PANDAS

[Guest Raye]

I have been to this site a few times and just saw an article by Vojdani on PANDAS. My pediatrician diagnosed my daughter with ocd but never told me about this.

 

She has had lots of strep infections!! I;m printing it out for him and making and want to get some of the tests done. I think my insurance will cover it?

 

It really seems like the doctors don't get OCD. i saw t he article on the Tourette section. sounds like it applies to touretters too. Has anyone else doen this?

Raye

[Guest LJ]

We found there was a strep connection. We didn't do all the tests that Dr. V. had down, but I can see how they would help sort things out. My child was put on antibiotics. That's all we have done so far. But its really good to have some answers. Wow. This stuff is scarey. LJ

[Claire]

Here is a link on PANDAs from the NIMH--my pediatrician also hadn't heard of this, and balked at it until I told him the source.

 

http://www.nimh.nih.gov/events/prstrepocd.cfm

 

My nephew has OCD, so I did this research and uncovered the above.

 

Good luck!

[Sheila]

Thank you, Claire, for posting that link. From what we have heard, the antiobiotics are most effective with new cases, with older cases more often requiring the more intense treatments mentioned by Vojdani. Am sure there are exceptions. But if Forum users have additional input on this, please let us know. Sheila

[Guest Robin]

Hi,

My son (13 yo) had PANDAS and I could give you a lot of info about this.....

If your child has a sudden onset of OCD symptoms following or coinciding with a strep throat, it could mean PANDAS. What actually is happening is the antibodies that the body produces to fight the strep hang out after the strep is gone and attack the basal ganglia (an area of the brain the if not normal can cause OCD).

The doctor will prescribe antibiotics first.

 

This is what happened with our son. He had so many strep infections during his childhood - also diagnosed with ADHD and Tourettes. When he was in 5th grade, the OCD got real bad (coincided with a case of strep) - he couldn't even go to school.

We got the levels of strep antibodies checked in our son's blood. If your doctor doesn't know about this, (and a lot of them don't) check out the web site from NIMH. The two levels to check are : ASO and DNASE B. Our son's levels were extremely elevated.

 

The antibiotics won't actually cure the PANDAS but will keep future strep germs away. He is now on a prophylactic dose.

 

He underwent plasma apheresis which is basically a cleaning out of the plasma. It was a 2 week outpatient procedure - we went in 6 times over the 2 week period. This removed the strep antibodies so they were within normal limits and his symptoms greatly improved.

 

The battle is not over because any virus can cause the levels of strep antibodies to become elevated. Our doctor also recommended a flu shot. Remember, this is a relatively new discovery - PANDAS - and there is still a lot of research going on. If you suspect PANDAS, try to find a child psychiatrist who has had experience treating children with this disorder.

 

Good luck

[Claire]

Hi Robin, Thanks for the input. Someone on another site posted a great link on a ton of PANDA journal articles.

 

This is definitely a case where one needs to find a doctor who knows about PANDAS.

 

http://www.neurotransmitter.net/pandas.html

 

Claire

[jsalehi]

I am overwhelmed by what i am finding out! My daughter all of the sudden began acting so unusual. It started with frequent urination. Then it evolved into crying and not being able to go to school along with extreme separation anxiety and agoraphobia. She will not go out of the house and panics. I began reading to find answers to her problems and found articles about PANDAS. It is her almost exactly. I wondered about the strep so i had a culture done and it was positive though the doctors wouldn't even look at any of the articles i had to show him. It has been five days now since she has began taking penicillin and i am beginnning to see a slight improvement. What should my next step be? Will she get better all the way? Any help would be so great.

[Guest Guest123]

I found that my child did get completely better after the medicine on the first two episodes of OCD-induced strep.

 

You might call the NIH to try to find a specific local doctor who knows about PANDAS. I found none of the pediatricians did, though they did think that an article from NIH had some merit.

 

I think that NIH said to call child psychiatrists at large teaching hospitals as the most likely place to know about PANDAS. But I would ask about PANDAS before I made any appointments.

 

My heart breaks for you, I have been there. The concept of it turning into a chronic auto-immune disorder that most doctors have never even heard of is hard to deal with.

 

You may wish to go to the Tourette's board here.

 

 

http://www.latitudes.org/forums/index.php?showforum=1

 

I lurk there, and some of the posters have a lot of success with dealing with OCD symptoms (often they co-exist with Tourettes, thus it is a common part of the discussion) using treatments such as accupuncture and supplements of certain vitamins such as 5HTP, should the symptoms linger.

 

I do want to point out that the strep tests aren't 100% effective, and not all tonsil infections are strep . Should this clear, then a year from now the intense fears/panic occur again, with a sore throat, and the test is negative, you may wish to consult an eye nose throat doctor. They acknowledge other tonsil infections not strep. It happened to my son, his test came back negative (even though his dad had tested positive for strep at the same visit), and yet the medicine cleared both the hurt throat and the fears.

 

Is your child better? Good luck. Here is another board discussing alt methods for PANDAS. Again, it is Tourettes, but again, some kids get both--PANDAS can lead to tics or OCD.

 

http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go

[Guest ronna]

I really know how you are feeling. It is so overwhelming and all I can say is that this all gets easier with time and education. I would also suggest strongly that you phone the doctors at the NIMH as your daughter sounds like a pretty classic case of PANDAS. I hope the improvement continues with the penicillin. If her symptoms return within a few days of finishing the antibiotics she may need clindamycin to completely erradicate the strep but most likely the penicillin will do the trick.

 

Watch her very close in the future for any strep. Educate her teacher and other parents about strep and let them know that it is very serious if your daughter is exposed. Teach other parents to have throat swabs done if their child is ill with a sore thoat or any symptoms of strep.

 

Parents must know also that they should not send their children back to school until their child has been on antibiotics for at least 24 hours so that they are not infectious!

 

My absolute best advice is to find a doctor knowledgeable in PANDAS or at least one who is willing to learn about it and work with you. If you phone the NIMH they may be able to direct you to a doctor in your area. It has taken us 12 doctors but we are finally in a good place with our wonderful pediatrician.

 

As you go through this remember, "You have the right to use a doctor who shows you respect and listens to your observations. You should feel comfortable teaching her what you know and learning form her expertise and experience. You should have confidence in her judgement not because she has a medical degree, but because you know her to be fair as well as responsible. You should be able to trust her not to ridicule your ideas and to give you all of the information you need to make intelligent decisions. If you cannot, then it is your responsibility to find another doctor".

 

Ronna

[Guest ronna]

I have added more information to a thread called "useful information from Ronna on strep" if you are interested. I will start a similar thread on braintalk as time permits.

ronna

[Guest ronna]

The link for the above thread is:

 

http://www.latitudes.org/forums/index.php?...p?showtopic=374

 

Ronna

[Guest michael]

Brief History: Autistic son, age 9, Diagnosed at 2 yrs., PDD-NOS / autism, partially verbal, resides with family and 2 siblings, history of OCD traits with marked increase over the last 3 years, particularly during the winter months, reaching unprecedented levels this winter.

 

We would like to discuss the possibility that PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) is gravely affecting our autistic son. We also need to find doctor, complete other tests and get experienced consult regarding treatment.

 

He has had at least 7 documented positive STREP tests over the last 5 years, and over the last 3 years or beyond we can document intense exacerbation of OCD behavior, mood swings, behavior deterioration, rituals, routines, repetition, peculiar visual and eye movements, heightened anxiety levels and compulsions especially during the December - April timeframe of each year. Each year it has gotten worse, although it seems to go into some degree of remission in late Spring early Summer. This year (2004) it has reached unprecedented levels over the last few months (December - present) creating a very sad and difficult situation for our son, his family and his therapists. We like to think of ourselves as strong advocates, informed parents, and autism veterans - but we have never seen anything like this before in terms of OCD, anxiety, aberrant behavior, and resulting tantrums -he is literally owned by his compulsions and fixations and rituals that now embody every aspect of his life, he has developed constant tic-like eye stims or movements, and if he is diverted from his fixations or routines his breakdowns are extraordinary in terms of volatility, intensity, and self injurious behavior. He is complaining of intermittent head , eye and stomach pain, and he also does not seem healthy.

 

With that said, we visited our pediatrician to perform a battery of blood and stool tests, just to see if we could determine some physiological basis for this new condition that has been seemingly superimposed over his autism without knowing anything about PANDAS. The interesting test that came back was a 470+ level for ASO titer and we are awaiting the results of the AntiDNAse-B titer (but expect it to be elevated as well). When those results were furnished, our pediatricians mentioned the PANDAS condition in passing, but were not very knowledgeable.

 

I researched it thoroughly , and found various PANDAS websites, read about the documented research, and also discovered Dr. Hollander's abstract on "B Lymphocyte Antigen D8/17 and Repetitive Behaviors in Autism, from the American Journal of Psychiatry , Feb. 1999, that clearly indicated a propensity or susceptibility for PANDAS in Autistic children. Therefore, I surmised that someone on this listpost may have a unique understanding of this condition, how it could interplay with autism , what other tests we need to perform to definitively determine diagnosis (MRI, blood, m-proteins, etc.) , and could consult with us regarding the documented preferred treatment options of Plasma Transfer or IV-IG , and possibly recommend where we could find a physician in the Philadelphia area that specializes in this condition.

 

So far, we can't seem to find anyone in Philadelphia that understands PANDAS let alone PANDAS with an autism background. However, our dilemma is time. We are in a full-blown crises mode, with our son suffering and his family struggling quite a bit.

 

Many thanks for reading this email and considering our request.

[Claire]

Dear Michael,

 

My son gets "OCD" symptoms during strep (three times, but they went away when the strep was cleared). So I can related to your 'crisis'--if only for brief periods. ;( I had difficulty finding a doctor who had ever heard of PANDAS! Finally I talked to our ENT who treated him for strep and he had heard of it.

 

 

Did you have your son tested for yeast (candidas?). I am reading more and more that OCD issues are greatly exacerbated by/related to immune issues, and I am personally convinced that part of the PANDAS issue is that the repeated use of antibiotics causes a yeast condition, which greatly aggravates the OCD symptoms by lowering the immune system functioning.

 

Here is a case study on yeast and OCD, posted by Chemar

http://www.nutritioninstitute.com/Tourette...s_Syndrome.html

 

I cannot recommend strongly enough that you to look for a DAN doctor in your area. They specialize in identifying underlying conditions that contribute to 'autism spectrum disorders', including heavy metal toxicity, yeast, low antioxidants, metabolic issues, food intolerances. My insurance covered the testing at about 50%.

www.autism.com/ari Click on DAN on the left, then finding doctors (It lists MD's naturopaths for your area).

 

 

I encourage you to go to the tics thread here. It is a very active board, and Tics and OCD are so often comorbid that we are finding treatments for one help the other. Some of our kids have aspergers, tics, TS, OCD... Remarkably, the vast majority of us have found similar underlying conditions through testing.

 

http://www.latitudes.org/forums/index.php?showforum=1

 

Ronnas on that board has a son with Pandas, as does Heather I believe. Both of them are seeing doctors/naturopaths guiding them through correcting underlying imbalances (both of their kids had yeast issues) and BOTH have had great success. What surprised me that it doesn't matter what the origin was, ie PANDAS or not, the underlying conditions and treatment is similar.

 

As for immediate relief, please ask Chemar on the board re over the counter supplements. She has found 5HTP and others very helpful for her son, and others have followed suit with success. Even so, she also corrected the underlying conditions in her son with TS/OCD.

 

God bless and good luck.

Claire

[Heather]

Michael,

 

Claire has provided some valuable sites and I just wanted to add that I, too, believe that the problems associated with PANDAS are yeast related issues. Once you have the overgrowth of yeast from overuse of antibiotics and various other things the body's immune system reacts by producing antibodies that attack its own tissues causing various disorders. Some children's genetic make up cause the tics, ocd, anxitey, etc. Other people experience arthritis, fibromyalga, etc. (whatever your genetic make up is). Regardless, they are all autoimmune disorders and it is the immune system gone awry from the yeast overgrowth. Once the yeast gets out of hand, the intestine wall becomes permeable causing all sorts of problems.

 

My son was found to have PANDAS in October with high ASO titers. I had read that with antibiotics many children lose the tics. By day 8 on the antibiotic my son was ticcing so bad (snorting every 3 secs very loudly and body heaving) I had to take him for drives to get him to sleep at night. This went on for 2 weeks all his waking hours. Now I know that sometimes the antibiotics do work to help the tics, but this was not the case with my son. I stopped the antibiotic and started the natural supplements. We first started with coral calcium water very high in many minerals. Once we started seeing the naturopath shortly after she started him on an anti-yeast supplement (Threelac) and within a month the tics were dramatically reduced. We are now working on heavy metals with a natural supplement and the tics are barely noticeable at this point. He also had OCD which has disappeared. There is much valuable information about all of the natural treatment that others have tried on the Tourette's posts.

 

Good luck. If you have specific questions or want more detail on anything, just ask. There are many on here who will be only too happy to help you.

 

Heather

[Guest Michael]

Claire and Heather:

 

Many thanks for your information. We are trying to se a DAN doctor in Edison NJ this week. I understand your comments on the yeast connection and will investigate fully.

 

I think our situation is unique subset of PANDAS , because John is autistic. I assume based on what I researched autistic children are predisposed to PANDAS due to the D8/D17 anitgen marker, but no one seems to being jumping on that theory. I don't necessarily think this is the root cause of his autism, but a big component of our child's symptoms have always been OCD like, vocal rituals (tic like), sleep rituals and disorders (many years of sleep disturbances), and OCD rituals compulsions and behaviors. As I mentioned it has just gone haywire the last three winters, with this year beeing the absolute worse - basically his life and our lives are "owned" by his compulsions, rituals, routines, etc. It literally has invaded every aspect of his life , and when we intervine the breakdowns and resulting tantrums are quite extraordinary - even by our standards.

 

The blood test was a result of pure frustration on my part trying to find something medically as the root cause and that's when we stumbled onto the PANDAS theory. The elevated ASO, STREP and antibiotic history, the seasonality and the symptoms really sem to fit. Hopefully this will lead to some relief.

 

Here are my questions:

 

1. I have been reading that the damage to the Basal Ganglia could be permanent - is that true?

 

2. Should I get an MRI to see if there is inflammation of his basal ganglia?

 

3. How would antibiotics help since the STREP is gone and only the anitbodies remain. Don't more antibiotics continue to undermine his immune system, promote the yeast theory you mentioned , and potentially lead to more problems and other infections.

 

4. Have either of you done Plasma xchange or IV-IG, and do you think it has merit, and what are the risks? Also is it difficult to find a doctor who will go this route?

 

Sorry for asking more, we are very concerned and I learning more and feeling dumber by the minute.

 

Michael