sad update on my grandson, Ethan

[Rhea]

well, I guess it's maybe time to update on my grandson, Ethan. He's now 7 months old, and 3 days ago was dx with infantile spasms (West's syndrome). We are devastated, needless to say. The hardest thing, (well, not the hardest) is that my first daughter died from this. Lightning struck twice, and no one knows how or why. We thought we knew why my daughter was handicapped, and after all these years, find out that it was wrong. I know what is ahead for him. My heart grieves for my daughter and him. I've seen this movie before-- and it NEVER ends well. I don't know where to go from here. To see him spasm, and remember what it was like to hold my own when she did, sometimes I don't know how I will be able to do it. But, I have to. I watch him while his mama works, so I see him a lot. She just put in for 30 day leave, so she will be home to start therapy and stuff. hOW COULD THIS HAPPEN TWICE IN THE SAME FAMILY?? I just don't understand. I love the little guy so much, and I see him already losing his personality very fast. He hardly smiles, cries a lot, has trouble eating, already. All he can do is seizure, sleep, maybe eat- then it starts all over again. He is now having seizures in his sleep. I know no one has answers, but I just needed to say all this. I guess I'm just trying to come to grips with it. As much as we can....

[Rae1889]

Aw Rhea!
My biggest hug goes to you! That is terrible news, but he has a Nana who can help him through it every step of the way. you are a strong and amazing woman and you wil find a way through it.

((((HUGS))))

[horsehead]

Aww I'm so sorry. I dont know much about this but is there anything the doctors can do to help him?

[Endless]

Rhea,

I am so very sorry. I'm hoping that the doctors find something to help your grandson soon.

[Rhea]

They are going to try ACTH. The insurance co. usually will not pay for it. He is in a 24 hour video EEG right now and my daughter called me. The Dr. had been in to see them, and is optimistic that it will rally help. I don't know much about it, but I know medicine has came a long way in 25 years. I am trying to find out more.

[Nakamova]

Rhea, big hugs to you.

I hope you find treatment that will help your grandson.

[occb]

*Big hugs*

Stay strong Rhea.

[matchu]

My heart is with you and yours Rhea. Please keep us informed and if the insurance company won't pay, I will do what I can to help you fight them.

[Rhea]

thank you all for your support. It means a lot to all of us... We are all joining together in our family and church to pray for him Saturday, April 17. Your prayers (if you are not a praying person, please just think of all of us who suffer everyday with seizures). I know what this disorder can do, as I watched my daughter fight for 6 years everyday just to live at the end. I know what we COULD face if it doesn't work. Or if we can't get the ACTH. I know there are a few organizations that will help with it, and if anyone knows who I can contact if we need to, please private mail me. I would appreciate your help... and thank you, for your thoughts and words.

[seizingbeauty]

I wish I had comforting words of wisdom, or some magic wand, all I have to offer is a big hug and my hope added to all the others here,that this fight will be different.
I will be thinking of you and yours on Saturday.
Sincerely
Cat

[Dutch mom]

Hello Rhea,

In our Dutch parental support group we've got several members who have two kids or another relative with (severe) E.

For what it's worth, I know some kids with IS who got seizure free thanks to ACTH (and others for who ACTH it didn't help.) Perhaps there other parents know resources for funding? In Holland ACTH is covered by health insurance.

To find more experiences with ACTH I recommend http://infantilespasms.com/forum/

A ketogenic diet (ketocal formula) is another option worth trying. When not payed for by your health insurance, the Charlie Foundation (US) and Matthews Friends (GB) are options for funding.

[Rhea]

The ACTH is on its way!!! Insurance paid a large portion. We still have the co-pay---but we'll worry about that later. He's still seizing A LOT, but we got a smile and a laugh out of him yesterday. How wonderful it is to hear him laugh. Poor little guy hasn't had much to be happy about lately. He's no longer trying to do much, he spends most of his waking time in spasms. I think Friday we get together to learn how to give the injections. His other grandma is also going to be here. We have spent a lot of time researching and finding out what to expect. I know it's risky, and all that- but so is infantile spasms. We jsut want our little Ethan back as much as possible.
Dutch mom-- I just joined that forum a couple days ago- it has been so helpful!

[TexasMommy]

The ACTH is on its way!!! Insurance paid a large portion. We still have the co-pay---but we'll worry about that later. He's still seizing A LOT, but we got a smile and a laugh out of him yesterday. How wonderful it is to hear him laugh. Poor little guy hasn't had much to be happy about lately. He's no longer trying to do much, he spends most of his waking time in spasms. I think Friday we get together to learn how to give the injections. His other grandma is also going to be here. We have spent a lot of time researching and finding out what to expect. I know it's risky, and all that- but so is infantile spasms. We jsut want our little Ethan back as much as possible.
Dutch mom-- I just joined that forum a couple days ago- it has been so helpful!

Congrats on the ACTH! I am praying that it helps! Also Congrats on getting a laugh and a smile! I am also glad you found some people who know what you are going through. We will be praying for you and your family in hopes that you can have your grandson happy and healthy! Good Luck!

***Big hug***

[Rhea]

So far, after 3 days on ACTH, spasms have decreased considerably. He's sleeping all night, and staying awake through the day. Today, we discovered why his crankiness: He's teething!!! Something so... normal!!!

[Meetz1064]

is something that is so VERY cool, and hopeful, too, Rhea! I am soooo happy for you and yours.......especially Ethan! What a wonderful thing!

[Bernard]

Hi Rhea, I just spent a few minutes reading the wiki page on West Syndrome. It was interesting to see a note linked to Dr. Kossof's research on the ketogenic diet for infantile spasms. I wonder if Paolo Mainardi's ALAC supplement would be effective (and easy to incorporate into formula for an infant). I take it Ethan is not breastfeeding (breast milk contains ALAC)?