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Hi Cathy,

Does he eat yogurt? Definitely see if you can get acidophilus into him -

Culturelle is a strong lactobacillus (if you are interested I can e-mail you

where to get it from).

Also, I've read for infants with oral thrush, people have used " Gentian

Violet " in the mouth - here's a link I found for it's usage:

www.erols.com/cindryn/6.htm

I'm sorry I can't tell you more about it since I've never had to use it, but

I've heard about it being used a lot for oral thrush in infants. A local LLL

leader would be able to help you with how to use it probably, or other ideas.

If you need one I can help you find one.

I feel for you. My son is 7, autistic & non verbal. When anything happens

it's so difficult. I hope this has helped somewhat. Please e-mail whenever

you want.

Blessings,

Michele

(, ASD, 7yrs, Logan, 3.5 yrs)

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I don't know how to tactfully say this, since I am not a doctor, just a

mom...but I see a problem or two with the treatment your son is on. If it

is true that children with autism often have problems with opiates (just a

theory, but one that I personally believe) then I wouldn't use codeine. If

they have problems with sulfation (less theory, more proven, also something

I believe) then I wouldn't use Tylenol.

As for what he has in his mouth, I have no idea what it is but I would one

or more alternative treatments (in conjunction with your doctor) on the

won't hurt/might help theory. If it is viral or fungal, there are

anti-virals (lauric acid) and anti-fungals (caprylic acid) in coconut fat

and coconut milk. You could make coconut ice cream, or some other dish that

uses lots, but get a brand that is sulphite-free (like Thai Kitchen or

Trader Joe's.) Monolaurin, Primal Defense and IP6, echinecea with

goldenseal: all of these are in the arsenal I use for my family, and I would

be using all of them for my son if he were sick like yours is. I once had

mononucleosis that hurt so bad when I swallowed, I prefered spitting in the

toilet, so I empathize with your son.

Someone suggested you use yogurt..umm, this is the GFCF list, so the only

yogurt you might try would be a gfcf soy one. There are milk-free

acidophilus brands at the local health food store and on-line.

Poor guy, hope something works, and soon.

Lorilyn

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I also used gentian violet, you can get it at any pharmacy without a

prescription. It tasted awful and stains like you would not believe,

when I used it on myself I immediately spit into the sink and it

stained it for a long time, so take care. But it gave me relief

instantly. Good luck,

> I am having such a terrible time with my son 7 yrs. He has what I

think is

> thrush in the mouth small patch on his tip of tough. He is

nonverbal and so

> miserable. The dr. who said it might not be that but just an

irritated patch

> put him on nystatin oral suspension. There is a lot of junk in

this but I

> decided to use it because of the severe pain he is in. he is

drooling rivers

> of salvia that he wont swallow. The patch opened up and bled which

made him

> more crazy. Then the dr. prescribed codeine with Tylenol. This

had an

> adverse affect on him and kept him up until 10 PM at night instead

of his

> usual 7:30 to bed. He is banging his head and attacking us every

time he

> feels pain. i don't know what to do,. Please help. Cathy

>

>

>

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Cathy maybe you could ask your dr. to call a compounding pharmacy to get pure

form of nystatin our Dr. orders thru pathway and it is prepared in a stevia

base instead of sugar and other additives. i have pathways 800 # is you want

is....hang in there! Sharon

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  • 2 weeks later...
  • 3 years later...

Is there anyone in the uk who's child has rss? I am finding it hard

at the moment, the doctors can't decide if my daughter has rss or

not. I was told 6years ago she had it but now they are not sure.

is anyone else going through the same thing?

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Hi

I am from Hertfordshire, my 9 month old daugher was diagnosed with RSS 3 months

ago, please feel free to e mail me if you have any questions or need someone to

chat to.

Brigitte

Please help

Is there anyone in the uk who's child has rss? I am finding it hard

at the moment, the doctors can't decide if my daughter has rss or

not. I was told 6years ago she had it but now they are not sure.

is anyone else going through the same thing?

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