Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Signs of Spondy in children?

Hello everyone,
I sit here tonight worried about my Gianna. For about a year now I have been more and more worried about her knee pain and front of her calves. I dismissed it mostly to growing pains or charlie horse pain which she gets often since she was a wee one. She runs about constantly so I contributed the soreness to that.

This changed yesterday morning. She got up early to take a shower and when she was getting out she yelled for a towel. Then she moaned that her knees and feet hurt. I thought she was trying to squeeze outta school, but when I looked down at her feet...they were red in the tops of her feet and puffy. I had never seen that before. I would rub her calves in the past, but I noticed this time it was VERY obvious. I was shocked. I talked to my mom as she usually points me in the right direction. She said she was worried too. She said Gianna mentioned to her that her legs fall asleep on her often. She had never told me this before. My mom called her over from playing at her apartment...and sure enough her right knee was puffy and looked like there was swelling or fluid. She said to stop touching her knee b/c it hurts. So we let her scoot off. I called her pediatrician and she is set to see him Monday morning.

I was just wondering on those of you who have children with Spondy or have any information on it...are there any particular signs? I know I was a couple years younger when my knee started, which is about the time she started complaining on and off. On her knees it's not both, it's either one or the other in pain too.
Months would go by and it would stop then again. Now it made me nervous. I started with knee pain for years, and in my teens came the on and off back pain. Just feel useless in what to look for. She hasnt a clue of my worries and will keep it that way. She is the apple of my eye and it hurts me deeply to see her in pain.

Any information or links would be greatly appreciated.



Buggy

Oh Buggy,I can imagine how worried you are,when it`s us,thats bad enough.When it`s one of our kids,thats a whole new ballgame.No mother likes to see her kids hurting,it hurts us more to see them hurting.I will be praying for you all on Monday,hope everything is fine.Please let us know how you get on!!!!!!!
Take care
Shirl

I can very much understand your worry over your daughter. I am also very worried about my youngest son. He too has complained about certain pains in his legs and hips and even the bottom of his foot. All of his complaints came before I was finally dx'ed in Dec. I know what the pain is like for me and my biggest fear in the world is that my children will have to go threw what I have had to. I am very glad that you have made the appointment for her to be seen by her dr. I hope that they are informed enough about AS to know if that is what it is or not. I know form experience that if the doctors here in my area had a clue about AS I could have gotten proper treatment years ago. My case has been text book all the way, and it is very sad that the disease had to have already progressed into my neck before I could finally get a dr to understand how I was feeling. I pray that your little one doesn't have AS.

Blessings
Sarah Jane

Hey Buggie!

You know how we talk about enthesitis - inflammation where tendons insert into bone - that's really important in juvenile AS. As a matter of fact an entity called "arthritis-enthesitis" is on one end of a spectrum, and an 'official' diagnosis of Juvenile Ankylosing Spondylitis (JAS) is on the other (they usually wait for changes on an Xray to occur before they call it JAS). Common places for enthesitis to be found are in the plantar fascia (bottom of the feet) and Achilles tendonitis (back of the heel). Unlike AS in adults, which starts more frequently as SI or lower back pain, JAS usually begins as pain the larger joints of the lower legs.

I'm glad you have an appointment with a doc first thing on Monday. I know this must be really scary for you, but I gotta tell you, kids on a whole respond soooooooooo much better to treatments. I spent part of my time this summer working in the pediatric rhematology clinic and most of the children I saw were being monitored in their first year of remission! I don't know if that's a reflection of the disease itself, or if kids just have a larger placebo effect - maybe they just trust that adults are going to make them better? Who knows?!?!? All I know is that the majority of them were feeling much better and doing "normal" kid things!

I hope with all my heart that Gianna is 100% healthy and that this is attributable to something else. Lots of deep breaths and take it one step at a time, OK? We're here for you, always.

Love,
Jeanna

It is on the edge of a petal



that love waits - WC Williams

mommabug,

First I have to say that I am hoping big time that this turns out to be nothing.
I'll be thinking of you Monday.

Second, I'm sure Lori will be some help to you. She's been there...well, you know.

Thirdly, don't ya just love our own Dr. Strutsy who pops in and gives it to you straight She such a blessing that girl

God Bless,

linda

Hi Buggy

I just wanted to let you know that my thoughts are with you both. I don't have any children
so I can only imagine the worry for you. I will keep my fingers (and toes ) crossed
that it is nothing serious.
Please keep us informed.
Hugs
Valerie
(don't mind if the typing isn't the best. My hands just aren't working right today)

Hi there...
Yes you are right. No mother likes to stand helplessly and worry about the possibility of AS. I suffered with symptoms for many years and know how painful it can be. It would come and go the pain, but just enough to remind me that something wasnt QUITE right.

I'll let you all know how monday's visit works out. I am hoping it's growing pains or something not so serious.

hugs]]]


Buggy

Thank you for your support Sarah Jane.
I have been listening to her complaints and it seems to be the same exact spots each time. What shocked me was the swelling the other day. I did NOT expect to see that. I kept hoping it was growing pains. I keep hoping right now as well.

Her pediatrician is an excellent doctor. He is very knowledgeable and up to date on medical issues. I hope he can pinpoint what's causing her discomfort. She was running around like a "looney goose" today so that's a good sign the pain is gone again. I hope it stays that way.

hugs]]]


Buggy

Thank you Jeanna..
like my daughter you can give me hope in the toughest moments.
Yes, I remember enthesitis, as a matter of fact thats what my Rheumy said was my biggest problem. Not so much as swelling in my joints but the muscles and tendons areount the joints that had inflammation. That made alot of sense from my adolescent years. I had lots of knee, pain in my shins and pain in my feet. It wasnt until my teens that I experiencing the sporadic episodes of terrible muscle pain and spasms. Just as I was about to wonder, it would dissapear for months at a time.

You are right. Children have a zest for life and spirit unlike the adult. They love life to the fullest and enjoy it for what it is and every moment of it. Gianna ALWAYS whines about "scratches" or bumps for DAYS on end. Yet this....she doesnt do the same kind of whining. It's a moan. Then come the welling of tears in her eyes that I know are real. She cant sleep all evening when it happens. I usually end up rubbing them down with Ben gay or heating pad or olive oil. It usually doesnt get rid of the pain but eases it enough for her to get some sleep. I try to get her to take it easy at PE on those days, but she said "Nope Mom, we are playing "steal the bacon" at physical ed, and I am going to win" A real trooper. Then she comes home like a wounded sore baby bug. But she's a fighter.

I'll let you all know how monday turns out....thanks for being a friend...


Buggy

Thank you Linda..
Yes Dr. Strutsy is always so informative..gotta love that sweet smile of hers.
I hope it's nothing too. She was in full force running about with no signs of pain which makes me smile. We have the appointment early monday morning...which her pain is usually early morning or in the evening. So hopefully we can shed some light on what is happening.

hugs to you]]]]


Buggy