[Mystik]

Our little *A* just got diagnosed with Epilepsy combined with FAS and I have to admit I'm a little scared and trying to figure this all out for her sake.

She was born having tremors and has been having numerous spasms a day ever since. Although there has been a few weeks here and there that have been spasm free.

Anyways she had an EEG last Tuesday and we saw the Neurologist last Thursday who gave us the diagnosis's. She wants her to also go for an MRI to see if she can see what exactly is going on with her brain and if there is any tissue damage. She also put her on "Depakote" as an anti seizure med and we've been giving them to *A* for 6 days now.

As far as I can tell the meds aren't helping at all. In fact I think it's actually making matters worse. *A* has been having WAY more seizures than before and she is so incredibly tired now all day long. She's been constantly rubbing her eyes and the seizure's which were normally muscular spasms in her face and arms are now becoming more full bodied and more intense. It's so sad and scary to see and I feel so helpless trying to do anything for her. They don't appear to be painful or to bother her in any way. She's 13 months old and after one she just carries on like nothing happened.

Anyways, I'm going to call the Neurologist tomorrow and let her know what we're observing with the meds thus far. But I just wanted to post and see if anyone out there had any advice or experiences they could share with me.

[shavon]

My son (which is much older) also has epilepsy and is also on depakote, he is also tired alot on the med but the alternatives were much worse, we tryed I think 5 meds before switching to depakote and they all had horrible side effects. but it may take a few changes in meds to find the one that works for your little one.
My advice is set an alarm and give the meds at the same time every time, that keeps the med levels level. I have also found that alot of times if my son is seizig that we can clap our hand really loudly and some times it will bring him out of it, but not always.
good luck pm me if you have any questions.

[athikers]

I know there are several parents here dealing with seizure disorders. Teeter is dx as having a seizure disorder of unknown origin and has not had an episode since being placed in our home.

You are doing a good job to continue to push to get her correctly medicated as it makes all the difference.

[Mystik]

Thanks for your responses. I called her Neurologist today and she told me to stop giving her the Depekote and she will call in something new to our pharmacy tomorrow. Not sure on a name for the new meds yet, but should know more tomorrow. I'm not supposed to start her on the new meds however until Monday in order to allow the Depekote to clear her system I suppose.

*A's* SW let me know that they informed her bio mom of the diagnosis's today and she didn't take the news very well. She apparently swears up and down that she did not use ANY drugs or alcohol during her pregnancy, but the Neurologist thinks these particular seizure's could have easily been caused by excessive prenatal drug & alcohol usage. And obviously with an FAS diagnosis to boot there's some more proof of her prenatal disregard. However she denies, denies, denies, and now is demanding a second opinion. I don't think we can get one though since this is the only Pediatric Neurologist in our area and she is very well known and excellent. So I don't know what we're supposed to do. The SW didn't tell us to get a second opinion she just said the mom wants one, but that she had tried to assure the mom of this Neurologists excellent qualifications and standing.

[Gili]

Hi, my DS has FAS and mild epilepsy. You may well have to go through several epi meds (AEDs) before one is decent. But you're dealing with a tough thing. (My DS's seizures are on the dangerous side but very infrequent, so we don't medicate because the risks of meds outweigh the benefits in his case.)

Regarding the FAS diagnosis, of course it's extremely that your DD has it, but it's not necessarily an easy dx to make at her age. Did the neuro tell you exactly on what basis they have made the diagnosis, and which diagnostic manual they used? If it's more of a "subjective" diagnosis, they're probably still right (it could also be anything on the FASD spectrum, acting the same as FAS but without all or any of the physical features), but the birthmother's argument might have a leg to stand on...

[Gili]

BTW have you looked at the various FASD resources on the web (read with care, there is conflicting information), such as NOFAS and other American or Canadian organizations?

It's hard to find good stuff on FAS and epilepsy... our pediatrician said we should find an actual FAS specialist who has treated kids with seizure disorders...

[ProspectiveSingleMom]

First of all, there have been a LOT of medical advances with regard to treatment of seizure disorders, so it should be just a matter of trying different things to see what works. Depakote is a very common med that your Dr. may have chosen to try first just because of being most familiar with it, but there are a lot of other options, so hopefully they will find something soon that works for your child. You did the right thing by reporting right away that it didn't seem to be working. As someone already mentioned, seizure meds can have a lot of side effects, so it is important to watch for and report any changes that occur when trying a new med.

As for bmom ... one thing that a lot of people don't realize is how little alcohol it takes to cause damage to an unborn child. Even just getting drunk once every week or two can be enough, especially if it is a consistent pattern throughout the pregnancy. Similarly, drinking smaller amounts but on a daily basis can also cause problems (such as maybe a couple beers a day). Bmom is probably in denial and may even genuinely not remember how much she drank.

[Mystik]

Well birth moms drinking has apparently been a huge problem for her for a very long time and it's now recently lead to a boat load of trouble and jail time (the story of which is on a whole other post).

Anyways, The Dr. switched *A* onto Lamictal and over the last 2 months or so, we've been working on finding the right dosage of it that works best for her. So far it's going beautifully and I can see so many positive changes in how it's helping her with not only her seizure's but her chaotic moods have become much more stable too.

In regards to the question about her FAS. I asked the Dr. during the second visit if she was just assuming or giving it an actual diagnosis and she clarified that she is giving it an actual clinical diagnosis based on the amount of features and behaviors that *A* was exhibiting right there in her office (she spends an hour with us every visit, so it's not just a quick in and out thing). She pointed out the distance & shape in her eyes, the flat bridge of the nose, the length and flatness of the skin between the nose & upper lip, the underdeveloped jaw and on and on.

On the bright side, *A* had her MRI and there is NO tissue damage. Her brain thus far is developing normally and this is wonderful news!