Spondylitis Association of America

Son showing symptoms, his DR doesn't believe me/him, what to do?

Posted By: momtotwoboys

Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/19/06 10:10 PM

My son, Alex, who will be 6 1/2 next month, is a very active child. He always has been. Around the time he was 4 1/2 he started having unexplained stomach pain. It was an everyday thing. The only thing his pediatrician did was push on his tummy and then tell me, right infront of him, that it was all in his head and he was doing it for attention. After a few months, it stopped. When he was a little over 5 he started getting pain in between his shoulder blades. He was complaining alot, and had not done anything to hurt that area at all. After a few days of it I took him to the dr again and they looked him over. They told me it was nothing, that it was in his head and to just ignore it. It lasted about 1 1/2 months and I gave him motrin to control the pain. In the past year he has complained on his lower back hurting, and his knees hurting. I mentioned this to his dr when he went in last week for an ear ache and they laughed and brushed it off. I have told them in the past what I have and that it can be hereditary. What do I have to to to get him REALLY checked out?

Tracie
Posted By: TennisAce

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/20/06 02:25 AM

My 13 yro daughter has uspa. My son - 12- has had chronic achilles tendonitis since 7, but it could have been mechanical.

But, then.. weird toes and then some stiff backs in the morning time in the last 6 months. If I didn't have my daughter diagnosed, I would have never ever had a second thought. Both of my kids are incrediably active athletes..sons playing hockey, tennis and baseball right now so who knows the real causes of all the aches and pains.

E-mailed not the peds, but the daughter's peds Rhumy with the very non-descript, relatively under control symptoms. He wanted to see him immediately. Found seveal tendonitis areas, but not real inflammation.

I think the key is to see a Rhumy, a peds specialist, given your family history. They will get a better baseline to guide his development. My kid's Rhumy wasn't willing to diagnose anything, but he took labs and measured for future comparison.

Just a thought.
Posted By: msmousie10

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/20/06 01:13 PM

Sounds like it is time for a new doctor...good luck!
Posted By: Rach

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/21/06 06:52 PM

Hi Tracie

I wonder if the pediatrician would take you more seriously if you set up an appointment specifically for you son's back and joint problems? If it was just something you mentioned in passing they may not realise that it's important.
I'm starting to find out what it's like to see your child in pain, no fun is it? Thankfully my little girl's doctors (both ped and ped rheumy) have listened, and accepted that she has problems. I think it helps when I describe how and when the pain occurs, the difficulties she has, including the fatigue, where I feel heat in her spine and joints, and the phrases that she uses to describe it. I also mention the similarity to my symptoms because it's highly relevant of course.

Good luck
Posted By: chattermouth73

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/21/06 09:26 PM

I can not stand it when I have to deal with Drs who will not listen to me!!!!! I would insist that your son sees a ped. Rhumy. If you need a referal then ask for one and just let them know that it would put your mind at rest if your son was looked into alittle bit further! My son has AS, and it took years for someone to REALLY listen to me and it took about 5 yrs to get a diagnosis, YOU KNOW YOUR SON BEST!!!!!!! Best of luck!
Posted By: Lemeow

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/21/06 09:41 PM

Take him to another doc. If you need a referal and they wont give it tell someone higher up of this. We pay them to help us, not the other way around. Sometimes we can let things go when it comes to us. But when it comes to the kids Id get a bit bitchy if ya need to. Hope you get whatcha need for your kiddo let us know.
Hugs
Leme
Posted By: north

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/23/06 01:33 AM

If this was my child and knowing the family history, I would be asking for the HLA-B27 test - and starting the starchfree diet. To put it in our local lingo......I would not be "stuffing around" What is the point in going through all this aggravation? Is there some cash payout for 'proving' an illness where you are?

By all means wait for the 'rhumy' but look after the kid, Mum, before this awfull disease causes too much damage.

[my apologies to those who feel offended by straight talk]
Posted By: north

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/23/06 04:30 AM

Oooops.....sorry, Tracie....my previous post must have seemed ..well confused I do appologize!

My solution was to simply try the starchfree diet, and it worked. Look up the klebsiella-starch-As research.
It is a somewhat difficult thing to do with a child as the temptations around them are so great. It is debatable whether a starch free diet is something you should put him on straight away, or whether you should wait for a diagnosis. I used it as a diagnosis and got lucky.
The problem as I see it is that there is so much difficulty in getting a speedy diagnosis and damage is occurring while you wait.
I wanted you to know there is something you could do that might help and to wish you luck with your quest.
Posted By: rabbjbmom

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/23/06 09:21 AM

It is really important to take your child to a BOARD CERTIFIED PEDIATRIC RHEUMATOLOGIST. Board Certified because it means they have had additional education and testing in the particular discipline and pediatric rheumatologist because children present differently than adults, develop different kinds of arthritis than adults, and handle medications differently. As our pediatric rheumatologist explains it, the sooner you get a child treatment the better they can deal with the effects of the arthritis. If it isn't a form of arthritis, they can tell you.

It can take awhile to get that initial appointment, so make an appointment, and keep it whenever it is. If you want, you can keep calling back to see if there were any cancellations and see if they can slip you in. But put your mind at ease and see the right doctor to diagnose your child.
Posted By: Marion

Re: Son showing symptoms, his DR doesn't believe me/him, what to do? - 05/23/06 11:49 AM

If your health insurance has a website, search under "pediatric rheumatologist" to find one in your general area. Or call their 800 number. Even if you have to drive quite a distance to get to one, your son is worth it! If you need a referral, give your pediatrician the name of the the doctor you found and hound him until he gives you one! I so hope you will find a doctor you can trust and that will take you seriously. I know it can seem like a full time job! My ten year old daughter was diagnosed recently. I feel as if I have aged alot over the past two months! It's stressful.

Best of luck to you getting to the bottom of your son's problems.
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