New here looking for guidance

[Momlookingtohelp]

Ds just diagnosed by ID spec with pandas. 14 confirmed strep from 2-4.5 had tonsils & adenoids removed & no strep, now he's 9 & started with OCD behavior & a tic 2+ yrs ago, just thought he was quirky because he's so smart. Took him to nuerologist who wanted to put him on meds I said no, he than informed me well it's not gonna go away & then ordered a ASO test. Came back 550 put him on antibiotics & was told to wait 3months & retest. Wasn't waiting 3 months so I took him to cardiologist did ultrasound & EKG heart is fine. New aso levels are 360 ID spec wants him on penicillin shots 1x month for a yr. hes being tested for celiac disease & cystic fibrosis. I think we should consult specialist 1st before starting meds any thoughts? Have an appt with dr Rao in Plano tx & I'm trying to get in with Murphy. All this is mind boggling to me & I'm learning that I'm my sons strongest advocate. I'm so tired of drs thinking I'm crazy I have actually had a dr tell me to stay off the internet! Thank God Ive been so persistent & knew my motherly instinct was right & thank god for the Internet & Drs. Who are studying this. I just want to shout out to the world about PANDAS! U think u go 2 dr & they give u an antibiotic to treat strep & your good. I wish I would have known to have him rechecked to make sure it was gone.

[pr40]

not sure what your question is. based on what I understand from your post, you are already on the right track by which I mean you have apts with dr Rao and are trying to see dr M. that's exactly what you should do.

Apparently, PANDAS kids might have more than one trigger (not just strep) but also viruses and sometimes even food. As a parent you need to figure out what is specific to your child since these complex auto-immune issues are rather individual. You should look back into your family which might help you figure out what is going on.

[airial95]

I'll also throw out there, my son's onset was at 2, and he had 30 strep infections in the course of just about 3 years - similar to yours, however, 2 years in, we got a T&A. He continued to get strep post op. He is asymptomatic to strep - meaning outside of his very first infection (which started the madness) - he has never had a fever, sore throat, or any other symptom of strep. (He also has never had an elevated tire - just loads and loads of positive throat cultures).

 

Even without tonisls - he still cultures positive for strep. With your son's history, it is possible that he continued to get strep post T&A.

 

If you're already getting in to see PANDAS specialists - that's a great first step. However, if your ID is willing to start on abx of some sort, it might not be a bad call either. You may start seeing improvement while you're waiting for your appt with the specialists.

[Momlookingtohelp]

Thank u guys for the response. I guess I'm just looking for reassurance that I'm doing the right thing. He was tested before the T&A to see if he was a carrier for strep which he was not. I guess its possible about the strep after the T&A. We are in the process of getting the whole family checked to see if any of us are carriers. I've read a little on hear about MRIs & wonder what the best route is to get one of those ordered? Any suggestions?

[Dedee]

Well it sounds like your first doctor was right on track. Usually the first line treatment is antibiotics. Very few PANDAS cases are going to resolve without them. Thats your least invasive treatment option (in my opinion). I suppose you could try psych meds but you have a good chance of symptoms resolving with the right antibiotics. The potential harm to your childs brain from PANDAS is much greater than any problems from a trial of antibiotics.

[tpotter]

I'll also throw out there, my son's onset was at 2, and he had 30 strep infections in the course of just about 3 years - similar to yours, however, 2 years in, we got a T&A. He continued to get strep post op. He is asymptomatic to strep - meaning outside of his very first infection (which started the madness) - he has never had a fever, sore throat, or any other symptom of strep. (He also has never had an elevated tire - just loads and loads of positive throat cultures).

 

Even without tonisls - he still cultures positive for strep. With your son's history, it is possible that he continued to get strep post T&A.

 

If you're already getting in to see PANDAS specialists - that's a great first step. However, if your ID is willing to start on abx of some sort, it might not be a bad call either. You may start seeing improvement while you're waiting for your appt with the specialists.

 

 

I agree with everything in the above post. I will add, though, that there may be other infections in addition to all the strep. Keep in mind that this is an autoimmune disorder, in which the immune system is not working properly. So, when exposed to other infections, the person tends to have difficulty fighting those, also. If you don't get rid of all the infections, the immune system will stay in a state of fighting, and it will be very difficult to really improve. I believe that Dr. Rao will test for everything, as possibly will Dr. M. I would also definitely test for parasites and lyme. And, in the meantime, get those shots. DS got monthly shots of bicillin for 3 months...didn't do much. He has now gotten WEEKLY shots of bicillin for the past year, and we saw huge improvement immediately. Now, we also are doing all kinds of other things like ART, homeopathy, supplementation, etc, but honestly, I think you're on the right track at this point, and will stress yourself too much if you try to go in too many different directions. If you do want info about the alternative, stuff, too (we do both alternative and traditional, and have been at it for quite a number of years,) I can PM you more.