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My 5 yr old ...possibly RA?

Posted , 5 users are following.

Decmama
Decmama

Hi! My 5 year old is having another hard week.This is the third year we have had this now. We took him to the Dr. Last year and had blood work testing done. Nothing showed up so he recommend us to a RA Dr. Then the symptoms disappeared. The Dr. Was 3 hours away so we canceled. We took him to a foot Dr. And at the time not much was done , but some toe spacers for a hammer toe on each foot. His symptoms are usually at night and can last 3 hours. It starts with numb feeling toes and sweaty. Then it moves to extremely itchy feet on the bottoms of his feet and or ankls. He is extis extreamly uncomfortabale and has to kick his feet. Ibuprofen doesn't seem to work when this happened last year affected his hands also . We have another appointment with the foot doctor because he said it has happened at school. Does this sound like it is worth the 3 hr. To see the RA Doctor.? the flare ups can last an hour-3 hours at night. He has had trouble with hip pain in the morning once and couldn't stand another morning. They last about 3 weeks when they come too.

2 likes, 9 replies

9 Replies

  • gail32047
    gail32047 Decmama

    Posted

    Hi - definitely get to a Rheumatologist asap. 20% of people with RA test negative for rheumatoid factor. There is a test called Anti CCP which picks up those 20% but usually a clinical examination will too. It's the nature of RA that it flares up then goes away then comes back again, sometimes months later.

    Is he actually itchy as in needing to scratch or can he not keep still? Restless legs is a common feature of RA too. I had flares as a child which were misdiagnosed - 'growing pains' 'Ants in her pants' etc. I had great difficulty sitting still and sometimes getting to sleep because I HAD to move my legs almost constantly. Perhaps this is what your son is describing.

    RA typically starts in the feet and hands. Stiffness in the morning is characteristic too. Certainly, a 5 year old shouldn't have painful hips. If he has inflamed joints he will be in more pain at the end of the day. Inflammation causes fever (sweating) and the swelling traps nerves (numbness). He is ticking a lot of boxes.

    If this is RA, the good news is that it can be controlled now. The bad news is, any damage it does to the bones is permanent so the sooner you get a diagnosis the better. Phone now!

  • ama38049
    ama38049 Decmama

    Posted

    I was tested for RA when I was between 4-6 because I had constant pain in legs and one of the hand fingers was swollen. They never found anything although I was on prednisone and some other steroids for a while. My grandma was a head of another med department so after a while she intervened and my prednisone was stopped. The pain in knees followed me forever (I danced since 5-6 around 8 hours a week, so it was also addressed to effort).... RA was first partially diagnosed when I was 29(!). Still have all blood tests normal except one non-descriptive test... Never had restless legs but had hard time with pain (also described as growth pain). Had difficulty to sleep (also addressed to growth). Tests are much better these days. So is the treatment. And hopefully Drs. Take him to a good dr. Ask for all tests not just rheumatoid factor. I hope it's not that, but if so, meds are much better these days. Good luck.
  • EileenH
    EileenH Decmama

    Posted

    He certainly needs to see a doctor - but I'd have thought a paediatric specialist who is much closer would be a better place to start If there is nothing happening the day you see any specialist they cannot appreciate what you are telling them in the same way. A doctor who is only a short drive away can be seen when the symptoms are there, but not when they are 3 hours away.

    Try taking a video of the restlessness or anything else that is visible. 

  • maccy
    maccy Decmama

    Posted

    I would go if only for peace of mind Same with my daughter who is 30 loads of test and told not ra we have asked for second opinion. I started at 36 and her sypmtons are exactly same . Its hard his so little to be in pain i would keep pestering them good luck
  • Decmama
    Decmama

    Posted

    Thanks everyone! Of course last night was a "Good night" he had minimal discomfort. His itchiness is bad when it happens. I have to rub or scratch his feet/ankles for hours until he falls asleep. While scratching his feet/ ankles he is usually very upset because it doesn't help much and kicks his feet. It is so hard because he usually has a flare up come up once or twice a year and only last 1-3 weeks ( exhausting though) now he is older he told me his toes will feel funny at school sometimes. Before it was just at night. I just know it is not normal and it is usually gone before we can get in yo a specialist (3 week or more wait). :-/
  • gail32047
    gail32047 Decmama

    Posted

    EileenH has made an excellent suggestion. Video your son when he is having a flare. It is difficult to diagnose between flares.

    Panadol helps me with restless legs - worth a try perhaps.

  • Decmama
    Decmama

    Posted

    I don't think it is restless leg. Symptoms stopped two weeks after they started. Left as fast as they came ...almost. It is just puzzling. I will just wait for the next flare up and have him checked for infection at that time I guess.
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