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First I must apologize for not posting in so long ! Michael has been doing pretty good for the most part . His brain lesions have healed and he’s doing well in school. Our most constant problem is joint pain and the more he hurts the less he wants to do and lately the pain has been getting bad again. We seen an Orthopedic specialist at Cleveland Clinic recently who pointed out to us in different areas how Michaels tendons & muscles have tightened up and his range of motion is not what it should be, he strongly suggested yoga. Great – only I don’t know a thing about it & as this will greatly affect his day to day life I sure don’t want to teach him the wrong way & finding a local kids class has not went well as of yet. I asked the Dr if he’d write a prescription in hopes we can get the insurance to help in some way but were still waiting on that. In the mean time he’s doing a little stretching and 15 minutes on the treadmill every night – he’s currently taking 400 mg Amoxicillin 2x a day. I’d love to hear your thoughts or suggestions please !
Hi Good to see progress —a problem with scleroderma is that tendons can harden reducing range of motion –I might suggest getting a prescription for physical therapy –Insurance will certainly cover this and it might be more structured than yoga and certainly less chance of doing wrong excercises –if one of your docs agrees to write the rx be sure it is written “En Coup form of scleroderma “–
richie@kseevers wrote:
I asked the Dr if he’d write a prescription in hopes we can get the insurance to help in some way but were still waiting on that. In the mean time he’s doing a little stretching and 15 minutes on the treadmill every night – he’s currently taking 400 mg Amoxicillin 2x a day. I’d love to hear your thoughts or suggestions please !
Any chance the prescribing doc would be willing to add in a second, but bacteriostatic, macrolide antibiotic, such as biaxin or azithromycin? He’s a bit young yet to go on minocycline or doxycycline, but right now you’re only targeting cell-walled bugs and not the cell-wall-deficient ones. Penicillins are great and it’s done a fine job of clearing up your son’s brain lesions, but bacterocidals, like penicillin, will drive the cell-walled forms that aren’t killed off into the pesky CWDs and cystic forms.
My suggestion would be to shoot off an email to Dr. S in Iowa to ask him for his insight on a protocol tweak, to either switch out the penicillin or to add something to it.
So great he is doing so well otherwise, Kseevers, and no news quite often means good news, as in your case! Occasional updates like this are always great to receive.
Bonnie is our resident yoga expert, so perhaps she will chime in on some suggestions in this context for you. All I know about this form of exercise is that sometimes you’ll find classes at your local YMCA or town recreation center that aren’t costly. There are also rehab gyms around…I go to one in my town and the therapists work with whole body fitness for all sorts of folks in this type of situation, unlike a physical therapist, who is usually just working with one or two joints at a time for acute injuries/surgeries.
Maz your awesome !! As soon as I read your post I sent Dr S an email and I’m going to talk to his Dr about all this Thank you Thank you Thank you !! Will keep you posted on what they say
Richie Thank you for your reply, I’m still working on that prescription keep your fingers crossed for me !!
Hi kseevers
Great news about Michael’s progress and hope you can push his wellbeing further with a tweak of the protocol and some gentle yoga to improve his range of motion.You may find this information helpful – put out by Johns Hopkins. It’s specifically targeted at arthritics and other people with limited range of motion.
http://www.hopkinsarthritis.org/patient-corner/disease-management/yoga-for-arthritis/
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Wii Fit has yoga on it. That might help in the interim and also something he would relate to more since it is “gaming””. They show you what to do, then score you on how you did. They also explain what the different poses help.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
We have started PT and we have an appt with his pediatrician to compare notes and see where we want to go from here regarding meds & such– Maz I have all your info ready and I just heard back from Dr S & he said 50mg mino — I’ll keep you posted on that one. I’m currently on hold to appeal his insurance only covering 30 PT sessions per year. Thank you everyone !!
@kseevers wrote:
We have started PT and we have an appt with his pediatrician to compare notes and see where we want to go from here regarding meds & such– Maz I have all your info ready and I just heard back from Dr S & he said 50mg mino — I’ll keep you posted on that one. I’m currently on hold to appeal his insurance only covering 30 PT sessions per year.
That’s great, kseevers! Glad Dr. S. was able to offer his insight for you – he’s a good man. 🙂 All the best on the appeal and thanks for the update.
Hi K.
I have been reading your posts since you started as I was so worried about your son.I totally agree with Dr. S about the mino.I don’t think that small a dose will damage him and I have found out the hard way that only mino will work well for SD.
Read Randy’s post below.Same story as me.
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