Help with what to ask the neurologist!

[Porkchop's Mama]

Hi guys...

Blake's first office visit to his own pediatric neurologist (he was transferred out of town to a children's hospital and therefore didn't see his neuro, and she JUST returned from maternity leave 2 weeks ago) is Wednesday...

I am hoping that you all can remember what types of questions you asked during your first visit...

I want to know a few things:
1. Does he have any limitations?
2. Can we have a suppository to administer at home while we wait for the ambulance if he goes into status again?
3. What is his prognosis?
4. Where do we go (medically) from here?
5. How often will he need blood work to check his liver function? (Added to this... Can we do it by toe pick, as he is an INCREDIBLY difficult child to pick - had to have NICU come do it... even in the pediatric hospital where they have presumably picked many children his size - 35" 29 lbs - before!)
6. What is your opinion on Blakes literal speech explosion (from 5-ish words to literally 40 over night) after a 12 minute seizure which he used random words through. (Added to this - Blake has called people by inappropriate titles since his status episode, could there be a medical reason for this?? ie: He previously called my husband "dada" for 10 months and now calls him "mama", he called my father in law "gampa" for months and now calls him "ma")
7. How long are we planning to keep him on carbamazepine? Does the carbamazepine he was given at the hospital differ significantly from the "Tegretol" name brand he was given at the pharmacy once he was sent home?
8. Will we need to do another eeg? Was there anything abnormal on his eeg?
9. When will we need to have another mri done?

I can't think of others.... Please - any suggestions would help!!

Brooke

 

[tase37]

sorry can't help u with ideas but please do u know how many times can u give a suppository if a new seizure starts on the same day? Our baby has a 3min limit and after that we have to give her the suppository..we have had to do it once unfortunately!

 

[Porkchop's Mama]

I don't know the answer to how many times you can administer in one day, but it seems to me after the first time, should the baby experience another one maybe it's best to call an ambulance or get medical attention???
Sorry I can't be more helpful there!

 

[Nakamova]

Hi Brooke --

I think your list is great. You might want to ask the neurologist about what you should be watching for in terms of symptoms or side effects. And find out easy it is to get in touch with the neuro if you have questions (It's great if they respond to e-mail!).

Regarding the Carbamazepine vs. Tegretol question -- the generics are held to a lower standard than the brand versions, so they usually have less of the active ingredient, and also vary from batch to batch and manufacturer to manufacturer. Often a neurologist will specify "no substitutions" when prescribing the brand, so that the patient can be on a consistent dose. This is especially important early in treatment when the patient's sensitivity to variations in dosage is still unknown.