My little boy

[Kim]

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

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

Sue, I am so sorry your child is miserable and obviously a cause for concern. 

Gluten is cleverly disguised in so many packaged foods that it can be a daunting task to really be 100% gluten free.  Is it possible he is getting some hidden gluten?  There is a list at celiac.com with non-safe additives to watch out for.  Even a small amount of gluten can be problematic for those with extreme sensitivities.

Take care…….kim

[Susan LymeRA]

Luv

Have you thought about clostridium difficile colitis?

 

http://www.cdiffsupport.com/aboutcdiff.html

 

Susan

[casey]

Hi Sue,

I am soo sorry to hear about your son. My son too has a connective tissue disease.

The best i can tell you is to find a experienced AP doc ASAP. When we first were diagnosed i came to this site and found one. These diseases are more complex for some meaning some or many of us have more than one thing going on ,such as bacteria (co-infections) needing a combo abx ,but also allergies to foods (gluten etc) can play a part , viruses etc. For us , we need to address all issues where others do fine never altering diet and can go on minocin alone. You have already started with diet which may be the first step. Supps IMO , would not be my first concern. For example ,some supps can be feeding the bacteria and with no AP may allow them to proliferate but this is just my opinion.

I did order the humaworm for the whole family including the dog but it is in the freezer “lookin” at us. I have researched humaworm and yes, it looks like it could help but again, because we are sensitive to many things, i have not jumped into taking it yet. I have researched on the humaworm curezone site and many have done well but again others have had problems . Each person is different so  i am cautious about anything and everything.

Again, i know how you are feeling , i have been there , still am there and always will be there when it involves a child. Again, find a AP doc, work on the diet in the meantime but i would be cautious doing many things at one time. Supps can be added later depending on what is needed.

Also, is your son consuming dairy? Dairy can cause many digestive probs as well in which diahreia is one.

I truly wish you the best with this and i know once you find a AP doc , your son will be on the right track. For us ,there are steps forward and back ,even after almost 2 yrs on AP, diet change, you name it. My AP doc has had some patients that have taken 5 yrs to turn a corner but they have so never give up hope.

You are on the right track just by getting here but to me , an AP doc would be first on the list if i were you. The rest can follow.

Hang in there!

Casey

 

 

[JBJBJB]

[user=86]Susan Lyme/RA[/user] wrote:

Luv

Have you thought about clostridium difficile colitis?
 
http://www.cdiffsupport.com/aboutcdiff.html

Sue,

I agree with Susan, have that checked out because colitis can also cause a lot of rheumatoid disease. You may take him to the doctor on Monday to run some tests. If this goes untreated, the inflammation could spread all over his little body, cause more damage. 

I had clostridium difficile colitis triggered by antibiotics, and after I got better, I have not recovered. My rheumy said if the rheumatoid problems was triggered by C.Diff, there was higher chance to recover. 10% could never recover. I guess I perhaps I am that 10%. I am still counting on that 80% …… it's been 2 years.

Just for the prevention, C.Dff (short name for clostridium difficile colitis) is extremely contagious. Make sure he washes his hands thoroughly. The spore could spread every where. This is the biggest problem in hospital these days.

Hang in there, Sue.

JB

 

[luvmywonderfulkids]

THanks Casey,

Right now Ryan is not eating any sugar, no dairy, no wheat or gluten. I think I might have found part of the problem. Because we took away sugar and soda I bought Xylitol to make kool aid with — I bought the unsweented kool aid and added the xylitol myself. I did research on it last night and one of the side effects is — you guessed it, diaharrea! So, we are going to the store to buy stevia so at least he can have something to drink besides water.

Sue

[luvmywonderfulkids]

He has always had problems with diaharrea. When he was first diagnosed with possible RA, we went to the pedi gastro as well but he did not think his symptoms (not being able to straighten his fingers), etc were caused from this so I have not followed up yet but certainly plan to as soon as we see the pedi rheumatologist. I went into a tail spin when the 2nd pediatrician said it was scleroderma and have been doing nothing but researching this dis-ease.

Are you on the antibiotic protocal for your RA?

Sue

[luvmywonderfulkids]

Kim,

I try to read every label and make his food for him but I want to thank you for the website and I will research there to make sure he is not getting any gluten.

Sue

[JBJBJB]

you may want to google

Reactive arthritis induced by Clostridium difficile

JB

[Susan LymeRA]

Sue,

I did a quick search for you on the net regarding chronic diarrhea.  I'm sure some of this will be redundant for you but you might find some insight also.

First, conventional wisdom:

http://www.webmd.com/digestive-disorders/digestive-diseases-diarrhea

Next, natural remedies:

http://www.natural-homeremedies.com/homeremedies_diarrhea.htm

Susan

 

[luvmywonderfulkids]

I truly can not believe how wonderful everyone is on this site. Thank you from the bottom of my heart. — Sue

[A Friend]

Sue,

Susan and I were on the same course… finding you more reading material.  I predict you will be our future “Expert on IBS.”    😯

You haven't mentioned — nor have we asked, I believe — if your son has a history of childhood infections and has been given a lot of antibiotics.  Has he?  This can have created unseen problems of fungal overgrowth in the body, and we can be ignorant that it is even there… for a time, anyway. 

Also, from what I've read, there are mycotoxins that can have gotten a stronghold.  There are a number of foods that this can be related to, as well. 

This is an article in my files that may be very helpful.  Also, some of the controlled studies done are cited in this, where even those with Crohn's and IBS were brought into remission (and Crohn's is also a difficult, usually longterm diagnosis).

Hope something in this article [link is below] will be helpful to you and your son.  Regardless, you should know a lot more on this subject after reading it. 

AF

http://www.healthe-livingnews.com/articles/fungal_etiology_of_inflammatory_bowel_disease.html
 
The Fungal Etiology of Inflammatory Bowel Disease
[font=”Times New Roman, Times, serif”]By David A. Holland, M.D.[/font]

[luvmywonderfulkids]

Would the symptoms he has that led to the scleroderma diagnosis by his pediatrician be the same? Swollen joints, patches on his skin, pain in his feet, he can't bend his wrist or straighten his arm out completely.

If it is crohn's or ibs or celiac or anything like it, then the AP protocol would be bad for him???

The more I learn, the more confused I become — hopefully soon it will all make sense. You guys are amazing on this site you seem to know so much!!

I don't think he has been on a LOT of antibiotics. 2x when he had diaharrea real bad they put him on flagel (sp?) because he had parasites but really he has been incredibly healthy as far as the flu and colds. Only his stomach has been the major cause over his life. He had a few ear infections when he was little but not inordinate. We do feel that his joints and swelling started appearing more progressively when he had the parasite giardia lamblia as we have been searching through his pictures to see when the hands started curling

[A Friend]

Sue,

I agree, it is confusing.  But, in order to make our best decisions, I've always thought I needed to have as many pieces of the puzzle (options) as possible. 

About your worry about abx being bad for him, a thought on this subject is that when we know we are deficient in probiotics, we can add them, but taken away from the abx.  If we have parasites and/or fungus overgrowth, we can address that, too.  Too many physicians don't even tell patients about yeast and probiotics; some say there is nothing to it.  Beware of these.  

Something I got from the last article was that in situations like this, one needs not to rule out that there could be (probably are) fungal toxins, parasites, and others organisms.  AP, even though an  abx, is often needed to help decrease the population of other organisms that also grow in the acidic environment created when our immune system is depressed, which enables many organisms to thrive/multiply because we've lost the ability to zap them as we could when our immune system was healthy.  This overgrown population needs to be decreased, and let the immune system get healthy again. 

It seems it might be helpful to have a health professional trained in naturopathic/complementary medicine to give us guidance.  Most doctors I saw before AP didn't seem to even acknowledge that taking abx without probiotics was a problem.  That's what got many of us into real problems until we learned about this need. 

Please try not to worry.  I believe you are on the road to getting the help you need.  Many are working to help you find answers.  And the number of good physicians now recognizing these problems, should be encouraging to us all.   

AF

[luvmywonderfulkids]

So, AP therapy is OK with the use of probiotics as well. That is, if he has multiple conditions that are causing the problems we use both?

[Susan LymeRA]

Sue,

We are giving you ideas and information.  But it will take a saavy doctor to determine what is going on with your boy.  Please find a good one.

I take my probiotics first thing in the morning about 20 to 30 mins before I eat.  That way the digestive acids will not harm them.  I take antibiotic well after I eat.

Antibiotics are only one thing that will upset the flora in our gut.  Stress, bad diet are the other two big causes.

It does sound like your son may have been born with something not working quite right.  Read the link I gave you for conventional approach to diarrhea.  It talks about 3 different conditions that could be causing your son to draw too much fluid into his gut which results in diarrhea.

You betcha this is all connected.  That is one mistake mainstream medicine makes.  They see every symptom as totally separate and not connected.  The body is not compartmentalized that way.  It all works together.

Susan

 

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