I am surprised how long it's been since I have posted. Well, sort of. In November I went back to work for a few months. Then December just full on flew out of control!
So to recap highlights, Ayden Jane managed straight A's for the first time. She was so proud of her all A's. She worked hard for it and totally earned it! As a reminder, she is in all regular mainstream classes and did not receive one bit of special education support the first quarter (more on that later)
Thanksgiving came and we had a nice family meal with all the girls. Ayden Jane does really well at these sorts of times and honestly, I just didn't worry too much about portions being a bit bigger. She was excited to bring over some keto candies that we made as a special desert and she was happy.
On to Decemeber. It was so very, very, very, beyond busy. With the rain and flooding of the fall, most activities were pushed into December and all the typical December excitement and Christmas things were mushed together with them. It was overwhelming for me and Ayden Jane loves to do EVERYTHING so we just over did it. On top of that we passed a nasty, long lasting cold around much of the family. So, much of December is a blur.
I think we FINALLY are putting together the last pieces of handling illness in Ayden Jane. She caught the nasty, snotty, cruddy, endless cold. She handled it pretty well the first few days and then, she didn't. It was like she hit a wall and in a matter of hours she went from okay to looking like a truck ran over her. Her skin color was bluish on her arms and the whitest white on her legs. She felt cold to the touch. Her energy disappeared and a headache came on strong. At that point, we went to the doc and he gave us a script for hydocortisone at Dr. Miller's recommendation. It was definitely the way to go! She turned around pretty fast and was back to fighting the cold well. After another week of fighting the cold we hit up the antibiotics since Ayden Jane has such a horrid ability to fight infection. In the end, Ayden Jane managed to kick the cold with no major complications. Woohoo.
It did, however trigger the strangest tics. She often fidgets her fingers quickly and sometimes makes a few odd facial movements when eating, but nothing life altering. Kayla nicknamed it chipmunking and with a reminder she stops Then this crazy uncontrollable ticiing came on. She could not stop it even when we pointed it out. It became nearly constant. After some thought, consulting smart folks, lots of reading, I decided to try treating it sort of like PANDAS even though I believe it was triggered by a virus rather than infection. Non of this is actually a PWS thing, it's a sucky immune system thing. Anyway, treatment is basically naproxen for inflammation and PharmaNAC because there is some evidence that it increases the effect of the naproxen. (and it can't hurt)
Sure enough,, after one dose of both Ayden Jane was more calm/movements more quiet. She told me after about 30 minutes when I went to check on her that she thought it was really helping because she could make it stop when she noticed she was doing it. That was yesterday and this morning it was still a bit better. I dosed her again and I really think it's working. So hoping she will be back to herself in time for school in 2 days.
She's one tough kid. One thing after another....
So to recap highlights, Ayden Jane managed straight A's for the first time. She was so proud of her all A's. She worked hard for it and totally earned it! As a reminder, she is in all regular mainstream classes and did not receive one bit of special education support the first quarter (more on that later)
Thanksgiving came and we had a nice family meal with all the girls. Ayden Jane does really well at these sorts of times and honestly, I just didn't worry too much about portions being a bit bigger. She was excited to bring over some keto candies that we made as a special desert and she was happy.
On to Decemeber. It was so very, very, very, beyond busy. With the rain and flooding of the fall, most activities were pushed into December and all the typical December excitement and Christmas things were mushed together with them. It was overwhelming for me and Ayden Jane loves to do EVERYTHING so we just over did it. On top of that we passed a nasty, long lasting cold around much of the family. So, much of December is a blur.
I think we FINALLY are putting together the last pieces of handling illness in Ayden Jane. She caught the nasty, snotty, cruddy, endless cold. She handled it pretty well the first few days and then, she didn't. It was like she hit a wall and in a matter of hours she went from okay to looking like a truck ran over her. Her skin color was bluish on her arms and the whitest white on her legs. She felt cold to the touch. Her energy disappeared and a headache came on strong. At that point, we went to the doc and he gave us a script for hydocortisone at Dr. Miller's recommendation. It was definitely the way to go! She turned around pretty fast and was back to fighting the cold well. After another week of fighting the cold we hit up the antibiotics since Ayden Jane has such a horrid ability to fight infection. In the end, Ayden Jane managed to kick the cold with no major complications. Woohoo.
It did, however trigger the strangest tics. She often fidgets her fingers quickly and sometimes makes a few odd facial movements when eating, but nothing life altering. Kayla nicknamed it chipmunking and with a reminder she stops Then this crazy uncontrollable ticiing came on. She could not stop it even when we pointed it out. It became nearly constant. After some thought, consulting smart folks, lots of reading, I decided to try treating it sort of like PANDAS even though I believe it was triggered by a virus rather than infection. Non of this is actually a PWS thing, it's a sucky immune system thing. Anyway, treatment is basically naproxen for inflammation and PharmaNAC because there is some evidence that it increases the effect of the naproxen. (and it can't hurt)
Sure enough,, after one dose of both Ayden Jane was more calm/movements more quiet. She told me after about 30 minutes when I went to check on her that she thought it was really helping because she could make it stop when she noticed she was doing it. That was yesterday and this morning it was still a bit better. I dosed her again and I really think it's working. So hoping she will be back to herself in time for school in 2 days.
She's one tough kid. One thing after another....
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