Pandas, or something else?

[peagreen]

Hello,

 

I've been lurking for a while, hoping to make some sense of all this...and I could use some help.

 

I have two children (DD, almost 3YO and a DS, 7). My son was diagnosed on the autistic spectrum when he was very young (14 months), which was a controversial diagnosis at the time. We started DAN! biomedical interventions and dietary changes immediately, and he improved quickly, shedding his diagnosis by age 3. Though he no longer has a spectrum diagnosis, he still has symptoms that look like ADHD, which get dramatically worse for a period of several weeks following ANY insult to his immune system.

 

We have known since he was 2 that he does not mount antibody responses to P. Strep, or Candida, and has both low IgG and IgA. Three immunologists have dismissed these lab findings as meaningless because he has not had re-current respiratory/ear infections. They all wanted to re-vax, then check titers to see if there was an immune response. I declined these requests, not feeling that safe for my son. All three immunologists would go no further with us unless we re-vaxed.

 

My son rarely comes down with cold type viruses. He starts to get symptoms of a cold, but then the symptoms just vanish in a day or two...but the behavioral changes still arrive, and last for many weeks. When he gets a fever type virus, he always spikes fevers of 105+ for 3 days, but it can be reduced with Ibuprofen/tepid bath. I'm not sure whether his immune system is over or under active, or both.

 

What is different about my son, is that he doesn't have the typical symptoms of PANDAS. He doesn't seem to have OCD or anxiety in the way I see it described here, though he does get very ridged in his thinking, demanding that things be a his way. He becomes fixated on his ideas, and melts down if things don't go his way. He also a drunken behavior that comes and goes that I have always associated with yeast. He has to be on a maintenance dose of antifungal medication or he is so loopy he can't function. But even with that, he still has episodes of very strange behavior in which he can't stop laughing and using potty language, and bouncing off the walls/floors, and hitting himself in the face and laughing about it. These sudden episodes can last 5 to 45 minutes, and then he's normal again.

 

My daughter is more typical, but also develops loopy/temperamental behavior and sleep disturbances for several weeks following viral infection. She often needs anti-fungal and antibiotics (Flagyl) to return to normal.

 

I have sent my son's blood to Dr. C, but haven't rec'd results yet. He wasn't in an exacerbation at the time, so I don't know if that will be conclusive. His doctor ran DNASE-B and a bunch of other tests, which were normal. I would love to know your thoughts. Is there anyone out there with a case like this? And if so, did what therapies helped?

 

Also, I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response. Since my son has low IgA, could he still have IVIG. Is he a good candidate?

 

Thanks for your help!

 

Paula

[bubbasmom]

I was just posting about my son who has a little bit different symptoms that others that post here. He has not so much the OCD or torettes as he does the 'fits of rage' and if things are not HIS idea he's not going to cooperate. The sleep disorder is a big one for him, and maybe a little separation anxiety mixed in, but only at night. Sometimes I have to sit holding his hand for as much as 2 hours to get him to sleep (and he's 12 long past the mommy putting him to bed age). The foul language only during 'an episode'. Episodes lasting about and hour or so. The refusal to make eye contact and curls up in a corner. I am ABSOLUTELY not a nurse, doctor, or even very experienced in PANDAS, but to me your son sounds like my son. And we have gone to Dr. K in Chicago for a second opinion and he confirmed PANDAS.

CONFUSING ISN'T IT! THIS WEBSITE IS AWESOME THOUGH BECAUSESOM OF THESE PARENTS ARE SO EXPERIENCED!

 

Hello,

 

I've been lurking for a while, hoping to make some sense of all this...and I could use some help.

 

I have two children (DD, almost 3YO and a DS, 7). My son was diagnosed on the autistic spectrum when he was very young (14 months), which was a contraversial diagnosis at the time. We started DAN! biomedical interventions and dietary changes immediately, and he improved quickly, shedding his diagnosis by age 3. Though he no longer has a spectrum diagnosis, he still has symptoms that look like ADHD, which get dramatically worse for a period of several weeks following any insult to his immune sytem.

 

We have known since he was 2 that he does not mount anitibody responses to P. Strep, or Candida, and has both low IgG and IgA. Three immunologists have dismissed these lab findings as meaningless because he has not had re-current respiratory/ear infections. They all wanted to re-vax with then check titers to see if there was an immune response. I declined these requests, not feeling that safe for my son. All three immunologists would go no further with us unless we re-vaxed.

 

My son rarely comes down with cold type viruses. He starts to get symptoms of a cold, but then the symptoms just vanish in a day or two...but the behavioral changes still arrive, and last for many weeks. When he gets a fever type virus, he always spikes fevers of 105+ for 3 days, but can be reduced with Ibuprofin/tepid bath. I'm not sure whether his immune system is over or under active, or both.

 

What is different about my son, is that he doesn't have the typical symptoms of PANDAS. He doesn't seem to have OCD in the way I see it described here, though he does get very ridged in his thinking, demanding that things be a his way. He becomes fixated on his ideas, and melts down if things don't go his way. He also a drunken behavior that comes and goes that I have always associated with yeast. He has to be on a maintenance dose of antifungal medication or he is so loopy he can't function. But even with that, he still has episodes of very strange behavior in which he can't stop laughing and using potty language, and bouncing off the walls/floors, and hitting himself in the face and laughing about it. These sudden episodes can last 5 to 45 minutes, and then he's normal again.

 

My daughter is more typical, but also develops loopy/temperamental behavior and sleep disturbances for several weeks following viral infection. She often needs anti-fungal and antibiotics (Flagyl) to return to normal.

 

I have sent my son's blood to Dr. C, but haven't rec'd results yet. He wasn't in an exacerbation at the time, so I don't know if that will be conclusive. His doctor ran DNASE-B and a bunch of other tests, which were normal. I would love to know your thoughts. Is there anyone out there with a case like this? And if so, did what therapies helped?

 

Also, I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response. Since my son has low IgA, could he still have IVIG. Is he a good candidate?

 

Thanks for your help!

 

Paula

[EAMom]

Paula....

I'm glad you sent serum off to Dr. Cunningham....she is well respected and our immunologist was willing to do IVIG b/c of her results.

 

If you could get someone to write a script, a 1-2 mo. trial of azith. or high dose augmenting would be great.

 

There are other kids on this forum that don't have primarirly OCD or tics...so I would aggre that your son very well could be PANDAS even if he isn't a "text-book case".

 

Where do you live?

[mama2alex]

First, I am very surprised that 3 immunologists don't believe your son has an immune deficiency with low IgG and low IgA. I read the following on the Immune Deficiency Foundation site: "A second major problem in IgA deficiency is the

occurrence of autoimmune diseases. These are found in about 25% to 33% of patients who seek

medical help. In autoimmune diseases, individuals produce antibodies or T-lymphocytes which react

with their own tissues with resulting inflammation and damage. Some of the more frequent autoimmune

diseases associated with IgA deficiency are: Rheumatoid Arthritis, Systemic Lupus Erythematosis

and Immune Thrombocytopenic Purpura (ITP)." In other words, just because he's not having recurrent infections doesn't mean there's not a problem!

 

I would talk to a new immunologist who is familiar with PANDAS. Where do you live? Maybe someone on this forum can help you find a better immunologist to work with.

 

Did they check his IgG subclasses?

 

Also, you said, "I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response." I don't understand that, because IVIG is used commonly to treat a variety of autoimmune illnesses - why would anyone have an autoimmune response TO IVIG?

 

Also, if your Cunningham number comes back low or borderline, you might want to rerun the test if/when he's in an exacerbation. It definitely sounds like PANDAS to me. I don't think there's any such thing as a typical case.

[EAMom]

Also, you said, "I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response." I don't understand that, because IVIG is used commonly to treat a variety of autoimmune illnesses - why would anyone have an autoimmune response TO IVIG?

 

I've heard that too...but don't know details/specifics. Maybe some types of IVIG are safer than others? Maybe someone with more info. would know.

http://www.immunedisease.com/patients-and-...deficiency.html

 

Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals.

 

Anyway, if it turns out that IVIG isn't going to work out...then your son could always have plasma exchange/plasamaphoresis.

[peagreen]

Paula....

I'm glad you sent serum off to Dr. Cunningham....she is well respected and our immunologist was willing to do IVIG b/c of her results.

 

If you could get someone to write a script, a 1-2 mo. trial of azith. or high dose augmenting would be great.

 

There are other kids on this forum that don't have primarirly OCD or tics...so I would aggre that your son very well could be PANDAS even if he isn't a "text-book case".

 

Where do you live?

 

 

I live near Seattle, but am willing to travel to get answers.

[peagreen]

First, I am very surprised that 3 immunologists don't believe your son has an immune deficiency with low IgG and low IgA. I read the following on the Immune Deficiency Foundation site: "A second major problem in IgA deficiency is the

occurrence of autoimmune diseases. These are found in about 25% to 33% of patients who seek

medical help. In autoimmune diseases, individuals produce antibodies or T-lymphocytes which react

with their own tissues with resulting inflammation and damage. Some of the more frequent autoimmune

diseases associated with IgA deficiency are: Rheumatoid Arthritis, Systemic Lupus Erythematosis

and Immune Thrombocytopenic Purpura (ITP)." In other words, just because he's not having recurrent infections doesn't mean there's not a problem!

 

I would talk to a new immunologist who is familiar with PANDAS. Where do you live? Maybe someone on this forum can help you find a better immunologist to work with.

 

Did they check his IgG subclasses?

 

Also, you said, "I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response." I don't understand that, because IVIG is used commonly to treat a variety of autoimmune illnesses - why would anyone have an autoimmune response TO IVIG?

 

Also, if your Cunningham number comes back low or borderline, you might want to rerun the test if/when he's in an exacerbation. It definitely sounds like PANDAS to me. I don't think there's any such thing as a typical case.

 

 

I don't have the actual lab results from the last round of lab testing that was just done. The nurse just told me over the phone that there was low IgA and IgG. In previous testing, he had low subclass IgG1, which I think is the worst one.