Newly Diagnosed 11 Year Old Systemic Scleroderma

[KendallsMom]

Hello all. This is my first post here, I was told about this page on Inspire. I look forward to learning more about AP and hearing other stories of those going through what we are; hoping to hear some success stories as well!

My daughter was recently diagnosed with systemic scleroderma (in May). Over just a few short months her the skin on her legs, stomach, feet and hands has been covered with hardened skin. So far she has no internal damage but doctors are very concerned, and want to be “aggressive”. She has been on Methotrexate injections, Prednisone and Plaquenil for about 12 weeks now.

Just last week our rhuematologist said they aren’t happy with the progress or her PFT test so she will get a CT scan tomorrow. They have also ask to consult with a doctor at the University of Michigan. He has more experienced with scleroderma so they are wanting a little guidance.

I welcome any questions and advice that you are willing to share. This is all so overwhelming, we’re just trying to learn everything we can about this disease and the potential treatments.

Thank you in advance for your support!

[Susan]

Dear KendallsMom,

Please hang in there:) This is the most supportive and encouraging forum. In time, the overwhelming feeling ends and there is just a sense of relief that you’re being proactive and doing the right thing for your daughter:) I know because just a few short weeks ago, I was in your shoes.

Sue (aka Jackie’s Mom)

[Maz]

Hi KendallsMom,

Very sorry to hear about your young one’s SD. As an adult, it is shocking enough to receive a rheumatic diagnosis, but when it is one’s child, it must be much worse. At first, you will likely feel helpless and at the will of the medical teams that are handling your daughter’s treatment, but as you become educated and learn about treatment options and talk with other parents who have gone before you, you should feel a lot more confident about which road to travel.

You didn’t mention a desire to seek AP (antibiotic protocols) for your daughter, but am guessing you’d like to learn more? It’s hard to take in a lot of info at first, but would suggest starting slow by reading the Henry Scammell books, which are the books written about Dr. Brown’s work and his approach to treating the infectious causes of rheumatic diseases. Links to both books are found under the Resources tab at the top, if you click Recommended Reading and Viewing. Under the Pulsed and Daily Protocols, you’ll find the info on the books.

https://www.roadback.org/resources/recommended-reading-viewing/

We are still building the renewed site in stages (research is yet to be added), but you’ll also find helpful info on the rest of the site under the FAQs. I can also send you a listing of studies correlating infectious causes to various forms of SD if this would help.

If you need an AP doc referral list or Lyme Literate MD list, you’ll find the emails for requesting these under the Contact tab at the top right of this page. I have a bit of knowledge about which docs will treat pediatric cases and there are other parents here who can share what they have done, if you need further assistance. Sometimes travel is necessary, depending upon your location.

The foundation is staffed wholly by volunteers and there are no medical professionals, but there is a vast wealth of personal experience of AP to be found here. So, as Susan kindly mentioned above, please feel warmly welcome to ask any questions you would like.

[KendallsMom]

Thank you both for your responses. I am trying to become as educated as possible, until this site I’d never heard of AP so yes I am anxious to learn more. It is crazy to me that doctors wouldn’t even mention this as an option. I have just ordered the Scammell book so I’m assuming I’ll find out the answer to that along with other great information.

Thank you again for all of the resources, I have some serious reading to do!

[kater]

Hi Kendals mom
as a parent of children with health struggles I have compassion for you. I send you courage and strength. It is the hardest thing to make decisions on behalf of a child.
I was diagnosed with systemic sclero 5 years ago and have it pretty much in remission the last 2. I believe mine is caused by Lyme and mycoplasma P. I was on aggressive antibiotics for 3 plus years–now on 100mg minocycline, low dose naltrexone, dessicated thyroid and a bunch of supplements and probiotics. I have never taken the suggested methotrexate and plaquenil and I have never progressed to any type of organ involvement. Each journey is unique and of course I can’t advise what is right for you or your girl but I would surely encourage you to find a pediatric AP specialist to consult with. I credit AP with changing the course of my illness and my life and am always so thankful to the people at Roadback.
good luck to you both
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Jez]

So sorry you and your daughter are having to go through this. I was also diagnosed at the age of 11 with systemic Scleroderma and it also rapidly progressed. I am glad that you have found this site, and I am glad that you are also reading the henry scammel book. I was about 14 when my mother was referred by a friend to read the book and look up the treatment. Thankfully, we found dr. trentham, who was practicing at the time (sad that hes retired) and I was able to get stabilized on this treatment. If you decide to move further and want your daughter to try this, it will be difficult at first to find a doctor who is willing to provide the treatment, but thankfully we have this site and they could be able to provide you with a list of the doctors who are open and willing to treat her with this. I hope that Jehovah God blesses you and your daughter. Wish you all the best.

[Martina]

Hi Kendallsmom,
My son just turned 11 y/o and was seen by a rheumatologist 2 years ago in SLC because he was showing symptoms that I recognized early on in my disease (I also have systemic sclerosis). He had/has positive antibodies for the disease as well as a high sed rate and one other marker. At the time, the rheumatologist said to wait and see. I’ve just been giving him supplements (colostrum) – ones that have helped me over the years. But they are not helping as well anymore. I’m trying to get my husband on board to go see an AP doctor soon. It’s overwhelming when your child is so ill, I know. I’ve been on the AP for over 15 years and I’m sure it’s the reason that I’m still alive. Please let us know how it goes. God Bless you and your precious daughter.
Martha

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