Of late Broc has been having some weird eye movements.He has had them in the past but I never took any note of them.I just passed them off as being something behavioral.
When we were in Houston they saw them and asked me about them.I told them I have seen them but never took any note.
They asked us please to contact his ped and let him know who in turn asked me to contact Brocs neuro.
They are a little worried he could be having absent seizures. Seizures can be seen with the 16p11.2 Duplication that we all have.
Broc is also taking a medication (well was taking a medication ) for his Gastroparesis which he has been taking since Oct 2010. A very rare side effect of the medication can be neurological issues.
Since all of this we have stopped his medication to see if these movements are going to stop. His neurologist has scheduled him for a 3 day Video EEG to capture any seizure activity. We have spoken to his surgeon and he siad that we should not do anything before 4 weeks after his surgery.So we have scheduled the VEEG in July to coincide with his appt to see the Mito Specialist and the Immunologist.
Now stopping his motility meds have already started to cause problems for him. He is once again not able to eat a full meal and is getting pain and fullness after his meals.
Both his Neuro and GI Dr feel that his neurological issues are more important that his GI issues.So he will stay off of his motility meds until he has the VEEG so they can rule out any seizure activity.
Aw, poor Broc :( Epilepsy runs in my side of the family so my Dad is a bit paranoid about any type of possible seizure activity in my kids. I hope it was just a temporary side effect of his meds and isn't anything to worry about {{hugs}}
ReplyDeleteKerrigan, I have not been over here since before Amie's surgery - so much to catch up on with Mr. Broc & you all!! I wanted to let you know that absent seizures has been linked to the 16p (more with deletions than duplications - but both have a link). I hope you have gotten results and it is that he is not having them. HUGS! Dawn
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