August 5, 2008
Well it’s been forever since my last post. So much has been going on the last two months. Avery’s been pretty good for the most part but he was just recently in the hospital. I took the kids to Iowa at the beginning of July to visit Jeremy’s parents. The plan was to stay for about four weeks but we had to come home after only two. Avery was having really bad constipation problems so I found a pediatrician in Iowa that agreed to see us even though we were out of towners and only visiting temporarily. We get to the doctor’s appointment and it turns out this pediatrician is very familiar with CFC Syndrome. He doesn’t have any of his own patients with it but said he did his residency at the University of Iowa and had seen a few kids up there that had it. I was really excited to know that he had some knowledge of Avery’s condition since that’s hard to come by. He said a lot of special needs kids struggle with constipation and told me to start Avery on miralax. I gave him the miralax for two days and it seemed to be working a little more than I wanted so I quit giving it to him for a few days. Three or four days after I started the miralax Avery got really sick. He was constipated again and didn’t look like himself. I assumed he needed some of the miralax again to help him go so I gave him another dose of it. Within a few hours he went from constipation to massive pooping. He would poop once and fill a diaper. By the next day he was still pooping way to much and had started throwing up. The first thing Avery does when he gets sick is quit drinking his bottles so I knew he was going to get dehydrated if I didn’t act fast. I also noticed he was loosing his color and looked yellow. I called our pediatrician here to let him know what was going on and he confirmed that I needed to get Avery to the nearest ER fast. I absolutely hate taking Avery to the ER because he’s so complicated with his medical background and having a disorder that most doctors have never heard of. I usually get treated like I’m over reacting and they always try to send us home. I have to say this time was pleasantly different. I took Avery to Blank Children’s Hospital in Des Moines and that was some of the best medical care we’ve ever gotten anywhere. The doctors of course weren’t familiar with CFC but if they weren’t in our room checking on Avery they were out in the hall on the computer researching it to learn about what they needed to do for Avery. The ER docs confirmed that Avery was dehydrated but knew an IV alone wasn’t going to fix this problem. They ended up admitting Avery to the ICU to do a ton of testing to find out what was causing all of the pooping and vomiting. Nothing ever came back with the testing but I think they officially just ruled it as a virus. The thing that did spark some confusion with the doctors if that when Avery first came in his blood sugar was extremely high….somewhere in the 400s. After he got better and they checked it again it was in the 100s and they said that was where it should be. They aren’t sure though why it spiked when he got sick. Avery doesn’t travel well and hates being away from home for long periods of time. I think the trip was just to much for him and he literally made himself sick. As much as I hated to leave so soon we decided to pack up and come home a few days after we were released from the hospital.
Before we left for Iowa Avery had an EEG done to make sure his seizure meds were at the right dose and working like they should. We don’t have another appointment with the neurologist for a few more months but I assume since they haven’t called us that means all is well. They did send the results to our pediatrician as well and he said there were a few minor things that might cause the neurologist to slightly raise the dosage of the meds but nothing to cause concern.
Avery also had an appointment with his opthalmologist last week. He has to have his eyes checked every six months to make sure he doesn’t need more surgery. So far so good! The doctor said everything looked good. She did ask how far away Avery can see but I have no idea and since he can’t talk he obviously can’t tell us. I guess she was worried he can’t see very far. I think the problem is she wanted him to look at something on the wall across the room and unless it sings and lights up Avery isn’t going to pay any attention to it. For now though she said everything is fine and to bring him back in six months again for his normal checkup.
Thursday we have to make the long trip down to Texas Childrens to see the geneticist. It’s not time for our regular visit yet but I was told the geneticist we saw last time left not to long after our last visit. So now we have to start all over again with a new one. The last visit was a few hours long because we have to literally go over Avery’s COMPLETE medical history and that can never be done quickly (there’s just to much info to give) so I assume this visit will take forever too.
We got an e-mail last month letting us know the next CFC conference will be in Berkeley, CA next August. It’s going to be a combined conference this time with the Noonan Syndrome support group. CFC, Noonan, and Costello are like sister disorders so they decided to try and have a conference with all of the groups together. I’m not sure why but the conference is just going to be CFC and Noonan. I wish the Costello group would have been able to join us. Costello Syndrome was originally what they thought Avery had but when they did the genetic testing it came back showing CFC. It would have been interesting to see some Costello kids though and see how similar they are to Avery. Anyway, now that we have the info for the next conference we have to get busy preparing for it. That means it’s fundraiser time for us again. Going to CA will be a lot more expensive than going to FL and we hope to take Andrew and Allie with us this time. I want them to see the other kids and know what Avery’s going to be like as he gets older. We still have bracelets and buttons for sale and we’ll have another big benefit sometime next year (probably April). If you have any other good fundraiser ideas feel free to pass them along.
I know this blog is for Avery but I have a lot of family that asks about Andrew too so I’m going to include that in this blog. Andrew was finally diagnosed with Asperger’s and ADHD. I’m not sure what all this means just yet but I know we have to make some major changes to his environment both at home and at school. He got diagnosed just a few days before we left for Iowa so we didn’t have time to meet with all the doctors and discuss a plan. Next week Andrew goes back to his counselor so we can find out what kind of treatment she can offer him and then he also goes to see his pediatrician to discuss medication. One thing the counselor stressed to us was getting Andrew out of his current school. We had nothing but problems with them last year and they basically told us even with a diagnosis of Asperger’s they wouldn’t offer Andrew any services through the district. With that said our only option is to wash our hands of them and find someone who will help us. I called another school around our house and they said to come in and talk with the principal on Wednesday about a transfer. Conroe ISD is really strict with transfers and they have to be approved by the principal at both the new school and the old one. Wish us luck with that!
Anyway, i hope the storm isn’t affecting to many people. We’ve had steady rain all day but nothing too bad. Have a great week everyone!
Brandy