We're New - our story and questions

[aidansmom]

Hello,

My DS7 was diagnosed with PANDAS back in February by his doctor (Dr.#1)who pratices integrative medicine and treats lots of kids with autism. I have always felt that his behavior has worsened when sick. I had especially noticed it back when he was 3 and repeatedly tested positive for strep throat until we had his tonsils out but I did not know anything about PANDAS back then. He also has developmental delays, is very hyperactive, noncompliant, can be aggressive and has a movement disorder which is controled by a seizure medicine - trileptal. Doctors just won't quite give him the autism diagnosis. IN Feb. his throat did not look red but he seemed like he didn't feel well. His ASO was 450 and she placed him on azithromycin for 200 mg a day for 5 days and then had him take one dose a week of 200mg as a preventative. (he is 45 lbs)

 

At the end of March he seemed ill again and also had worsening behavior issues when we were at a scheduled visit to the neurologist and she believed he might have PANDAS but disagreed with the doctor #1 as far as the antibiotics. She said that he should be getting 2 doses a week, not 1, on the same day once a week as a preventative. We ran the tests again at this point and he had an ASO of 377 and his antiDNase was 839 (upper limmit of normal is 170). She suggested another course of antibiotics but I was left with the question do I do 1 dose or 2 each week for the preventative?

 

I decided to take a break from antibiotics at the beginning of August when he would not be in school or camp. That is when he stated to seem ill again and his behavior ramped up to the point he was uncontrollable . Near the beginning of when I saw the symptoms I asked that they measure ASO - 260 and antidnase - 670. These were lower than the ones in Feb. and Mar, so the thinking was since they appeared to be on their way down from earlier in the year that he had no current strep infection. Also culture came back negative. But the behavior and different symptoms just wouldn't go away (behavior got worse but illness fluctuated - vomting one day, reflux, nosebleeds, pimple like bumps on chin) so we put him on antibiotics again and he just finished a 10 day course of amoxicillin - with his behavior and illness getting better with lingering behavioral issues. Now I am confused about what to do about antibiotics from this point out. Do we use amoxicillin or azithromycin or something else? How often? Is it possible that the anitbiotics especially preventative ones have knocked down the infections but not totally eliminating them?

 

Also, I had a phone consultation with Dr. K and he suggested to try a steroid burst as a test to see if he improves to see if IVIG might help him. If he has PANDAS he probably has had it for a long time and it is difficult to tell right now if any, some or all of his behavior and other issues may be attributed to it. Doctor #1, who we see tonight has been the prescribing physician on the antibiotics and will prescribe the steroids. We had to treat this past infection first and now I would like to proceed with the steroids ASAP but want to make sure that there are not too many variables that would affect the results (antibiotics for preventative, beginning of the school year, and to top it off he is on a gluten free diet and we accidently gave him wheat noodles instead of rice noodles last night - of all things!). Just trying to figure out how to manage this (the best time to do this)!

 

Any advice or comments?

Thanks

Elizabeth

[texascatholic]

Hi! No real advice to give being that we are new here, too. God bless you as you navigate these tough waters. We have been

on a gluten free diet for a long time too due to celiac issues. If you need help with that, let me know.

 

Holly

[Fixit]

Hello,

My DS7 was diagnosed with PANDAS back in February by his doctor (Dr.#1)who pratices integrative medicine and treats lots of kids with autism. I have always felt that his behavior has worsened when sick. I had especially noticed it back when he was 3 and repeatedly tested positive for strep throat until we had his tonsils out but I did not know anything about PANDAS back then. He also has developmental delays, is very hyperactive, noncompliant, can be aggressive and has a movement disorder which is controled by a seizure medicine - trileptal. Doctors just won't quite give him the autism diagnosis. IN Feb. his throat did not look red but he seemed like he didn't feel well. His ASO was 450 and she placed him on azithromycin for 200 mg a day for 5 days and then had him take one dose a week of 200mg as a preventative. (he is 45 lbs)

 

At the end of March he seemed ill again and also had worsening behavior issues when we were at a scheduled visit to the neurologist and she believed he might have PANDAS but disagreed with the doctor #1 as far as the antibiotics. She said that he should be getting 2 doses a week, not 1, on the same day once a week as a preventative. We ran the tests again at this point and he had an ASO of 377 and his antiDNase was 839 (upper limmit of normal is 170). She suggested another course of antibiotics but I was left with the question do I do 1 dose or 2 each week for the preventative?

 

I decided to take a break from antibiotics at the beginning of August when he would not be in school or camp. That is when he stated to seem ill again and his behavior ramped up to the point he was uncontrollable . Near the beginning of when I saw the symptoms I asked that they measure ASO - 260 and antidnase - 670. These were lower than the ones in Feb. and Mar, so the thinking was since they appeared to be on their way down from earlier in the year that he had no current strep infection. Also culture came back negative. But the behavior and different symptoms just wouldn't go away (behavior got worse but illness fluctuated - vomting one day, reflux, nosebleeds, pimple like bumps on chin) so we put him on antibiotics again and he just finished a 10 day course of amoxicillin - with his behavior and illness getting better with lingering behavioral issues. Now I am confused about what to do about antibiotics from this point out. Do we use amoxicillin or azithromycin or something else? How often? Is it possible that the anitbiotics especially preventative ones have knocked down the infections but not totally eliminating them?

 

Also, I had a phone consultation with Dr. K and he suggested to try a steroid burst as a test to see if he improves to see if IVIG might help him. If he has PANDAS he probably has had it for a long time and it is difficult to tell right now if any, some or all of his behavior and other issues may be attributed to it. Doctor #1, who we see tonight has been the prescribing physician on the antibiotics and will prescribe the steroids. We had to treat this past infection first and now I would like to proceed with the steroids ASAP but want to make sure that there are not too many variables that would affect the results (antibiotics for preventative, beginning of the school year, and to top it off he is on a gluten free diet and we accidently gave him wheat noodles instead of rice noodles last night - of all things!). Just trying to figure out how to manage this (the best time to do this)!

 

Any advice or comments?

Thanks

Elizabeth

 

there is a lot to wade through here..and i am spinning curretnly...so hopefully someone mayb back me on one note

 

get on an abx for 1 month straigth...watch the gut for yeast and such..then do burst...

 

But if I could go back for DS...i would be on abx 2 months..maybe 2 different types..then do a taper...

to clear as much infection as possible..and if you gonna go hd steroid ..might as well taper down to try to eliminate rebounding(snaps back(just as bad or worse) once off steroid...

 

If i could go back....then again there is so much i would do different!!!(for my history ..dealing with this 7 years..this last onset i can't get it to kick..had many prior complete remsiions with just abx)

[aidansmom]

Hi! No real advice to give being that we are new here, too. God bless you as you navigate these tough waters. We have been

on a gluten free diet for a long time too due to celiac issues. If you need help with that, let me know.

 

Holly

 

 

Thanks. I saw your post also on the topic you started. I might post there also!

 

Aidan has been avoiding gluten, casein, corn, soy and a few other odd things since a year ago under the guidance of the same doctor that more recently diagnosed him with PANDAS. When we limited these foods it seemed to help his behavior. I wondered if a lot of PANDAS kids are sensitive to Gluten and Casein, etc. If anyone out there knows if there seems to be a connection that is something I am interested in! The good news is that he didn't seem to have a reaction to eating the noodles last night so perhaps he is able to tolerate some gluten now!

Edited August 31, 2010 by aidan'smom

[momaine]

If your child were mine, I would start with a month long high dose antibiotic (either Zithromax or Augmentin) followed by a steroid burst or taper. I'd give probiotics 2 hours after antibiotics and I'd get a prescription for Diflucan to keep yeast at bay. If the antibiotic seemed to work, I'd stay on it until further notice. That is where I would start. Dr. K is a good doctor and if thea antibiotics stopped working and the prednisone seemed to help, I'd head down the IVIG road. I'm sorry it took so long for me to get it for my dd. It has helped immensely.

[aidansmom]

there is a lot to wade through here..and i am spinning curretnly...so hopefully someone mayb back me on one note

 

get on an abx for 1 month straigth...watch the gut for yeast and such..then do burst...

 

But if I could go back for DS...i would be on abx 2 months..maybe 2 different types..then do a taper...

to clear as much infection as possible..and if you gonna go hd steroid ..might as well taper down to try to eliminate rebounding(snaps back(just as bad or worse) once off steroid...

 

If i could go back....then again there is so much i would do different!!!(for my history ..dealing with this 7 years..this last onset i can't get it to kick..had many prior complete remsiions with just abx)

 

Yes my story is very long and confusing. I just got home from visitng the Doctor who diagnosed the PANDAS and she doesn't want to give antibiotics daily now that the 10 days is up. She wants him to take Amox on Weds and Friday now. I am grateful that she led us down this path to see if PANDAS is the issue for my son but her treatments seem so different than others. I try to talk to her about what I have been reading here and on Dr. K's website and she seems defensive about the way she treats PANDAS.