Update on n / Allergies after Ctoma

[Guest guest]

Hello -

We are still trying to resolve n's medical issues. He still has

the rash, but it is less severe, immune problems and food

sensitivities. We are currently seeing a holistic general medical

doctor, who was also a pediatrician at the local University. He thinks

that n has developed a Dysbiosis, which is an overgrowth of

bacteria in his small intestines. During his CToma removal surgery and

his implant surgery he was on IV antibiotics and had antibiotics for 10

days after each surgery, which upset the flora in his

stomach/intestines. He had staph in the sores on his skin so they

prescribed more antibiotics and steroids which made the overgrowth of

bacteria worse. The extensive blood & urine tests show that his body is

depleted in several nutrients and amino acids, due to the overgrowth and

causing " leaky gut syndrome " allowing toxins through in his system,

causing immune reactions and food allergies/sensitivities. n has

had IgG and IgE blood tests for food sensitivities and also skin patch

testing for allergies. The doctor has him on 17 pills of supplements

and Nystatin (medication) a day and we will start 2 more supplements

soon. He is on a very restricted diet of fruits, most vegetables and

meat. No sugars as this feeds the bacteria. This is our 10th doctor

and we are praying that this regime will help. I am thankful he is off

all steroids finally. I canceled his surgery to remove his implant that

was scheduled for July 9, in hopes that the diet and supplements will be

the answer.

After n's Ctoma surgery and implant I thought we would be done

with medical issues, but one thing has lead to another. Little did I

know the effects of the surgery on his body. Everyone heals

differently. Through talking to several doctors & allergists this year,

I would caution others to do your research, look up information on

medications, avoid unnecessary chemicals (soaps, shampoos) near

incisions, avoid latex and other potential risks to the body. n

had no known contact or food allergies /sensitivities before the

surgery, but since his immune and other systems have been affected.

-Thanks for the info. I am sorry you had to go through that. I

will contact you directly for more information.

Thank you everyone for your concern!

Judy

nujerseygirl wrote:

>

>

> Hi Judy,

> Hope they have solved n's infection. If not, perhaps this may help.

> I had a Staph infection for over two years that destroyed the

> cartilage at the tip of my nose. During that time I saw 16 (yes 16!)

> specialists including two Infectious Disease who ruled out all sorts

> of diseases including cancer and many autoimmune diseases such as

> Wegener's and Polycondritis. I was given antibiotic after antibiotic

> and many fungal medications. Each time the infection would return. It

> got to the point that I was weak and exhausted and was rushed to the

> hospital.

>

> Thank goodness a doctor there referred me to a top notch

> Allergy/Immune Disorders doctor who went over the records and

> prescribed three antibiotics at once,including one topical. Within

> one week the infection was gone and I started feeling somewhat like

> myself again.

>

> This doctor told me I had never been on the correct protocol for a

> recurrent Staph infection. I don't know if I am allowed to post names

> of medications on this site. Someone let me know or should I send

> them by direct e-mail. Don't know if what worked for me would work

> for n, but at least you can ask the doctors about this.

>

> This is something that has to be cleared up as it can do physical harm

>

> beside the rashes. I have had to have my nose re-constructed with ear

> cartilage. This was a very extreme case and I don't mean to scare you.

> I hope this info will be of some help in treating your son for his

> staph infection without removing the implant.

>

> Has anyone else had a problem with Staph infections and C-toma?

>

> Best,

>

>

> Re: Fellow Sufferers...Doctor Question?

>

> How is n????????

>

>

> >

> > DEFINITELY get a second opinion, or even a 3rd and don't be afraid

> to do

> > so! As we have personally come to know, even the top doctors can

> be

> > wrong and unable to diagnosis cases correctly. They do their best

> with

> > the knowledge they have but we need to be our own advocates!!

> > I have not posted in awhile. I had posted in January and March

> > seeking information regarding possible titanium allergy. My son

> had a

> > titanium implant in Nov. 2006 and developed on ongoing itchy rash

> over

> > his body that gets staph infection, that he has had for over 16

> months,

> > despite numerous topical and oral antibiotics and topical and oral

> > steroids. We have been to 5 dermatologist, 1 allergist, 1

> infectious

> > disease specialist, 2 neurotologist/otologist and we are now seeing

> a

> > holistic medical practitioner. Some of these doctors are tops in

> their

> > field at Duke University and the other University close to us. He

> has

> > had 4 blood tests, 2 biopsies, 3 patch tests, and a lymphocyte

> > transformation test. Some doctors think the implant may be causing

> the

> > rash and suggested removing it and other's don't. Last week our

> whole

> > family was treated for scabies/skin mites, as my other son and I

> had

> > developed a rash that may or may not be the same thing. The doctor

> we

> > are currently seeing just ran more blood, urine and stool tests and

> > thinks he may have an overgrowth of bacteria or parasites in his

> small

> > bowel from the antibiotics from his ear surgery. We are trying

> this

> > treatment before we have his implant removed.

> > Thank you to everyone who has sent suggestions and tried to help

> n

> > since my original post!!!

> > Judy

> >

> >

> >

>

>