Also new to this

[brandykree]

My 4 year old son (will be 5 on 19th of April) was diagnosed just this week with epilepsy. Only after reading up on it today did I realize that he has been doing things this whole time that could have caused them. At about Halloween of 2007 (he was a little over 2 then) we seen him start to stutter when he talked. It seemed to come out of nowhere. I talked to a doctor about it then and they told me this was normal in kids this age. As the months went by we noticed other things, lie staring, his speech was low (we put him into speech therapy at his headstart and thought maybe he would just be a little bit of a slow learner than our other kids. He is also a very small child. We have had him in the hospital because the doctors thought he was too small for his age (which my daughter went through the same thing, they told us she looked like a 4 month old baby when she was 8 months old) I thought that was kind of drastic and that I just had small children. Anyways, we noticed his stuttering getting worse, and its been getting worse ever since. However, about a month ago my ex (we share custody, not ordered, just something we do on our own; so we share our time with them) he called me and told me that our son who is 4 now, was having seizures like crazy. He took him to a hospital there in KY where he lives and they could not stop them or figure out what was causing them. They then flew him to Nashville, TN to try and find out more about it. They had kept him sedated and had put a breathing tube down his throat. My ex told me they tried every test they could (including spinal taps) and so forth. They did not know what was wrong. They set him up for another appt. to go back to Nashville and sent him home. On Tuesday of this week he went in for the last tests the doctor said she could do to figure out what was going wrong and the test came back positive for epileptic activity in his brain (Its not how he put it, I am trying to go by memory, but it was something like that). He said he has had to buy an $800 emergency kit for himself, the school, and the daycare that he goes to that has liquid Valium in it. He said the doctor is going to put him on Depakote for the next two years to see how that will go for him. I do not want him to have any horrible side effects from this medicine. My kids have always been hyperactive (even now my oldest sons school is practically trying to make me put him on ADHD medicine) but I do not like my kids to take medicine if they do not have to. They almost never even have to go to the doctor. I was reading a lot of the posts on this site and have learned of some things that people do to keep from having to medicate their children. I think I am going to talk to my kids dad about them and see what he wants to do. I will be going to get my other two kids from their dad ( my 4 year old diagnosed with epilepsy and my 3 year old daughter) and I want to be prepared for when they get here. It all seems so over-whelming, like should I start looking into his diet, should he take medicine until then, should he take medicine while changing his diet and if so how do I know which one is working, there just seems to be lots of stuff and I do not really know where to start or what to do? I was hoping by finding this site that I might get some helpful advice and do something good for my child.

Anyone with insight, advice, suggestions...I am open to hearing about it.....

Brandy

 

[Nakamova]

Hi Brandy welcome to CWE!

You're in a tough spot -- I hope your son gets stable soon. It's important that his seizures don't escalate. For this reason he should take his medicine. But it's also important that the medication side effects, if any, don't become intolerable. I recommend that you keep a close watch to monitor any side effects. A seizure journal can help -- if your son continues to have seizures (including the staring and stuttering), make a note of it as well as anything else that seems strange. Note any new behavior that begins once he's on the Depakote, or anything that changes. Don't be shy about calling up your doctor with questions. If the Depakote makes the seizures worse, or has bad side effects, then there are other medications out there, as well as the dietary route to consider. It can't hurt (and can help) to start to evaluate his diet now -- has he been tested for any food allergies? Have there been any foods that have been problematic for him? You may want to check out "The Nursery" forum here to see what other parents have gone through.

Best,
Nakamova

 

[RobinN]

Hi Brandy - I think you should take the time to look at this site.
http://www.dogtorj.com
There are great articles on seizures and also on stuttering (look under appetizers).
Dogtor John has been very helpful and supportive with me to see how nutrition could be playing a role in my daughters seizure activity.
I stuttered as a child, and eventually grew out of it, with my mothers support and eliminating stress in my life. I went on however to have 30 yrs of migraines. Which now are considered part of the seizure family.

You might see the connection to the ADHD as well.

I personally would look into nutrition (I don't like the term diet) and immediately make changes. As Dogtor John said to me 3 yrs ago... "What do you have to lose?"