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Old 09-10-2006, 09:04 AM   #1
GoddessWifeMom's Avatar
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Join Date: Aug 2006
Location: Ontario Canada
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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.
Amy CDing, BWing Bfing Mama to Anastasia 08/04/05 Ephraim 11/12/06
Trying to convince DH to have another baby or TWO!
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