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Discussion Starter · #1 ·
any other epilepsy familes out there? my dh has epilepsy, controlled with meds, and now ds is being diagnosed. i am confused, sad, and upset with the length of time we have had to wait to see the neuro. Can anyone relate?>?
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My son is 13 months & has Epilepsy. I'm sorry that I can't relate to the experience of having to wait a long time to see a neuro but I know any length of time is long so I'm sorry.
 

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Hi. We are an epilepsy family. I have myoclonics and absence. My 5 yr old has ESES and complex partials. My 3 yr old has febrile seizures and has had one complex partial.

How long are you having to wait? (don't forget that this weekend is a holiday weekend). I do know what it is like to wait and my advice is to run and find a new neuro if the wait is just too long. Especially given the family history of E, I think it is imperative to get a correct diagnosis and treatment going for your son as soon as possible.

((HUGS))
 

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Discussion Starter · #4 ·
we had an eeg awhile back, and nothing happened, when dh has an eeg he has seziures the whole time. ds did fine, so they said come back if anything happens. then it starts over with the myclonic type sezuires, and now the neuro can't see us for a month. i am freaking out because dh has e, fil has e, and my bil died when he had a sezuire running bath water... he was found drowned in the tub. any info on epilepsy and meds early in childhood would be great. dh takes high amounts of dilatin
as nothing else has worked for him, every time they change his meds, he can't control the seziures.
 

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Quote:

Originally Posted by baileyandmikey View Post
we had an eeg awhile back, and nothing happened, when dh has an eeg he has seziures the whole time. ds did fine, so they said come back if anything happens. then it starts over with the myclonic type sezuires, and now the neuro can't see us for a month. i am freaking out because dh has e, fil has e, and my bil died when he had a sezuire running bath water... he was found drowned in the tub. any info on epilepsy and meds early in childhood would be great. dh takes high amounts of dilatin
as nothing else has worked for him, every time they change his meds, he can't control the seziures.
My sons first EEG was normal. It was a short 30-45 minute EEG. The abnormal one came with a 24 hr. video EEG & then about a month ago we had a short EEG done where he didn't have any seizures but the brain activity looked abnormal.

As far as meds... We've only tried Dilantin and Lamictal. My advice is do NOT use Dilantin. It has a lot of side effects(as you probably know) and it's very hard to regulate in young children. I don't know how old your son is but with mine we never could get it to a high enough level to be therapeutic & it was actually exacerbating his seizures. Lamictal has given us pretty good seizure control and we haven't noticed any side effects.The other plus with Lamictal is it's not processed in the liver like many seizure meds.
 

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I understand the waiting. Both of my children see neurologists. We've had waits that were crazy! My daughter has seizures and is on Depakote. It's only been a couple of months but she seems to be doing well on the drug. We've had to increase her dosage because her levels are not high enough. I believe she is still having some seizures but it is hard to tell since so many are un-seen. Seizures are new to us and there is no family history.

I would send your EEG results to another neuro. Originally I demanded an EEG through our pediatrician. Once I rec'd the results - after waiting weeks - I called two neurologists, one was my son's and one we had never seen. The first said he could not see a new patient until Feb. 2008 the second said Oct 2007 (I called in June.) So, I went ahead and faxed the EEG results to both anyway. I rec'd a call the next day saying my son's neuro could see my daughter the following week.

My son had tests done July 5th. We are still waiting, until Oct 17th, to see another neuro about the abnormal results!

I'm not sure which part of Ohio you live in, we live in IN - but...we kept the Oct appointment w/the second neurologist. It is a far drive - Minnesota - but we are considering using this neuro as our primary doc. She said we could do all blood work locally and visit her every six months for both children unless something comes up in the mean time. We were impressed with the level of care and the responsiveness. (I am waiting to see the third neuro on the 17th. If we love him we may stick w/him. Unfortunately he is at the same Chicago hospital where we've had all the long wait times.)

Sorry, this is so wordy - I'm tired…..
 

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The other thing is, if you notice anything getting worse seizure wise you can always take her in. Sometimes a little prodding & a bit of anxiety will get you in sooner.


 

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somewhere a week or two ago we had a seizure thread going on here...

so sorry about your brother in law! that is just terrible.

my dd has seizures. started at 4 mos, she is now 11 mos. we are on keppra (though i don't believe it is helping) and were on trileptal with horrible side effects and dramatically increased seizure activity. we had to wait 2 mos for our neuro appts. multiple trips to the ER for status always help get us in faster(sarcasm). i will add that i am nursing her and on a very restricted no-allergen diet, as is she. no gluten, soy, dairy, eggs, nuts, etc... that plus daily chiropractic treatments and numerous natural therapies are the only things that have helped us (and they really really have helped us). i hope you get in soon and get some answers mama.
 
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