Does your kid have this?

[Guest pandas16]

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Edited December 16, 2011 by pandas16

[emmalily]

I have transient arthritis with this...a couple joints that always have problems and other that flare with exacerbation.

 

I'm only a couple years younger than you from what I can tell and living a pretty normal life with this. Have you thought about contacting Beth Maloney and seeing if you could speak to Sammy? He seems to be doing really well.

[eljomom]

pandas16...have you found many who had a severe case and are NOT living normally? this is what scares me. is it that you can't find ANYONE who was severe and aggressively treated, or just anyone at all.

[emmalily]

I have transient arthritis with this...a couple joints that always have problems and other that flare with exacerbation.

 

I'm only a couple years younger than you from what I can tell and living a pretty normal life with this. Have you thought about contacting Beth Maloney and seeing if you could speak to Sammy? He seems to be doing really well.

 

 

Were you diagnosed by a rheumatologis as well? After getting strep, 6 weeks later my entire hands swelled up like a balloon. The rheumatologist I had said it resembled ankalong spondalitis although it wasn't that. I think Sammy's case was less severe than mine and he's younger but I don't know how to get in contact with him. I would talk to him. Did he have cardiac involvement too? I mean I went overnight normal 9 year old to overnight ready to be institutionalized. There was never " somethings not right" all along developmentally with me. I d just like to meet someone who gets that. Not a mother.

 

No, not by a rheumatologist, just by my regular PANDAS doctor. I recently experienced this with I believe was a sinus infection (not sure what bacteria, never got a strep test, but was definitely throat/nose related) where I suddenly was limping because my previously fine left knee was inflamed. That's gotten infinitely better being back on antibiotics. I too, had nothing wrong developementally and not overnight, but over the course of days, experienced sudden, disabling PANDAS. I understand wanting to speak to someone who understands, as I have never met another person with PANDAS in person. Have you asked the doctors who first treated you in '98 if there are any other patients they treated then who are also looking to speak to fellow patients? Obviously, they can't just give you names because of confidentiality laws, but maybe they would have some information on where to look for other, older patients (maybe there is a support group you've never heard of or another online community?). If you do find anything out about a possible group of older PANDAS patients, could you pass along the information? I would be interested, too.

 

I would think you could ask his mother if he would be willing to talk. She could probably pass on the message and your e-mail to him if he was willing.

[eljomom]

yes, pandas16...though I thought you were looking for adults. I believe most here are moms or dads with kids of varying ages (although a few parents who believe they HAD pandas...)

 

pandas16...have you found many who had a severe case and are NOT living normally? this is what scares me. is it that you can't find ANYONE who was severe and aggressively treated, or just anyone at all.

 

 

Look at everyone on this forum. Not many of the old members seem to have caught it early. I like reading some of the newer members stories though. They are uplifting.

[PowPow]

I know you are not looking for a parent-- but what you asks freaks me out.

My daughter at 10 went from normal to institution ready in one flippin' night.

PEX x 2 with temporary resolving of symptoms, but relapses. She is positive ANA, increased sed rate, arthritis symptoms; it has been 3 years.

I hope you find good answers. If so, let me know. I need some good news.

Never had the d8/17 marker checked. Does anyone check this these days? would it do us any good?

[philamom]

I know you are not looking for a parent-- but what you asks freaks me out.

My daughter at 10 went from normal to institution ready in one flippin' night.

PEX x 2 with temporary resolving of symptoms, but relapses. She is positive ANA, increased sed rate, arthritis symptoms; it has been 3 years.

I hope you find good answers. If so, let me know. I need some good news.

Never had the d8/17 marker checked. Does anyone check this these days? would it do us any good?

PowPow- what are your doctors saying about the +ANA and increased sed rate? My daughter also currently has a positive ANA, increased sed rate, and arthritis symptoms (in her legs).

[dcmom]

Pandas 16-

 

I would suggest that you contact Beth Maloney and Diana Pohlman. They are two pandas parents who are in touch with lots of moms. If anyone would know of some young adults, they would. PM me if you need their contact info.

 

I know this isn't what you are looking for, but I will tell you anyway

 

My older daughter was 8.5 when pandas hit, mildly. Nine months later she had a debilitating onset (constant ocd, agoraphobia- type behavior, refusing to eat, major depression, hiding all day, etc.)

 

Prior to pandas she was a completely "normal" child. In fact (in my eyes) somewhat of a superstar. Socially adept, insightful and outgoing, academically advanced, interested, enthusiastic, fun, etc.

 

Since pandas onset, she is all of the above and more. The more is; wise beyond her years, and compassionate for others. The more is also an autoimmune disorder which flares up occasionally and gives her mainly ocd along with some anxiety, moodiness and panic, that we are learning how to treat aggressively. In between episodes (which may be 2 per year, and last less time as we learn to treat) she is completely normal. During episodes, keeping up with "life" completely is hard, but to all outsiders- she looks and acts completely normal.

 

I do not envision a normal life for her, I envision an exceptional life for her, for that is what mothers envision for their daughters

[PowPow]

philamom,

 

our PANDAS doc was very vague to me. I asked about it on an after-hours phone call & frankly, have not been in off ice since then~ so I do not think it was a priority.

I am thinking of heading back to a rheumatologist we have seen before who is also an integrative medicine doc.

 

I will PM you

[MMWG]

I know you are not looking for a parent-- but what you asks freaks me out.

My daughter at 10 went from normal to institution ready in one flippin' night.

PEX x 2 with temporary resolving of symptoms, but relapses. She is positive ANA, increased sed rate, arthritis symptoms; it has been 3 years.

I hope you find good answers. If so, let me know. I need some good news.

Never had the d8/17 marker checked. Does anyone check this these days? would it do us any good?

PowPow- what are your doctors saying about the +ANA and increased sed rate? My daughter also currently has a positive ANA, increased sed rate, and arthritis symptoms (in her legs).

 

 

My son complains of leg pain very often. It was one of the first and only signs of the strep that we detected just prior to his diagnosis. He often says his legs hurt so bad, and asks us to make them better. I guess I just assumed it was due to the autoimmune nature of PANDAS...I wonder how common this is.

[kim]

This is some really old reseach on Rheumatic fever Vit C and Vit P. (1945)

Seems they talk a lot about sed rate in this paper and thought someone might be interested in reading

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1011572/?page=1