Some good news I think. AnnaLyn had her appointment with the Neurologist yesterday. He was not concerned about her MRI, and said the difference between the first "normal" and the second "abnormal" wasn't enough to worry about and didn't think it had anything to do with her condition. He also said she doesn't really fit on the Autism Spectrum anymore because she's very social (although shy with new folks or in a crowd) He noted that, "Her eye contact is better than when she was diagnosed...well, I think so anyway....you can't really tell if she's looking at you", as he referred to her little crossed eyes. He thinks she may have a Neurotransmitter Deficiency Disorder. Don't ask me... I haven't had time to google it. He gave me a website to go to and check out. www.pndassoc.org On that site there are subcategories of NTDD. He is most interested in "tyrosine hydroxylase deficiency" and "GTP hydrolase deficiency". In the brief 10 minutes I had to look them up, they appeared very similar. She has 7 of the 15 symptoms of a severe deficiency...explaining the toe walking, tremors, seizures, language delay, lack of coordination, unexplained fevers, unusual eye movements and strabismus. Hmmmmmmm. He started her on Sinamet, a drug used for Parkinson's patients, at a very low dose and increasing weekly until we see an improvement. He expects to see rapid improvement once we get the correct dose. Of course, if we get to the max dose and haven't seen any improvement, then that wasn't the correct deficiency, and we start over with another med. Trial and error....gotta love it. She just started today,so I'll keep you updated. AnnaLyn's strabismus surgery is tomorrow morning. I'm a little freaked out, but God has been so faithful to bring me comfort in the last week. One of my little patients' twin sister came into the clinic with her last week and had just had the same surgery the day before. She didn't appear to be in any pain, and her eyes didn't look sooooo bad. Then sweet Amy called me over the weekend to comfort me and let me know the drill. Emily Grace's surgery went well and was 100% effective. (They don't make any guarantees) Very reassuring. Anyway, I'm still not too happy about letting someone cut on my baby's eyes. Frankly, it sickens me. And I'm gonna miss her little crossed puppy eyes. (Even though you really can't tell if she's looking at you or not) Soooo, be in prayer for my babygirl and her parents tomorrow. Her surgery is at 11am and will last about 45 minutes. I'll keep you posted. For now, enjoy pictures of my little crosseyed chinadoll
Thursday, April 2, 2009
Some good news I think. AnnaLyn had her appointment with the Neurologist yesterday. He was not concerned about her MRI, and said the difference between the first "normal" and the second "abnormal" wasn't enough to worry about and didn't think it had anything to do with her condition. He also said she doesn't really fit on the Autism Spectrum anymore because she's very social (although shy with new folks or in a crowd) He noted that, "Her eye contact is better than when she was diagnosed...well, I think so anyway....you can't really tell if she's looking at you", as he referred to her little crossed eyes. He thinks she may have a Neurotransmitter Deficiency Disorder. Don't ask me... I haven't had time to google it. He gave me a website to go to and check out. www.pndassoc.org On that site there are subcategories of NTDD. He is most interested in "tyrosine hydroxylase deficiency" and "GTP hydrolase deficiency". In the brief 10 minutes I had to look them up, they appeared very similar. She has 7 of the 15 symptoms of a severe deficiency...explaining the toe walking, tremors, seizures, language delay, lack of coordination, unexplained fevers, unusual eye movements and strabismus. Hmmmmmmm. He started her on Sinamet, a drug used for Parkinson's patients, at a very low dose and increasing weekly until we see an improvement. He expects to see rapid improvement once we get the correct dose. Of course, if we get to the max dose and haven't seen any improvement, then that wasn't the correct deficiency, and we start over with another med. Trial and error....gotta love it. She just started today,so I'll keep you updated. AnnaLyn's strabismus surgery is tomorrow morning. I'm a little freaked out, but God has been so faithful to bring me comfort in the last week. One of my little patients' twin sister came into the clinic with her last week and had just had the same surgery the day before. She didn't appear to be in any pain, and her eyes didn't look sooooo bad. Then sweet Amy called me over the weekend to comfort me and let me know the drill. Emily Grace's surgery went well and was 100% effective. (They don't make any guarantees) Very reassuring. Anyway, I'm still not too happy about letting someone cut on my baby's eyes. Frankly, it sickens me. And I'm gonna miss her little crossed puppy eyes. (Even though you really can't tell if she's looking at you or not) Soooo, be in prayer for my babygirl and her parents tomorrow. Her surgery is at 11am and will last about 45 minutes. I'll keep you posted. For now, enjoy pictures of my little crosseyed chinadoll
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3 comments:
We will be thinking about you and keeping the entire Morgan Family in our prayers tomorrow. All our best from Wisconsin and hope every things comes out well.
The Neppl Family
Praying everything went well today! Let us know as soon as you can! AnaLyn is such a cutie!!
Praying....
The Callahans
Stephanie, we will be in prayer for AnnaLyn until the doctor tells you that the surgery was a success. Is your post opt appointment in two weeks? How did the rest of the night go with her sleeping and you just being able to wake her a bit a time? I was concerned for you both!!
Also we will be praying that AnnaLyn is responsive to these new meds.
You may miss those puppy eyes, but you will love it when she looks deep into YOUR eyes expressing her love for you!!
Hugs to you,
Amy
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