What to ask immunologist?

[norcalmom]

Hi all. I'm sort-of new...I've actually been reading for months, this is my first post. Thank you all for all your stories. I cannot tell you how they have helped us. My son, now 11 years, was diagnosed with pandas 5 months ago. Tomorrow he has an appointment with immunologist in our area that is aware of pandas, but not an expert (there aren't any around here).

Long story short, I cannot clearly make a strep connection. He has all the symptoms and as responded very positively to antibiotics. Since getting on them he has had several very minor exacerbations, one came with a croupy like cough, one came BEFORE he got a cough (but I was sick) and one seemed to be anxiety related and lasted for only 2 days and disappeared (he as going to sleepover science camp with his class).

Since I was not 100% bought into the pandas diagnosis at first (because we can't make that strep connection! Although had pnemonia at age 6, and yes this could have been going on that long..he's always had weird "grumpy phases" we would call them, bizarre fears, and sensory issues. I wanted to rule out celiacs. And the antibiotics had given him some diarrhea. So I took him to (yet another)dr.) Gastoenterologist this time ran some tests, one happened to be IgG. Can back very low. He is asymptomatic. I've read that lots of pandas kids also have allergies and lots of colds and infections. That's not him,he's pretty heathy in that way . The gastroenterologist (NOT a pandas beleiver I discovered) just told me he didn't have celiacs or any of the "gut bugs" she was screening for, and all is tests were OK. I got copies of the tests, and they are not all OK. In addition to the low IgG (which i keep seeing in pandas posts) he has several other borderline and slightly below levels.

 

Does anyone have ny advice on what I should be asking immunologist? Cunningham is mailing my CamKinase test as we speak. I hope to use it in my decision of weather to get IVIG or not. Although he has "minor" symptoms compared to many, one of the things he does when he has an exacerbation is a self-harming "compuls-tic". His tic-like compulsion, to look directly into the sun. It's fast, and thank goodness he doesn't have it bad like the tics he had before we got him on the antibiotics, but still, I'm obviously worried he could cause permanent injury to his eyes. Thanks all.

[thereishope]

Welcome. In regards to strep, it can occur in many places, not just the throat. It can be in the throat, the gut, ear infection, sinuses, anal, vaginal. To make things more complicated, not every will have a rise in titers when they have strep.

 

Then there's PITAND. This is when an infection sparks the symptoms but isn't limited to strep. Things such as Mycoplasma Pneumonia can cause it to surface.

 

So, if you cannot find a strep connection no matter how hard you look, you can also look into things like Mycoplasma Lyme, etc.

 

Wth some children, the first episode is the one sparked by an infection, but then they may have subsequent minor or major setbacks with even viruses, stress, allergies, exposure to illness, etc. Once that Pandora's box opens, it never fully closes for some kids.

 

Here is a flowchart that may help in trying to figure out steps to take...

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

How are his bowel movements now?

Edited April 23, 2010 by Vickie

[thereishope]

I'm looking at your screen name. Are you in Northern California?

 

Here's a link to doctors that some have seen on this forum. Not all are experts, but have been helpful to someone...

 

http://www.latitudes.org/forums/index.php?showtopic=6428

Edited April 23, 2010 by Vickie

[norcalmom]

Vickie,

Thank you! AND Thanks to Buster for the flow chart. We've been pretty much following that same route but haven't checked for microplasma pnemonia...so will add that to the list. Yes, I am in Northern California, and we finally got diagnosis from Dr Thienemen in Palo Alto (after a referal from Diana P). She is a Phychiatrist, and although treats a number of pandas patients, doesn't have any immunologist or rheumetologists or infectious disease doctors in this area that she can refer us to. I am now searching and asking specifically for pandas awareness before making appointments, and figuring out that I will need to do some education and prompt them for possibilites as we go. We wasted alot of money early on with neurologists and other doctors that couldn't help us in the beginning.

I can't believe that Stanford doesn't have anyone working on this.

We should have have immuno work up done earlier, but becasue he has no allergies or history of upper resperatory infections etc...I didn't think he needed that, since the only place I've seen it referenced is on the pandas network site regarding kids that also had alot of infections. No doctor ever brought it up (even Dr. Thienemen, she only had his ASO and titer done).

It was a fluke that the gastroenterologist threw in IGG level. AND I woldn't have even known it was so low unless I asked for copies of all the tests, since she said that tests were all fine.

His stomach is fine...I was just being paranoid and ruling out celiac. He has a somewhat sensitive stomach. I have to be dilligent about the probiotics, and when he was on 500mg/day Azith he gets nausea if the pills are taken at same time, he has to space them out, same if he takes advil (which gastroenterologist says is much worse for stomache than antibitoics). He is now on 250 azith/day, if he has any symptoms I will add an advil or the extra azith for a few days.

I'm just wondering if the defecient IGG is a condition he had first, or is it caused because his immune system is working overtime. Either way, seems like low IGG is at least as predictive as ASO and anti bnase titers.

 

Buster...you are the stats guru. If you read this, do you have any idea how many pandas kids also have low IGG?

 

thanks again

PS sorry for all the spelling erros typos - I'm in a rush. Is there a spell check in this forum entry box or do I have to copy/paste into another program?

[thereishope]

No spell check to my knowledge. That's why you'll often see my posts edited. I post, then I see the errors

[Buster]

It's a little difficult to answer your question based on the numbers I've got. The prevalence of Selective IgG Deficiency seems to be 1 in 10,000--however, the reports are all over the place here and not specific to children. Primary Immune Deficiency is about 1 in 1200 (in the US where we run such tests) but again, no statistics on children. The rate of neuropsychiatric symptoms comorbid with these disorders does not seem to be common enough to be listed as a known symptom. This indicates that PID and SID are likely comorbid rather than causal.

 

What I've seen so far in the reports on this forum is about 10% of the cases reported have true "low" IgG, about 20% have IgG subclass 2 levels at the low end of "normal" -- however, this is extremely selective reporting because folks who have normal results on the test usually don't post.

 

My belief is that PANDAS is a result of three things:

1. a genetic predisposition to an unusual immune response
   
2. an activation of T-cell that binds with a memory B-cell to create anti-neuronal antibodies
   
3. a breach of the blood-brain barrier that allows the antibody to reach the basal ganglia
   

The exotoxins of GABHS are superantigens and tend to activate T-cells not specifically oriented toward GABHS. So for individuals with a genetic predisposition (1), the longer GABHS is around, the more likely the wrong T cells and their corresponding B-cells will get activated generating the anti-neuronal antibodies (2) and the exotoxins are quite inflammatory causing (3) the breach of the BBB.

 

For those folks who have trouble clearing streptococcal infections (i.e., have low IgG), they have an increasing the risk for activating the B-cells that create the PANDAS antibodies. Thus low-dose IVIG helps these folks clear strep infections and stay healthy (preventing the PANDAS cycle).

 

For other people who have normal IgG or even hyper-active IgG -- they seem to need help closing the BBB (#3) and thus high-dose IVIG is being used to reduce inflammation.

 

 

Sorry I can't be more definitive here.

 

Buster

 

 

 

 

Buster...you are the stats guru. If you read this, do you have any idea how many pandas kids also have low IGG?

 

thanks again

PS sorry for all the spelling erros typos - I'm in a rush. Is there a spell check in this forum entry box or do I have to copy/paste into another program?

[sf_mom]

I will also add that I was told by an immunologist at Stanford Children that there are plenty of children with fully intact immune systems that suffer from auto-immune. Our older son, normal IGGs, our twins.. tons of deficiencies in IGGs. I also understand these numbers can fluctuate based on illness and recovery. In order to prove PID and SID these tests need to be run several times and 3 months apart minimally. I'll be interested to know if you find out something different.

 

I'll add to Buster's comments that based on Dr. K's experience.... low Iggs or low normal Iggs are currently inconclusive with regards to PANDAS. BUT, having the results 'might' help with securing insurance coverage.

Edited April 24, 2010 by SF Mom

[nevergiveup]

I want to add a fact that has not been mentioned. Immune deficiencies lead to higher risk for autoimmune disease. Therefore having an immune deficiency puts you at higher risk for autoimmune disease. So I am assuming this is why we are seeing a much higher instance of Pandas in immune deficient children. I have an immune-rheum doc who says he has several kids with neuropsych symptoms and immune def and autoimmune disease. This doc does not treat pandas nor does he necessarily believe in pandas but he does know that several of his immune deficient kids have tics and ocd.

[Buster]

low Iggs or low normal Iggs are currently inconclusive with regards to PANDAS. BUT, having the results 'might' help with securing insurance coverage.

 

This is very true and more than one parent has commented on feeling weirdly happy when their child was diagnosed with PID -- i.e., that they could get a treatment that might help both diseases -- whether related or not.

[norcalmom]

Thanks everyone. Interesting. Are the docs using different IVIG doses based on low/ high IGG levels? Our sons isn't actually all that low according to the immunologist we saw yesterday. Its just slightly low at 704 - range being 820-1800.

 

But we are doing more tests to find out more detail.