Monday, May 12, 2014

Neuro & Immunology Update

It's been since June 2012 since Mason has had any seizures (at least that we've known about). Almost 2 years seizure free is something we can only fall on our knees and thank God for. It has been so wonderful to have this reprieve!! Friday was a follow-up EEG for his neurologist. If it comes back normal we are to start weaning his seizure med, Trileptal, beginning in June (it's a very slow process).
Toddler getting an EEG
They told us to expect results around Wednesday of this week. We ask for prayers for 1) a normal EEG and 2) guidance on whether or not to go off the Trileptal.

With his previous seizure med, it was a no-brainer to wean (he was on Keppra and had worse seizures every time they would bump it up so we couldn't wait to be done with it). But as he's been seizure free on Trileptal with no obvious side effects, we aren't sure if it's the med itself preventing the seizures or the simple lack of Keppra and other inciting factors like UTIs, etc.

We definitely would love to be done with seizure meds (it, along with his Prilosec/reflux meds) are causing osteopenia (low bone density) yet we would happily keep it up if that's what is preventing the seizures. It's very hard to know which way to thank you for praying that the answer would be obvious for us and that he would have no ill effects if we end up weaning.

We also request prayer for both the boys' immune systems as their labs this time around show worse levels for IGG/IGM and strep antibody than in the past (which were already abnormally low). We had hoped nearing summertime they would be improving but that is not the case. Micah has had to increase his daily antibiotic and Mason may have to bump up to two infusion sites (he usually gets one in the leg for an hour each week but the doctor says soon he'll need to go to one in the leg and one in the stomach). We don't look forward to this either. Also pray that Micah can stay healthy enough so as not to require infusions himself.
For this God is our God for ever and ever; he will be our guide even to the end. Ps. 48:14

Mason's Mix

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