Dawson had a really good today. He has been in a great mood today. He played a lot and has slept well today. He has been busy this evening munching on a Nilla Wafer. Not sure if it's OK for a baby his age to be eating those, but he sure seems to be enjoying it.
I can't remember if I posted this earlier but we are starting to titrate down on his Topamax. When we were titrating up, there was one particular dose that the medicine seemed to work best at. We are slowly going backward until we get back to that dose again. While on that dose he was averaging 2 clusters of seizures per day. As we got to higher doses of Topamax, he started having on average 4 clusters of seizures per day. At any rate I personally wish we could get him off of that stuff altogether. Even at its best, he was still having seizures, and it is very difficult to get him to swallow that much medicine. Usually one of has to hold down his arms and keep his head still while the other one pins down his legs ( they are really strong now) and then we wait for him to get really upset and when he opens his mouth to get some air to cry again we have to shove the spoon in his mouth. Its not as horrid as it sounds but its the only way to get him to open his mouth to take the stuff. He knows now whats on the spoon and he usually puts up a pretty impressive fight in order not to have to take it.
Other than the Topamax, we are still on the B-6 as well as Lamictal ( very low dose) He has only had one cluster of 7 so far today so all in all, today has been a great day for him ( and us.)
Thank you each and every one for taking time to check on our little guy. Your support and prayers are awesome and we couldn't do this without you.
Jeff and Allison
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2 comments:
That darling boy deserves a box full of nilla wafers!! The pictures are so cute and he really seems to be doing so good. It is a joy to check in and see him making progress in spite of a few nasty seizures. Hope they find their way out soon.
Take Care, Heather
Have you tried a syringe with the medicine instead of a spoon? Not the kind with the needle in it, but just the plastic syringe. That's what we used all the time with Britton when she was sick and we still use it with liquid medicines. You can squirt it right in his mouth. You can get them at any pharmacy counter. Just ask for them.
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