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Appointment with rheumatologist


Debbie1
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I took my non-PANDAS son to a rheumatologist this morning because he has had ongoing stomach aches since a strep infection in the fall of 2008 and started complaining of joint pain over one month ago (he also has high strep titers).

 

I called the office in advance to find out whether they are familiar with PANDAS, since it is a big part of our family history and I need someone who can understand the big picture. The nurse assured me that they have PANDAS patients.

 

Well once we were there, the doctor told me she only had two PANDAS patients ever and that once they got rid of the strep and put them on Zoloft, the kids got better and it was not a chronic problem (side note - one of my PANDAS kids was on Zoloft and it was a disaster like so many others here). She told me she believes in PANDAS but she believes it is very rare and is terribly over diagnosed (I don't think anyone here has had an easy time getting diagnosed!) She also told me it is so rare that there is no way we could have two children in the family with it. I would have said thank you and walked out at this point if not for the fact that I needed to get to the bottom of the stomach aches and joint pain.

 

She examined him and found no evidence of any rheumatalogical disease. That was a relief, but then she told me that she has no idea why my son is having joint pain and cannot help us. Not - let's look into this further to find out why your son is having joint pain for several minutes at a time, up to twice a day. She said she has no idea and is sending us back to the GI because of the stomach pain. Seriously...I could call myself a doctor if all it took was "I have no idea why you are having pain"...

 

very frustrating!!!!

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I took my non-PANDAS son to a rheumatologist this morning because he has had ongoing stomach aches since a strep infection in the fall of 2008 and started complaining of joint pain over one month ago (he also has high strep titers).

 

I called the office in advance to find out whether they are familiar with PANDAS, since it is a big part of our family history and I need someone who can understand the big picture. The nurse assured me that they have PANDAS patients.

 

Well once we were there, the doctor told me she only had two PANDAS patients ever and that once they got rid of the strep and put them on Zoloft, the kids got better and it was not a chronic problem (side note - one of my PANDAS kids was on Zoloft and it was a disaster like so many others here). She told me she believes in PANDAS but she believes it is very rare and is terribly over diagnosed (I don't think anyone here has had an easy time getting diagnosed!) She also told me it is so rare that there is no way we could have two children in the family with it. I would have said thank you and walked out at this point if not for the fact that I needed to get to the bottom of the stomach aches and joint pain.

 

She examined him and found no evidence of any rheumatalogical disease. That was a relief, but then she told me that she has no idea why my son is having joint pain and cannot help us. Not - let's look into this further to find out why your son is having joint pain for several minutes at a time, up to twice a day. She said she has no idea and is sending us back to the GI because of the stomach pain. Seriously...I could call myself a doctor if all it took was "I have no idea why you are having pain"...

 

very frustrating!!!!

I'm so sorry you had a (brain) dead end here- but had to laugh at your reaction!

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Debbie: Have you had your non-pandas child CaM Kinase tested. I would just to be on the safe side..... this is not the first time I've heard this particular dynamic in a family. Stomach pain, joint pain sounds like strep to me.

 

-Wendy

 

Wendy,

 

Thanks for the suggestion. We have not yet had his Cam Kinase tested. I will contact the lab and ask them about it. I am just not sure I understand - if he has no tics or OCD, why would his Cam Kinase be elevated?

 

Thanks,

Debbie

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Perhaps the BBB is closed and you are not seeing the emotional symptoms and perhaps just the physical response to strep. I am very fearful that the ASO and Anti-DNAse-B are not appropriate measures to all strep bacteria given our experience with Kawasaki's. Joint pain is a symptom of PANDAs as you know but also a symptom of RF, Kawasaki's, RA, Fibromyalgia, etc. Stomach pain is also an indication of strep.

 

Hence, checking CaM Kinase.

 

-Wendy

 

Debbie: Have you had your non-pandas child CaM Kinase tested. I would just to be on the safe side..... this is not the first time I've heard this particular dynamic in a family. Stomach pain, joint pain sounds like strep to me.

 

-Wendy

 

Wendy,

 

Thanks for the suggestion. We have not yet had his Cam Kinase tested. I will contact the lab and ask them about it. I am just not sure I understand - if he has no tics or OCD, why would his Cam Kinase be elevated?

 

Thanks,

Debbie

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I know it's frustrating, but, you have to appreciate the honesty, she was absolutely right with at least one thing, she can't help you, and the best thing she could do for you was tell you that.

 

Thanks for the positive spin! It really was not a complete waste of time because she did rule out any serious rheumatological diseases.

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I am battling tummy aches with my non pandas dd but I am seeing emotional symptoms now... not tics.. no obvious ocd but maybe that is the root of some of the behaviorial/emotional stuff right now.... and starting to question the non pandas part for her. She does sporadically complain of leg pain. I am currently waiting on bloodwork to rule out lyme.. My dr's only suggestion on the tummy stuff was to start an elimination diet of wheat or dairy to see if it was that.. I am doubtful that it is that. She gets strep frequently with the sore throat and tummy ache.. in fact the first time she had strep I took her because she kept complaining her tummy hurt. Then mentioned her throat hurt after.

 

This is so not rare and I am afraid that I am about to find out it's not so rare to have more than one child in the same family.

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My "non-PANDAS" child is my most emotional, anxious and intense of all of my children. We have wondered with neurologists whether he has a very mild form of PANDAS and because the others are more severe, he has gone under the radar. He is on antibiotics and is getting tonsils out with the others due to high titers, stomach aches and family history. We recently took him for a nerological consult just to make sure there were no signs that we were missing. The neuro said he looks good. We will continue to have him followed by the neuro and he will be seeing an immunologist along with our other children.

 

We have eliminated dairy several times, several weeks at a time with no change in symptoms. We have not yet eliminated wheat with him, but did for a few months with my other son. It is hard at the beginning, but does get easier with time if you decide to do it. Many people on the tics/tourettes side of the board are GF/CF so if you decide to go forward with eliminating, they are a great source of information. I just have a strong feeling in our case that it is all strep related. I just have to find a doctor who can figure out how to help him feel better.

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Debbie- Ditto with my non pandas dd. She is more emotional, anxious and has daily stomach aches. This is all since strep, before that she was a self confident happy kid :( She has been on daily zithromax for a month, and has just started a steroid burst. I will keep you posted. PLEASE let me know if you figure anything out. (We also did the GI route, and eliminated dairy for a month- no help AT ALL)....

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Debbie- Ditto with my non pandas dd. She is more emotional, anxious and has daily stomach aches. This is all since strep, before that she was a self confident happy kid :( She has been on daily zithromax for a month, and has just started a steroid burst. I will keep you posted. PLEASE let me know if you figure anything out. (We also did the GI route, and eliminated dairy for a month- no help AT ALL)....

 

Have you seen any improvement on the Zithromax?

 

My non-PANDAS son has been on full strength augmentin for 9 weeks with no change in stomach aches and the addition of joint pain. We are considering switching to Zithromax and have an appointment tomorrow when we will discuss. My PANDAS daughter has been doing much better since we switched to Zithromax.

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Debbie,

I would definitely get that child checked out! That is exactly how my son started... stomach aches here and there, joint swelling and pain off and on, feeling tired all the time. Then we started noticing difficulty concentrating, emotional instability, compulsive hand-washing, anxiety/OCD, asking reasurance questions over and over. It's hard to know exactly because we did not notice all this things at once, but these are signs to look for. Maybe you can start keeping a journal.

If you do go to the GI, insist that they do a stool sample and check for strep in the stool.

It's so frustrating! My son had a wrist that would just swell up noticeably and then go down, off and on... One ped sent us for an x-ray, no explanation. Another said, "Oh, kids just get that" Uh? How lame is that?!

Anyway, hope you find help soon, and I don't know if you already have, but do test everyone in the household for strep, especially if you see behaviors escalating.

 

Isabel

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I took my non-PANDAS son to a rheumatologist this morning because he has had ongoing stomach aches since a strep infection in the fall of 2008 and started complaining of joint pain over one month ago (he also has high strep titers).

 

I called the office in advance to find out whether they are familiar with PANDAS, since it is a big part of our family history and I need someone who can understand the big picture. The nurse assured me that they have PANDAS patients.

 

Well once we were there, the doctor told me she only had two PANDAS patients ever and that once they got rid of the strep and put them on Zoloft, the kids got better and it was not a chronic problem (side note - one of my PANDAS kids was on Zoloft and it was a disaster like so many others here). She told me she believes in PANDAS but she believes it is very rare and is terribly over diagnosed (I don't think anyone here has had an easy time getting diagnosed!) She also told me it is so rare that there is no way we could have two children in the family with it. I would have said thank you and walked out at this point if not for the fact that I needed to get to the bottom of the stomach aches and joint pain.

 

She examined him and found no evidence of any rheumatalogical disease. That was a relief, but then she told me that she has no idea why my son is having joint pain and cannot help us. Not - let's look into this further to find out why your son is having joint pain for several minutes at a time, up to twice a day. She said she has no idea and is sending us back to the GI because of the stomach pain. Seriously...I could call myself a doctor if all it took was "I have no idea why you are having pain"...

 

very frustrating!!!!

I am sooo sorry abot your frustration, and COMPLETELY understand how you feel vis a vis Drs who just do not know about this. SSRI trials for these kids is almost diagnostic. While people with bipolar disorder can also be activated on SSRIs, there seems to be a difference. OUr kids can take almost no medications.

Thoughts are with you!

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