Carol and

[Guest guest]

Hey Carol-did get her helmet? If so how is she adjusting? How is mommy adjusting?? Just checking in!

Beck Mom to

Memphis, TN

[Guest guest]

Carol:

I saw from your post that has AS...do you mean ankylosing spondylitis? My son does, too. Can you tell me her story?

Thanks!

and Rob 13 jas

[Guest guest]

Hi !

I would love to share 's adventures with you. At around 18 months she was waking in the middle of the night screaming. Running fevers of 103+ with a rash on the back of her knees, between her fingers ( some not all) and the feet. She also had vomiting. Her pediatrician thought she had been bitten by something and treated her with the benedryl. Well, the fever wouldn't budge but the rash got faint. So it was the blood work. In the mean time she developed a nose bleed that lasted 5-6+ days. If any of you have read my other posts and notice a slight change....well....I have a copy of ALL of her medical records now so we could give them to the Shriner's and boy did I forget a LOT! The nurse doing the blood was really a compasionate soul. After several adult sized vials had approached her threshold. So this person decided on the last lab to draw for. It was the HLA-B27. It came back positive. Well, the pedo was really surprised. He said of all the labs, that was the one he was not really concerned about. So the fun began...she was so young...2+ now and a female..as you know it is a male dominate disease and usually rears its ugly head later in life. Now it was the daily whelps all over the body....hands feet trunk with swelling. Fevers liked 104+ better for awhile...by the way she is 3 at this point...the highest her sed rate has ever been is 16! This went on until she was about 7ish. Then...it was gone! I don't know why....she was on Naprosyn liquid 3T three times a day. Dr. Jareth her rheumy...had told us that if she goes through puberty without event she may be done with this. So, during 7 & 8th grade she was hurting like growing pains....she grew 3+ inches. She is currently about 5'8 and 140#. Fast forward to last August 2001. One morning she is trying to get up and go to school. Her hips are so stiff and painful she scream/cries. We did watch and try to be open to the fact that arthur was possibly coming back.....we just didn't take into consideration the threshold of pain that can tolerate. So for possibly 2 years she was suffering needlessly. We go back to the same rheumy and she says that she is active again with the AS. Her latest studies show that she is ANA negative, C3and C4 were normal, normal liver enzymes and a sed rate of 3! She also has a fusion of L5 and spina bifida of S1. Ok, lets make her a kid and not a test to print out. This past year has been one from well.....that really hot place. The main thing that I learned was this is really a sensitive disease. suffers from the seasonal allergies. She is on the pills and inhalers. With the Naprosyn, she was having indigestion/nausea with reflux developing at night. This also contributed to the cough she was experiancing from the allergies. So now we have lack of sleep. Add to this recipe the fact that she is in the honors program and is excellerated 2 years in her studies and has been since the 3rd grade but is now in High School with boys 2 years older in her classes...and finally a suicide of a close friends father that put her in such a flare that she was stiff like rigor mortis and her dad had to carry her to the bed. She was in so much pain from the stress that no amount of medicine could stop/help it. She was in a wheelchair for 2 days with swelling, pain and stiffness for about 3 weeks. This group was so helpful for me to understand that her body reacts to issues at its weakest points...arthur. So many of you offered to talk to her about the suicide...she is really grateful but not wanting to talk. It took her two weeks to hug ..the daughter her age. Now that school is out and she is going into the 10th grade with honors she is symptom less.....not quite free but oh so close. The schools here know me as I have the opportunity to volunteer for various events. When presented with the problem of arthur the school was really receptive to me because I was there with what WE can do not what are you gonna do. goes to her locker between all classes leaving 5 minutes early to do so. She is not able to do a book bag. Even the rolling ones stress her shoulders. She was allowed to swim for her PE credit (1 semester required to graduate)I picked her up and took her to a local swim center for the class time and returned her just before her next period. The people at the swim center signed her in/out on a pass I created and were very supportive of her efforts. She discovered a core group of friends that looked out for her daily. is a carpe diem kind of kid. She is always smiling in public as she says to do other wise would give arthur the upper hand. So to some she seems normal. One looking for attention....a teachers pet....whatever you want to call it. She loves to help others as she has been so blessed to have help when she needed it. She is the underdog watcher as she calls it. Well , that is 's story. I only wish for you and Rob like I do always when I sign off~

Have a sunny day!

Carol

[Guest guest]

Carol:

Thanks so much for your reply. Rob's story is pretty different from s. But they are so alike in spirit....my son is also as you put it, a 'carpe diem' kind of kid! We figure he has been suffering for some time, and either hiding his pain or not realizing that a human body shouldn't feel like his does...he thought some of it was 'normal'. He was just diagnosed at age 12....final dx (hla-b27 +) just after he turned 13. Major problems in hip (effusions on both, right greater than left) and back, has some levoscoliosis in LS and right now his worst pain is cervical to thoracic spine. He actually had some double vision a few years ago that was undiagnosed which I now think could have been uveitis. As well as (around the same time) some unexplained runs of tachycardia (150-170) when he was just sitting still that a ped cardiologist couldn't figure out...wonder if that was some inflammation due to the jas?? He actually played FOOTBALL in 5th and 6th grade and was the scrappiest kid on the team. If we had known this was brewing we never would have let him play....Has had the occasional strained ankle that took forever to heal, some on and off complaints of back pain....but nothing major until the hip effusions. He now tells me he has been hurting for some time...I wish we could have figured it out and gotten him on meds sooner. He has seasonal allergies and has had asthma since 1 year old, was hospitalized last year for asthma. Oddly, since he has been on the naproxen and azulfidine his asthma has barely bothered him...and this is usually his worst time of year. We are going for some special pulmonary function tests in 2 weeks to see if he has some interstitial lung disease related to the jas, his pediatric asthma and allergy doc has always felt that there was something else going on with his asthma as he was so poorly controlled...even has tested him for cystic fibrosis!

I am going to ask the ped rheum at next visit if we can get some baseline xrays of his spine....I think that would be something worthwhile. The MRI of the hips did include the LS spine, but he has worse pain higher.

He at this point looks and acts normally when out and about....the few people who know his diagnosis cannot believe it. For example, last night, we joined a local pool (indoors so he can swim year round). I let him take a friend, and this friend is particularly 'energetic'. Every now and then I would take Rob aside and tell him to slow down, that he would pay for it later. Of course, he kept going full tilt until we left. An hour after we got home he is flat on his back on the couch, pale as a ghost, and in pain. He is still sleeping this morning, but I know I will hear the crying as soon as he wakes up.

I know that it is important for him to exercise, but should I limit what he does right now? I am afraid to do that, because I know that with the flair he has right now....its "move it or lose it". He is in aqua therapy 2x week but the therapists are not that familiar with JAS. Any suggestions you might make would be greatly appreciated.

Best wishes to you and ...

and Rob

[Guest guest]

Carol:

Robs sed rate is 18 currently, and RA was negative. I left that out.

sounds like a wonderful kid and I know that she will do well in life. I told Rob yesterday that he is so strong and he will be even stronger because of this. I had a great life until age 23 when my world crashed, so to speak, and I didn't deal with it very well at all...having had no experience with problems!!

That is so wonderful she is an honors student....what a gal!!

Thanks again for telling her story.

Best wishes,

and Rob 13 jas

[Guest guest]

In a message dated 06/01/2002 8:25:36 AM Eastern Daylight Time, snooksmama@... writes:

Robs sed rate is 18 currently, and RA was negative.

Make that RF !

and Rob 13 jas

[Guest guest]

Hi again!

I forgot to mention that is on Napryson 2x a day. She has repetitive exercises that involve rubber bands (GIANT ones) that are tied to the leg of the couch to keep her hips mobile and muscles toned. Also one that she uses for the shoulder area. She has found that if she gets up hurting, swimming is the RX for the day. We have a pool out back and it is REALLY HOT today. She also runs herself to the point of really paying for it later..so many in this group have said that you really need to let them test their limits rather then regret letting be just kids. I have a hard time doing this myself. The only thing has been denied by the doctor is ROTC this summer. Her last flare was really bad and the risk of joint damage was too high. She is ok with this.

Have a sunny day!

Carol

PS Where do you live?

[Guest guest]

Hi Carol,

I was very happy to read that your daughter is beginning to feel better. I also wanted to thank you for sharing 's story. She sounds like such a wonderful, well adjusted, well integrated person. Due in part, no doubt, to her having the love and support of such a fantastic Mom. Josh listened, with interest, to some of the accommodations she's had at school. He'll be in 8th grade in the Fall. The year after, in high school. The school he's slated for does not have a pool. And the classrooms are spread out on a very large campus. The other nearby school, though out of our district, is one of the few here that is built more traditionally: with a main 2-floor building, classrooms closer to one another, and a pool next door. 's PE arrangements have him wondering if maybe he should opt for Baldwin High, when the time comes, rather than Maui High. I guess we'll have to see how things go between now and then but your post has him thinking about his future choices ... and that's a good thing : )

Thanks, Georgina (and Josh, 13, systemic JRA for 7 years)

----- Original Message -----

From: Carol Shroyer

I would love to share 's adventures with you. At around 18 months she was waking in the middle of the night screaming. Running fevers of 103+ with a rash on the back of her knees, between her fingers ( some not all) and the feet. She also had vomiting. Her pediatrician thought she had been bitten by something and treated her with the benedryl. Well, the fever wouldn't budge but the rash got faint. So it was the blood work. In the mean time she developed a nose bleed that lasted 5-6+ days. If any of you have read my other posts and notice a slight change....well....I have a copy of ALL of her medical records now so we could give them to the Shriner's and boy did I forget a LOT! The nurse doing the blood was really a compasionate soul. After several adult sized vials had approached her threshold. So this person decided on the last lab to draw for. It was the HLA-B27. It came back positive. Well, the pedo was really surprised. He said of all the labs, that was the one he was not really concerned about. So the fun began...she was so young...2+ now and a female..as you know it is a male dominate disease and usually rears its ugly head later in life. Now it was the daily whelps all over the body....hands feet trunk with swelling. Fevers liked 104+ better for awhile...by the way she is 3 at this point...the highest her sed rate has ever been is 16! This went on until she was about 7ish. Then...it was gone! I don't know why....she was on Naprosyn liquid 3T three times a day. Dr. Jareth her rheumy...had told us that if she goes through puberty without event she may be done with this. So, during 7 & 8th grade she was hurting like growing pains....she grew 3+ inches. She is currently about 5'8 and 140#. Fast forward to last August 2001. One morning she is trying to get up and go to school. Her hips are so stiff and painful she scream/cries. We did watch and try to be open to the fact that arthur was possibly coming back.....we just didn't take into consideration the threshold of pain that can tolerate. So for possibly 2 years she was suffering needlessly. We go back to the same rheumy and she says that she is active again with the AS. Her latest studies show that she is ANA negative, C3and C4 were normal, normal liver enzymes and a sed rate of 3! She also has a fusion of L5 and spina bifida of S1. Ok, lets make her a kid and not a test to print out. This past year has been one from well.....that really hot place. The main thing that I learned was this is really a sensitive disease. suffers from the seasonal allergies. She is on the pills and inhalers. With the Naprosyn, she was having indigestion/nausea with reflux developing at night. This also contributed to the cough she was experiancing from the allergies. So now we have lack of sleep. Add to this recipe the fact that she is in the honors program and is excellerated 2 years in her studies and has been since the 3rd grade but is now in High School with boys 2 years older in her classes...and finally a suicide of a close friends father that put her in such a flare that she was stiff like rigor mortis and her dad had to carry her to the bed. She was in so much pain from the stress that no amount of medicine could stop/help it. She was in a wheelchair for 2 days with swelling, pain and stiffness for about 3 weeks. This group was so helpful for me to understand that her body reacts to issues at its weakest points...arthur. So many of you offered to talk to her about the suicide...she is really grateful but not wanting to talk. It took her two weeks to hug ..the daughter her age. Now that school is out and she is going into the 10th grade with honors she is symptom less.....not quite free but oh so close. The schools here know me as I have the opportunity to volunteer for various events. When presented with the problem of arthur the school was really receptive to me because I was there with what WE can do not what are you gonna do. goes to her locker between all classes leaving 5 minutes early to do so. She is not able to do a book bag. Even the rolling ones stress her shoulders. She was allowed to swim for her PE credit (1 semester required to graduate)I picked her up and took her to a local swim center for the class time and returned her just before her next period. The people at the swim center signed her in/out on a pass I created and were very supportive of her efforts. She discovered a core group of friends that looked out for her daily. is a carpe diem kind of kid. She is always smiling in public as she says to do other wise would give arthur the upper hand. So to some she seems normal. One looking for attention....a teachers pet....whatever you want to call it. She loves to help others as she has been so blessed to have help when she needed it. She is the underdog watcher as she calls it. Well , that is 's story. I only wish for you and Rob like I do always when I sign off~ Have a sunny day! Carol