Its been a while since Ive done an Evan update, so here goes - watch out, its a long one - settle back with a cool drink: - we just got back from Evans second doctor appointment of the week, so he is having a late siesta while I write this. - appointment 1 this week was with a geneticist, Dr. Sarah Dugan. One of Evans blood tests from his hospital stay in May was positive for striated muscle antibody, so that got him a referral to see a geneticist and a rheumatologist. He had one set of labs done, with the option to do more blood work for an epilepsy panel - basically, looking at a subset of his genes to see if there are abnormalities that can be linked to a cause for his seizures, diabetes, & celiac. The optional part is in our hands, because the test costs thousands. Ive been looking at our insurance plan & trying to find out if the lab Evans blood will be sent to is in-network. Insurance is FUN! - Evan is slated to see a rheumatologist in August. He has no symptoms in that regard, so Im hoping he will be in the clear. We already had one JRA kid. :-) - our second appointment this week was with a pediatric endocrinologist, Dr. Eric Meyers. When Evan was diagnosed with celiac disease, we didnt get a lot of follow-up; basically we were handed a folder of information & wished good luck. Dr. Meyers specializes in children with celiac, and after waiting so long to even meet with him, I wondered if it would be worth it, but he explained how well know if the gluten-free diet is successful (blood work in 6 months & then yearly after that). He also told us that we are remarkably well-informed, probably in the top 1% of patient families that he sees. That was a relief to hear, because we often wonder if we have a clue what the heck were doing. - Evans blood sugars have been running high for about a month, so weve been continuously adjusting, then checking often to see if the change was sufficient. Were making more changes tonight, so over the weekend well be monitoring his blood sugars around the clock. - Evan has also been trying out a Medtronic dummy pump (no insulin in it) this week. He wore it for three days in a row, finally! That means that he would be able to get a real pump -wahoo! The pump we are planning to get also comes with a Continuous glucose monitor, which Im really happy about. - we signed Evan up to go to Camp Daypoint, a day camp for diabetics, in August. He will be surrounded by other kids & counselors with T1D, plus they will make sure he gets a GF diet... I hope he loves it, makes friends, learns more about his diabetes, and feels normal. :-) - Evan has been taking his medications consistently for about 3 weeks, and his seizures are drastically reduced, to the point that theyre almost gone. About once a day, well catch a little blip, but thats about it. Amazing! Im already looking forward to our next appointment with Dr. Doescher to see what he says. - I have been reaching out for help to all kinds of people, and its been amazing to find resources so close: The JDRF St. Croix Valley Family Network Group, led by Kristin Afdahl Causby and her mom, has been wonderful for diabetes support & information; the Supporting Our Sanity moms in the Stillwater School district (led by the generous Kristy Pruden Kargel) are a wealth of info for seizure/medical needs; Twin Cities ROCK (Raising Our Celiac Kids) on Facebook is great for local gluten-free info; my MOTR sisters for their support (whether its offers of babysitting from my coach, Niki, connections to community resources & behind-the-scenes Childrens Hospital info from Angela,a slew of freezer meals ready to go from Danielle, or the big hugs & encouragement from the whole group). I am looking for ways to help you all, or pay it forward, for all the help youve given me.
Posted on: Fri, 27 Jun 2014 21:02:23 +0000
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