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Just wondering if anyone on here is dealing with scleroderma in their children. My 10 y/o son is still taking supplements (colostrum, collagen, probiotics) and I’ve not gotten him on the AP protocol (still “fighting” with husband about reality of our son’s sickness). But his aches and pains are becoming harder to palliate. A lot of the docs familiar with this protocol in my area are becoming older and retiring. Any advise for this weary mom (who also has scleroderma)….
Thanks so much!
MarthaHi Does he have his adult teeth in ???? –most doctors depending on severity of the SD prefer to wait until adult teeth in before treating with minocycline
What about doxy?
DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWFNo, not all his adult teeth are in. When I spoke with Dr. S over the phone about 6 mos ago, he said that he’d give it to him anyway. Doxy is a tetracycline I think – it might change the teeth color as well. He also mentioned (and I seem to recall reading in Henry’s book) that mino can “strengthen” the bones….I just hate to go that route while he so dang young. He’ll be on antibiotics for the rest of his life. I’ve been on minocycline on and off for years. It’s helped immensely and I’m sure it’s why I’m still alive – along with benicar (ARB) every 4-6 hours. But I’m far from cured or without symptoms. I’m so grateful however… What’s so difficult for me is getting people behind me. I tend to doubt myself because these diseases wax and wane daily, hourly. So family, friends say things like he’s running circles around their kid, etc. And because it’s invisible at this point, people almost act like I have that munchausen by proxy disease – . I will give the Dr. F a call to see what he says. Thank you all! 🙂
I recall many years ago a six year old girl was treated successfully with minocin –in fact I think it was DR F’s patient –
I called his office just now. His receptionist seemed sympathetic and felt he just may take this case. It would probably be contingent upon our insurance benefits and/or our willingness to pay out of pocket. She said out of pocket, we’d be looking at $5,000-$10,000. I’m pretty sure my insurance would not pay since there are pediatric rheumies in Utah…..but of course, they tx as first line meds cell cept, etc. I’m so tired of fighting doctors. I’d want to go with AP and possibly the benicar (ARB) because it has helped my lung issues immensely also kidney….not sure if it works the way MP theorizes that it does, but at the very least, it palliates….and at this point, it’s good enough for me. My consternation since I’m pretty much alone in all of this. Everyone wants to bury their head. Is since he’s such a young child, do I go to a Rheumatologist, Dr. F who can tx all ways. Or do I travel to Iowa (if Dr. S) still practices and basically get the IV’s and he puts him on mino? There’s really no right or wrong answer.
I’m pretty much freaking out. The other thing is that he doesn’t know he’s sick. How do I approach this without alarming him when either way, a trip to Riverside where multiple blood tests will be drawn or get on a plane and fly a thousand miles to see a doctor. He will know that something is up.Martha
Have you tried any diets?
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousYes Linda. He’s been gluten, dairy and egg free for years (4yrs old). He has a hard time with his stomach. He’s 10 y/o and only weighs 68lbs. I’ve been able to palliate his symptoms fairly well with super healthy diet, and the bovine colostrum, collagen, probiotics, etc. Trying to buy time for him to grow and develop before I have to bog his system down with antibiotics.
Hi Martha,
What form of scleroderma does your son have? I’m going to reach out to a great mom whose son has en coupe de sabre. She has used traditional meds and AP for her son and knows everything there is to know about the effects of both on a child’s growth and development as well as the course of the disease and possible complications.
Kelly
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsHi Martina –I re-read your intial post and almost fell off my chair !!!!! I noticed among the supplements he is taking is collagen ??? Incredible –who in gods name would tell you to take collagen for scleroderma ???? I cant believe it !!!!!!!!! The basic disease process of scleroderma is the over production of collagen –In fact scleroderma is referred to as a collagen vascular disease –I leave now absolutely scratching my head !!!!!!!!!!!!!!!!!
Thank you Kelly, that’d be wonderful. He has systemic sclerosis. I’ve spoken with Lauren who has been very helpful.
Martha
Martha you read my mind, it’s Lauren I was thinking of, so happy she’s already on your team!
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsHi Since its systemic sclerosis -it doesnt appear his symptoms are being treated –is there skin involvement -Raynauds -reflux etc and what is being done about it -is he also under the care of a pediatric internist !!!—hope you stop the collagen —
Richie,
His seems to be progressing like mine did. Of course, mine didn’t start until I was an adult and his symptoms are more generalized malaise, aches and pains, sometimes he’ll complain about his fingers hurting when he’s doing schoolwork. He’s always cracking his hands. His little body cracks every time he moves. What’s hard (and a blessing I guess) is that like me, he can run circles around other kids and seem normal and at other times, he’s tired and achey. You’re right, I need to keep up on his metabolic labs to make sure his organs are ok. It is difficult to jump right onto AP when there are no outward signs of the illness, only positive blood work. I have to work with my husband also and he isn’t keen on jumping right on daily antibiotics at this point…I understand how you feel about collagen. It’s a scary word used along with collagen vascular disease. It does help to palliate his symptoms. It’s kind of like jello only I put it in his OJ or hot tea. It’s the same stuff you see when you cook a chicken down to make chicken soup (the jelly like substance) It’s miraculous in palliating his symptoms temporarily.
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