Thursday, April 29, 2010

Ryan's Follow Up Appointments with GI & Neurologist

Ryan had two doctors appointments today.

We first went to visit with the GI Specialists to follow up on his diet and weight gain. We met with the Physician's Assistant and the Dietitian. The appointment went well. Ryan weighed 20 pounds 14 ounces and is 30.25 inches long at 21 months. (Wow, he's 21 months today.) They were pleased to see that he was so alert and to hear that he has been much more communicative with smiles and sounds. They recommended we increase his tube feeds to 40 ml/hour and continue offering juice and some fruits by mouth. We will go back in for another follow up visit in 3 months.

Our next appointment was with our favorite pediatrics neurologist. The appointment was at 10 am and I had marked off the day since we normally have a 4-6 hour wait before even getting into the exam room. I was pleasantly surprised when I arrived with my DVD player & headset, books & knitting that there were only 2 people ahead of us. The most surprising part was that the doctor wasn't even an hour behind, according to the appointment times. Whewhoo!

We had a nice conversation with Dr. Seals. I reported the concerns, specifically Ryan's increase from 1-2 myoclonic seizures each day to 20-30 sporadic myoclonic seizures each day. We also talked about the fact that he is really not using his right arm much and he's keep it stiff and pronated behind him. We also talked about the way he is flexing his little legs after therapy and not allowing them to relax again. I also reported about our visit to Dr. James Gibson, the metabolic geneticist that we saw earlier this month and gave him a list of the tests that Dr. Gibson ordered. He knows Dr. Gibson and was very complimentary of him.

After asking questions and taking notes, Dr. Seals has ordered another brief EEG on Ryan for next week with blood levels to be done the same day. I asked the reason we're doing another brief EEG as we had previously discussed at some point doing a 24 hour video-monitored EEG. Dr. Seals explained that for a child Ryan's age, he will get a lot of "noise" on the EEG that is caused by movement. He also explained that he doesn't really need an event to happen during the EEG. What he is most interested in seeing is the pattern of electrical activity, and comparing the pattern to the previous EEG's.

We are going to hold his medicines at the same level until the evening after his EEG. Then we will increase his Lamictal to 2 tablets (50 mg) twice per day. We will go back in for a follow up appointment with Dr. Seals in 3 weeks. That will give him time to have EEG results and also time for the increased medicine dosage to have an effect.

Since I had planned on being at the dr's all day, I had farmed out all the children. Most of the children went to our friend, Mary's house. (We all love that family! And, I think my children would move in with them permanently, if allowed.) Thanks, Mary! Johnathon was able to have a special date with Nana. They had lunch at his favorite restaurant followed by a round of miniature golf followed by a movie. He was SO happy this evening! Thanks Nana for making his day so special! I think it was just what he needed!

The nice part for me was that I was home much earlier than I expected. I think it was just a little after noon. The house was so quiet. Ryan and I snuggled up in my bed and just spent the afternoon resting. He is a very empathetic child. So unfortunately when I'm not feeling very well, he seems to pick up on it and gets fussy. But, every time it happens, once I pick him up and just lay him right next to me, he's fine. I believe he just needs to feel me to know that I'm okay. It really is rather nice in a way. How many 21 month old boys have you known that make such good snugglers?

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