knee pain

[chap]

hiya

 

I am still trying to piece things together in regards to my daughter, and still unsure as to whether she fits into the category of pandas or tourettes.

At the advice of forum members Ive taken a look at the PANDAs Network webpage and was suprised to see under the Family History table (of case studies) that many of PANDAs children have a history of leg pain. Can anyone shed some light on this for me?

My little girl has had leg pain at night for as long as I can remember, often waking at night between 3 -4 times per week in horrendous pain with it. We have never connected it with the tics, but have had other tests (xrays,GP & paed appointments) to try and resolve it (we've always just been told that its probably 'growing pains')

 

thanks

[Char]

chap,

Hi, you have got me thinking. My son too has tics and has had bad leg pains for along time. His leg pains wake him up in the middle of the night too. So I am wondering too if, it is common for children with Pandas to have leg pains often?? Char...

[Suzan]

My daughter has leg pain and joint pain. She's had horrible pain at night especially and has had episodes where she is unable to walk. The doc's could never figure out what was going on. She'd wear a boot for a week and then it would be mysteriously better. She will complain of pain in her fingers, feet, knees, etc. It gets worse during an episode and has gotten much better after being on antibiotics.

 

I have recently gone to get some immune testing done and he is testing for rheumatic stuff. I'll post the results if there is anything interesting next week.

 

Susan

[ShaesMom]

My dd also has had severe leg & knee pain. She had a viral infection about a month ago and was unable to walk for about six days due to the severe pain-we couldn't even touch her legs.

 

If you haven't seen a Ped Rheumy it would be a good idea to see one and rule out Rheumatic Fever & Rheumatoid Arthritis which of course are also caused by strep. One on the main symptoms of RF is the inability to walk due to severe pain the legs.

 

I've also recently learned that joint pain is a common symptom amoung individuals with Primary Immune Deficiencies--which we now know is a disease that our dd has in addition to the Pandas.

 

Susan-Are you having the blood work done for the Pneumococcal titers test??

[peglem]

Way back when my daughter was 4 and 5 years old, she had episodes of limping and once a couple of days where she couldn't walk. The doctors found nothing that could cause it, no bruising, no swelling and nothing on xrays. It always resolved in a couple of days. Its one of the things that in hindsight, leads me to believe that PANDAS started years before we found out what it was.

[Suzan]

Susan-Are you having the blood work done for the Pneumococcal titers test??

 

Yes, we should have the results back on our next appt which is on Wednesday I think. I will try to get copies of the results so I can post them if I have questions about it.

 

Susan

[pixiesmommy]

My daughter also has tics (and lots of other symptoms of PANDAS) and leg pain. Hers is not as severe, but she does complain of stiff achey knees, particularly behind her knees. She started complaining of back pain and leg pain when she was 3, and we have had lots of bloodwork but no resolution. We see Dr K on the 12th and Dr Cunningham emailed me this morning to accept Pixie into her PANDAS study as well. I'm hopeful that we get some answers. Sounds like so many of our kids have unexplained similar issues.

 

Hugs,

Manda

[Worried_Dad]

Way back when my daughter was 4 and 5 years old, she had episodes of limping and once a couple of days where she couldn't walk. The doctors found nothing that could cause it, no bruising, no swelling and nothing on xrays. It always resolved in a couple of days. Its one of the things that in hindsight, leads me to believe that PANDAS started years before we found out what it was.

 

Wow - eerie! Our son's illness actually started with joint pain that moved from joint to joint (polyarthritis), muscle weakness (especially in the legs), sporadic difficulty walking. He would sometimes suddenly collapse like a rag doll, unable to hold himself up. This led to his original diagnosis (in Summer 2007) of acute rheumatic fever with Sydenham's chorea, later changed to PANDAS.

 

Dr. K had mentioned to us that he believed the kids that develop PANDAS after age 10 (like our son) actually had mild occurrences earlier in life that weren't diagnosed. That made my wife and I think hard. When our son was 6, he developed a "mystery illness" where his white cell count plummeted and his legs became so weak that he literally could not walk for several days; we had to carry him around. Did not have any classic PANDAS symptoms at that time: no OCD or tics, no emotional lability. Because of the plummeting white cell count, our family doc at the time feared something like leukemia, and we were terrified. Then his white cell count began to rise again, and his leg weakness disappeared. They never figured out what it was, just called it an "unknown viral or bacterial infection." Now wondering if this was the start of our son's PANDAS journey....

 

Guess we'll never know for sure. But it seems pretty coincidental, eh?

[chap]

If you haven't seen a Ped Rheumy it would be a good idea to see one and rule out Rheumatic Fever & Rheumatoid Arthritis which of course are also caused by strep. One on the main symptoms of RF is the inability to walk due to severe pain the legs.

 

I've also recently learned that joint pain is a common symptom amoung individuals with Primary Immune Deficiencies--which we now know is a disease that our dd has in addition to the Pandas.

 

 

 

 

thanks Shaes mom,

But if she had Rheumatic Fever wouldnt we know about it? Is that not quite a full on illness? Or not?

what led you to the diagnosis of PID?

 

Susan Ill be very interested in your results....

 

And char, so Im not the only one up in the middle of the night administering heat bags and paracetmol!!!!

 

thanks so much everyone for your imput.

chap

[ShaesMom]

 

 

thanks Shaes mom,

But if she had Rheumatic Fever wouldnt we know about it? Is that not quite a full on illness? Or not?

what led you to the diagnosis of PID?

 

 

When our MD saw the elevated ASO titers she immediately thought RF or RA and sent us to the Ped Rheumy. I honestly do not know a lot about RF but I do think the severity of RA varies greatly. The Rheumy ruled out both, checked for heart disease caused by the strep and also checked for glomerulonephritis. We also see an Immunologist who immediately asked if we had been to see a Rheum. when we mentioned the leg/knee pain.

 

We came upon the PID dx simpley by chance. The short version is....My dd has a severe food allergy that we retest every other year. this just happened to be the year for us to see her allergy doc at the Allergy/Immunology office. Before our visit, I sent him some info on Pandas, some recent blood results and my concerns that we were missing something (she has a long history of UTI's & contstipation in addition to strep). He told us that just because her Ig levels for normal it didn't mean that her body actually knew how to use the antibodies and we could run some more tests. The additional tests came back and showed that her immune system did not fight certain types of infection despite the fact that the antibodies were there so she was dx with the PID and will have IVIG monthly.

[swim]

Our son is 10 now, but had leg pain every night when he was 4 and 5 years old. Looking back on things, this was about when I would estimate he had his first PANDAS episode. We didn't know about PANDAS back then and were treating him for systemic candida. His leg pain eventually went away - not sure if it was because the PANDAS episode was running its course. At the same time, he had restless sleep and would wake up every night to use the bathroom.

[NancyD]

I first saw this post last month and thought nothing of it since I did not recall my daughter ever complaining about knee pain. And then yesrterday, while we were at the pediatrician's for her well visit she told her doctor that her knee had been bothering her on and off for months. And she never told me (well actually, now that I think of it, she might have mentioned it once but I never connected it to any of her medical problems). I will mention this to her rheumatologist and DAN doctor.

 

Nancy

 

hiya

 

I am still trying to piece things together in regards to my daughter, and still unsure as to whether she fits into the category of pandas or tourettes.

At the advice of forum members Ive taken a look at the PANDAs Network webpage and was suprised to see under the Family History table (of case studies) that many of PANDAs children have a history of leg pain. Can anyone shed some light on this for me?

My little girl has had leg pain at night for as long as I can remember, often waking at night between 3 -4 times per week in horrendous pain with it. We have never connected it with the tics, but have had other tests (xrays,GP & paed appointments) to try and resolve it (we've always just been told that its probably 'growing pains')

 

thanks

[chap]

hi

thanks for all your replies everyone.

Nancy and Chemar, was wondering if you could help on another matter...

Im quite keen to try a treatment schedule similar to the one you used Chemar. Ive just purchased a supplement online- I wanted to increase dd's magnesium intake to see if that would help with the leg pain and the tics. But the product Ive bought has got something call ketogluterate in it. Ive tried investigating what this is, but to be honest Im no scientist and Im a bit confused by some of the stuff Ive come across. the only thing I know about glutemate is to avoid MSG!

Also Ive found it really hard to get a taurine supplement (Im in NZ). There is some taurine in this supplement Ive just purchased but Im not sure if its enough for her as its only 'bound' to the magnesium.

thanks