PANDAS and Tonsils

[mack5mom]

We go to the pediatrician for a follow up tomorrow,first visit since my daughter has been diagnosed by the neuroligist.

Just wondering, anyone out there had their PANDAS childrens tonils removed and if so did it help?I want to ask the DR. but just wanted first hand results too.

She is again showing cold like symptoms.I guess thats the autoimmune part of it.

 

Thanks guys,Gwen

[peglem]

My daughter had a tonsillectomy. The strep was back a few days after the antibiotics were finished. But, my child is, I think, a bit atypical as far as PANDAS goes. She is autistic and nonverbal. So looking with my 20/20 hindsight, I believe she had strep (chronic and untreated) for at least 5 years before she was ever tested for strep. Her behaviors and OCD were considered to be autistic stims and "normal" for autism. At age 10, she was finally tested for strep. Doctors really couln't get a good look at her throat and had no good reason to check for strep. She doesn't get a regular immune response- no fevers. She had eating issues from early on and I wonder how much of that may have been because of sore throats...again, it was considered normal for autism and assumed to be sensory processing problems. Anyway, back to age 10, I had heard about PANDAS and just asked for her to be tested...the pediatrician was amazed when it came up positive. She was given a 10 day course of antibiotics and we thought that was all solved. Several months later, her behaviors were very wild and way, way out of control. Her teachers and I tried like crazy to figure out why. (I was so stupid thinking that one course of Kephlex fixed everything). Finally, decided to see if she was sick. She tested positive for strep. Over the next 18 months, she was doing antibiotics and getting strep again about 3 days after finishing a course. Then back on. The second time she tested positive for strep, her doc and I (who had looked into the PANDAS thing after I was right about the 1st strep incidence) talked about how her symptoms were all behavioral. He tested her ASO titers which came out below range? (30 something) and he tested them a few times during that 18 months. They did fluctuate, but only once came back slightly elevated. Yet we had this pattern of strep=OCD and horrendous ragey behavior. Times when she was calm and happy correlated to negative strep tests. So, she was referred to the ENT, who does not believe in PANDAS (cause he's never heard of it) and declares her a strep carrier (so why the negative tests?). My pediatrician talked to him and between the three of us, we decided to try tonsillectomy. Then, like I said, the strep/antibiotic cycle started again, shortly after that. She's been on prophilactic zith for about 5 months now...and its under control.

 

Sorry so long, its just that I wanted you to know that my results may be much different than other people's. My child did not have inflamed, swollen tonsils with the strep-"just" behaviors and OCD. (we don't know if those motor things are tics or not- maybe) I don't even know if her problems are really PANDAS. The rheumatologist said no because she didn't have the high titers, but I've read the behavior/strep patterns, even in the absence of high titers, indicates PANDAS- well past the initial stages. At any rate- it acts like PANDAS and the treatment is the same...so I don't really care.

 

One good thing that came out of the tosilladenoidectomy is that she no longer has frequent sinus infections.

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my son had his tonsil out at age 2 after 18 months of chronic ear and throat infections - also had the adenoids out. He did become a bit of a challenge to parent at times, he was a very "spirited kid" we realize now how unusual it is to not have one runny nose for 4 years, not one day sick....I think when his behaviour was more challenging it was maybe when his body was fighting something -then when he did get strep at 6 we had the explosion of tics.

[colleenrn]

My daughter's OCD and tics began when she turned five and she was diagnosed with PANDAS about 6 months later (we did not even know she had strep for 3 months). After recurrent strtep, we decided to do a tonsillectomy and adenoidectomy. It turned out her tonsils and adenoids were enormous and so full of holes, the ENT said that antibiotics could never get rid of all of the strep. After having the T and A she was strep-free and OCD/tic free for 1 1/2 years. After the 1 1/2 years, she began to get strep again, but never as frequently as before. My 7 yr. old son had a T and A when he was 5 b/c he began to get frequent strep and his tonsils/adenoids were so large it was causing sleep apnea. He has gotten strep much less frequently since the T and A. My 5 yr. old has not had a T and A, but he has huge tonsils and whenever he is sick he snores very loudly and has a very occasional sleep apnea. At this point I am just keeping an eye on him.