Bump in the road...we had a relapse

[thereishope]

In an OCD group someone asked whether pneumonia can cause OCD the way strep can. He said he had pneumonia as a child and his OCD started after that. Anyway, someone responded saying that bacterial pneumonia is caused by strep. Not necessarily the strep that causes strep throat, but still strep. Did your other son have bacterial pneumonia? I know you said he still has a fever. Maybe your PANDAS son be reacting to that?

 

I know someone whose PANDAS child got Flumist. She said one week after she got it, her PANDAS symptoms resurfaced a little. The daughter even asked to see the psychologist. I know FluMist is different than the shot, but still thoight I'd share that.

[Buster]

Hi Kim,

 

What an interesting thought regarding GlcNAc. There's a very recent John Hopkins study by Dias at http://www.jbc.org/content/284/32/21327.abstract where they found direct correlation between GlcNAc and CamKinaseIV activation.

 

While it is dangerous to connect the three dots, it sure seems like the following is a good working hypothesis:

 

1) T-cells are producing monoclonal antibodies with epitype GlcNAc

2) The monoclonal antibodies are bonding with GlcNAc and thereby inactivating the ability of GlcNAc to bond with cAMP

3) The lack of available GlcNAc inhibits the suppression of CaM Kinase activations (II and IV)

 

So perhaps what Kirvan and Cunningham are measuring with elevated Cam Kinase II is that the available GlcNAc is abnormally low in the blood serum.

 

It appears that Kirvan and Cunningham are pursuing the direction that the antibodies bind directly to dopamine receptors, but I think the direction you raise in your post is equally interesting and seems to fit the model (i.e., that there's a decline in available GlcNAc). Hmm....

 

Buster

[mom md]

Yes, they think it was strep pneumonia but only because that is the most common. We have no proof but it responded quickly to Rocephin IV. They really were not around each other much and it is not supposed to be very contagious but then again we clearly do not follow the normal path. The timing makes sense. Interesting though that my PANDAS child never got sick. It is like his immune system works but in a wacked out way.

[ShaesMom]

Interesting though that my PANDAS child never got sick. It is like his immune system works but in a wacked out way.

 

I just wanted to say that my Pandas daughter who also has been dx'd with CVID & severe allergies has an immune system that is totally "wacked". She never responds to an illness in a "normal" fashion. For instance when she has a UTI she never has the typical symptoms--only behavioral changes which are my signal. At the age of three, she had a UTI that lasted for a period of months-turned out she actually had a pseudomonas infection that can only be cleared up with IV abx's. Anyway, during this time frame her behavior was identical to when she had her major Pandas flare last spring. NO burning, no frequent urination or other common UTI symptoms. It appears that her body only knows how to respond one way--with behavioral changes.

 

We also found out recently that she is highly allergic to both dogs & cats--4 on a scale of 1-4. We have had two cats in the house since her birth and just purchased a dog. She has never exhibited any signs of being allergic to either animal. No running nose, itchy eyes, sneezing etc.

 

Sometimes I wonder if our children are really sick and because their bodies don't produce the typical symptoms we just assume they are not actually ill.

[KeithandElizabeth]

Interesting - I never realized until now that my son is the same. He came up with severe allergies on his blood work and his IGG levels were high, but he does not show signs of allergies - no runny nose, etc....

 

Elizabeth

[ShaesMom]

Interesting - I never realized until now that my son is the same. He came up with severe allergies on his blood work and his IGG levels were high, but he does not show signs of allergies - no runny nose, etc....

 

Elizabeth

 

I just wanted to add that we not only found out about the environmental allergies but also an additional 9 food allergies. Four of these are considered severe (3-4 on scale). We have known about her anaphylactic dairy allergy since birth but I would have never guessed that she is MORE allergic to Pork than dairy. We eat pork 4-5 times a week. Same with eggs-she eats them all the time. She doesn't have any skin rashes, eczema, thrush, diaharra, tummy aches or any other common food allergy symptoms .

 

I would think between the grass in our front yard (a 4), the dog & cats, and the foods she would be one of those kids who always has a runny, snotty nose-but she doesn't! Outwardly, she appears healthier than my older son.

[faith]

Shaes mom,

what kind of allergy testing was it?

 

my son also never displayed any common symptoms of allergies. when we did environmental allergy testing thru a DAN doc a few years ago, he did come up only moderate to cat and ragweed I think. sometimes I think that the way my son exhibits symptoms will be thru tics. who knows.

[ShaesMom]

Shaes mom,

what kind of allergy testing was it?

 

my son also never displayed any common symptoms of allergies. when we did environmental allergy testing thru a DAN doc a few years ago, he did come up only moderate to cat and ragweed I think. sometimes I think that the way my son exhibits symptoms will be thru tics. who knows.

 

She had an endoscope & colonoscopy done about 4 weeks ago where they found a significant number of eosinophilic (allergy) cells in her esophagus, tummy & colon. From there she went in for skin & ImmunoCap blood testing. It is important to note that eosinophilic cells are not always from IgE mediated allergies. From my understanding, we were "lucky" to find so many allergies through traditional testing. Most individuals have to go on a very strict elimination diet and reintroduce foods to determine which ones are causing the allergy. She will have to have another endo & colonoscopy in a few months to see if we have actually removed all of the allergens or if some remain that are not IgE mediated.

 

We had the endo & colonoscopy done because GI issues are very common with primary immune deficiencies. She has had chronic constipation for years and has never been on the growth chart. We have made regular visits to the GI doc since the age of 2 but were always told she was just "withholding" and would grow out it. If only we would have known this five years ago.....