My little boy

[luvmywonderfulkids]

My 13 year old boy has been diagnosed with scleroderma by his pediatrician. We have not been to the pediatric rheumatologist yet to be certain but I am so scared right now and I am trying to do everything I can to stop this, whatever this is!

When we first heard, we immediately started a diet of no sugar, no milk protein, and no wheat. We also started giving him Omega 3 and Vitamin E and zyflamend which is a natural anti-inflammatory (rosemary, tumeric, ginger and other ingredients).

Does anyone else have supplements that you feel he should be taking? Should I give him MSM.

His original pediatrician diagnosed him with rheumatoid arthritis, but as I said, we have not seen a rheumatologist yet.

I am definitely going to ask about the AP and I know the probable answer, but in the meantime, I would like to get him healthier with supplements if this is possible.

Please, please give me all the advice you can — I have to help my baby. He does not know anything yet because we did not want to make him scared and nervous like we are until it is definite and we have a plan of action.

Thank you so much — Sue

[lynnie_sydney]

Sue – welcome to Road Back, you will find some great support here. You must be beside yourself with worry about your son. But, truly, you have found a wonderful resource for him and for you. Cheryl F, one of our RB Volunteers, has a daughter who is in remission from Scleroderma and no doubt she will respond to your post. Meantime, I am pasting below a link to Cheryls' daughter's testimonial on our main site – http://www.roadback.org that you may like to read.

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/489.html

I will let our SD posters respond with their experiences on supplements etc. If you would like details about AP docs, it would help if you gave some details as to where you live and how far it is feasible for you to travel.

There must be so much  for you to deal with and to try and come to terms with right now, but I am so glad that you found us, you are absolutely in the right place. Lynnie     

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)

[A Friend]

Sue,

Am wondering where you live.  Regardless of where, the first thing that came to my mind was that you could contact Dr. J. S. in Iowa, and talk with him to help you with decisions.  His very first patient years ago was a high school young man.  Dr. J.S. is a prince of a man, and I'm thinking he can give you guidance.  Am thinking how wonderful it would be IF you just happen to live near him. 

There may be those who disagree, but I don't think it's necessary to see a rheumatologist, unless you feel you do.  My own experience with one in the beginning was frustrating, and he would not even consider Dr. Brown's treatment.  Someone like Dr. J.S. could advise you, OR order mycoplasma tests and other tests that you'd need for your son to begin using AP.  He also prescribes IV's if indicated, and usually are helpful to jumpstart treatment, and SD in particular. 

I know how worried you are about your son, and am hoping you get the help you both need very soon. 

Best to you,

AF

[luvmywonderfulkids]

Thank you so much for replying. Cheryl was kind enough to call me yesterday. I know that I will be speaking with her a lot.

I am in Florida but I will go anywhere. We are on the West coast near Tampa so if anyone is familiar with this area and what the Dr. are, I would appreciate any input. I do have the list of Dr. for Florida but I do not even know where to begin

 

[luvmywonderfulkids]

I am in Florida near Tampa. I thought we “had” to go to a rheumatologist to make sure that he has scleroderma? How else will I know what his problem is and what to do about it?

My son's symptoms are curling fingers with some nodules, tight skin in the hands, painful knees, painful heels, patches on his feet and chest. His wrist does not bend up and he can not straighten out his arms completely.

He constantly has diarrhea (which in the past has been corrected with flagel (sp??), and another drug for parasites — he really did have them one time shown by a test). He has bad stomach aches — but NOT heartburn because he shows me where it hurts. Once he goes to the bathroom, the pain goes away.

[DianeWI]

Hi Sue,

A Friend gave you great advice.  I personally would go to Dr. S in Iowa and forget about the Rheumys.  My experience with the rheumys has been of major frustration and hopelessness. 

I have SD and I take Vit. D.  I take a higher dosage then what it recommends on the bottle and have been feeling better.  I also take Ginseng.  Digestive Enzymes for me is a must.  Calcium/ Magnesium too.  I have had some memory loss with long term chronic illness so I hit the Ginko Biloba pretty hard too. 

I have other issues other then SD too.  I have many allergies and sensitivities.  I did not tolerate drugs well at all.  The AP is one thing, but the harsh drugs that the rheumys are insistent about can cause so many other reactions, gut problems,  kidney issues etc…  I have not been to a rheumatologist in 16 years.  AP works better then the harsh drugs.  I personally would do only that, along with controlling yeast and using supplements.

Diane

[richie]

Hi

Instead of searching for supplements —good nutritious meals will suffice –the money saved on supplements should be used to travel to see doctors who have proven success in treating scleroderma —three come to mind –one in the mid- west –one in the Northeast and one on the west coast -you really dont need any further diagnosis by a rheumatologist first –the symptoms scream  scleroderma ==while some supplements could be of benefit the initial focus should be on finding a doctor who will use an antibiotic protocol to treat scleroderma –I am aware of so many people who have done so well using this protocol –myself included –good luck and get moving !!!

richie

[Maz]

Hi Sue,

Just adding a warm welcome to the others and thought you might like to see this child's story….an antibiotic protocol (AP) scleroderma success story! This is part 1, but there is a Part 2 you should be able to click on after:

http://www.youtube.com/watch?v=V7-V323UkS8&feature=PlayList&p=988144422EED07CB&playnext=1&playnext_from=PL&index=24

No doubt Cheryl has filled you in on the best physicians to get your son started on AP asap. Unfortunately, finding a physician to treat a child can be challenging, but as Richie pointed out, there are 3 who come immediately to mind to whom you would have to travel, but all are very experienced and will treat children.

I'll send you a private message (PM) with the contact info for these docs. With AP, the earlier one gets started, the swifter the turnaround. Definitely doing what you can to support your son's overall health is a good thing, too, but getting started on AP as quickly as possible is a top priority. Minocycline isn't a scary drug, thank goodness, and is used every day by kids your son's age for acne. It has some wonderful disease modifying properties in addition to its antibacterial properties.

Dr S in Ida Grove does require a diagnosis before the initial visit, however, Dr T in Boston is a rheumatologist (he conducted the minocycline in early diffuse scleroderma trials) and can just as easily diagnose your son. Whether RA or scleroderma, AP is the way to go and having Cheryl as a support contact will no doubt help to ease your fears. 😀

To retrieve your PM, just go to the top right of this page and click on where it says, “You have 1 new message.” I'll put together the list for you now and may take a few mins.

Welcome! You'll find lots of support and friends here with much personal experience to share, as well as much hope.

Peace, Maz

[luvmywonderfulkids]

Thank you so much everyone! I am so frightened. How long does the treatment take? I have been reading about IV — is that what my son would have or would it just be pills? Does anyone know? Should I take him out of school now and just get on a plane?

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

Thank you so much everyone! I am so frightened. How long does the treatment take? I have been reading about IV — is that what my son would have or would it just be pills? Does anyone know? Should I take him out of school now and just get on a plane?

Hi Sue,

Response time varies on a patient-by-patient basis, but the earlier one starts AP, the swifter the turnaround. Much depends on severity, length of time one has had the disease and drugs a person has been on in advance of starting AP. If you watch the YouTube video above, the Mom gives her phone # and I think also her website where she documents the length of time it took for her son to improve on AP and achieve normal bloodwork.

As Richie will attest, he did very well on oral therapy alone, but some sclero patients like to get the IVs as it is felt to boost progress. Your best bet is to read the Scammell books and decide for yourself which way you want to go. The mother in the video above went to see Dr S in Ida Grove and her son did receive IV therapy, as well as orals.

When you call around to the docs on the list, you will get a better idea of how long the wait is to see each doc, then you can plan on when your son will need to be taken out of school. Some of these docs have longer waiting lists than others.

Your fear is so normal and so justified. Try to take heart, Sue…infomation is power and, once you've read the info on the main website and the testimonials, the Scammell books, spoken to other scleroderma patients and you've decided on a plan of action, as well as seen one of the AP docs, you'll feel so much more empowered, as a parent and patient advocate to your son. These rheumatic diseases are challenging, there is no getting around that, but this is a therapy filled with hope and there are many here who will support you through it all.

Peace, Maz 

[Parisa]

Sue,

I'm so sorry that you have to face this with your young boy.  However, you are so lucky to have found this site before going down the traditional path.  I have been on this board for about three years now and have watched many people, especially the scleroderma patients, get better.  There is a rheumatologist on the West Coast who has a lot of experience with scleroderma and AP.  You would be in good hands with him.  There is also good one on the East Coast.

Scared is good if it prompts you to action and finding answers.  I can already tell that you are going to be very proactive and you will find alot of support here.

 

Parisa

[luvmywonderfulkids]

Richie,

I know that I am grasping, but my son is only 13 — could it possibly be parasites or anything else that are causing all his problems? — Sue

[BrendanG]

Sue

Stay strong and don't panic.   There is some great advice and support on this discussion board and certainly evidence that AP can make a difference.

Here's hope for a great outcome for the boy!

 

cheers

 

Brendan

[Kim]

[user=1274]luvmywonderfulkids[/user] wrote:

Richie,

I know that I am grasping, but my son is only 13 — could it possibly be parasites or anything else that are causing all his problems? — Sue

Welcome, Sue.  Your story breaks my heart.  It's hard enough going through this as an adult, but I really think it's harder for the parents of young children.  Good news is this program works great for SD.  Ask me how I know. 🙂  I am one of many SD success stories using antibiotics.

You asked about supplements.  In addition to what you are already using, you may want to search digestive enzymes for the fibrosis.  I use Neprinol, but there are others. 

You also mentioned parasites, which I recently discovered have been having a party in my gut too.  I did a 30-day Humaworm parasite cleanse, and now 6 weeks later am still passing nasty stuff.  Everyone has some parasites, but most have a stronger immune system and it's not a problem, but once your immune system is weakened, you're a sitting duck for all sorts of problems…..out of control parasites is one of them. 

I don't want to totally overwhelm you here, but you also mentioned foot pain, and that can be a symptom of Lyme disease.  I only mention this because my SD and RA were actually induced by Lyme Disease, although I didn't know it at the beginning.  Ticks also carry parasites.  Finding an experienced Lyme doctor can be as tricky as finding a good AP doctor.  Let us know if you think it is reasonable to pursue this and we can get more information to you that will help save you time, and your sanity too.

People have mentioned several wonderful AP doctors already, but there is one more in Lufkin, Texas that is exceptional and a little closer.  This doctor also uses IVs which not all AP docs are comfortable with.  I had the 10-IV series in Iowa and it did help, but many others have done great on just orals.  This program is all about finding what's going to work for you.

Hang in there, Sue, you're on the right track.

kim

[luvmywonderfulkids]

Hi Kim,

Do you think that at 13 he is too young to use this? I am so worried that I might hurt him more.

 

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