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Old 09-10-2006, 09:04 AM   #1
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Call Ped Neuro or not??

I know it's really a stupid question but because of the unknown factor of what could come of it I hesitate to do it. Okay now the situation:

Our DD has Epilepsy. She was diagnosed at 8 months but had her first Grand Mal seizure at 6 months. It was only after her Grandmal seizure that we realized that she had been having Petite Mal seizures from 3 mns.

Anyway we finally were able to get into a Ped Neuro at the CH and he has put her on meds and ordered some tests, up until now she has only had a CT scan and an EEG just after her GM. He wants her to have another EEG and an MRI, we have been begging for the MRI since the beginning since a CT is really useless.

We have yet to be called about an appointment for either test, our next appointment with the Ped Neuro is not until Nov, first one was May.

She has been on Clobozam since seeing him but from my records, like most others I keep a journal of her seizures and when they happen, she has only sligtly reduced in the number of seizures she is having.

Now the dilemma. Do we call the Ped Neuro and tell him the progress, or try to call him anyway, or lack of progress? Both my DH and I are worried about what this will start into motion. We are worried that they might up the med she is on now, which would be horrible since she has side effects from the meds now as it is and they are enough for us that we worry how much worse they will get with more med. Then the other option is to switch to something else which could mean even worse side effects and then the whole dealing with the switch which could prove to be hard.

Recently we got a phone call from the Hospital where she was born and we were informed that she actually never had her PKU test done so now at 13 months she is going on a RUSH basis to get this test done. They think it could have something to do with her having seizures in the first place. ARGH!

Now I am less than 8 weeks to my due date with #2 and stressing about this all. The tests are sooo horrible, we had an absoloute horrendous experience with the CT scan that we have said NO MORE CT EVER! From the CT though we realized that she is allergic to Contrast medium(the dye they put into you for the exam) and she also has Anaphalyxis to Chloral Hydrate (the sedative they give for test).

So anyway I guess I just needed to vent really because it's obvious we need to call her Ped Neuro and update him, esp about the PKU thing too. I mean we HAVE to get her better and have the seizures stop and if this med isn't doing that then there is no reason for her to be on it.

If you made it this far thanks for reading. LOL.

I guess we have another trip to the Children's Hospital 2 hours away coming up along with the millions of other things we have to do, like get the new baby's room ready which isn't even started yet.
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Old 09-10-2006, 11:19 AM   #2
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Re: Call Ped Neuro or not??

I wish I had some good advice. Maybe tell the ped and if you don't like his suggestion tell him that and see what other options are, or maybe get a second opinion. I wish I could help, but I don't know anything about epilepsy. Good luck though!
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Old 09-10-2006, 01:51 PM   #3
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Re: Call Ped Neuro or not??

Call him. That's his job, you don't need to feel like you are going to bother him. That's what he's there for. If the med's are not effactive then they will switch. My aunt was epileptic and I think she went through at least 4 or 5 different meds in my memory and finally they implanted an electrode in her brain to stop the sezuire before it started. If you have any questions or concerns you should call, maybe ask for an email as that is more convienant so you don't have to wiat for him to call you back.
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Old 09-10-2006, 01:58 PM   #4
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Re: Call Ped Neuro or not??

(((HUGS))) Hang in there. And call. Don't stress yourself out, just call them. Or make an appointment to discuss your concerns. I'd be concerned, too if it was one of my DC's
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Old 09-10-2006, 11:01 PM   #5
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Re: Call Ped Neuro or not??

I would definately call, hon. Not knowing is way more stressful than knowing something. I would just put in the call and get the ball rolling. And definately get the pku test. Seizures are a major complication of pku babies. My DH has epilepsy. I know, though, that with babies, the meds are more limited. He is on Depakote, which is one of the meds for controlling several types of seizures, including petite mal and tonic clonic (grande mal) seizures...both of which he had. But I am not sure if that is an approved med for an infant, though I do know of a 3 year old on it. He went through 2 meds as well, before depakote, and he is now completely seizure free on the med. Sorry you are going through this, but dwelling on what you should do and what might happen is just going to add to your stress.
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Old 09-11-2006, 03:14 AM   #6
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Re: Call Ped Neuro or not??

You should call!! There are other sedation medications they can use! Ask for the MRI. ALso maybe they would be willing to try something else. My son had his first 2 MRI's and both CT scans without sedation the third MRI with but that is another story. It is possible they can schedule it for a time when she normally naps and on top of that if there is an over the counter medication like bynadril (sp?) that really makes her sleep that could work too. Sometimes they will work with you sometimes not! In my expirence with pediatric neurosurgeons you have to be the one on top of things. YOu have to make the calls and double check. Bottom line though if you feel this doctor is not giving your daughter the best carE possible ask for a second opinion!! That is what I had to do for my son. He does not have epilepsy, he has spina bifida. We ended up taking an 8 hour flight and spending a month there, but it was worth it to get him the care he needs!! Changing medications, changing doctors, and calling and calling is stressful but your daughter is worth it!! Good luck!!!
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