Bump in the road...we had a relapse

[mom md]

We were almost 4 months post-PEX and I was just thinking we had this thing behind us. I got a call yesterday from school and my son was "out of control". It was all the old things from before. She took him outside and let him walk a little and then after about an hour he was back to his old self. I rushed him in and his strep culture (rapid and culture) were negative. His ASO is up to 500. It was 1750 when we started this nightmare and droppped to 950 with antibiotics. We were under 100 after PEX. He is on azith 250mg qd and what scares me is that he tests negative for strep. My guess is stress caused this. My husband said he saw it coming. The last two weeks he had seen a few issues sporadic issues that made him worry. My other son had H1N1 and pneumonia two weeks ago.

We started him on steroids yesterday and he was still disrutive today but better and not "out of control". Our new immunologist handles the issue quickly which gave me some comfort. I am trying to focus on the positive. We spent 2-3 years not knowing what was wrong with our son and now we do. Also, he does seem to bump his ASO with symptoms which I know it is not the antibody that is doing the damage but at least it is a tangible something the doctors can see. Also, there are treatments that work (they just are incredibly expensive and hard to get!) The immunologist wants us to do IVIG and we are going to work toward trying to get it paid for. Any tips? BCBS picked up the PEX tab but they may say enough is enough.

As I told my husband too, this is our new "normal". It will never be like it was before.

[peglem]

Is there an immune deficiency? That could get it covered. The immunologist probably knows what the insurance requires as far as evidence to get IVIG approved.

So sorry to hear about this new episode...you must feel like somebody just kicked you in the chest!

[mom md]

His Ig G, A, and M were all normal. His IgE was really elevated but that was allergies I think. He has a history of ear infections, allergies, two trips to the ER for breathing treatments with colds(no asthma though) and chicken pox after the vaccine. His diptheria and prevnar did not take but she thinks in order to prove that to the insurance company I will nee to re-vaccinate with pneumovax. No thanks! She thinks he has an immunodeficiency but does not think "immunodeficiency not otherwise specified"will cut it.

Is there an immune deficiency? That could get it covered. The immunologist probably knows what the insurance requires as far as evidence to get IVIG approved.

So sorry to hear about this new episode...you must feel like somebody just kicked you in the chest!

[EAMom]

So...if your son doesn't have strep why would his ASO rise? Just from exposure? There were a few kids in Swedo's study that had to have repeat IVIG/pex due to strep exposure/rising titers (they were on pen prophylaxis). That's nice that he does get an ASO rise, it's something you can track. It's just a puzzle to me why you would get a rise just from exposure...if ASO is an antibody to a toxin produced by strep. Perhaps if he has some colonization. There must be enough toxin from the colonization to get an ASO rise. Hmmm????

 

I wonder if he has contact with a strep carrier in school?

 

If it was just stress....then why the rise in ASO? So, I think there is strep exposure.

 

Just me thinking aloud....

[peglem]

Maybe the strep is somewhere else in the body?

[EAMom]

Maybe the strep is somewhere else in the body?

 

Yes...but he's been on Azith, so I would be suprised that it would suddenly be causing problems, even if there was still a bit of strep hiding out somewhere.

[Suzan]

His Ig G, A, and M were all normal. His IgE was really elevated but that was allergies I think. He has a history of ear infections, allergies, two trips to the ER for breathing treatments with colds(no asthma though) and chicken pox after the vaccine. His diptheria and prevnar did not take but she thinks in order to prove that to the insurance company I will nee to re-vaccinate with pneumovax. No thanks! She thinks he has an immunodeficiency but does not think "immunodeficiency not otherwise specified"will cut it.

 

mom_md, maybe we can see if our immunologist can talk to the other immunologists who have diagnosed CVID based on the s. pneumo titers without vaccinating. If she can give this diagnosis based on this, I think the insurance companies might go for it. It sounds like we are in the same boat as you are. She has backed off on IVIG for us for now based on the same reasoning.

 

I am sorry you guys are having a relapse, I know this is so discouraging and scary.

 

Susan

[mom md]

James Leckman at Yale explained that with these children their immune systems are not right and it can take a simple stress to pull the trigger and make the body make antibodies. That is what is scary. I can protect my child with antibiotics from strep, but how do you control the immune system from pulling the trigger?

[thereishope]

If my son is under stress (or what stress a 6 yr old can have), I may see little PANDAS symptoms surfacing even when he is fully recovered. He wouldn't be "out of control", but I may see him backtrack a little bit. I read that the rising of blood pressure (which happens when under stress) can open up the BBB. So, I would think that would add to why PANADS symptoms return w/ stress?

[kim]

Mommd and anyone with good Drs!

 

I wonder if anyone could get Doc's feedback on this concept. I have felt for a long time that something is affecting the way these sugar chains are assembled in some people with autoimmune problems. If it's genetic response to environmental factors (strep and other ....viral/metals etc)seems this may be one of the best/safest ways available now in some instances for damage control. My biggest concern is regarding long term use, and insulin resistance. From what I've been able to find on it, seems there is some uncertainty about that and i think there is definitely a predisposition here. Also, since there is at least a mild immune suppression (or does it only suppress abnormal t cells?), for people with known immune deficiency this might not be a good option.

 

http://www.medicalnewstoday.com/articles/70952.php

 

In studies on mice, Dr. Michael Demetriou and colleagues with the UC Irvine Center for Immunology found that N-acetylglucosamine (GlcNAc), which is similar but more effective than the widely available glucosamine, inhibited the growth and function of abnormal T-cells that incorrectly direct the immune system to attack specific tissues in the body, such as brain myelin in MS and insulin-producing cells of the pancreas in diabetes. Study results appear on the online version of the Journal of Biological Chemistry.

 

"This finding shows the potential of using a dietary supplement to help treat autoimmune diseases," said Demetriou, an assistant professor of neurology, and microbiology and molecular genetics. "Most importantly, we understand how this sugar-based supplement inhibits the cells that attack the body, making metabolic therapy a rational approach to prevent or treat these debilitating diseases."

 

The UC Irvine study defines how metabolic therapy with the sugar GlcNAc and other related nutrients modifies the growth and autoimmune activitiy of T-cells. Virtually all proteins on the surface of cells, including T-cells, are modified with complex sugars of variable lengths and composition. Recent studies have shown that changes in these sugars are often associated with T-cell hyperactivity and autoimmune disease.

 

http://www.crohns.net/Miva/education/artic...ucosamine.shtml

 

Small study regarding use for crohn's (excerpt)

 

N-acetyl Glucosamine

The protective mucus in the gastrointestinal tract consists of glycoproteins, a protein backbone with carbohydrate side chains. Half of these carbohydrate side chains consist of N-acetyl glucosamine (NAG). Glucosamine synthetase is the rate-limiting enzyme in NAG synthesis. Decreased glucosamine synthetase activity has been noted in biopsy tissue from IBD patients -- both Crohn's Disease and Ulcerative Colitis -- only in inflamed tissue with loss of epithelial cells. In patients with Crohn's Disease, elevated levels of glucosamine synthetase were found in nondiseased tissue, providing a diagnostic tool when involved tissue is not viewable on colonoscopy

[bronxmom2]

Kim, is this supplement something we can just buy in the health food store? Do you know what name it's sold under?

[bronxmom2]

mom md, I am so sorry this is happening!

 

(as you can imagine...)

 

What dose steroids are they giving to try to nip this in the bud?

[sf_mom]

I would definitely follow up PEX with IVIG and double his antibiotics temporarily to see if that helps! My younger twins were sick with fevers, my son complained of a sore throat both rapid/culture were negative but he was having a flair in symptoms. We did not test ASO or Anti-DNAse B because it was too close to his brother/sister's illness to see a rise. BUT we increased his antibiotic and ALL symptoms ceased within 48 hours.

 

Keep us posted.. I'm also going to post Madeleine Cunningham's information regarding RF please read. I'm beginning to think RF, SC and Pandas are all the same thing but PANDAs is just a different phase or migration of disease. I believe the antibiotic daily dose for RF is fairly high for 5 years and is lowered until they are 20 - 25.

 

Your younger son's most recent illness was most likely the contributing factor to the rise..... ASO rise 2 to 3 weeks after exposure and 3 to 9 days prior to child becoming ill.

 

-Wendy

[dcmom]

MomMD- I am so sorry you are going through this. Since we are 1 day post pex, I am devastated by this news. Did you say he was on daily zith? What do you think the cause is? I mean stress would open the bbb- do you think 3 treatments are not enough pex to remove the antibodies (swedo did 5, I think)? or has he been making the auto antibodies? But then why 4 mos of success?

 

Did you talk to Dr L? I was wondering what her thought was? Are you planning to try to get IVIG?

 

My thoughts are with you, and how devastated I am sure you are

 

Eileen

[KeithandElizabeth]

mommd:

 

I am so very sorry. Remember this is a year of healing and there can be bumps in the road. I am in complete agreement with Dr. Leckman about something not being right with the immune system. I mean, why would this happen to these children if their immune systems were functioning at 100%? The good thing about doing the IVIG next is that is addresses the immune system. We had our insurance cover 6 months of IVIG based on the failed S. Pneumonaie titers. I will check into what code was used with the insurance company.

 

Hopefully, the steroid burst should help you all so much!!

 

Elizabeth