Aug 8th - Kyle had two doctor's appointments last Thursday. First he saw Dr. Lubicky, the orthopedic surgeon. He recommended Botox injections for his legs to help relax the tightness in his hamstrings. We also saw an endocrinologist to see if Kyle had proper growth hormones since he's so short. Dr. Ely did not feel that there was anything wrong with his growth. He thought Kyle's growth for his adjusted age was just fine and recommended a follow-up appointment in one year. He did request to have his thyroid levels rechecked just to make sure that wasn't an issue. Kyle then had his overnight EEG at the hospital later that day. We waited all afternoon and finally got the word that his room was ready at around 7:30 PM and arrived at the hospital about an hour later. He cried and screamed the entire time they were putting the EEG leads on his head with the super-stinky heavy-duty glue. He was so tired but was kept up because of all the noises and commotion at the hospital. He eventually cried himself to sleep. I was bracing myself for almost no intake for him because of the environment change but shockingly he drank very well at the hospital and took almost double the amount he normally takes at home! Around 3 PM the next day, the on-call neurologist Dr. Jaynes stopped by and said that they found no seizure activities on the EEG. However, there were still spikes on the charts indicating seizure tendencies. But at this point they saw no need to continue monitoring him. She said in her opinion she would probably wean him off of one of his seizure medications. But since she wasn't his regular neurologist anymore it would be up to Dr. Lindsey to make that call, and my heart just sank, because I knew how careful and conservative Dr. Lindsey was. And she had said it repeatedly that if they still saw seizure tendencies they would not try to wean mostly because of how hard it was and how much it took to get the seizures to stop back then. After more waiting for the EEG leads to be taken off we finally got home just before 6 PM. We saw lots of familiar faces at the hospital, from nurses, nurses aides, to doctors and residents. And everyone remembered us too. I guess that's what happens when you are a regular at the hospital!
I was totally shocked when Dr. Lindsey's office called on Monday saying that she thought Kyle would be weaned off of one of his seizure meds! And the medication of choice was - wait for it - Topamax!!! I thought there would be no way in hell that she would be comfortable weaning him off of Topamax because that was THE drug that finally stopped his five-week long seizure AND she had said it multiple times previously that since Topamax was the drug that saved his life that it would be unlikely for him to be weaned off of Topamax, ever. I was beyond THRILLED when I heard that. Their reason was because Topamax was known to have an effect on appetite and since he was still having feeding issues they wanted to see if weaning off of Topamax would help with that. I have been DYING to wean him off of Topamax for that exact reason because I also knew that Topamax would affect appetite as it's sometimes used as a weight-loss drug. Josh, on the other hand, was terrified of the decision and did not want to wean him off of Topamax because that was THE drug that saved his life. He is afraid that the seizures might come back. But if Dr. Lindsey, who was well aware of all that, and being as conservative as she was, was comfortable weaning him off of Topamax, then I would be comfortable weaning him off of Topamax too. To make Josh more comfortable with the decision, I made sure the rescue med that she had prescribed over a year ago but we never filled was re-sent to the pharmacy and that we would have it in hand before we start weaning. I just picked up the prescription this evening and we will be slowing weaning him starting tomorrow. It will be a slow wean over the course of 10 weeks. And if at any time we notice anything suspicious we will stop right away and go back up on the full dose and try to wean Keppra instead.
Then we got the word that the Botox could be done on Tuesday! So we then called back pediatric dentistry to see if we could get the dental procedure scheduled at the same time so it could be performed while he's under anesthesia. We got up at 4:30 this morning for the 5 AM arrival time at the hospital. Kyle had no idea why he had to get up so early but was mostly in good spirits and was very playful while we waited for him to go back to the operating room. Botox was done pretty quickly and Dr. Lubicky made some knee splints for him to wear at night. We thought they were going to be uncomfortable and make his sleep unenjoyable but he actually laughed the whole time we put the splints on tonight and fell asleep right away with no issues. Dental procedure took the majority of the time in the OR. It turned out that Josh's instinct was right and Kyle did not have any cavities. However, he got a thorough exam, thorough cleaning (very important since we've never brushed his teeth), fluoride treatment, and sealants put on two bottom molars. Overall I'm glad he had the dental work done even though he did not have a cavity. Kyle was groggy & fussy when he woke up from anesthesia and continued to be fussy for the rest of the day. He was also crying while he drank today and his voice sounded a bit hoarse so we think his throat was bothering him and that it was irritated by the breathing tube that they had to put down his throat. He was also extremely tired and took two extra long naps after we got home at 11 AM. Dr. Lubicky said the Botox won't kick in for a few days but I'm really excited and hopeful that this is the extra help he needs for him to have the confidence to finally walk independently. They were also able to draw Kyle's blood to check for thyroid levels when he was under anesthesia and his numbers were completely normal. One less thing to worry about!
I was totally shocked when Dr. Lindsey's office called on Monday saying that she thought Kyle would be weaned off of one of his seizure meds! And the medication of choice was - wait for it - Topamax!!! I thought there would be no way in hell that she would be comfortable weaning him off of Topamax because that was THE drug that finally stopped his five-week long seizure AND she had said it multiple times previously that since Topamax was the drug that saved his life that it would be unlikely for him to be weaned off of Topamax, ever. I was beyond THRILLED when I heard that. Their reason was because Topamax was known to have an effect on appetite and since he was still having feeding issues they wanted to see if weaning off of Topamax would help with that. I have been DYING to wean him off of Topamax for that exact reason because I also knew that Topamax would affect appetite as it's sometimes used as a weight-loss drug. Josh, on the other hand, was terrified of the decision and did not want to wean him off of Topamax because that was THE drug that saved his life. He is afraid that the seizures might come back. But if Dr. Lindsey, who was well aware of all that, and being as conservative as she was, was comfortable weaning him off of Topamax, then I would be comfortable weaning him off of Topamax too. To make Josh more comfortable with the decision, I made sure the rescue med that she had prescribed over a year ago but we never filled was re-sent to the pharmacy and that we would have it in hand before we start weaning. I just picked up the prescription this evening and we will be slowing weaning him starting tomorrow. It will be a slow wean over the course of 10 weeks. And if at any time we notice anything suspicious we will stop right away and go back up on the full dose and try to wean Keppra instead.
Then we got the word that the Botox could be done on Tuesday! So we then called back pediatric dentistry to see if we could get the dental procedure scheduled at the same time so it could be performed while he's under anesthesia. We got up at 4:30 this morning for the 5 AM arrival time at the hospital. Kyle had no idea why he had to get up so early but was mostly in good spirits and was very playful while we waited for him to go back to the operating room. Botox was done pretty quickly and Dr. Lubicky made some knee splints for him to wear at night. We thought they were going to be uncomfortable and make his sleep unenjoyable but he actually laughed the whole time we put the splints on tonight and fell asleep right away with no issues. Dental procedure took the majority of the time in the OR. It turned out that Josh's instinct was right and Kyle did not have any cavities. However, he got a thorough exam, thorough cleaning (very important since we've never brushed his teeth), fluoride treatment, and sealants put on two bottom molars. Overall I'm glad he had the dental work done even though he did not have a cavity. Kyle was groggy & fussy when he woke up from anesthesia and continued to be fussy for the rest of the day. He was also crying while he drank today and his voice sounded a bit hoarse so we think his throat was bothering him and that it was irritated by the breathing tube that they had to put down his throat. He was also extremely tired and took two extra long naps after we got home at 11 AM. Dr. Lubicky said the Botox won't kick in for a few days but I'm really excited and hopeful that this is the extra help he needs for him to have the confidence to finally walk independently. They were also able to draw Kyle's blood to check for thyroid levels when he was under anesthesia and his numbers were completely normal. One less thing to worry about!
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| "Walking" over from the living room to the dining room by pushing the ottoman to get to the elephant walker |
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| At the hospital for overnight EEG |
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| He does not get a break from standing even with the EEG's on! |
Kyle blowing into the water mug (video)
Kyle laughing at bouncy ball (video)
Kyle pushing the elephant walker himself (video)