Seeing amazing progress!

[momcap]

At the risk of jinxing this, I wanted to make a positive post about the progress we are seeing with DS7(PANDAS). We started in July with a month of naturopathic support - focusing on detoxing, nutritional and immune support. Then he had a tonsillectomy Aug 4th. As soon as he could swallow again we started the antibiotics - amoxicillin working slowly up to a scary high dose which we've been at for 2.5 weeks now, and nystatin as prophylaxis for yeast. And this week we added bactrim. (We're adding zith in 2 weeks, and a cyst buster in 2-3 months.) With all the supplements and meds, he's swallowing over 30 pills a day.

 

In the past 2 weeks he revisited old physical symptoms. He was extremely moody and had a couple of raging fits that were the worst we've seen in at least a year. He had new symptoms - stinging sensations, and a burning sensation on his forehead that made his skin hurt to touch. I kept wondering is this a herx, illness, or a bad reaction to something he's on??? Then this week he had a breakthrough. He's a different kid. He's calm and happy. Over the summer we watched his brain turn back on. He started reading again, can do math in his head again. He sat on the toilet for the first time EVER. His severe germaphobia is gone. GONE! He missed 88 days of grade 2, and when he did go it was only for 2 hours in the mornings and he came home agitated and impossible. Today he is loving grade 3 - going full days and doing the same work as the rest of the class. He's coming home calm and happy. He was even bragging that he figured out all the word scrambles the fastest of everyone in his class yesterday (he's in a split 3/4). The difference that I notice the most is that the meanness is slowly leaving. He was horrible to be around 24/7, and did not have any friends. Now he's calling other kids "buddy". Today he helped our 3 year old neighbour climb up the slide. He told him it works better in bare feet. He helped him pull off his shoes and socks, met him at the top, and helped him put his shoes and socks back on. I was dumbfounded - that he could touch someone's feet and socks, and that he was being so kind. He particularly hated toddlers and babies, and was always mean to this neighbour. He showered or bathed every day for the last 4 days because he wanted to. I'm embarassed to say that he often went 2 weeks without a shower until I forced the issue and created a crisis. He let DH cut his hair with the clippers tonight, and sat calmly until it was done. The last time we tried a clipper haircut was 1.5 years ago and we almost ended up hospitilizing him because it triggered a wild rage that just wouldn't stop. Since then I've been paying for scissor cuts, and even that requires some serious bribing and he complains and screeches throughout the ordeal. I've had to keep changing hairdressers because it is too stressful for the hairdresser and they won't do it again.

 

I could keep going, but the short of it is that we have a completely different kid right now. I'm loving every single second, knowing there will be lots more ups and downs. But this glimpse of a well child is beyond encouraging. I can hardly believe it!

[SSS]

Wow! What a GREAT post :-) Really wonderful----

[Tamistwins]

At the risk of jinxing this, I wanted to make a positive post about the progress we are seeing with DS7(PANDAS). We started in July with a month of naturopathic support - focusing on detoxing, nutritional and immune support. Then he had a tonsillectomy Aug 4th. As soon as he could swallow again we started the antibiotics - amoxicillin working slowly up to a scary high dose which we've been at for 2.5 weeks now, and nystatin as prophylaxis for yeast. And this week we added bactrim. (We're adding zith in 2 weeks, and a cyst buster in 2-3 months.) With all the supplements and meds, he's swallowing over 30 pills a day.

 

In the past 2 weeks he revisited old physical symptoms. He was extremely moody and had a couple of raging fits that were the worst we've seen in at least a year. He had new symptoms - stinging sensations, and a burning sensation on his forehead that made his skin hurt to touch. I kept wondering is this a herx, illness, or a bad reaction to something he's on??? Then this week he had a breakthrough. He's a different kid. He's calm and happy. Over the summer we watched his brain turn back on. He started reading again, can do math in his head again. He sat on the toilet for the first time EVER. His severe germaphobia is gone. GONE! He missed 88 days of grade 2, and when he did go it was only for 2 hours in the mornings and he came home agitated and impossible. Today he is loving grade 3 - going full days and doing the same work as the rest of the class. He's coming home calm and happy. He was even bragging that he figured out all the word scrambles the fastest of everyone in his class yesterday (he's in a split 3/4). The difference that I notice the most is that the meanness is slowly leaving. He was horrible to be around 24/7, and did not have any friends. Now he's calling other kids "buddy". Today he helped our 3 year old neighbour climb up the slide. He told him it works better in bare feet. He helped him pull off his shoes and socks, met him at the top, and helped him put his shoes and socks back on. I was dumbfounded - that he could touch someone's feet and socks, and that he was being so kind. He particularly hated toddlers and babies, and was always mean to this neighbour. He showered or bathed every day for the last 4 days because he wanted to. I'm embarassed to say that he often went 2 weeks without a shower until I forced the issue and created a crisis. He let DH cut his hair with the clippers tonight, and sat calmly until it was done. The last time we tried a clipper haircut was 1.5 years ago and we almost ended up hospitilizing him because it triggered a wild rage that just wouldn't stop. Since then I've been paying for scissor cuts, and even that requires some serious bribing and he complains and screeches throughout the ordeal. I've had to keep changing hairdressers because it is too stressful for the hairdresser and they won't do it again.

 

I could keep going, but the short of it is that we have a completely different kid right now. I'm loving every single second, knowing there will be lots more ups and downs. But this glimpse of a well child is beyond encouraging. I can hardly believe it!

I am so happy for your family, awesome news!

[Suzan]

Happy Dance!! Great News!

[cobbiemommy]

Awesome news!

[mama2alex]

That's FABULOUS news!!! Thanks so much for sharing.

[JuliaFaith]

How wonderful for your entire family. Will send good thoughts your way for continued healing. Best wishes!

[essco]

Wow that brought tears to my eyes!

[momcap]

Thanks for the support! DS is more agitated today, but still overall improved. I finally really understand the "herxing followed by progress" pattern. And I know we are on the right track. This is such a relief!