Do I Have PANDAS on the brain or is it possible... my other son might

[EAMom]

Okay....I have to admit we Cunninghamed our younger (supposedly non-pandas) dd. She has had phases where there has been behavior that could be considered OCDish and perhaps more anxiety than normal. For example, there have been periods of sensory defensiveness (clothes not feeling right), phases where she's insisted I go around making all the doors are locked at night, some emotional stuff (which could have been written off to being tired or hungry)...but nothing obviously full-blown.

 

So, we sent in a sample (the same time we checked our pandas dd last)...and our "non-pandas" dd was 125 (vs. PANDAS dd who was 119 post IVIG).

sigh....so that doesn't exactly tell us all that much, except we will be watching her like a hawk. Which really isn't any different than what we would have done before...

[sf_mom]

Thanks EAMom for posting those results.

 

Frankly, I'm exhausted from all this and was willing to put PANDAs on the back burner now that our son is doing better. BUT, the last couple of days... its been this nagging feeling that our other son is exhibiting OCD behavior at 2 1/2 years of age and since he was exposed to the same bug I'm worried. In the last two weeks he has spiked a fever twice. We are two days into approximately 102 fever and he is very clingy with both my husband and I. Could be normal BUT... I just don't know. Is your other daughter on antibiotics, too?

 

Its always been my perspective to hit this 'BUG' so hard that there is no trace of it in their system. Even with Kawasaki's sometimes one treatment of IVIG is not enough and many times two or three treatments are required for response. I'm not fully convinced that there is a genetic disposition but more of a 'BUG' that is so stealth it just wipes out their immune system and the child was just at the wrong place, wrong time. That is what I was told by a Dr. to me about Kawasaki's 'child was at the wrong place, wrong time'. My older son was never sick prior to the exposure to Scarlet Fever and never on antibiotics until 6 months after exposure when we noticed the first TIC.

[KeithandElizabeth]

EAmom:

 

How was your non-PANDAS daughter's other Cunningham blood levels? I did some research and other things, even a recent strep exposure could have contributed to the slightly elevated CAMKinaseII. Our doctor thought even our daughter's GI issues could have contributed to the elevated CAM Kinase. He said "the gut and the brain communicate." Thyroid issues can contribute as well.

 

Elizabeth

[EAMom]

EAmom:

 

How was your non-PANDAS daughter's other Cunningham blood levels? I did some research and other things, even a recent strep exposure could have contributed to the slightly elevated CAMKinaseII. Our doctor thought even our daughter's GI issues could have contributed to the elevated CAM Kinase. He said "the gut and the brain communicate." Thyroid issues can contribute as well.

 

Elizabeth

 

We don't have the rest back yet.

 

She hasn't had any recent strep exposure that I know of (blood was drawn close to beginning of the school year, b-4 seasonal strep exposure)...plus we're pretty vigalant about having her tested periodically b/c of our pandas dd.

 

If you look at Cunningham's JNI paper (fit. 3b) 125 is above all the NHS samples....but I agree, her results are equivocal.

[EAMom]

Is your other daughter on antibiotics, too?

 

No, we asked our ped and she was really against it. We didn't push harder...after a point you just get kind of tired of pushing all the time, do you know what I mean? (But, I can tell you, she will know loud and clear if our PANDAS dd needs another IVIG b/c her sister brings home strep!) Hopefully this will be the year of H1N1 (which we already got out of the way) and not strep in our school.

[Kayanne]

Hey Kayanne...

in the future you can run 2 kids with 1 kit (just have Kathy fax a copy of the appropriate forms). Usually they put in 2 tubes of each kind (2 glass red top, and 2 plastic to put the serum in after its spun down), but you only really need 1 of each kind...so you can actually run 2 kids with 1 kit. Also, a big cost is the shipping (overnight)....so if you know in the future you might want to Cunningham extra kids, maybe you can ask Kathy to put a few extra tubes in so you can draw and mail them all at once in one box.

 

Thanks...that's good to know. This morning they filled both tubes of blood. I know they didn't need to, but she was being such a trooper so I figured it was better to have more blood than less.

 

I am beyond curious to see where she falls because essentially she is not in an episode, but I expect the numbers to still be in the PANDAS range based on the email that Diana sent out. If she has no other episodes within the year, I will do the test again. If she does flare up, then I will have the kit so I can do the draw prior to starting prednisone...maybe then I will add in my son's.

[EAMom]

Yes...let us know what her results are! Do you have a level from earlier (pre-steroids)? It'd be good to know how far things could drop with steroids. We had a big drop from 6 days of steroids (in an exacerbation 253....down to 170 1 mo. later). I think the steroids "nipped" the exacerbation in the bud, basicially getting us back to our "normal" high pandas range. I wouldn't be surprised if your dd's levels are much lower given how well she is doing at home.

[Kayanne]

Thanks EAMom for posting those results.

 

Frankly, I'm exhausted from all this and was willing to put PANDAs on the back burner now that our son is doing better. BUT, the last couple of days... its been this nagging feeling that our other son is exhibiting OCD behavior at 2 1/2 years of age and since he was exposed to the same bug I'm worried. In the last two weeks he has spiked a fever twice. We are two days into approximately 102 fever and he is very clingy with both my husband and I. Could be normal BUT... I just don't know. Is your other daughter on antibiotics, too?

 

Its always been my perspective to hit this 'BUG' so hard that there is no trace of it in their system. Even with Kawasaki's sometimes one treatment of IVIG is not enough and many times two or three treatments are required for response. I'm not fully convinced that there is a genetic disposition but more of a 'BUG' that is so stealth it just wipes out their immune system and the child was just at the wrong place, wrong time. That is what I was told by a Dr. to me about Kawasaki's 'child was at the wrong place, wrong time'. My older son was never sick prior to the exposure to Scarlet Fever and never on antibiotics until 6 months after exposure when we noticed the first TIC.

 

My PANDAS daughter also has a healthy history...this spring was only the second time she had to take antibiotics--the first time she was a newborn in the NICU while they cultured the fluid from her lungs...negative so they stopped the antibiotic. She was a full-term baby...she just had rapid breathing that was from an air pocket in her lungs...which resolved itself and didn't need to be aspirated.

 

I do think this has a genetic component because my uncle and grandmother on my mother's side, both had RF. But I also think you need the correct strep strain...they believe that is the case for RF too. My husband and many members of his family have anxiety, panic, and OCD tendendancies too. I just think if you combine all of that....and of course it is going to be somewhat of a case of wrong place at the wrong time because of the strep strain.

 

Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

[Kayanne]

Yes...let us know what her results are! Do you have a level from earlier (pre-steroids)? It'd be good to know how far things could drop with steroids. We had a big drop from 6 days of steroids (in an exacerbation 253....down to 170 1 mo. later). I think the steroids "nipped" the exacerbation in the bud, basicially getting us back to our "normal" high pandas range. I wouldn't be surprised if your dd's levels are much lower given how well she is doing at home.

 

I had only just found this forum, and within two weeks, we saw Dr. Latimer. My husband and I were anxious to start treatment, and Dr. Latimer told us that we should postpone the prednisone if we wanted to do the test...we chose not to do it at the time.

 

We are doing it now because on Sept. 9, during our phone consult Dr. Latimer still felt that the numbers now would be helpful...but she said, "wait one more month". I was suprised, and I asked her if the prednisone was still having an effect (her last dose was July 18th) and she said it could be...that was a WOW moment...ya know prednisone is not a drug to be taken lightly...but I would still try it again.

[thereishope]

It seems like in our area, each year kids are getting hit hard with one thing. Two years ago, a lot of kids got chicken pox. Lat year, there was a lot of strep.This year it was be H1N1. Also, many parents are taking their kids to the dr as soon as they get a fever. Many docs will rule out strep while they are there. Therefore, many cases of strep will be caught rather early on and hopefully won't spread like wild fire.

 

So, let's hope it is the year of H1N1 and not strep.I feel bad saying that, but strep is mroe devastating for us.

 

Hopefully this will be the year of H1N1 (which we already got out of the way) and not strep in our school.

[Stephanie2]

Kayenne,

 

My thoughts on antibiotics: the more they are prescribed, the more yeast and clostridia develop in the gut so the child ends up with chronic diarrhea and/or constipation and all of this can lead to "leaky gut" which leads to multiple food intolerances which leads to developmental disorders (autism, adhd, etc.).

 

With that said, when antibiotics are not prescribed, yes we have the issue of ongoing strep, lyme and a bunch of other things that can also lead to developmental disorders.

 

That's why I like working with the DAN doctors b/c they are really educated about all of this and they weigh risks vs. benefits with antibiotics and if they need to prescribe one, they attack yeast/clostridia hard with antifungals and high-dose probiotics. They also do their best to boost the immune system so that the child can fight off the strep while on antibiotics.

 

I happen to have streppy guy who gets a lot of side-effects from antibiotics (meaning, he ends up with yeast/diarrhea/constipation) so we will always use a DAN doctor even while consulting with Latimer.

 

Stephanie

 

 

 

Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

[faith]

Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

[/

 

you know, you may have something there, Kayanne, because I remember when I was a kid, we used to get Erithromycin all the time whenever we had sore throats, and I recall our pharmacist used to give my dad refills all the time even without a script, so I know we took alot of abx. Also, I know that I was on antibiotics for years on and off for acne as a teen ager, that was the big thing then, I forget the name, oh yea, Tetracycline. I wonder if that screwed up my own immunity and passed in on to my child? ... maybe now I am overthinking, .

[Kayanne]

Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

[/

 

you know, you may have something there, Kayanne, because I remember when I was a kid, we used to get Erithromycin all the time whenever we had sore throats, and I recall our pharmacist used to give my dad refills all the time even without a script, so I know we took alot of abx. Also, I know that I was on antibiotics for years on and off for acne as a teen ager, that was the big thing then, I forget the name, oh yea, Tetracycline. I wonder if that screwed up my own immunity and passed in on to my child? ... maybe now I am overthinking, .

 

I'm not thinking it screwed up your immunity...I'm thinking if you had a genetic predisposition to strep-related illnesses such as RF or PANDAS, taking antibiotics protected you. RF is thought to be a result of 3 things: 1--untreated/not properly treated strep, 2--genetic predisposition, 3--the correct strain of strep.

[EAMom]

My thoughts on antibiotics: the more they are prescribed, the more yeast and clostridia develop in the gut so the child ends up with chronic diarrhea and/or constipation and all of this can lead to "leaky gut" which leads to multiple food intolerances which leads to developmental disorders (autism, adhd, etc.).

 

But ironically, there were a lot more abs rx'd a 1-2 generations ago and autism rates were also lower. So...it appears (not that this necessarily proves causality) that higher antibiotic use is associated with less autism (not more), despite the possible problems of "leaky gut" etc.

[EAMom]

I'm not thinking it screwed up your immunity...I'm thinking if you had a genetic predisposition to strep-related illnesses such as RF or PANDAS, taking antibiotics protected you. RF is thought to be a result of 3 things: 1--untreated/not properly treated strep, 2--genetic predisposition, 3--the correct strain of strep.

 

Yup....I agree.

 

I also wonder if 1-2 generations ago doctors were better about testing for strep as well? I just think it's ridiculous that neither of my kids were EVER tested for strep until March 08 (a 7.5 year old and a 5 year old) when we insisted (b/c we had just learned about PANDAS)...and both were postive! Every fever they ever had was always presumed viral. Ughh.