New to this - bloodwork back for son - please help if you can

[melmix]

Hi all - I am new to this board and am looking for some help.

My son has been to therapists and psychiatrists for years with not much changing with a mood and discipline problem.
He was finally diagnosed a year ago with bipolar NOS and has been on medicine -some of which made him worse and

some that did not help at all.
Finally took my son to a doctor of functional medicine and she took a ton of blood (and stool and urine - still not back).

I also noted (had to ask the pediatrician about this) that he had strep one time in early 2011 - similar time frame to

when he started having issues (pulling his hair out in a large circle on his head). He has only been on antibiotics twice -

once for the strep and one ear infection. He is 7 1/2 years old. Since then it has been hitting yelling

being mad irritable etc. All of the doctors did not think it was a possibility of something like PANS as we did not notice

an immediate onset (we did with the hair pulling but took him to a therapist since we thought it was anxiety induced).
I have not spoken to her but got the tests back and I have this info:
TSH 4.81 <4
ASO AB 859 <150
DNASE B AB 447 <376
M PNEUMONIAE AB (IGG), EIA 2.12 <9
HERPESVIRUS 6 (IGG, IFA) 1:160 1:110 Past Infection
Cytomegalovirus AB (IGG) 1.68 <.91
Cytomegalovirus AB (IGM) 1.2 >1.1 Positive

My psychiatrist says all kids have high levels of these and that it is not an issue.
Does anyone know if this means he has an issue with inflammation in the brain? Anyone have these results from their kids?
I know I should just want and talk to the doctor next week when all the tests are back but I am searching so hard for something.
He was asked to leave camp for the summer since they could not control him.
Thank you so much.

Melmix

[pr40]

You are very unfortunate that your kid had to see such poor doctors. no, all kids don't have the kind of results yours does AND the symptoms he has. in all, they tell you that your kid was sick in the past. They indicate possible PANDAS or PANS.

If I were you, I would start using ibuprofen and get in line to find a better dr. See the kinds of tests under pinned materials on this site and if you did those just recently, post the results on this forum as they come.

Otherwise, your try to make apt with a PANDAS/PANS specialist

When you go to see your dr, go with an argument prepared saying that your kid should try long term abx, the protocol suggested by NIH for PANDAS/Pans, since psychotropic drugs did not help and he had strep etc. insist on sudden onset after the strep in 2011.

get angry if you need to -- the point of prophylactic abx is to prevent future infections and give a break to immune system. abx also have some effect on histamine in the brain and some anti-inflammatory effect.

[MaryAW]

I agree with pr40, get to a PANS/PANDAS doctor and try ibuprofen in the meantime.

 

Here is a link to a thread from this forum of recommended doctors:

 

http://latitudes.org...?showtopic=5023

 

Here is a link to PANDAS Network's list:

 

http://pandasnetwork.../provider-list/

[nicklemama]

Where on earth did the psychiatrist get his/her medical degree? You have one very sick, multiply infected little boy. These infections need to be addressed. You need an expert to help guide you. I seriously doubt your son is bipolar. I was told that once too. It's a load of BS. I am not a doctor but I'd bet a lot of money your son has PANDAS/PANS. I also recommend Lyme testing, if you haven't already.

[NancyD]

I agree with Nicklemama! Find an expert to test your DS right away and dump the psychiatrist.

 

We've been chasing this for 18 years and are still peeling off the layers. My DD has had more DSM diagnoses than you could imagine and they were all wrong. If I had known then what I know now, I would test for Lyme through IGeneX (if positive, look for other co-infections). I would also test for mold through Shoemaker panel (Labcorp and Quest) and RealTime Labs mycotoxin panel. And lastly, I would do 23andMe genetic testing. There were many other infections along the way, but the true underlying causes seem to be Lyme and co-infections, mold, and detox/methylation problems.

 

For so many children, PANDAS/PANS is just the tip of the iceberg.

Edited August 3, 2014 by NancyD

[melmix]

Thank you so much for the responses. This has been such a tough road.
He was tested for Lyme through a blood test (not sure which one) and I am sure that there will be a lot more information with the stool and urine.

I have actually tried the 23andme genetic testing - got it for all of my family except my son - his spit apparantly didn't have enough genetic info

twice so they declined to try again. I am still trying to get it done although I have mine and my husbands and we do have some issues although I know

my son does not have problems with the C677T and A1298C since the doctor also checked for that.

I just gave him a dose of ibuprofen - I figure I can do that for a few days with no harm to his stomach just to see if it helps.
Will post more on Thursday after I get stool/urine.

I so we can get something to help him.

[NancyD]

One other thing I would do to minimize the psyche symptoms ...

 

Clean up his diet. Eliminate all artificial dyes and additives. Processed foods can really exacerbate the symptoms.

 

Gluten, dairy, and soy can also be a problem, causing further inflammation. But I would start by eliminating the dyes and additives and giving dye-free ibuprofen. You may notice he is a lot calmer.

[PIK]

He's probably not bipolar. I was first diagnosed bipolar, then it turned into schizophrenia. BS!!! It was all OCD issues related to strep. Please get your kid to a competent doctor!

[Missmom]

Did your doctor do a simple throat swab/culture to look for active infection? Strep can also hang out in other parts of the body but that would be a good place to at least start. If they did not then I would run to a clinic and just get a simple swab and culture. If there is active infection then that would be the easiest way to get some antibiotics and get started on some treatment. The standard 10 day dose is not nearly enough for most pandas kids but at least you could see if there would be any improvement at all while taking the abx. Also, make sure you ask for something stronger than amoxicillin. Amoxicillin does not work on some strains of strep and may not tell you anything. Ask for something like augmentin or Zithromax.

[Wombat140]

Once knew a lady who was diagnosed with bipolar disorder by mistake for Asperger's, of all things. Not even a particularly atypical case of Asperger's as far as I could see - I couldn't work out why they'd thought it was anything like bipolar at all. Bipolar does seem to be a diagnosis that's sometimes just given when they don't know what's going on, whether it fits or not. Of course, there is such a thing as actual bipolar disorder, but the diagnosis seems to turn up in some rather surprising places that don't seem to have a lot in common with it.

Edited August 7, 2014 by wombat140

[Dedee]

A psychiatrist should not be allowed to read labs of a child with infection and immune issues unless they have been trained by another specialist. You should immediately switch Doctors and find a LLMD or a PANS specialist. Do not waste your time with anyone else.

 

Dedee

[riffleshell]

Yes. One simple place to start: An ASO of 859 is far, far higher than normal for a child that has not had a strep infection since 2011. I say "simple" because any decent pediatrician (even one who is not a PANDAS expert) ought to raise an eyebrow at that. You might be able to get someone to give you some antibiotics based on that number alone.

 

Good luck!

[melmix]

So my son was diagnosed with PANDAS by the new functional neurologist.

His old Psych doc said she is a quack and is just selling me supplements.
He said there is no way he has PANDAS and that without obvious tics he does not

have OCD even with hair pulling and his hoarding type issues. I am going to see Dr T

in Ramsey today as he is very close and got me an appt right away. I hope I get something

to help but already know my Psych doctor thinks anyone who has seen hundreds of PANDAS

cases is also a quack since he says it is so rare he could not have seen that many cases.

What is the reason this has to be so hard?????

 

[nicklemama]

That is the question we've all been asking. After 5 years, I'm sick of poor medical care and ignorance surrounding PANDAS.