If anyone has been to Bostons clinic for Kawasaki or gone to dr burns in California is it worth it my son is 2 years out but we're at a loss he still suffers from joint pain often to the point he has problems walking
If anyone has been to Bostons clinic for Kawasaki or gone to dr burns in...
Dr. Burns is amazing! She saved our son's life 4 years ago. Have you reached out to her?
No but after today I want to im willing to fly out there I'm getting no answers and the oh Kawasaki doesn't cause joint pain
Totally understand your frustration. The only answer we ever got was that he has loose ligaments that cause joints to come displaced. But no advice to fix it.
Jesse MacDonald have u asked about bracing
Dr Burns is the leading expert in the field for KD and known to help parents & kids all over the world. Give her a call/email and she'll respond, usually within a day - you can't go wrong reaching out to her for her expertise
I would definitely call Dr. Burns and discuss your son's case with her to start with. She treated my daughter and is extremely helpful.
you should contact her. She is very candid and will at least give you a plan.
Rachel Winebarger we have and it didn't help
Jesse MacDonald they won't even consider bracing for my son
I'm thinking it may helpn
When my son had KD we saw a rheumatologist specifically for joint pain. He also had a bone scan that showed up the inflammation. Have you been referred to rheumatology?
Absolutely call Burns! Your doctor should already be consulting with her if he's a tough case. She's phenomenal.
Yes but no bone scan just X-rays witch are normal maybe I'll say ortho Suggested it
None of them seem to care much
Where in CA is Dr Burns located
Worth a shot asking for one.
Vitamin D might be low. Son use to complain about his joints. He takes vitamin d 1000mg twice a day along with his other meds.
Then call her yourself.
We see Dr. Jane Newburger at Boston Children's Hospital. She is absolutely amazing, compassionate and helpful. Our daughter was diagnosed at 5 months of age with 3 giant coronary aneurysms, she is now 6 1/2 years old and we still see Dr. Newburger.
I know they have Kawasaki clinic but is that cardio or rumatorid I'm looking for a rumatorid dr who is more skilled then ours here or even an orthopedic
Rheumatoid Arthritis sometimes is a side effect left over after Kawasaki's. My son complained a lot for a few years after diagnosed. Not too much now. I have RA, so his chances are greater.
Maybe have them do the specific blood work to see if he has RA.
Hope you get answers soon. Joint pain sucks and this weather makes it worse. I feel his pain and will pray for some relief for him.
Have they considered a genetic cause for the joint pain such as ehlers danlos? I have a son with both ehlers danlos and KD. Ehlers danlos is a connective tissue disorder, it can effect heart and joints.
Yes his panel came back normal but we were denied wes testing
Hypermobility type of EDS is a clinical diagnosis, Brighton scale. Is he hypermobile?
Not sure no ones ever looked for that I'll look into it I may have missed the signs of it as well since they go off what I tell them since when in a office setting they act different and see them for such a short time
I'm going to try this latter I'm not at home
Did you see how bendy your son is?
Dear Rachel Winebarger. Our son suffered KW 5 Years a go, we live in Germany and we met last Dr. Burns in San Diego.
I can really recommend you to go and visit her with your kid!
no mom's been in town she leaves tomorrow pretty sure his legs can do that I'll update you when I do it sorry