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Update on Ryan wanted here!
I'm so glad you went to see Dr S and am looking forward to hearing how he's doing now.
[user=1274]luvmywonderfulkids[/user] wrote:
I am really a little scared right now because Ryan is not feeling anything — no changes at all so I am really anxious about tomorrow when we meet with Dr. S. I really was hoping that he at least would have a herx or something to show that it is doing something. Sue — Ryan's Mom
Sue,
I did not feel much differences either after 10 days of IV in Dr. S' hospital except I felt I could breath a little easier.Before my lungs were tight and could not yawn without heavy cough. I remember on my way driving home, I could yawn without any cough. It might have been in my mind.
As Ryan if he felt his mind was getting a little clear, he could think a little clear after the IV.
Good luck on your trip to Dr. C. Please keep us posted. Dr. C's treatment is different than Dr. S. Hope all goes well.
JB
So sorry that I am just now writing but it was the quite whirlwind trip and then I had to go back to work and play catch up! Ryan is not noticing any changes so far from the Clindy but we are still hopeful! We still do not have all the test results so we are quite axious to get them. Dr. S tested him for mycoplasma and also the ASO test.
Dr. C was totally amazing! He spent over 3 hours with us and went through every medical record we brought. He feels that one of Ryan's biggest issues could be strep — his test was really high when Dr. J in CT did it in December so Dr. S's ASO test will be pretty important. He also wants Ryan to have another Dnase test but he wants him off of antibiotics for 14 days prior to so I need to call him on Tuesday to see if he really wants us to do that now. Ryan started taking cefuroxime Axetil 500mg bid as well as nystatin today.
I am so hoping we see some differences from this because I think we have plateaued and nothing seems to be helping his hands. We did get finger splints for 8 of his fingers and when he wears them like he is supposed to, they are much straighter but they do go right back to their bent position when he takes them off. He has more mobility after wearing them, but how do you get a 15-year old to wear them all the time. I have turned into a nag and I don't like it. Take your meds, take your supplements, no candy, no sugar, wear your splints, wear your braces, do your exercises, take a sauna, nag, nag, nag!
Dr. C had him stop the azithromicin but stay on the minocycline. I have not written to Dr. S yet to tell him but Dr. S is not the one that put him on azithromicin anyway, Dr. J. did.
I felt really good when Dr. C started mentioning some of the things we could try like saunas and we had already been doing that — thanks to this group!
One other thing that Dr. C tried on Ryan for his hands was a micro dose machine that sends electrical currents into his hands — has anyone tried anything like this with any success?
Dr. S is starting to make his own wine from his own vineyards so hopefully the next time someone goes to see him, they can get a glass of wine as well! The staff at the hospital was also truly amazing.
We did make it to the Omaha zoo on our way to Missour and that was really great. We also went to Adventureland in Des Moines — reminds of the wonderful parks they have in New Hampshire.
I am so thankful that we have this group.
Sue — Ryan's Mom
Sue,
my hands were realy bad, I couldn't keep my fingers straight. I had occupational therapy and they put my hands in this machine that had real fine cornhusk in it. they ran this thing for 20 minutes and it was like it limbered up my fingers, then they massaged them with a lotion and had me do some stretching exercise. It helped a lot. This was at a hospital OT. They also gave me a hand exercise gadget and I use it once in awhile when my hands start getting tight again. Has Ryan had OT? It may help . Just a thought. Hope the meds is starting to help soon.
Eva:D
Eva Holloway
Sue,
I feel for you being the AP police all the time with Ryan. :doh:
Do you think Ryan would start posting here and asking his own questions? If he would, he would become more invested in his treatment, knowing he has choices, and can relate and ask questions of those that have “been there,” and very likely would be more compliant.
Take care…..kim
Hi Eva,
Ryan uses the same machine at the hospital and he loves it. We just got him covered with children's services so he is able to go to OT (the other insurance he was only allowed 60 days and it took them 30 to approve so he ended up with 6 sessions!) — his fingers are slowly getting better because of the OT but I was so hoping the clindy would have done something. His fingers are real bad but not because of tight skin, it is more like RA with the drifting and he has boutinare (sp?) fingers and also swan fingers and that is what is really scaring me.
Kim,
I wish that Ryan would start posting but he is very shy and would not do that — I have tried to get him to post or at least read the posts and he has no interest. He does not even tell his friends that he has a disease. I think he feels if he does not talk about it, it is not real. Also, Ryan has no pain anywhere in his body — just stomach pain once in a while but his joints don't hurt. The only time he has pain is when he tries to bend his fingers where they don't want to go.
Sue
[user=1274]luvmywonderfulkids[/user] wrote:
I wish that Ryan would start posting but he is very shy and would not do that — I have tried to get him to post or at least read the posts and he has no interest. He does not even tell his friends that he has a disease. I think he feels if he does not talk about it, it is not real.
Sue,
My son “grows up” with type 1 diabetes , dx' at 3 1/2 years old, and still in denial. I used to belong a support group for diabetic children. I tried to ask my then 12 year old son to post. He never wanted to do it. When he is with his friends, he NEVER tests himself before dinner or lunch. He pretends he is “normal” and eats all the sugary food without giving insulin. Several times he'd come home with blood sugar over 600, the meter would read “High” which means over 600. You can imagine how upset I was. It's very hard for these teens to have such dreadful disease.
I am really glad to read your update. I hope his treatment with Dr. C will show some improvements.
JB
JB,
It must be very scary to have your son's sugar that high. It drives me crazy that they can not understand that we are doing this because it is for them and their future. Ryan will not wear his finger splints in front of anyone. he is too embarrassed so I understand why your son would not test or take his insulin. I just feel so helpless.
Sue
Sue,
One round of clindy IVs is probably not enough. I hope you can find a way to do them multiple times.
We are trying to get home health but his insurance will not cover it and I can't find anyone that will do it with an out of state prescription! I just hope we can get his fingers back to normal. When I see pictures of RA hands, I am so scared.
Sue
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