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mommy007

13 year old son-pandas-update

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Re: "We also went to the ENT who thinks her tonsils and adnoids may need to come out. "

 

I went to a Tourette Syndrome Association support group this week and met a mom who's son had severe Tourettes (too long ago to be diagnosed as PANDAS officially) but had numerous strep infections and they had his tonsils and adenoids removed and has been tic and symptom free for 6 years since the operation. They had not expected it to help his TS symptoms but it seemed to cure him. I thought this was very interesting! It doesn't help me though since my son keeps having negative strep cultures so even though he has high titers we are having a hard time figuring out if it is a true PANDAS case since we can't locate the strep.

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It doesn't help me though since my son keeps having negative strep cultures so even though he has high titers we are having a hard time figuring out if it is a true PANDAS case since we can't locate the strep.

 

Amy I did reply to you on your thread, but just wanted to highlight this here too

 

 

 

I know one of our PANDAS experienced moms will be able to answer you in detail here, but I just wanted to comment on something, from my limited knowledge on the subject

 

A strep culture is NOT always going to reveal the presence of strep. So just because your child's cultures show neg doesn not mean that he doesnt have strep in his system. The fact that his titres are up means his body is forming those strep antibodies. Strep throat is caused by one of the MANY strains of streptococcus and so that is why, in PANDAS dx, it is the strep titres, not just the cultures, that are the main diagnostic criteria

 

The sudden onset of tics and or OCD symptoms is another very relevant pointer toward a PANDAS dx

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just an update.

 

my DS is now 14, doing great. his last to colds/illnesses were pretty bad, however he never showed any symptoms of PANDAS. These were the first two illnesses that he managed symptom free!

 

Also, wanted to mention, DS AntiDNase B titers were at their lowest, 340 - for 3 years, never went lower (higher sometime when ill). Last year he was put on a steriod for chest congestion, the steriods really helped the cough, it had been going on for 2 months. Anyway, he had a AntiDNase B titer done within 6 weeks of the Steriods, which he was on for a week and his AntiDNase B titer had dropped to 240 for the first time. I had been told by a doctor at A.I.Dupont for Children that a steroid burst may be helpful, it seems it did make a difference.

 

Just wanted to share.

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mommy007,

 

Thanks for posting that.

 

When my 14 yr. old got a mild case of suspected poison ivy, I almost had a fit, when the Dr. wanted to give him a steroid "burst."

 

This was on his face, and was not causing his eyes to swell shut or anything. The only reason I took him in, was because I didn't know what it was. I thought giving him a steroid, was totally unnecessary. We never did fill the prescription.

 

I think the article Chemar posted regarding PITANDS mentions improvement confirmed with steroid use?

 

His minimal tics, at this point, do seem more illness related, than a connection to things like diet, although, hard to say what part that plays in Alison's full bucket analogy.

 

Anyway, I thought the information you shared was interesting.

 

Kim

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In the summer when my son was really sick - with PANDAS and not getting better on his previous antibiotic my doctor consulted with the hospital about giving him steroids, the hospital would not give the go ahead and said it was too experimental ( I guess because it would be given to treat the PANDAS not some other illness) Luckily we ended up trying the azith which was great.

Thanks for the update Mommy007 - I love reading them.

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quick update

 

I just spoke to Dr. Brown (CHOP). I wanted to know if he wanted blood work done again on my son. He does not feel it's necessary since he is doing well.

 

he told me he is going to a conference in two weeks to debate PANDAS. he is a real skeptic but feels my son is the closest he has seen in his practice that comes to this diagnosis. He said he may be calling me in a after the conference for more information. I guess it depends on how his debate goes.

 

I think doctors have a hard time with the diagnosis because the symptoms are all over the place, and a child can display them at different times.

I have tracked my son's illness/symptoms with charts electronicaly for the last 5 years. I believe it's necessary to get a diagnosis, we as parents know what we know, but they seem to see it better on paper.

 

I always advise parents to document, it really is helpful.

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that is such good advice re the documenting mommy ^_^ Keeping records really helped us to identify triggers and also to determine which supps were helpful and which not etc etc. That is also how we discovered the lunar cycle effect on my son's tics as well as his response to illness, stress, excitement and more

 

I sure hope that this PANDAS debate convinces your doc mommy...........amazes me how it can be staring them straight in the face and yet they dont see it <_<

 

hope you will update us

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Hi everyone. I am new here and believe I have another PANDAS case with my 10.5 year old son, Jon. Jon has never had any tics his entire life. We also have no family history of OCD or TS. Last week he began a mild neck tic and within 2 days he has constant neck tics which include opening his mouth at the same time. At night sometimes he will exhale a bit while ticcing so that might qualify as audible tic. It's like something all of a sudden was attacking his body. It goes into overdrive during baseball in which he can tic up to 8 times a minute when playing. It's typical that he stops tics when focused (hitting or catching) so it doesn't effect his abilities, but it is very noticeable. We called out pediatrician who told us tics were normal and that we should set up an appt with a neurologist. After doing some reading I had a hunch it was more than that. I told my Dr. I wanted a strep test and sure enough Jon tested positive with strep anti-bodies in his blood as well. Both the quick swab test and blood test were positive. I thought that strange since he actually showed no other symptoms of having strep besides the sudden tics. He has had strep in the past a few times where he was treated immediately when the normal symptoms showed (fever, sore throat...). Anyway our doctor , since Jon had reactions to penecillin when younger, prescribed Cephalexin on Monday. He has been taking it for 2 days now and at first I thought there was improvement, but it seems to depend on how he is feeling and what is going on in his life. I guess I don't know how soon to expect a change. Isn't PANDAS in part a swelling of a part of the brain due to anti-bodies attacking good cells? I would think once the strep is gone that anti-bodies should diminish and the swelling go down. Anyone have similar experiences or advice? What bugs me is our doctor was just going to let it ride as if it was just normal while Jon's anti-bodies could have been attacking his system. Any help or advice greatly desired. Thanks!!

 

Mike

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