Any adults with PANDAS who made it out okay?

[LaurenK]

My son is very young, he has PANDAS, asbergers and Lyme. We have not started aggressive treatment yet but plan on it very soon. We have an apt. with a PANDAS doc soon. My son has severe anxiety and is so worried about his future even at such a young age. I think now would not be a good time for him to talk to someone, but once we get him more well I think it would be good for him. Are there any young adults here with PANDAS who might be willing, or do you know who I could contact? Thank you.

[tpotter]

My son is very young, he has PANDAS, asbergers and Lyme. We have not started aggressive treatment yet but plan on it very soon. We have an apt. with a PANDAS doc soon. My son has severe anxiety and is so worried about his future even at such a young age. I think now would not be a good time for him to talk to someone, but once we get him more well I think it would be good for him. Are there any young adults here with PANDAS who might be willing, or do you know who I could contact? Thank you.

 

 

Tell him that my son is now 19, and probably had it since birth or at the very least since very, very young (we didn't find out until he was 15, but did find evidence from much earlier age. DS is also diagnosed with Asperger's Syndrome, PANDAS and Lyme. He has been on a lot of abx, but now is not on much (mainly because he started having problems with them, and we decided to hold off...we now use BEG spray, and Samento when needed.) He has had PEX and IVIG, and it has made a world of difference. His Asperger's symptoms have decreased dramatically, and I feel certain that if we had caught this much earlier and been able to start treatment like your son is, that so many of his Asperger's issues (which are now learned and comfortable to him) would not even exist. Is my DS 19 totally out of the woods? Who knows for sure, but at least we have a handle on it for now. He is now entering his second semester of college, double majoring in aerospace and electrical engineering, and ended his first semester with straight A's. He has a part time job at a grocery store. Social skills are still a problem, but I think at this point, it is learned behavior, and he is slowly changing what's left of his problems (IVIG changed his social skills from about 7 years to about 13-14 years old overnight. Tell him to take it one step at a time, and not to worry, but that he has a wonderful mom who is willing to help him get as much better as he can. Only time will tell how your son will do, and how mine will fare in the future, but I do think you are on the right track.

[momcap]

Did you try contacting Beth Maloney? Maybe Sammy would be willing to talk to your son...??

 

I don't count as a young adult , but I had PANDAS-like symptoms and I made it out okay. I was 12 when I started having symptoms similar to my DS's. By the time I was 15-16 I was very depressed, and going through the motions of my life without any hope. I had episodes of severe anxiety and OCD, and depression that turned into mania when treated with anti-depressants. A few years later I started antibiotics for acne. I gradually got better. It's only in retrospect that I connect my recovery to the antibiotics. I never would have known I had lyme disease. I only found out because we were searching for answers for DS8.

 

DS8 has PANDAS and lyme, and at the ages of 4-5 he could have been diagnosed with Aspergers. Now 5 months into aggressive lyme treatment the difference is night and day. Last year he was attending a juvenile bipolar clinic. He was unable to attend school, and had been unable to engage in academics at all for 2 years. He was scheduled to attend a special school this past fall for children with mental and emotional difficulties. Today he no longer meets the criteria for his previous diagnoses of mood disorder and generalized anxiety disorder. His psychiatrist discharged him! He never went to that special school. He is attending a regular grade 3 classroom and getting good grades despite missing the last 2 years of academics. He's entirely caught up, and engaged throughout his day. His teacher, principal, and even our neighbours say he's not the same kid anymore. He is still struggling through symptoms and treatment is far from over, but already the difference is amazing. If you asked me 6 months ago what my hopes were for his future I probably would have cried. Today I am excited to watch him healing, and growing into the person he was meant to be.