I am in desperate need of help and will do anything to stop this agony...

[Guest guest]

Here's my daughter's history. I began biomedical treatments with her starting

in July of 2008 when she was five years old. At first we just did GFCF and then

we built on that. In January 2009 we started the SCD diet and antifungal

medication and probiotics. By the middle of March she was completely

toilet-trained and instead of stripping her clothes off all day, began keeping

them on. This was shortly after her sixth birthday. This is the first real

hope I ever had for her as she had never learned how to do ANYTHING and was very

hyperactive. Well, I stayed with her DAN! for another year and I was getting

impatient because she still had no speech or playskills and I was dying to

chelate her. I decided to do AC chelation in the spring of 2010. During this

time I had added some non-SCD foods back into her diet thinking she was doing

fine on them but looking back I don't think she was. She began stripping her

clothes off and screaming and refusing to wear clothes AT ALL. I had to put her

back on antifungals for a month and the problem temporarily got better. I went

ahead and started chelation with her figuring eventually these problems would

even themselves out if I started pulling metals. Well, after a summer of about

ten rounds she was a mess. She had completely lost her ability to toilet

herself (I did five rounds of DMSA and then added in ALA I give her 5 mg DMSA

and 3 mg ALA when she is on round) would not wear clothes AT ALL even outside

the house, was constantly itching herself down below from all the yeast (I was

using OTC yeast killers but they did nothing). I got her a script for Diflucan

in August and after a two week die-off period, she still didn't want her clothes

on in the house, but she would wear them to go out. HEr belly lost it's bloat

and she quit being so insanely attracted to water like she always is. I began

to think that yes, chelation was going to help after all, so I decided to start

up again and space out the rounds. Well, I started the first week of September

and got eight more rounds in by the middle of November. We still had problems

with clothing and she was itching her nether regions so I figured the Diflucan

was no longer controlling the yeast. I also found pinworms in her stool at the

end of October (after about round 16) and treated her for those with Vermox.

Around the time I discovered the pinworms, she also began getting a strange rash

on her bottom that has not fully left. It is like her bottom is redder than the

rest of her body and wearing clothing made it worse. I switched detergents and

that seemed to stop the problem temporarily, but it has since come back since

completing round 18 and this time it is worse. It is like an itchy eczema rash

that is all over her body. She is on ketonazole to treat the yeast and she has

been on it for two weeks and the rash always begins to heal and then she wears

clothing or gets in the bathtub and it comes raging back. I even tried washing

her clothes in nothing over and over again yet she will still occasionally rash

up after she puts them on.

Anyways, I have pulled her from school because she is just too miserable to

attend and I am going to homeschool her. Wearing clothing for more than an hour

or two is sheer agony for her, she strips her clothes and screams and has tears

pouring down when we come home from going out somewhere, even if the rash has

not returned. Her belly is also always slightly bloated even with antifungals

and lots of probiotics.

She also has a strange compulsion. Even though she is potty-trained, she will

urinate in small amounts on cloth. She used to do it on the stairs all the time

and now she has taken to doing it on the furniture. If she has clothes on she

runs to the toilet a million times a day. I have checked her for diabetes,

UTIs, etc. THIS problem has gone on off and on since summer of 2009. She

doesn't pee on hardwood when she does this ONLY cloth, so I am thinking it is

some kind of OCD compulsion. She also has many OCD characteristics like opening

cabinets, turning on lights, etc. The peeing on things DID temporarily stop in

April with a script for oral Amphotericin, but within a week that compulsion

returned. This is confusing to me as I cannot tell if the peeing is OCD or if

it is a physical issue relating to the balance of yeast and bacteria. I have

had her on straight cranberry juice for three days now three times a day but I

see no sign of the problem abating. The rash starts to heal and keeps returning

also. I just don't even know how to begin to restore her to health and

happiness and I am so sorry I ever tried chelating her. I just made a bad

situation so much worse. Everyone told me it would be hard at first and to give

it six months but it has taken away everything she DID have. I feel so selfish

for wanting her to do more than be happy and use a toilet and keep clothes on at

all times now. I had no idea this would make her suffer so much physically.

She literally cannot function because she refuses to wear clothing and is

imprisoned by hyperactivity and compulsions all day.

I should add, her pooping on the toilet HAS returned, so she's gotten that back.

I have no clue what to do about the rest. I am not chelating at the moment. I

did see her do some cool things like point and start making faces at herself in

the mirror in between rounds, but what is the point in doing this if it is so

physically debilitating to her that she cannot even wear clothes and do ABA

therapy for two hours at almost eight?