Anti-Epileptic Drugs (AEDs) - any info?

[j'smom]

Wondering if anyone has any young children that have been on Tegretol suspension and what side effects (if any) they may have noticed? Also, if anyone has any suggestions on how to administer the dose? DS really dislikes the taste of it and spits it up. We're concerned that we could be over or under dosing him. We've also tried the chewable tablets crushed and put in food, but the bubble gum flavour seems to put him off as well. We're waiting for a call back from his doctor to see if there are any alternatives, but in the meantime the tangerine dream flavoured suspension is really a bit of a nightmare - he now doesn't trust us to give him tylenol or motrin either....

To give you some history as to why I'm asking : my 22 month old was on clobazam for 10 months and experienced serious development delays as a result (we know this because his doctor agreed to wean him off to see if it was the meds - and we got our son back when we did.)

Having had this experience, we're a little gun shy and he's our only child, so we aren't sure where he should be developmentally. Unfortunately, the daycare wasn't any help either (kept telling us when we asked that he was fine although we knew he wasn't, we just didn't know the extent of it). This led us to tell the neurologist that he was fine, perpetuating the problem.

The neurologist also just told us that children with seizure disorders often have developmental delays and other motor issues (which he has), so we're just now getting on waiting lists for services like OT. (we've just started a play with words group for speech therapy after 3 months wait and we're still waiting for an MRI. Our doctor suggested that we wait for a developmental assessment to ensure that the delays aren't drug related but everyone else seems to be pushing us in that direction - apparently there are some red flags for Autisim showing up and seizures and autism are often linked? I have to do some research on that I guess.

Anyway, long story short, we have a lot of ground to try to catch up on and we're wanting to make sure that don't miss anything again and that our expectations are appropriate to his capabilities.

thanks for your help and any advice you can give would be greatly appreciated!

[sabb6canada]

WOW!!! This is my son all over again. I asume you are waiting to see a delop. ped for some answers, right? If not you need a referal to one. It will help give you some answers. My DS had seizures from 10 hours old and still gets them once in a while. He also has been dx with ASD.
Clobazam, nasty stuff. My DS was on this along with Toparamate, Phenobarb and Phentoyn. (sp?) He is now only on Phentoyn(sp?) also known as Dilantin and B6. I don't know much about the new med your LO is on. Best thing you can do is if it is liquid put it in a syringe, restrain him if you have too and down the hatch. Squirt it toward the cheek. I am lucky my DS takes all his meds like a charm bad tasting and all.
Good luck.

[Mom of 2 amazingboys]

Hi J's Mom,
We got the best advice from a floor nurse on one of our admissions to administer the meds - we use a bottle nipple - get him to suck on it, then syringe the meds in, and let him suck it until it 'squeaks'. Works for our little man like a charm b/c we know he got all the meds, none is hiding in his cheek (or running out his mouth), and it's gone down his throat before he tastes it. It has made a HUGE impact on our lives - makes taking/administering much easier. Hopefully this will also work for your little one.
Our little guy has never been on the Tegretol -only phenotonin, dilantin, toperamate and now valproic acid. I hope you can find the right one, and dosage, soon.
Will be thinking about you guys.

[ButterflyEffect]

Sorry I can't be of much help either. We have been on phenytoin, phenobarb and now valproic acid. We were glad she had an allergic reaction to the phenobarb because it had many bad side effects as well that we did not want her to have to deal with.
DD is tube fed, but DS gets his meds each night by a syringe, luckily he likes the taste.
DD was supposed to go on Clobazam through the night, the neuro dr. when she was in patient prescribed it. Her neurologist vetoed it so we never started it.

[j'smom]

thank you for the advice! We'll give it a try and keep our fingers crossed : ) Another question - he may have a 4 day hospital visit scheduled in the next 2 weeks for a video eeg - he'll have to stay in a room on a bed (or chair?) for 4 days as I understand it... Would anyone have any advice at all on how to cope with this? I think we'd be lucky to get through 2 or 3 hours normally. We haven't agreed to the video eeg yet - we want some strategies in place first. thank you everyone!!!

[j'smom]

I have to say, its nice to know we're not alone.

[sabb6canada]

M has only had a few regular EEGs and they were hard enough to do. Non invasive but they want them to sleep for a part of the time which is tricky. Also having all the probes stuck to his head gooned him out a bit. 4 days seems very long but if it will give the dr. more information to help I would do it but like you said with things in place 1st.

[Mom of 2 amazingboys]

I feel the same - so nice to know we're not alone. Next time I'm cleaning syringes or administering meds - I'll feel better remembering that there are a lot of other parents doing the same thing at that same moment Not to mention that maybe we're all trying to pronounce and spell phenobarbitol, toperamax/toperamate..(like we care when we're giving history or filling out forms to run to the cupboard to double check! ) ...or maybe that's just me!
Our 15 month old little man has had a pile of regular EEG's - but never the video EEG's. I wish I had some advice for coping strategies. Maybe ask the EEG tech's if they have any advice? Give a call to booking and see if you can get some advice on what other parents have tried to pass the time?
Take care.

[barkingboys]

DS only had regular EEGs in the past. I'm trying to think what would keep a 22 month old amused....does TV work any? You could try to run some of his favourite shows. Any video type games geared to his age that he likes? I can't remember the name, but we have one of those (vtech I think) ones that plug into the TV and have easy recognition games. Books might help for a bit. Anything you would use for a longer road trip might help too... Good luck!

[Mom of 2 amazingboys]

Any luck with the bottle nipple med trick J's Mom?