I hope I'm just over reacting.. I started having "swelling" issues of my left knee at the age of 13..
My 13 yr old daughter's left knee has been so swollen.. VISIBLY swollen.. For a couple of weeks.. I took her to an orthopedic doctor.. and he said her growth plate was elevated and the tendon that runs over top of the knee and connects to the patella is swollen.. she just needs to "rest" it..
It makes me a little nervous, because that same answer sounds ALL TO FAMILIAR!! I went back and forth to orthopedists for 10yrs.. telling me it was just pain.. or just swelling.. just rest it.... then it was, lack of strength in my quad that caused the swelling and pain... (wonder why there was lack of strength.. kept RESTING it)
All this to say, I was misdiagnosed for 10 yrs +, how soon should I test my children for the HLA-B27?
I PRAY that this is one characteristic they DO NOT inherit from me......
I have found myself on my knees beside my daughters bed every night since I was diagnosed praying he spares her from all of this. I think it is very possible for her to have it. If you think the doctor is wrong follow your gut and get her into a Rheum.
I'd say have her tested. My 10 year old has been having joint pain since she was 4. All markers for inflammation done via bloodwork, as well as rheumatoid factor, have come out negative for 6 years....until a few days ago. She had had swelling in her foot for a week, we got her in to see the nurse practitioner, who ordered bloodwork on the spot. Her c-reative proteins (CRP) were elevated, indicating inflammation throughout her body. We now have "evidence" the rheumatologist can't brush off, and will get further testing done. My 10 year old's health has been just like mine was my entire life. I got my diagnosis at age 36.
The good news is that, as horrible as it would be, if our daughters have PsA they won't go through what we went through with our misdiagnoses.
I have 3 children.. the oldest is a twin, (2 minutes older) she is the one having the swelling.. Shutterbug, I too have been praying that my children do NOT have this horrible disease, but as I was telling my mother this morning... I would rather know and be able to treat her CORRECTLY... not have to have her wait as we did.. Nym.. I had no clue that the blood work could change like that!!! I am thankful that I know what I have.. and that I am NOT crazy and that IF my children have it.. they will never feel like they are not understood or that people do not believe their pain.. like they are just making it up for 20 yrs!!!!
My youngest son was tested when he was 8 (he’s now coming up to 20) as he was referred to a rheumatologist with heel pain and diagnosed with Sever’s Disease. He did test positive for the HLA B27 gene and I do sometimes worry he will have further problems because his father has AS as well as me having PsA
But here’s the thing…no one can predict the future, just because you can test positive doesn’t mean you WILL be affected, its just a marker to say you’re genetically predisposed…its not set in stone.
You cannot wrap your children in cotton wool, you cannot protect them against many ills in our society and life in gereral, but you can fight for diagnosis if you need to, you can show them how to best look after their health.
I know its not easy but its best not to worry about what might or might not be round the corner for them.
It's not that I am "worried" per say.. It's that IF she could inherit this from me... I would want to know so that we can treat her properly..(if it turned out she did have an auto immune disorder) I would not want her to be misdiagnosed for 20 yrs like I was.
I think it's a good idea to go ahead and test for HBLA right away. Hopefully she doesn't have PsA (!) but if so, it's better to get her some sort of treatment early on, I would guess, although I have no idea how it's dealt with in kids. Even if the test comes back clear, I'd still keep a mother's eye on her and the knee. If it's nothing then how nice, you worried for nothing. If it's PsA, then you got it early.
Since PsA runs in your family, I myself would be nervous to blindly accept the "it's the growth plate" theory. Sure, maybe it is; hopefully it is! But best to rule out other sources.
Yep, definately follow your gut…I think a mothers intuition is never to be ignored. I opted for my son to be tested when the rheumatologist suggested it and I do catch myself sometimes watching how he walks, moves and if he uses painkillers even though he’s an adult. But I am ‘forewarned’ and that can never be bad, but I don’t think he has joined the dots, I don’t think he is aware he could develop AS and or PsA and I haven’t enlightened him as I don’t want him to feel he has a ‘time bomb’ counting down. That may be wrong, I don’t know…but he is a ‘glass half empty’ sort of person and with already coping with attention deficit disorder (ADD) don’t want to put more pressure on him.
I know how you feel about your children. I have both AS and PsA, I can only hope that my 2 grown daughters never know the pain (physically and mentally these diseases can have. I asked both of my girls to get tested for HLBA-27, as myself and 2 of my siblings are positive for this marker, neither one came back positive, but my younger daughter has had joint pains since she was a teenager. I will continue to watch and I always let her know that she need to listen to her body and keep her doctor informed. It was during one of these conversations that, in passing really, she told me she had a small amount of P. I explained that she can still have troubles even if she was negative for the marker.
I guess I would just keep an open dialogue and I am hoping that all of your children avoid these conditions.
Hi, I did the same thing, with my son at age 13, took him to my ortho/knee guy. It was Osgood-Shlatters disease. I had never heard of it..He was on the basketball team. He told him to ice it, when in pain. And he did outgrow it.
I was surprised to read that it can also happen with girls.
They can also have it without the marker...... There are others as we are learning that are more significant than the 27. Of course you follow your gut, that's why God made moms.
There are a lot of aches and pains when growing even for kids WITHOUT rheumatic diseases. We have 20 20 hindsight its easy to say ahha I had it when I was 12 but didn't know it..... Well maybe it was PsA maybe it wasn't. We need to get our kids treated and taken care of. We also need to make sure that we can make life as normal for them as we can.
We have had a tough year at my house. My granddaughter has reached the point where she really understands she is different and is coming to terms with it. I am so glad she never saw my tears as I saw it coming. the looks from other kids the snide comments in grocery stores etc etc.
We have had dozens of kids come through our home with all kinds of special needs. You do what you need to do to prepare and protect. But extra "vitamins" instead of "medication" isn't a chargeable lie (I hope) You know a chronic "disease" is a daily battle as much from the "mental side as the "symptoms" Let them be as free as they can as long as they can. "Growing pains", "athletic strain" can be "sold" as normal for a while.......
I truly pray fro you, carrying the burden for your self is almost too much, carrying it for a child is way too much
FWIW I'm a don't get tested kind of guy. Dad died from Alzheimers. I've not had the genetic test. if get it then I'll deal with it. Don't need to deal with additional fear of getting it..... With our genes NOT having a positive test is still almost even odds for getting it....