Really Confused

[cara615]

Yes, I am dying right now because how can this kid go to school when he can't stop saying "ah" every single second???

 

I NEED to figure this out and get relief!!!! My fear is that we waited too long. His tics started back when he was 3 (2+ years ago) but they were so infrequent and then went completely away so we thought it was a phase. These phases would come and go and I only went for a dx when things got CRAZY SEVERE in May. He had 10 different vocals, 10 motors and they all ramped up over a period of 3 weeks. Don't know if he was sick at that time, never thou

[cara615]

thought to test him for anything. didn't know anything about PANDAS.

 

I just need to know we are going to get past this. I am living in .

[qannie47]

Abx help, but not in three days...it takes a full round, if not more to rid of symptoms. My son was not symptomatic of strep, yet he developed Scarlet Fever...The strep that proceeded his first Pandas episode showed no symptoms of Strep either. He tested positive for strep for 6 weeks and it took 3 rounds of abx to rid him of strep. At one point, his doc was concerned that he was a carrier, but he finally tested negative. At that time, his aso titers were measured, (about a month after finally testing negavtive), and his titers were normal. Not all kids show a rise in titers and that itself speaks to an autoimmune issue...at least that is what I have understood. IF he has had neg results in the past, I have to assume that he is not a carrier.

[JoyBop]

I am right there with you. My son is in 3rd grade and barely functioning in school, although he is somehow able to hold his emotional issues, OCD and anxiety together in school, he is unable to do his work and just wanders around the classroom at the most inappropriate times. I get very little support from the school at all but I am about to change all of that.

 

So we are in the same place. Here's what I know (think). They've had this for a long time. Because of that it may be more chronic than other cases. I have read what Dr. Swedo has written and she says that there does not seem to be permanent damage to their brains and they will get better. They will get better if we stay diligent and treat them the best way we can. That means identifying the triggers the best way we can, avoiding them when possible, and getting the support and services they need in school so they can forge on. For some kids that means staying home and getting tutored (for those either too at risk for germs or too incapacitated to leave the house)

 

How does the school deal with his tics? Is he aware that he is doing it? Is it causing him emotional damage?

[cara615]

So if he is not a carrier then that means he should have rising titres, right? That would convince our Dr. that he has PANDAS. Either way I will keep swabbing him until the STREP is cleared.

[cara615]

Right now his teacher said his tics are not that disruptive and no one notices at all. he is doing great in school. no other issues besides the tics (for now). They are willing to work with me and get him what ever he needs. right now no IEP or 504 plan has been suggested (and I asked if it was needed too!). But this was when his tics were barely even there. Now we have to forge through who knows how many weeks of high ticcing and how that will affect him in school - who knows?

 

he knows he is ticcing and he can't stop. its not upsetting him really because he is so young right now.

[qannie47]

My child is textbook Pandas, yet NO rising titers after 6 weeks of Strep....Unfortunately, I don't think there is a one perfect way to definitively diagnose or rule out Pandas. It is a collaborative, and clinical diagnosis.

[cara615]

Well, from what I understand I need to treat it with abx until his swab is clear of STREP, correct?

[Mommy2MCL]

Where are you? Do you have a PANDAS specialist? I really think the way it sounds you should pursue that... It took my daughter until day 8 to see help with Amoxocillin... with her last strep infection.

[cara615]

We see Dr. Tasneem Bhatia here in Atlanta. She has experience with PANDAS and believes in it. We have been seeing her for TS and treating my son holistically. We are GFCF, corn free, low sugar. We killed off yeast on a 6 week protocol of GSE and he also gets a methyl B complex to address poor methylation. he gets 1200mgs of NAC to help him detox and it helps!!! All this stuff got him from SEVERE in May to practically 100% resolved from Aug - Nov!

 

i just don't think Dr. Bhatia is going to be convinced of PANDAS if she does not see rising titres. That is what she mentioned to me when we took his blood.

[JoyBop]

All rising titres would prove is that your child has strep. It's not a PANDAS test, but it can support the diagnosis based on the clinical presentation. Especially if you missed the infection on the swab.

 

Heres how it helped for us to have positive swab and titres: My son flipped out one day and we couldnt figure out what was going on. We bounced around from psychologist to psychologist and nothing really helped. He got so bad that he ended up completely out of control and suicidal. Thats when we ended up at the psychiatrists office who sent us out for a strep infection. BINGO! It was strep and confirmed her suspicion of PANDAS. The abx helped tremendously which further confirmed the theory. But even if we didnt have a positive test, we would have been trialed on abx and that would have been the clue. So you see, it's not that cut and dry, but it sure helps to serve as a clue.

 

I hope you are documenting the rise and fall of symptoms and getting copies of the positive strep tests for future reference.

 

IF your child had TS I highly doubt that abx would be helpful. That would serve as your clue.

Edited November 16, 2013 by JoyBop

[cara615]

Yes, everything is documented. His tics were barely there since aug and over the past 2 weeks they got worse. Everyday they would increase and increase until we got the positive STREP test. Then we put him on abx and they got even worse! Now they are stable at this very high level.

[cara615]

But our Dr. thinks that with TS, an infection can cause the tics to get worse. I'm sorry but this is not just worse, its dramatically worse.

[cara615]

and just so you know what worse means, he went from:

 

infrequent quiet little tics like sucking his teeth and they would be spaced out over the course of the day. he would go hours without a tic.

 

Now he is yelling "ah" "eh" more than 60 times a minute and he can't go more than 15 minutes without a tic. His speaking voice is also elevated and he is "yelling" when he speaks.

[JoyBop]

How does your doc rule out PANDAS given the host of other symptoms and correlation with strep infections and improvement with abx? That would be my question.

 

AT least you are getting treatment for the infections. How does your doc feel about prophalactic abx to prevent future strep infections?