My little boy

[Kim]

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

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.

 

There is a formula for children.  Lots of info on their website and you can also call customer service with questions.

[luvmywonderfulkids]

Thanks Kim, I will go to their website and check it out. Has this cleanse helped you? My poor little boy has diaharrea all the time.

[Kim]

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

Thanks Kim, I will go to their website and check it out. Has this cleanse helped you? My poor little boy has diaharrea all the time.

Yes, it has helped tremendously.  After 6 weeks I am still passing stuff that shouldn't be there.  I have to wait 90 days before doing a repeat, but I will definitely do it again.

Casey from Canada just ordered HW for her 13 year old son, who is also sick.  If she doesn't post his progress then you can send her a private message and she'd be happy to talk with you.  Parasites steal your nutrients and for a growing 13-yr old is not good.  They can also contribute to “leaky gut syndrome” where you get small holes in your intestines that the food leaks through and then your body attacks it as a foreign invader.  If your son has not yet been tested for Celiac, I would strongly suggest that too.  Celiac also causes “leaky gut”.  Casey hounded me about that one too. 😉  We used Enterolab.com (she insisted :)) and their stool testing is supposedly much more sensitive than the blood tests at catching Celiac early.  I tested positive for that and am now gluten free.  None of the doctors I see even suggested a Celiac test.  You can order the Enterolab test kit yourself without a doctor's order.  My insurance reimbursed me, but not all do. 

We hear it all the time in ads about gut health, but healing your gut really is crucial to getting well.

I'm sure you're totally overwhelmed, so wishing you luck in sorting this out.

Take care………..kim

[luvmywonderfulkids]

I don't even know what Celiac disease is but we have him on a gluten-free diet already but we have not seen any improvement in his diaharrea yet. His gasto had ordered a prometheus test so I think that is one that would show this? Am I correct? His pediatrician said not to do the test yet until we saw the rhuematologist but now I will demand that we do the test.

Did you get tested for parasites and should i ask for that test as well?

I am still so confused as to whether or not to even go to the Dr.

Everyone is so wonderful. — Sue

[A Friend]

An excerpt from Kim's post:  If your son has not yet been tested for Celiac, I would strongly suggest that too.  Celiac also causes “leaky gut”.  Casey hounded me about that one too. 😉  We used Enterolab.com (she insisted :)) and their stool testing is supposedly much more sensitive than the blood tests at catching Celiac early.  I tested positive for that and am now gluten free.  None of the doctors I see even suggested a Celiac test.  You can order the Enterolab test kit yourself without a doctor's order.  My insurance reimbursed me, but not all do. 

Kim, All,

Just want to add that one of the seeming favorite AP physicians in the US, Dr. K, is very active with her AP patients in addressing celiac and “celiac syndrome.”  She maintains that even those who do not have a true genetic Celiac Disease can have the same type of gut problems as people who do, and can be adversely affected by gluten grains — this is called “Celiac Syndrome”, in which the symptoms/problems can be the same.  This is also addressed on her web site.    

Dr. K looks for these problems in her patients.  She spoke at a program in my city (our local support group sponsored this, with the Celiac Support Group furnishing the refreshments).  There was a full house, and she educated a lot of people on how to address and treat these problems. 

When our “gut” is sick, we MUST take steps to restore it.  It can take a while, but health depends on it.  (Dr. Sherry Rogers may have a book on this subject.  If you'll go to http://www.prestigepublishing.com, there is an 800 number to call.  The person who answers the phone about her books can tell you if there's a book on this subject.  Dr. SR has said during interviews that she had to get the 5 medical degrees she has, because of her own longterm illness — that she had to study all these subjects to get well.  (Nothing like another patient to teach us, huh?)

Best,

AF

[JBJBJB]

Sue,

So sorry to hear your son's diagnosis. I have a 13 year old and a 15 year old (they don't have SD, the 15 yo has type 1 diabetes). I can relate to your feeling of fear, frustration, desperation and anger. I hope you will find a good AP doctor who can help your son to stop the SD progression. A conventional rheumatologist may not even know about AP, or deny about AP. You may get confused.

Cheryl's girl Jess is the living proof AP can save SD. Cheryl is God sent to the mothers who have SD children. Do more research and learn more about it. It will give you the confidence to deal with this dreadful disease for your son.

JB

 

 

[luvmywonderfulkids]

JB,

Thank you for the kind words. I am spending every waking moment researching everything I can. My son does not know so it is sometimes difficult and I don't even know what to tell him. We are going to the All Children's on Wednesday but I hope to have a phone consult or appointment with an AP doctor before then. If that happens then I can discuss this with the ped. rheumatologist. I am hoping that this Dr. will say, oh, yes, I have heard of that and let's give it a try.

If anyone knows the pediatric rheumatologists in Florida (there are only 5), please write me and let me know what your experiences with them are.

I can not tell you how thankful I am that I found this site.

Sue

 

[luvmywonderfulkids]

Where is Dr. K?

[Susan LymeRA]

Hell Luv!

Welcome to roadback.  I don't have SD, so I won't add to the wonderful wisdom you have already received.  I will just add my experience regarding my own Rheumatoid.

First, know that these auto immune diseases have a cause even if you are told the doctors don't know what the cause is.  The names….RA, SD are just that.  Names for disorders, cause unknown.  They are not the disease.  And I NEVER bought into the theory that my immune system just woke up one day and flipped out on me. 

Remission is very possible as witnessed not only by us here but by 50 yrs research.

I'm glad you are thinking about your son's diet and lifestyle in addition to medications.  I believe nutritional healing is as important as the medical healing and BOTH are needed.

I do a lot of supplementation but I completely agree with what Richie said.  Find a really good doctor first.  The doctor should run bloodwork to determine where your son is deficient and how to treat.  Otherwise, you are striking out blindly. 

I am one of the lucky few who has a rheumatologist who believes in infectious causes to auto immune disorders AND is a lyme disease specialist.  She is also integrative and addresses deficiencies in the body as well as disease.  She covers all bases.  I will be happy to share her name with you, but she is just outside Washington D.C. and requires many visits.  It will be better for you to find a good AP doctor closer to home.  If that doctor is not also trained in complimentary medicine, use a two doctors.

It sounds to me like you are already of that mindset.

I have noticed that SD seems to respond very well to AP.

Susan

[A Friend]

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

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.
……Sue

Sue,

You may not be familiar with Dr. Garth Nicolson.  He is a scientist, not a practicing physician.  However, he is the one who worked with the returning veterans from the Gulf War, who had debilitating illnesses and were not getting help.  It was Dr. N who found that Gulf War Syndrome could be treated with AP.  I did a search on his site this morning for a new friend, and the information I found from Dr. Nicolson reminded me of the question you asked above.  I believe his comments will reinforce supplementation that  many of us are doing, in addition to AP, and am posting some excerpts below.  (Let me add that I've gone to those I consider the best AP physicians, but even then I found that 3 out of 4 did not have an indepth knowledge of supplementation, such as Dr. N shares below.  Some AP patients have an N.D. (Naturopathic Physician) prescribe these for the patient:

http://www.zoominfo.com/people/Nicolson_Garth_1164414.aspx
 
[The following are excerpts from the web link just above.  Emphasis has been added with underscoring.  AF]
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One of the first things that Prof. Nicolson mentioned was that a large subset of Chronic fatigue patients actually have Lyme Disease.Nicolson feels that Chronic Lyme involves viruses, bacteria and fungus.He says that this chronic state evolves over time.The Lyme infection can weaken the system and allow for these additional microbes to accumulate.It is also possible that it could work the other way around.A collection of other microbes, besides Lyme, could weaken the immune system, which could then allow Lyme to become chronic…… [skip to next excerpt]

………Nicolson discussed co-morbid states, explaining that most patients with chronic illness are infected with more than one pathogen.Each disease causes its own problems and this could be the reason why so many signs and symptoms keep shifting.Some of the culprits he mentioned are: mycoplasma, chlamydia, rickettsia, brucella, borrelia, coxiela, EBV, HHV6, CMV, enterovirus, Hepatitis C and fungus………. [skip to next excerpt]
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…….Nicolson also advised checking for dental infections in chronic illness, as this is a very efficient means of transporting germs into the body.And he noted that being bitten by a tick is not the only way to acquire these infections.Some are sexually transmitted, and some can be passed through the placenta, breast milk, tears and other bodily fluids.

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[underscored emphasis added][/size%;”>
One of the most important bits of advice he shared with us was to keep your immune system in tip top shape.He suggested reducing alcohol, caffeine, sugar and fats.Some of the immune enhancements he spoke of were: natural antimicrobial products, hyperbaric oxygen treatment, hydrogen peroxide baths, ozone therapy, Infrared saunas and sublingual B vitamins.Vitamins C, E and CoQ10 were also thought to be needed.Helpful minerals mentioned were zinc, chromium, magnesium and selenium. He stressed the fact that antibiotics by themselves will not cure you.It is up to the patient to follow appropriate healthful suggestions.

Professor Nicolson also spoke about Gulf War Illness and how it's symptoms mirror Chronic Fatigue Syndrome, Lyme, Fibromyalgia and certain other diseases. [/size]
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AF[/size%;”>[/size]

[luvmywonderfulkids]

AF,

Thank you so much! I just started to read part of it and one of the items talks about parvovirus. On one of my son's blood work, he tested positive for parvo — meaning he had it sometime in his past. Does this mean anything to you or anyone on the board?

Sue

[Maz]

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

Does this mean anything to you or anyone on the board?

 

Hi Sue,

Yes, it means something to me, because I got Fifth's Disease (Parvovirus B19) in my 30s and was quite ill with it. It's a very common childhood illness and one of those community-acquired infections that are passed around kids at playgroups and school. In children, it's usually a mild infection that just causes mild cold-like symptoms, a low grade fever, lacy, reticular rash on arms, legs and torso (that looks worse when hot like after a bath), “slapped cheek” appearance, and maybe mild aches and pains. The majority of children aren't phased by it and it passes quickly. Once you've had the infection, you are immune to it.

In adults and those who are immune-compromised, it can be a much more serious illness. My daughter (then 3) brought it home from nursery school and, for her, it was no worse than a minor cold bug. When I got it from her, however, I was very unwell with extensive joint pain, swelling and malaise, along with the other typical symptoms that lasted several months.

Here is a link that describes Fifth's Disease in some detail:

http://kidshealth.org/parent/infections/bacterial_viral/fifth.html

As with any infection, whether bacterial or viral, the body will always retain some of that infection in a non-acute form. So, once you have had Fifth's Disease you will continue to test postive for exposure to it.

My interpretation of Garth Nicholson's comments above is that he is alluding to all the possible offenders in one's “total pathogen load.” That is, everything to which we've been exposed in our lifetimes. Sometimes the pathogen load becomes too much for the immune system to keep in check and many of these infections will group together in communities that are known as biofilms (see Suzanne's recent thread). These biofilms afford protection for pathogen colonies that have the ability to communicate chemically with one another. When one's immune system becomes compromised (shock, stress, illness, virulent infection, etc), the strongest within the bio-film community sends out its frontline soldiers, causing the immune system to be overwhelmed and hypervigilant.

So really any one infection can be the trigger, whether bacterial, viral or fungal, but its the total underlying pathogen load which needs addressing. Although tetracycline antibiotics have some immune-modulating and anti-inflammatory properties in addition to their antibacterial properties, they are useless for the viral component of one's pathogen load. In these cases, other measures may be needed.

Peace, Maz  

[JBJBJB]

Oh one more thing. If you decide to see Dr. F in CA, you need to understand he does not prescribe the medicine to residents outside CA. A member who took her mom to see him had to find a local doctor in TX to prescribe the medicine.

Dr. S in Iowa prescribes and refills for every one, even including international patients.

JB

 

[luvmywonderfulkids]

Thank you JD — that is really good to know. I am hoping that I can get his local pediatrician to at least prescribe the medication under the Dr. F or the AP Dr's direction — not sure if that is possible or not.

My poor little boy is having a terrible time with his stomach right now — he has diaharrea every day now and bad cramps — not heartburn because it is lower. I think it has gotten worse since I took him off sugar, milk, milk protein and wheat. Does that even seem possible?

Sue

[Kim]

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

Where is Dr. K?

She is in Lufkin, Texas.

[Author]

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