PANDAS HELP PLEASE - Where do I start?

[906bell]

Hi everyone, I am so thankful to have finally found this forum group. A brief history: over a year and half ago my son became a different child overnight. He has not had a known strep infection but has had recurrent ear infections with bilateral tubes, recurrent croup and other general childhood illnesses. He was recently diagnosed by a neurologist with OCD, Tourettes and anxiety. He is selectively mute at school. He is a very bright boy but when we have 'episodes' I lose my son to his compulsions and meltdowns. These 'cycles' last 1-2 heartbreaking months and then my son is back for 2-4 months until we hit another 'cycle'. During the better cycles there are mild things present....some affirmations to responses and the selective mutism continues at school. After several doctors and begging our new pediatrician has agreed to ASO and antiDNase tests. My questions for all of you who have been through this...

1) Are those tests reliable?

2) Do any of you know of a specialist in the St. Louis area?

3) Besides pandasnetwork.org, qos.com and this forum are there other helpful websites for pandas info?

 

Thank you everyone!

[peglem]

our new pediatrician has agreed to ASO and antiDNase tests. My questions for all of you who have been through this...

1) Are those tests reliable?

 

 

Thank you everyone!

I don't know if reliable is the right word. Limited, frequently misinterpreted...those might be better terms. Those tests cannot rule out a strep problem, only can confirm one. Further, they are testing for antibodies to strep exotoxins, which are not the antibodies that cause PANDAS.

There is no lab test for PANDAS.

Here's a link to info about ASO titers- probably more than you wanted to know:

http://www.latitudes.org/forums/index.php?showtopic=3756

[LNN]

You can also find helpful information at www.pandasresourcenetwork.org and www.webpediatrics.org

Given your cycle of illness, you may also want to look into lyme (or visit the latitudes lyme forum).

 

Pandas and lyme (or bartonella - another tick-borne illness) can both present with similar neuro-psych symptoms.

You should also read the posts under the "helpful threads" heading at the top of this forum page.

 

But don't let yourself get overwhelmed. These things can suck you in and make you lose weeks of sleep. It's horrifying to think of bacteria doing so much damage to your child.

 

But remember that as awful as Pandas (or lyme) is, you do not have to find all the answers in one all-nighter or one weekend on your PC. We've all been there. If your child does have something like this, it will be a marathon, not a sprint back to complete health. Take care of yourself - your family is going to need you. And we'll all answer as many of your questions as we can.

[kimballot]

Peglem and LLM have given you good advice. You are on the right track. ASO and DNASE B are a start and will provide 2 pieces of the puzzle. Some kids have a 3 or 4 piece puzzle, so these 2 pieces start to make things pretty clear. Some kids have a 50 piece puzzle, and the 2 pieces are a small start to the task ahead - but the puzzle will eventually become clear as you continue to work it. When we were starting to look at PANDAS with my son we looked carefully at his immune system and looked for infections that could be triggering this.

 

Children with PANDAS/PITAND have antibodies that interfere with their brain function when the antibodies should be fighting infection. Strep is one of those infections. Lots of kids also have mycoplasma (which causes respiratory problems), and/or lyme infections. Each of these is a piece to the puzzle.

 

You can ask your child's doctor to test Mycoplasma IGM and IGG (which will tell you if your son has had a recent or past infection with mycoplasma) and check for lyme using an Elisa and Western Blot (this test is usually covered by insurance, but is not as sensitive as some other lyme tests). If the lyme test comes out positive then you know you are dealing with lyme. If it comes out negative it does not necessarily mean there is no lyme, and you will need to look at the whole picture - but folks on this forum and the lyme forum can help you with that.

 

Given your child's frequent croup and ear infections, he may have some immune problems that make it hard to clear infections. Has he ever had an immune work up (where they look for antibodies like IGG and IGA?). You can ask your pediatrician about an immune status panel to check for this as well.

 

I hope that is not information overload... you can always PM someone if you want more specific info.

Edited February 5, 2011 by kimballot

[lyme_mom]

I agree-look into Lyme. Kids w Lyme have lots if infections and symptoms come and go in cycles. Dr Chriss(sp?) in southern Missouri is a Lyme expert w a good reputation. He worked under dr masters who discovered the southern version of Lyme disease. I don't think there are any llmds in St Louis. Kansas city has some too-email ilads.com. Also review lists of Lyme symptoms-others in the family also often have it. A child who is sick often from birth is the kind of child who might have congenital lyme. It's very treatable so hang in there. Llmds are really talented.

[PhillyPA]

I am sending you a pm.

[906bell]

Thank you everyone for your posts and info. What is a llmd? If my son does not show chronic fatigue could he still have lyme or mycoplasma? I am willing to look at everything but I know I will have difficulty getting pediatrician on board.

 

Also, for those of your whose children started on abx....was it after testing or were your docs willing to see if abx helped? How long were initial abx course for and which abx? Thanks again!

[airial95]

Just thought I'd chime in.

 

First of all - welcome. Sorry you had to find us but you've come accross a very supportive group.

 

My son has confirmed PANDAS - dx by our pediatrician in Jan 2010, and confirmed by Dr. Murphy (one of the leading experts) in July 2010. He has NEVER had elevated titers in his bloodwork - even when he had a postive throat culture. So be aware that the absence of elevated titers does not rule out PANDAS.

 

Our pediatrician started us on abx after several months of increasingly bad/bizarre behavior following an impetigo infection. It took us a while to seek help since our son was younger, we thought he was just going through the "terrible twos". He started us on abx as a "let's see what happenes" kind of dx. He could see the OCD/ADHD and ODD in our son, and the alternative was going the psych route. He gave us a 30 day supply of azith, and within 10 days the violence was gone, and within 14 days, we started to recognize our son again (about 50% back to normal).

 

Not sure if this helps - good luck!

[EAMom]

I would also rec. getting everyone in the family throat cultured (do the 72 hour test if the strep rapid is neg). Even if you're going to start antibiotics regardless, I would do a throat culture first. It is one more piece of the puzzle. It's also important to check family members, to make sure they are not carriers ( positive throat culture but no sore throat/fever). PANDAS kids will react if a family member is carrying strep. Also, lots of PANDAS kids will culture positive without any signs of strep (aside from beh. changes or tics).

 

Also, I agree with the others that strep titers. My PANDAS dd has always had low strep titers, despite PANDAS OCD severe enough to require hospitalization (anorexia, acute food refusal) and a positive throat culture (no sore throat at the time, although she did have a fever/likely strep symptoms for several days 2mo. prior when the beh. changes started). My younger dd (non-pandas I think) was ALSO positive on the rapid when we finally learned about PANDAS and knew to demand cultures(no symptoms, no sore throat).

 

Strep titers can be useful if there are no known prior strep infections and cultures are neg...and you are trying to gather "evidence" of strep. But, not all PANDAS kids will get elevated titers, even those with positive cultures.

Edited February 7, 2011 by EAMom