Wednesday, April 8, 2009

Home from St. Paul & lots of pictures

I left yesterday with my MIL and the girls to head to St. Paul for Emeric's appt. with the Epileptologist. We went to the Mall of America and the kids were able to go on a few rides which they enjoyed. We then headed to our hotel for pizza and swimming.

I left the kids with Jake's mom this morning at the hotel and drove to Emeric's appt. We're raising Emeric's seizure meds again to account for weight gain and try to fully control those few breakthrough seizures. The Epileptologist discussed possibly putting him on another seizure medication at night that would clean up what he calls an "angry" EEG during sleep. Meaning he has a lot of abnormal activity during sleep that could be accounting for his lack of energy during the day. He seems to think if he's not getting well rested it would make sense that he's tired all the time. For now we're holding off though and he wants me to call in 3 months and let him know how Emeric is doing. He is concerned about his development on the Topamax and the fact that while he's making slow progress he's falling further and further behind. If his development starts suffering too much more he'll have to be taken off the Topamax but we're hoping that doesn't happen b/c the Topamax has been very good for him so far seizure wise.

Emeric also does not have reflexes anymore except for very slight reflexes in his arms. Apparently this can indicate neuropathy and there was discussion about trialing an experimental med sometime in the future if things start progressing in this area & also in terms of the ataxia(wobbly, unbalanced gait).

Emeric will start on Omega 3 Fatty Acids, B-Complex vitamins, and Folic Acid. We go back in 6 months for another short EEG and hopefully we'll see improvement until then!

Oh, we also happened to run into a woman I met online!! She's the one actually who referred me to this doctor and it was great to finally meet her and her son after "knowing her" online for quite a while now!! :) You can visit Reese's caringbridge site at http://www.caringbridge.org/visit/reesejohnson

And some pictures:




The girls were very tired of the car ride. And yes, I see Kylie's carseat is tipping over. LOL


Kylie and her friend Katlyn at Awana Olympics. They got 2nd place out of two teams! :) The Fargo teams could not come because of the flooding.

And of course I couldn't resist taking a picture for Stellan's name gallery in front of the Mall of America. It was so windy that I see I cut off part of the word and his name is light but since I'm not hyper-critical there's really not even any need to mention it! :)

4 comments:

ben and erin said...

why was i thinking that topamax was for migraines? hmm...
hopefully the new dosages and vitamins will help!

the pictures of the kids are so cute. and it looks like you got his new stroller just in time!

Nicole said...

Topamax is also used for Migraines so you were partially right! :)

ben and erin said...

but it's also one of his seizure medications? does that mean that seizures and migraines are related?!

Nicole said...

Sorry Erin, yeah it is also used for seizures. I'm not sure that the two are necessarily related but the way the medication prevents seizures also works in preventing migraines. I do know migraines are listed as a neurological disorer.

FEEDJIT Live Traffic Feed