Re: WAS Re: School problem - need help, advice... please??? - NOW it's PANDAS

[Guest guest]

I would get your DAN to test for strep titers (ASO and AntiDnaseB, as well as IgG and IgM), Epstein Barr, Cytomegalovirus, HHV6, mycoplasma pneumonia, chlamydia pneumonia, lyme (western blot), and co-infections like erlichia, babesia, bartonella. Other infection besides strep can cause PANDAS. And, strep can be located in areas other than the throat.So, you need to look beyond a throat culture. Igenex is a really good lab to test for the lyme and co-infections. Advanced Labs and Fry are also good. Labs like Labcorp and Quest have not really invested in making their lyme tests very sensitive and they don't test for all of the brands. However, insurance converse those tests, so a western blot through them can be a good place to start. Your son's symptoms sound a lot like Bartonella, as well. Read up on the neuropsychiatric symptoms of lyme and co-infections. Here is a link to some. http://health.groups.yahoo.com/group/bartonella/message/238. Finally, test for IgG, IgM, and IgA immune function. This will give you a good picture of overall immune function and could be a big part of the puzzle.As for the school, I would definitely research your legal rights. slaw,com has grab resources. There are also really good books on full inclusion and IEP rights. I think it is common for schools to try to blame the child. Get things in writing or on tape. Document, document, document. If they really are saying he can't handle school, then they are writing his ticket to a new placement. If he is not meeting his goals and can't learn in that particular environment, you absolutely have a case. Even though they are not saying that they CAN"T educate him, he isn't getting educated and that's important. If he can't handle school, there are probably other environments he could handle better. If you have therapists (OT, Speech, etc), I'd ask them to help you define the ideal environment. And, where do you live? It is possible that others on this list may be aware of a really supportive environment that would be much less stressful for your son. Reducing stress, increasing support, individualizing approaches. It can be a huge difference. And, if your son does have PANDAS, lyme or other infections, treating those can go a long way reducing difficult behaviors and improving overall function. My son could have had most of the diagnoses you list. When tested we found strep, myco p, lyme, bartonella, CMV, and HHV6. All high. Poor kid had developed not only the PANDAS autoimmunity, but had so many pathogens his immune system was depleted and he had low IgG. So, it was a vicious circle because his immune system couldn't' even fight off all the infections.Hope you find some good answers soon - Ruth

Thanks Ruth! The PANDAS thing DOES sound like my son...he has every symptom described. Has anyone had any experience with this? It sounds like I need to have him tested for STREP...even though he doesn't have any symptoms, he could still have a low grade streptococci going on, right??

On the school thing, I have gotten Protection & Advocacy involved and they'll be at the next ARC meeting.... in the meantime, they have said he's not learning anything, but they are very resistant to saying they can't handle him - they're taking the opposite tact, saying he can't handle school ;~(

Thanks for any and all help. Shelley

>

> > Does anyone have experience with the public school not being able to handle their child and the public school having to foot the bill for a private school?

> >

> > My son is alone in a classroom with a teacher and 2 aides, and they still can't handle him. His diagnoses include:

> >

> > 1. autism

> > 2. bipolar (mood disorder)

> > 3. behavior disorder (sometimes self mutilates)

> > 4. intermittent explosive disorder and

> > 5. obsessive compulsive (not officially diagnosed, but he is)

> >

> > Thanks! Shelley Giacomini

> >

> >

>

[Guest guest]

Shelley - we live in my too. We travel to il for our Dan. If you send me an email I will give you the name and number etc. RuthSent from my iPhone

Wow! Reading up on all that opens up a whole new world of possbilities. But how do I get a DAN? What is that? I live

in Kentucky. Thanks so much for your help. We're desperate!!

Shelley

> > >

> > > > Does anyone have experience with the public school not being able to handle their child and the public school having to foot the bill for a private school?

> > > >

> > > > My son is alone in a classroom with a teacher and 2 aides, and they still can't handle him. His diagnoses include:

> > > >

> > > > 1. autism

> > > > 2. bipolar (mood disorder)

> > > > 3. behavior disorder (sometimes self mutilates)

> > > > 4. intermittent explosive disorder and

> > > > 5. obsessive compulsive (not officially diagnosed, but he is)

> > > >

> > > > Thanks! Shelley Giacomini

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

There are a lot of antibiotics that can help. Azithromycin and biaxin are two good ones. There is also a natural treatment from Raintree Nutrition that is good for myco.RuthSent from my iPad

Ruth,

How do you treat for mycoplasmas?

Thanks,

Dorote

> > >

> > > > Does anyone have experience with the public school not being able to handle their child and the public school having to foot the bill for a private school?

> > > >

> > > > My son is alone in a classroom with a teacher and 2 aides, and they still can't handle him. His diagnoses include:

> > > >

> > > > 1. autism

> > > > 2. bipolar (mood disorder)

> > > > 3. behavior disorder (sometimes self mutilates)

> > > > 4. intermittent explosive disorder and

> > > > 5. obsessive compulsive (not officially diagnosed, but he is)

> > > >

> > > > Thanks! Shelley Giacomini

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Does anyone know if high tataric acid levels are related to pandas? My sons levels are high.From my Android phone on T-Mobile. The first nationwide 4G network. etorod8 wrote:

Ruth,

How do you treat for mycoplasmas?

Thanks,

Dorote

> > >

> > > > Does anyone have experience with the public school not being able to handle their child and the public school having to foot the bill for a private school?

> > > >

> > > > My son is alone in a classroom with a teacher and 2 aides, and they still can't handle him. His diagnoses include:

> > > >

> > > > 1. autism

> > > > 2. bipolar (mood disorder)

> > > > 3. behavior disorder (sometimes self mutilates)

> > > > 4. intermittent explosive disorder and

> > > > 5. obsessive compulsive (not officially diagnosed, but he is)

> > > >

> > > > Thanks! Shelley Giacomini

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

you can fight for a home bound tutor once he is out for 10 days but you will need a drs letter supporting that

From: tmundi2

Sent: Sunday, August 19, 2012 12:22 PM

To: mb12valtrex

Subject: WAS Re: School problem - need help, advice... please??? - NOW it's PANDAS

Wow! Reading up on all that opens up a whole new world of possbilities. But how do I get a DAN? What is that? I live in Kentucky. Thanks so much for your help. We're desperate!! Shelley> > > > > > > Does anyone have experience with the public school not being able to handle their child and the public school having to foot the bill for a private school? > > > > > > > > My son is alone in a classroom with a teacher and 2 aides, and they still can't handle him. His diagnoses include: > > > > > > > > 1. autism> > > > 2. bipolar (mood disorder) > > > > 3. behavior disorder (sometimes self mutilates) > > > > 4. intermittent explosive disorder and > > > > 5. obsessive compulsive (not officially diagnosed, but he is)> > > > > > > > Thanks! Shelley Giacomini> > > > > > > >> > >> > > >>