iluvpink
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Location: Michigan
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Post by iluvpink on Feb 4, 2016 17:14:01 GMT
I posted a few weeks ago about my concerns of Lupus and Juvenile Arthritis and how the pediatrician was also concerned and referred her to a pediatric rheumatologist. The appointment was Tuesday. The specialist said it's definitely Juvenile Arthritis. Specifically Polyarticular Juvenile Idiopathic Arthritis. The pediatrician had said to use Naproxen in the meantime. The specialist changed that to Clinoril for six weeks. Then we go back and if improved they will start occupational therapy. If not, they will try a different medication. They mentioned a few and I can't remember which at this point. DD's hands and wrists are most affected but they saw signs of problems in other places also (mostly knees and hips). It's all very overwhelming and scary. Since starting the naproxen and now Clinoril the swelling and pain has gotten better but it's definitely still there. She's still very fatigued all the time and writing can be difficult. She's supposed to be deciding on her schedule now for next school year and she really wanted to do the part day program at the local career institute for culinary arts. She went to the information day at school and they mentioned that missing time is very very bad. Right now she misses a lot of time at school due to the fatigue and so many appts and now there will be more. Plus it's hard for her to use her hands some days. So now it seems the culinary program might not be for her.  She already has an IEP and the annual meeting is coming up. I've been playing phone tag today trying to get a hold of them to discuss what's going on. So that's that. Dh and I are trying to keep a positive attitude for dd. But really I just want to cry. On top of all that at work my boss of many many years is leaving. They are moving someone I really like into that position but it's still more stress at a very bad time. |
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Mystie
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Post by Mystie on Feb 4, 2016 17:19:11 GMT
I'm sorry. It must feel so overwhelming for you and for her right now. I hope that she will respond really well to medication and OT.
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valleyview
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Jun 27, 2014 18:41:26 GMT
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Post by valleyview on Feb 4, 2016 17:30:40 GMT
I'm sorry that you have this to deal with. I'm glad that you did get a diagnosis, though. Hang in there, can she do the culinary program later? Her hands may improve after she's been on meds for awhile.
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Post by Basket1lady on Feb 4, 2016 17:36:22 GMT
I'm sorry. I know this isn't the news you were hoping for.
If it's registration time, I'd have her register for the program. I would be easier for her to back out in the fall than try to get in in the fall. Then discuss it with her doctor. Of course they say it would be tough to miss class time. Every teacher and every program knows that. But this will be her new normal and she may be better able to cope with the fatigue when she knows what causes it.
I wish her the best in her choice.
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valincal
Drama Llama
Southern Alberta
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Post by valincal on Feb 4, 2016 17:41:40 GMT
Oh, I'm so sorry. I'm sure you're terribly stressed with worry. I hope they find a working treatment plan for your girl and that she's feeling better soon. Big hugs...take care.
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calgal08
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Jun 27, 2014 15:43:46 GMT
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Post by calgal08 on Feb 4, 2016 17:46:29 GMT
I'm so sorry you're having to deal with one thing after another. Thinking about you.
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Post by gar on Feb 4, 2016 17:50:02 GMT
Oh that's tough I'm sorry for you and for her. I hope she gets some relief with the meds and is able to do what she wants at school. |
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Post by flanz on Feb 4, 2016 17:57:49 GMT
sending you both hugs, and hoping that your daughter will soon have meds that really help!
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Deleted
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May 6, 2024 12:16:11 GMT
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Post by Deleted on Feb 4, 2016 18:02:23 GMT
I'm sorry! Such a tough situation!
To give you a little hope: My daughter's bff has Juvenile Arthritis. It is a big struggle for her. But she is still going to culinary school! Don't give up on it just yet. Wait and see what the meds and therapy can do. Good luck to you all!
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brandy327
Drama Llama
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Post by brandy327 on Feb 4, 2016 18:05:13 GMT
I'm so sorry to hear of your dd's diagnosis. One of our best friends was diagnosed with JA when he was 3. He played soccer all the way through high school and some in college and he went to med school and is now a doctor. Any type of arthritis can be debilitating...but the trick is finding the right combo of meds that relieve her pain and fatigue. I won't lie - that part is not easy. It took 2 years to find the right meds for me. But it's been nearly 10 years now on the same medication and I'm doing wonderfully! I have days that I have some stiffness and pain, but it's all VERY manageable. Lots of good thoughts for you and your dd and the family as you work through this phase.
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Post by flanz on Feb 4, 2016 18:06:02 GMT
I'm not a doctor, but decided to come back on to tell you that two things have helped the arthritis pain in my fingers a great deal:
1. I eat a tablespoon of coconut oil (raw, virgin, organic Nature's Way brand) every day. this can be stirred into oatmeal, spread on toast with salt, you can fry eggs in it, or sautee onions and add to potatoes, etc. etc.
2. A health food store supplement called extra strengthCuramin, made from turmeric.
Might be worth a try.
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Post by krc11 on Feb 4, 2016 18:24:26 GMT
Unless it involves payment and no refunds, I agree with the comment about signing up for culinary school now, while you can. If it works out that she hasn't improved much, you can always discuss that with the program director and back out right before classes start.
Good luck. I'm glad you got a diagnosis and have a plan started for relief.
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scrappert
Prolific Pea
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Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Feb 4, 2016 18:27:58 GMT
I am sorry for your daughter's diagnosis!
Thoughts to her and I hope the medication does continue to improve her pain and swelling.
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Trixie Bender
Pearl Clutcher
It's all fun and games until someone doesn't pick up on the sarcasm
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Jun 26, 2014 11:31:57 GMT
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Post by Trixie Bender on Feb 4, 2016 18:36:32 GMT
That's a lot to handle all at one time. I'm sorry you're in this situation. I hope things start looking brighter for you and your dd soon!
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iluvpink
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Location: Michigan
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Post by iluvpink on Feb 4, 2016 21:00:39 GMT
I'm sorry! Such a tough situation! To give you a little hope: My daughter's bff has Juvenile Arthritis. It is a big struggle for her. But she is still going to culinary school! Don't give up on it just yet. Wait and see what the meds and therapy can do. Good luck to you all! That's good to know, thanks for sharing! There is an open house in the evening next week and we will attend and ask questions. Hopefully the school will also be able to assist in the decision making. |
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Post by mikklynn on Feb 4, 2016 21:03:46 GMT
Oh, I am so sorry. I am happy you have a diagnosis, however! Hugs, mama.
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Post by elaine on Feb 4, 2016 21:11:29 GMT
I am sorry. I hope that your daughter is able to do the culinary school.
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purplebee
Drama Llama
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Post by purplebee on Feb 4, 2016 23:26:16 GMT
So sorry to her this. Prayers that your girl improves with the right drug regimen,and that she can continue her plans for culinary school. Hugs.....
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pridemom
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Post by pridemom on Feb 5, 2016 2:16:32 GMT
Hugs. Dd and I both have Polyarticular JIA. She will be okay. And so will you. Some kids only need NSAIDS and don't have to progress to the big drugs.
I encourage you to seek out support from the Arthritis Foundation. They have programs for kids and their families, camps, and conferences. Just a word of warning: they can push for you to fundraise. You do not have to in order to be involved. My daughter has loved camp. We are hoping to attend the conference in Phoenix this summer; hubby and I may be presenting.
Find the Mothering Juvenile Arthritis Facebook group. It's a great place to ask questions and connect with other moms.
I am involved in advocacy. I work with a parent group that meets with the pediatric rheumatologists to help improve care for our kids.
I was diagnosed nearly 30 years ago. Treatment has improved greatly in that time.
If I can be of any help at all, please just ask.
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iluvpink
Pearl Clutcher
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Post by iluvpink on Feb 5, 2016 16:42:16 GMT
Hugs. Dd and I both have Polyarticular JIA. She will be okay. And so will you. Some kids only need NSAIDS and don't have to progress to the big drugs. I encourage you to seek out support from the Arthritis Foundation. They have programs for kids and their families, camps, and conferences. Just a word of warning: they can push for you to fundraise. You do not have to in order to be involved. My daughter has loved camp. We are hoping to attend the conference in Phoenix this summer; hubby and I may be presenting. Find the Mothering Juvenile Arthritis Facebook group. It's a great place to ask questions and connect with other moms. I am involved in advocacy. I work with a parent group that meets with the pediatric rheumatologists to help improve care for our kids. I was diagnosed nearly 30 years ago. Treatment has improved greatly in that time. If I can be of any help at all, please just ask. Thanks for the reassurance. I've asked to be added to that group and have joined a couple of others. I'll check with her on camp. She went to diabetes camp several years but then decided it wasn't for her anymore. Right now it seems the medication isn't agreeing with her (stomach upset and diarrhea even though she is taking it just after meals) so they said to stop it for a couple of days and then try again and see if the same thing happens. If so we'll need to try a new med. If not, it was just a fluke/stomach bug. I hope she's not too uncomfortable for the next couple of days. They said not to give any NSAID meds as they could all upset her stomach and if she's ill/dehydrated, bother the kidneys. But I think we can give tylenol even though I don't think it helps as much. |
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She already has an IEP and the annual meeting is coming up. I've been playing phone tag today trying to get a hold of them to discuss what's going on. 
