We've had a busy month of doctor's appointments since the last post. The day before Thanksgiving, Jimmo got his adenoids removed. The poor little guy suffered from a slight case of sleep apnea but also had a runny nose basically 50 weeks out of the year. After waiting for about 3 months to get in with an ENT specialist that works often with special needs children, we found out they were 100% enlarged and needed to come out ASAP. The surgery went very well and the surgeon and anesthesiologist were outstanding. Once again Little Man proved to metabolize medicine very different than other children. After his seizure they said it would take about 2 hours to shake off the Valium. It took about 9 hours. After they removed his adenoids they said it would take about an hour to wake him up. After about 5 hours they wanted to admit him and we convinced them of our history and they finally let us go home.
And an update on our seizures. Praise the Lord we've been seizure free. On 12/2 we went up to Kennedy Krieger for a second opinion. The original neurologist suggested we put him on full time medication for seizure disorder. We'll do what we absolutely need to, but we are all about second opinions in the household. The second neurologist also agreed but recommended a slightly different medication. We're still in decision mode on this and will take the upcoming Christmas holiday to make our decision. But other than that, he's progressing well. School seems to be going fine and potty training...well...we'll just say OK on that one. OK so back to Christmas cards, baking, shopping and all that fun stuff! Fa la la la la, la la la la!
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4 comments:
Praying for you as you make your medical decisions. Hugs!
I have missed you, and missed being here. I am blogging AGAIN. We have been doing a nasal spray for #2 but if that does not work we have to see the ENT.
Great news. Great blog!! My son is 4 3/4 years old and living with fragile x-- we live in DC and are on the waiting list to get in with Kennedy Krieger. (They said 6 months or so?) Was that your experience?
Incidentally, we went through our first serious seizure last month as well. He just sort of went limp. EEG in a few weeks.
What drugs did the 2 neurologists recommend with respect to the seizures?
- X Dad!
Great to meet you, I have an almost 2 year old daughter with FXS. I am curious about the types of therapies you are doing, and I see there are a lot of older posts to go through and see, I am excited to hear about your hippotherapy, we are researching this for Holly. I hope you will stop by our blog as well.
Good luck with the seisure medications, i was really interested in the metabolizing of drugs slowly, Holly is currently on ear infection 5 and seems to be allergic to Amoxicillian, it didn;t show up until day 4 though, and when we gave her benedryl it lasted like 12 hours before the rash came back rather then the listed 6, so i wonder if the drugs just stay in her system longer? is this a common FX thing? I will have to talk with Dr. Hagerman about it next time I am at the mind.
I will be back soon, looking forward to your next post. PS I loved the story about the popping peas!
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