Seizure attacks as early as 4 months old. Please, help us.

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I'd find a doc that would support the Ketogenic Diet

If it was my daughter and if there was any way to go to a neuro that would support the Ketogenic Diet I would switch neuros. It would not be safe to try to attempt this diet without the support of a neurologist and dietitian. From what I've read the Ketogenic Diet has the best chance of helping your daughter.

Also remember that most AEDs negatively impact cognition and years 0-3 are critical development years for your daughter's brain. Having said that, my daughter has been on AEDs since she turned 1 and she's fine developmentally, but that's after a lot of trial, error and negative side effects. If I had it to do over again I would have started the Ketogenic Diet right away. As it is we're preparing to start the LGIT (a form of the Ketogenic Diet) so that we can hopefully lower her meds more.

I pray that you'll find the best treatment for your daughter.
 
KarenB said:
Did she say WHY the Ketogenic Diet would be the last approach??

Too many doctors wait until a child has gone through 3 or 4 or 5 medications before even thinking about initiating the diet. In the meantime, some of these children suffer brain damage (which happened to our son), and developmental delay, along with the horrible side effects of the medications.

Johns Hopkins Hospital has moved the Ketogenic Diet to frontline treatment for Infantile Spasms -- their study on this is in the September, 2008, issue of Epilepsia.
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I hope we have enough resources to go to Tawam Hospital, Al Ain. I think it's a 2-3 hours drive from Dubai, if not mistaken? Last thing I remember about the Ketogenic, the Pedia Neuro said it could be the last approach because he will try with medications first and for the diet, at some time, the child may not eat too, so for him it will like be pointless (that's the way how I understood it)
jimj said:
If it was my daughter and if there was any way to go to a neuro that would support the Ketogenic Diet I would switch neuros. It would not be safe to try to attempt this diet without the support of a neurologist and dietitian. From what I've read the Ketogenic Diet has the best chance of helping your daughter.

Also remember that most AEDs negatively impact cognition and years 0-3 are critical development years for your daughter's brain. Having said that, my daughter has been on AEDs since she turned 1 and she's fine developmentally, but that's after a lot of trial, error and negative side effects. If I had it to do over again I would have started the Ketogenic Diet right away. As it is we're preparing to start the LGIT (a form of the Ketogenic Diet) so that we can hopefully lower her meds more.

I pray that you'll find the best treatment for your daughter.
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Thank you sir. I will try to ask the doctor again about the Ketogenic diet. This time I will talk to him thoroughly.
 
Just for another update. My daughter right now has stopped taking Phenobarbitone. As per the doctor, this medication is not for myoclonic seizure so it must be stopped.

My daughter is already admitted at the hospital for her 5th day today, (since Monday) - on her day 1, she was given a new med Sabril, the doctor said that it was a good drug and should lessen my daughter's jerkings, unfortunately, on it's 3rd day, she is still having these jerks and it became worse ( my wife even thought that the sabril worsen the jerks and want it stopped), so the doctor said that my daughter should be started on steroids which is prednisone. She started taking it the other day, there were SLIGHT improvements of jerks but it is still there. It's really painful to see our daughter like these.

I hope this Ketogenic would be a big help for her.

Also, our doctor informed us that the EEG results is coming back that my daughter has Hypsarrhythmia. EEG was done while my daughter is awake, but on her sleep, everything is normal.
 
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Oh Fait, I am so very sorry to hear that your sweet baby is in hospital again. I know how hard that must be for you and your wife.

Steroid treatment is often used with infantile spasms with good success, but severe side effects and high cost.

Here is a link to some articles on the treatment for infantile spasms with hpyerarrhythmia

http://www.charliefoundation.org/faq/application/infantile-spasms.html

http://www.epilepsy.com/epilepsy/keto_news_july10

http://www.infantile-spasms.org/alternative_therapys.htm

Sending blessings and prayers your way
 
Sorry to hear your little one is back in hospital again. My 19month old little boy was first admitted to ED at 7 months with tremorring and seizures. They were often in clusters and at one point he was having over 150 a day. Nureo's decided not to give him meds as his EEG's were OK. He still has events and other strange things now but it is only a handful a day. He was put on seizure med around 16 months old, as he has periods where he can't walk due to clusters of events, and that has helped now. He was quite developmentally delayed at 12months but has caught up to almost normal now. When he was 18months old they found he has a lesion in the middle of his brain. His EEG's didn't pick it up as it was to deep in his brain, the EEG's only ever showed slight slowing on one side of his brain. What I am trying to say is I know it is really horrible and scary what is happening with your little bub now, I know I was terrified when it happened to my son, but things can improve. We are still looking for answers to help our youngest as he has everyone confused and I feel so lucky that he was born at this time when it is so easy to record his events/seizures as some times he appears almost normal but as soon as his specialist sees the footage of what happens they are able to start looking at ways to help him.
Good luck with it all.
Take Care
Donna
 
@KarenB: Thank you for sharing the link about infantile spams. Unluckily, my daughter is diagnosed with that. Right now, the doctor is trying to stop the sabril (as requested by my wife) and lowering the dosage of depakine. I believe there will be a new drug given again to her, but it's more on the vitamins side. My daughter also had a seizure yesterday and almost lasted for an hour. :( I hope this all goes away already. We need the proper, right medication.
 
Hi Fait,
On that 3rd link, when you go there, there is a column to the left, and you can click on the buttons there to get more information on the type of seizures your daughter is having, and the treatment options, and other information that will be helpful to you and your wife as you make decisions for her care.
Blessings,
Karen
 
My full time hobby is researching the best treatment for my daughter's Dravet Syndrome. During my routine Dravet Syndrome reading I ended up reading a bit about CoEnzyme Q10 and "E P I 743" (there shouldn't be any spaces in between E P and I, but when I put them together it gets replaced with "epitologist") and mitochondrial disorder tonight. I read that mitochondrial disorder and Dravet Syndrome could have very similar symptoms. Additionally CoEnzyme Q10 and "E P I-743" can be used to treat mitochondrial disorder. I also read this blog entry:
reaganleigh.blogspot.com/2011/10/pumpkin-patch-pics-ep
i-743-explanation.html
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which has a brief explanation of CoEnzyme Q10 and "E P I-743". I noticed that the subject of this blog was "diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease." When I saw "Infantile Spasms" I thought of you Fait. I don't know how common it is for Mitochondrial Disease to cause Infantile Spasms, but it may be worth asking about and/or reading about. I don't really know much about either, but on the outside chance it could help you I wanted to share.

Sorry that I can't make the link above "live", I haven't been a member long enough. If you remove the line break between the P and I then paste the address into your browser's address bar it should work though.
 
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Another thought for myoclonic seizures is Piracetam. It can also help relieve Mitochondial stress caused by oxidative stress. I believe it has orphan status in the US for myoclonic seizures, but most American neurologists are not familiar with it. In Europe, it is used as first line treatment (usually adjunct with other meds) for myoclonic seizures. The good news is that the side effects are quite benign, and can perhaps enhance cognitive function lost due to seizures or seizure meds, especially memory and language.

http://www.ncbi.nlm.nih.gov/pubmed/16284628

http://www.ncbi.nlm.nih.gov/pubmed/9527146
 
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