Leg pain

[Rowens1214]

I have been reading another thread about leg pain/limping. just curious about something. I had tons of strep until age 17/18. As long as i can remember i have had terrible leg cramps/pain at night. I remember when I was little waking up with this horrible pain. my 7 years old who is just starting to show signs of tics has leg pains at night just like i do. My 15 year old who does have PANDAS has never had leg pain. just curious what others on this forum have going on with this.

[kmom]

Before the PANDAS mystery unfolded for my son, I had him at the pediatrician for joint pain throughout body but mostly in his legs. I was told it was probably growing pains. I do have a cousin with juvenile arthritis but dr. told me many times fevers go along with JA so just don't make a big deal and tell him he's growing. After PANDAS Dx and abx and ibuprofen...no more leg pain

[parents4eyes]

x

Edited September 9, 2010 by parents4eyes

[Worried_Dad]

This is how our son's illness started, a few weeks after a very high fever: migratory joint pain, muscle weakness, difficulty walking. Six weeks later, the seizure-like chorea episodes began. These are classic symptoms of acute rheumatic fever / Sydenham's chorea, which was our son's original diagnosis. Reactive arthritis is another in this spectrum of post-strep autoimmune disorders. So it's not at all surprising that PANDAS kids might experience joint or leg pains. (For our son, the legs were the most painful.)

[sptcmom]

This is how our son's illness started, a few weeks after a very high fever: migratory joint pain, muscle weakness, difficulty walking. Six weeks later, the seizure-like chorea episodes began. These are classic symptoms of acute rheumatic fever / Sydenham's chorea, which was our son's original diagnosis. Reactive arthritis is another in this spectrum of post-strep autoimmune disorders. So it's not at all surprising that PANDAS kids might experience joint or leg pains. (For our son, the legs were the most painful.)

Hi thats my thread and my DS you're ref to I think. Yes, actually had a very sudden onset (overnight) of left leg limping real bad like after a stroke- trendelenberg/antalgic gait. Happened day after soccer 1-1 coaching 1hr pretty intense. We thought it was post traumatic spots injury but there was no pain. The muscles in his left leg slowly atrophied and so on- you probably read my other thread. The pain came in the 3rd or 4th episode,went to both legs. So far no joint pains, all muscular, spasms, charley horse and just so sad.

DS also has a friend who gets strep 3-4 times a year along with leg aches and pains which go away after abx. Mom is satisfied with that solution and doesn't want to consider alternative viewpoints at present. Oh well.

We're investigating Lyme too.

Jodie

Edited August 23, 2010 by sptcmom

[Phasmid]

My son had leg pain as well as arm pain that would come and go. Now I have no doubt that it was part of the PANDAS.

[momcap]

We suspect PANDAS for our ds (6). He has had severe leg pains over the last 3 years along with OCD and behaviour symptoms. Sometimes the pain is in his knee, sometimes his ankle, sometimes muscular. It mostly happens at night and is so severe he wakes up screaming and continues to scream for hours no matter what we do (hot bath, heat pad, massage, ibuprofen). Occassionally it happens during the day and he refuses to walk. On rare occassions it is his arms, or "hurts everywhere", but mostly one leg (not always the same one) and mostly at night. These "pain attacks" happen just before or during mood/OCD episodes. We just learned of PANDAS and got back a high ASO titer. Not sure what all of this means yet.

[PhillyPA]

When my first son was three, after he got a viral infection (which was probably strep, he never has tested positive) he started to limp for about 6 weeks. The same thing happened to my second son, also when he was three, after a strep infection. We took him to an orthopedic surgeon. He said that after a viral infection or strep infection in some kids the infection/virus lingers in the hip joints. He said it would go away in time and it did. He said it was nothing to worry about. Both of my boys ended up getting PANDAS. I think that that limp is a big red flag of auto-immune issues.

[lyme_mom]

I probably sound like a broken record but I think you should know that the description of the pains described in this thread could just as easily be found on a Lyme blog. The danger in assuming that migratory joint pain and muscle pain is caused by an auto-immunity issue related to PANDAS is that you could miss an active lyme disease infection that is treatable with the right combination and dose of antibiotics. I urge anyone whose child has these symptoms to keep looking for other explanations for the symptoms such as Lyme Disease, Bartonella or Babesia. In fact, any patient with migratory joint or muscle pain should consider a trial treatment by a tick-borne disease specialist to see if it helps regardless of what Lyme/coinfection blood tests say (because they are so unreliable). A trial treatment through a lyme-literate doctor (ilads.org) is not very risky (as long as probiotics are used) and is the best way to know if these symptoms can be eliminated.

[AmySLP]

Early on prior to or just about the time of Dx of PANDAS my daughter (then 4) c/o leg pains. SHe could never specifically say or point to where. At that time she was in the midst of 7 months of recurrent strep. She has not c/o leg pains since that time.

 

Interestingly enough, my sister at about the age of 7-8 or so had mysterious leg pains, so much that she often had to be carried. She saw all sorts of specialists, they ruled out rheumatic or Juvenile arthritis. She was a sick kid with lots of sore throats as a kid. Now at the age of 26, she has some mile vocal tics & a bit of OCD. Dr. B thinks there is some correlation. Now she was recommended to have testing for RA (rheumatoid Arthritis) due to something her optometrist noticed at her last visit.

[lyme_mom]

Early on prior to or just about the time of Dx of PANDAS my daughter (then 4) c/o leg pains. SHe could never specifically say or point to where. At that time she was in the midst of 7 months of recurrent strep. She has not c/o leg pains since that time.

 

Interestingly enough, my sister at about the age of 7-8 or so had mysterious leg pains, so much that she often had to be carried. She saw all sorts of specialists, they ruled out rheumatic or Juvenile arthritis. She was a sick kid with lots of sore throats as a kid. Now at the age of 26, she has some mile vocal tics & a bit of OCD. Dr. B thinks there is some correlation. Now she was recommended to have testing for RA (rheumatoid Arthritis) due to something her optometrist noticed at her last visit.

 

If she hasn't had the cd57 test by Labcorp she should get it. A low score is an indication of an active lyme infection. It doesn't show whether a coinfection like bartonella is involved though.

[Vinny123]

Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

 

1. ADHD symptoms (hyperactivity, inattention, fidgety)

2. Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.)

3. Mood changes (irritability, sadness, emotional lability)

4. Sleep disturbance

5. Night- time bed wetting and/or day- time urinary frequency

6. Fine/gross motor changes (e.g. changes in handwriting)

7. Joint pains