thanks for the info and the visually appealing site.

Karen Johnson - 07/03/99 13:45:08
My Email:zappa19@gateway.net
Where are you from?: Massachusetts
Through which search engine did you find us?: Yahoo

Comments:
My son, Tyler, was diagnosed with IS at 3 months old and is now 10 months. He is currently on treatment with Vigabatrin for his seizures. He still continues to have them upon waking, but his development up to this point has not been effected according t his interventionist. I enjoyed reading your son's story and it has given me hope.

Chris Murphy - 07/01/99 03:11:56
My Email:TheMurphy4@aol.com
Where are you from?: Lee's Summit, MO

Comments:
We are in the beginning stages of dealing with IS in our 13-month old son and are so unsure of his future. I find it so hard to stay positive about this and remain hopeful. He is currently at the 5-6 month developmental level and cannot support his head neck or trunk very well. He does not grasp at toys and has also been diagnosed with Cortical Visual Impairment. He never smiles and I'm not sure if he's ever seen me. It has helped to read yours and other hopeful stories though. Please feel free to e ail me if you can. Thank you!- Chris Murphy

Mr. & Mrs Jarvis Espinosa - 06/21/99 23:24:02
My URL:http://chacojar@cs.com
Where are you from?: Queens New York
Through which search engine did you find us?: compuserve 2000

Comments:
Our son Jarvis-Michael, also suffers from infantile spasms but have developed into tonic-clonic seizures. We have been on every drug imaginable, he is also hypotonic and developmentally delayed. Do you have any suggestions. He has been extremely tested and no etiology. He just received a Tracheaostomy because prolonged seizures caused respiratory distress. Thank you and God Bless.

linda vigil - 06/18/99 16:51:18
My URL:http://www.uswest.net
My Email:klvgil@uswest.net
Where are you from?: albuquerque NM
Through which search engine did you find us?: don't knwo

Comments:
We have an 11 week old grandaughter that has been diagnosed with cortical blindness and west syndrome. She and her mother live with us and this has just been diagnosed withing the last week. It is frightening and the seizures cause her to cry and we canno believe that they do not hurt her as the doctors have indicated. She starts on the ACTH next week and she will be on it for 6 weeks. The neurologist is hopeful that the ACTH will stop the seizures.

"Auntie Di" Persall - 06/16/99 17:49:22
My URL:http://www.geocities.com/heartland/ranch/3854/dianne.html
My Email:diannep@bigfoot.com
Where are you from?: Clearwater, FL
Through which search engine did you find us?: Ellen's Amazing Search World

Comments:
Congratulations! I can't believe that head of hair! What a cutie! We're so proud of you! Love, Dianne & Steve

Clara Hurtado - 06/07/99 19:55:01
My Email:churtado@solar.sar.net
Where are you from?: Mexico City

Comments:
Hi! I´m a speech therapist. I had just started working with Gerardo, he is a 2 year old boy with West Syndrome. His mother, teachers and I are really concern about his treatment. We don´t have enough information about the characteristics of the Syndrome. an you help us?. Thank you very much. Sincerely, Clara

Clara Hurtado - 06/07/99 19:50:34
My Email:churtado@solar.sar.net
Where are you from?: Mexico

Comments:
Hi! I´m a speech therapist. I work with another 3 therapists trying to stimulate a 2 year old boy whose diagnosis was West Syndrome. We don´t have much information about the characteristics and the needs of Gerardo (the 2 year old boy). We really need som advice and his mother needs a lot of encouragement. Hopefully we could be in touch. Thanks for your help.

Mrs. Elham AbuNameh - 06/07/99 06:21:32
My Email:zezy97@yahoo.com
Where are you from?: Jordan
Through which search engine did you find us?: Yahoo

Comments:
I would like to wish all the best and the good luck to Eddie in his life. I would like to say that you are the best mother and the best father on this earth. I have a son (10 months), we discovered that he has West Syndrome when he was (8 months)and he is taking medication to stop these siezers, he is taking Depakine, Sabrilan, Revotril and Corotrope with Trainings (Phisical Thereby). He is little bit better ut as you already know that it will take along time and we hope that he will be fine. Best regards, Elham AbuNameh P.O.Box: 184105 Amman 11118 Jordan

Mrs. Elham AbuNameh - 06/07/99 06:19:39
My Email:zezy97@yahoo.com
Where are you from?: Jordan
Through which search engine did you find us?: Yahoo

Comments:
I would like to wish all the best and the good luck to Eddie in his life. I would like to say that you are the best mother and the best father on this earth. I have a son (10 months), we discovered that he has West Syndrome when he was (8 months)and he is taking medication to stop these siezers, he is taking Depakine, Sabrilan, Revotril and Corotrope with Trainings (Phisical Thereby). He is little bit better ut as you already know that it will take along time

Claudia & Bill - 06/06/99 02:32:51
My Email:bjmst34@pop.pit.edu
Where are you from?: Pittsburgh
Through which search engine did you find us?: netscape

Comments:
Hi Ellen, I couldn't find your email address so I went to Eddie's web page. So sorry that I haven't been in touch sooner. I know you are having a new addition to the Todd family. Please let me know when the new baby arrives. I will send a note or try to call so n. Take care and give Eddie a big hug from us!

Claudia & Bill - 06/06/99 02:32:21
My Email:bjmst34@pop.pit.edu
Where are you from?: Pittsburgh
Through which search engine did you find us?: netscape

Comments:
Hi Ellen, I couldn't find your email address so I went to Eddie's web page. So sorry that I haven't been in touch sooner. I know you are having a new addition to the Todd family. Please let me know when the new baby arrives. I will send a note or try to call so n. Take care and give Eddie a big hug from us!

jim meitz - 06/04/99 14:12:29
My Email:jmeitz@kemperinsurance.com
Where are you from?: grand rapids, michigan

Comments:
I have a 3 month old son that has been diagnosed with i.s. He is taking Vigabatrin at this time and seems to be doing well. His latest eeg's were really improved. Will be having more next week. He still tends to look to the right alot. Any experience with that? It is great to read such a positive story. God Bless!

jim meitz - 06/04/99 14:12:17
My Email:jmeitz@kemperinsurance.com
Where are you from?: grand rapids, michigan

Comments:
I have a 3 month old son that has been diagnosed with i.s. He is taking Vigabatrin at this time and seems to be doing well. His latest eeg's were really improved. Will be having more next week. He still tends to look to the right alot. Any experience with that? It is great to read such a positive story. God Bless!

jim meitz - 06/04/99 14:12:05
My Email:jmeitz@kemperinsurance.com
Where are you from?: grand rapids, michigan

Comments:
I have a 3 month old son that has been diagnosed with i.s. He is taking Vigabatrin at this time and seems to be doing well. His latest eeg's were really improved. Will be having more next week. He still tends to look to the right alot. Any experience with that? It is great to read such a positive story. God Bless!

Samantha Gorry - 06/03/99 17:34:52
My Email:gor@indigo.ie
Where are you from?: Ireland
Through which search engine did you find us?: ICQ

Comments:
We would like as much information as we can get on Wests syndrome thank you all.

Lisa Tobe - 06/02/99 17:04:26
My Email:tobe@pchealth.net
Where are you from?: Quincy, CA

Comments:

Janet Hammond - 06/02/99 02:48:49
Where are you from?: Washington, D.C.
Through which search engine did you find us?: ellebelly

Comments:
Looking good, what a set of hair, call the stylist Thanks for calling me as soon as she came into this world A soon to be DG in the works// gotta start them early Can't wait to see her-adorable family picture with love your pledge grandmother

GRAND E - 06/02/99 00:52:55
Where are you from?: ORANGE PARK,FL

Comments:
WHAT A BEAUTIFUL BABY...SHE MUST HAVE HANDSOME GRANDPARENTS ON THE SHERMAN SIDE!!!JUST KIDDING..HER GREAT-GREAT GRANDMOTHER FLORENCE LILLIAN EARLY WHITE WAS BORN OCTOBER 15,1866 IN GREENE CO.,VA;MARRIED WM ANDERSON WHITE,SON OF WM.ANDERSON WHITE & SUSAN P ULINE ROTHWELL.SHE DIED APRIL 1,1930 AT BEALETON,VA. HER SON THOMAS ONSLOW WHITE,BORN JUNE 19, 1890 WAS HER GRAND E'S FATHER...WHAT A LINEAGE!EWS

GRAND E - 06/02/99 00:52:05
Where are you from?: ORANGE PARK,FL

Comments:
WHAT A BEAUTIFUL BABY...SHE MUST HAVE HANDSOME GRANDPARENTS ON THE SHERMAN SIDE!!!JUST KIDDING..HER GREAT-GREAT GRANDMOTHER FLORENCE LILLIAN EARLY WHITE WAS BORN OCTOBER 15,1866 IN GREENE CO.,VA;MARRIED WM ANDERSON WHITE,SON OF WM.ANDERSON WHITE & SUSAN P ULINE ROTHWELL.SHE DIED APRIL 1,1930 AT BEALETON,VA. HER SON THOMAS ONSLOW WHITE,BORN JUNE 19, 1890 WAS HER GRAND E'S FATHER...WHAT A LINEAGE!EWS

Grand dad - 06/02/99 00:31:19
My URL:http://What does this mean
My Email:dwsherma@MediaOne.net
Where are you from?: Jax
Through which search engine did you find us?: Mr. Inmail

Comments:
Congratulations: The Pictures are excellent. Best wishes to all the Todds, and especially baby Jane L. Love, Dad

Aunt Rachy - 06/01/99 23:22:40
My Email:Rsscan
Where are you from?: Kentucky

Comments:
Jane is beautiful!! Wow- that head of hair is incredible- y'all were not kidding when you said she had a lot of dark hair. She is amazing. Madeleine absolutely cannot wait to meet her! We will have a ball in July. Ed, please bring video of her and li ' Eddie interacting when you come for Daph's wedding. Ellen, you look gorgeous. Now way you just had a baby!! Take care, we love you! Love, Aunt Rachy, Uncle Scott and Cousin Madeleine

Laura Cobham - 05/31/99 13:43:06
My Email:oxford93@hotmail.com

Comments:
How about some stats? Height, weight, time for the 40 yard dash? She's beautiful, send more pictures. You and Ed have not changed a bit. Love, Laurabatson

Marie Cummings - 05/31/99 04:52:40
My URL:/HotSprings/Villa/3429
My Email:woodstitch@foxinternet.net
Where are you from?: IS Moms Support Group
Through which search engine did you find us?: N/A

Comments:
Welcome to the world, baby Jane! Everyone looks happy and healthy, for which I am very grateful! Ellen, we've missed you on Wednesday nights, and look forward to hearing about Jane's progress in weeks (months?) to come! Congratulations, one and all! Eddie, you will be a great big bro!

Marie Cummings - 05/31/99 04:52:29
My URL:http://www.geocities.com/HotSprings/Villa/3429
My Email:woodstitch@foxinternet.net
Where are you from?: IS Moms Support Group
Through which search engine did you find us?: N/A

Comments:

Daphne and Don - 05/30/99 05:30:50
My Email:DHOS619@aol.com

Comments:
Hey y'all! Congratulations! Little Jane is so adorable-she has so much hair! What a wonderful addition to the family! We love y'all tons and tons! I feel so privaledged to be an aunt to such a wonderful and special little gift from God! Don, as her fut re uncle, feels the same also! We miss and love y'all tons and tons and make sure to give Jane and Eddie lots of smootchies from us! Love Always, Daphne

GREAT Aunt Genie - 05/29/99 19:07:54
My Email:jon@pdq.net

Comments:

Kam - 05/29/99 16:45:56
My Email:kmaccrum@icubed.com
Where are you from?: Pittsburgh!!!!!!!
Through which search engine did you find us?: Netscape

Comments:
Beautiful baby, guys!!!!! Congratulations! Love Kam

great aunt genie and gang - 05/29/99 14:51:18
My Email:jon@pdq.net

Comments:

great aunt genie and gang - 05/29/99 14:50:43
My Email:jon@pdq.net
Where are you from?: family

Comments:

Chrissy - 05/18/99 05:19:50
My URL:http://mypage.goplay.com/lilcrystal/
My Email:lilcrystal@hotmail.com
Where are you from?: New Jersey--USA
Through which search engine did you find us?: Yahoo

Comments:
I was so amazed at this page and at your sons amazing story--I was simply searching for my friends page and happened upon yours!As a mother of three kids--I can only say I have so much to smile about, your story will keep me grinning all day now.I will ch ck back to hear more about your amazing family.

Tim Martinez - 05/17/99 02:19:30
My Email:TMart38729@aol.com
Where are you from?: Albuquerque, NM
Through which search engine did you find us?: aol

Comments:

Tim Martinez - 05/17/99 02:18:29
My Email:TMart38729@aol.com
Where are you from?: Albuquerque, NM
Through which search engine did you find us?: aol

Comments:

Emma Catanzaro - 05/05/99 01:12:12
My Email:catanzaro@worldnet.att.net
Where are you from?: Rhode Island

Comments:
Hi Ellen! Eddie's page looks so different than the last time I visited! Nice and colorful. Please continue to update me and I'll do the same with Alex's progress.

Terry Tradewell - 04/17/99 20:05:15
My Email:jttradewell@seimicro.net
Where are you from?: Myrtle Creek, Oregon
Through which search engine did you find us?: www

Comments:
I have a grandson who is 10 mos's old. He began having IS shortly after receiving a booster shot. Could this be related to his seizures? He wound up in Loma Linda University Hospital for 5 days, only to discover that he had hypsarithmia. Later when we wen to our own pediatrician and nurologist, they agreed that he no longer had the hypsarithmia, just myclitonic seizures. He was placed on Phenobarbital, to no avail, then was put on 3 1/2 mls 3 x daily of depakane. His seizures are less frequent and not as evere, but i am concerned that the medicine is not solving the problem! I have read all of the letters from other parents, regarding ACTH, and the ketogenic diet. What is this diet? Are there any solutions to solving this problem. Jeffery is 10 mo's old a d still has a hard time holding his head up, can not crawl, although he is trying, and can't sit up either. We are starting the early intervention program next month. Does it help? My grandson lives with me and i just love him so much. He does squak alot nd is very alert, and recognizes everyone, but he doesn't seeem to be gaining weight. He's barely 15.6 lbs, and weighed 7.6 oz at birth. He doesn't seem to want to eat alot, he can only manage about 3-4 bottles a day, and doesn't seem to want to nurse muc anymore. What can we do to help him and will he outgrow this as the BEST NUROLOGIST in our area seems to think? Thanks for letting me visit the web site, and for knowing that it it wasn't our fault, and that we're not alone in this!

marianne brewer - 04/17/99 09:41:03
My Email:christiaanbrewer@hotmail.com
Where are you from?: kuwait
Through which search engine did you find us?: altavista

Comments:
Thank you for your very informative page. I sincerely wish both you and Eddie all the very best. I am originally British, but am currently employed by a school in Kuwait, of which, a section is specifically designated for children with special needs. One f our children has West Syndrome and this page will most certainly help us, in the unit, gain a greater understanding. My thanks and wishes once again. If you have any further information, or would in any way wish to contact me, please don't hestitate to o so. Yours, Marianne Brewer.

Ann Baker - 04/09/99 15:50:53
My Email:AMB6420.@ssustudent
Where are you from?: salisbury, Md.
Through which search engine did you find us?: Yahoo

Comments:
My Nephew was diagnosed with West's syndrom Two Years Ago. He is now a healthy three year old. He has out-grown the spasms. Austin (My Nephew) Had to have surgery after comming off of the ACTH. The medication ate away part of his intestines. Otherwise the treatement was a sucess. Good Luck To Eddie In The Future!

Lisa Ruigrok - 04/08/99 20:25:56
My Email:ruigrok@exchange1.cmh.on.ca
Where are you from?: Hamilton, Ontario
Through which search engine did you find us?: yahoo

Comments:
Hi Ellen No doubt I have signed the guest book before, but I have some new info about my daughter's IS, and I am frantic looking for answers. Your story is very insightful. Eddie looks so cute dressed up like po. Alexandra ( my daughter) loves La La. Question: What test showed Cortical dysplasia? What exactly is it? It sounds like Eddie is doing well, I love to read these stories of hope. I also rely on the "plasticity" theory.

Pat - 04/06/99 23:52:22
My Email:Rawhi9de194@aol.com
Where are you from?: Kirksville, MO
Through which search engine did you find us?: aol netfind

Comments:
My grandaughter may have something similar to this - or perhaps exactly this - she gets her EEG on Thurs. - so this was very interesting reading for me!!

Melissa Sanders - 03/28/99 03:49:51
My Email:mrslizzerd@hotmail.com
Where are you from?: Georgia (Sharpsburg)
Through which search engine did you find us?: Yahoo

Comments:
My sister's baby (Melissa) was diagnosed with infantile spasms at 5 weeks old. Melissa is now 8 months old. She has been taking medicine for spasms since been diagnosed and has not had one since. I am going to have my sister write to you. Maybe you ca answer some of her questions. My sister goes through spells of being depressed and fear that Melissa is going to have a spell again. It is comforting to know there is someone to talk to and who can relate to similar situations. Your story is hopeful and Eddie is a beautiful boy. Thanks for sharing. Melissa Sanders

Katie Branigan - 03/27/99 03:23:53
My Email:Hunkyboots@aol.com
Where are you from?: Philadelphia, PA
Through which search engine did you find us?: brother searching web

Comments:
I'm a mother of a beutiful 15 month old boy who has infantile spasms. Less than six months ago I went down this very difficult road. Now my baby is getting better everyday. I know that the future is bright and that my whole family has been blessed with our little Johnnybear.

rosalyn deckerhoff - 03/25/99 00:40:55
My Email:rbd18
Where are you from?: tallahassee, fl

Comments:

jr - 03/19/99 04:26:05
My Email:jrosen2222
Where are you from?: new york

Comments:
It is amazing how Eddie is normal even thought he has the dysplasis. My son Elliot has had infantile spasms also since he was 6 months. He is now almost 3 and we cant get control. He also has bilateral dysgenisis. Your story gave me a lot of hope

JR - 03/19/99 04:21:29
My Email:Jrosen2222

Comments:

Mr. Kelley Rozof - 03/16/99 00:48:22
My Email:In2Rent@aol.com
Where are you from?: Columbia SC
Through which search engine did you find us?: http:

Comments:
My little brother Chris / Jane and son Mathew at 8 months are dealing with this now. I hope and pray as u do non stop. Hang n there! Kelley :>(

Amy - 03/09/99 03:44:46
My Email:LoveBird5@aol.com
Where are you from?: Michigan
Through which search engine did you find us?: aol

Comments:
Thank you for telling your wonderful story of hope. My 6 month old son Brendan, was diagnosed with infantile spasms today. Because of stories like yours, I have a temendous amount of hope, that I never thought I could have in a situation like this. Tha k you very, very, much! P.S. Eddie is adorable

Vickie M. Davis - 02/21/99 04:10:46
My Email:VickieD1@aol.com
Where are you from?: Chesterfield, Va.
Through which search engine did you find us?: AOl\Microsoft Internet Exployer

Comments:
Thank you for your story. My great nephew has just been diagnosed with infantile spasms and I know we are in for a long hall. He is seven months old and this has truly been a nightmare for my 18 year old niece. God bless you and your family.

roxanne ferrise - 02/18/99 00:08:18
My Email:ferrise@gate.net
Where are you from?: Jensen Bch, FL
Through which search engine did you find us?: yahoo

Comments:
I am a pediatric occupational therapist and I have been treating a little guy with IS for approx. one year. Thanks for your story about Eddie and I'm so happy for you that he is doing so well.

KristenGren - 02/12/99 21:30:02
My Email:kagreen59@hotmail.com
Where are you from?: auburn new,york
Through which search engine did you find us?: infantile spamnm

Comments:

mary - 01/29/99 05:48:01
My URL:http://marehr@aol.com
My Email:marehr@aol.com
Where are you from?: Hood River, Or
Through which search engine did you find us?: West Syndrome

Comments:
I work for an early intervention program and have a child with a possible diagnosis of West Syndrome. I want to learn more about it. Thanks.

Barbara Peet - 01/27/99 19:07:19
My Email:Barb_Peet
Where are you from?: Camas,Washington
Through which search engine did you find us?: www.yahoo.com

Comments:
I have a son who is now 13 yrs old. And he has West syndrome: He was 2 months old when he started to have seizures June of 1985 he had a EEG done on him that when the doctors told me he had seizures. Douglas has a older brother raymond micheal and he has the same thing but his are much worse. The doctors told me that 75% chance for a boy to have this and 25% change for a girl to have it and what are the odds for me to have two sons with the same thing.

C.Myers - 01/25/99 04:13:30
My Email:cmyers2346@aol.com
Where are you from?: Macomb Twp, MI

Comments:
My daughter, Stephanie, was diagnosed at 6 months with infantile spasms. We just started our second round of ACTH this weekend. I'm hopeful that this will work. I have been searching for information on infantile spasms and also looking for any sort of su port groups and I am so happy I stumbled across yours tonite. I will try to join in on a Wednesday night chat. I have many questions for parents who have or are going through this same thing.

Francesca Colitto - 01/23/99 12:57:41
Where are you from?: Italia

Comments:
I'am a student in medicine , my thesis subject is West Syndrome. I learned a lot from Eddie's story. Thank you!

- 01/19/99 13:49:18

Comments:

- 01/19/99 13:49:17

Comments:

Christopher Whiten - 01/17/99 21:02:05
My Email:cbwhiten@jobe.net
Where are you from?: Fort Leonard Wood,MO
Through which search engine did you find us?: Yahoo

Comments:
Thanks for your web page and webring, Our child is diagnosed with an encephalocele.

Umberto VIANELLO - 01/14/99 09:06:09
My Email:uvianel@tin,it
Where are you from?: LA SPEZIA (ITALY)
Through which search engine did you find us?: YAHOO

Comments:
Your web page makes me happy to know that there is hope to solve such terrible problems. I'm studing about the west syndrome, so please do you know if there is a web site where I can find more information about this desease? Thank youy very much Umberto VIANELLO

Lisa - 01/12/99 03:02:01
My Email:tim_zrinski@bc.sympatico.ca
Where are you from?: Williams Lake. BC.Canada

Comments:
Our 4th son has IS. Our story is much the same as everyone's. Lots of meds, doctors, tests. Kevin sezed for 10 mon. He is now 3 years old and his development is an all around 1 year old. This web was great to find. I have had no comunication from other pa ents in this area. What I was looking for is where his development will go? But only time will tell. I guess. This is a great web and hope to hear from others. Thank you. PS. IS was finally stoped by ATCH.

Shannon Bottorf - 01/08/99 21:52:39
My Email:sdf@acsworld.com
Where are you from?: pennsylvania
Through which search engine did you find us?: yahoo

Comments:
my son was recently diagnosed with infantile spasms and began ACTH injections 1/8/99.

lu leach - 01/06/99 07:54:15
My Email:t.leach@ukonline.co.uk
Where are you from?: cheltenham
Through which search engine did you find us?: netscape

Comments:

Click here to see the 1998 entries in Eddie's Guestbook.

Click here to see the 1997 entries in Eddie's Guestbook.

Click on the Tubbie Sun to go home.

Get your own darned free homepage

Teletubbies and the distinctive likenesses thereof are trademarks of Ragdoll Productions Ltd.

Take A Tour