Re: Help - just diagnosed with severe fructose malabsorption-yeast

[Guest guest]

>So, it is a busy summer. His muscle biopsy is July 15th and I am frightened

of this because it is a surgery and requires anesthesia.

Anyone else had this done? We are having it done because DNA did not show

anything, but Geneticist is still thinking possible mito issues. Neurologist

also suggests it. I guess mito issues can be hard to diagnose.

Hi Wanda

Keep with your Mom's intuition on this. The vast majority of ASD kids have

mitochondrial issues. Your child is showing all the symptoms (low muscle

tone, deminished reflexes, regression, slow growth etc.) So, do you

actually need a test - which you're frightened - of to confirm it?

Maybe do a cost-benefit analysis - particularly ask " what is the benefit of

doing this test? " And is this benefit worth the cost of stress, pain,

anesthesia etc? Especially given you already know the result.

Many of us on this forum just look at the symptoms and then decide what's

going on (some with medical guidance and some without) and treat

accordingly. Refer to Dana's site re the " mito cocktail "

You'll know what's right for you, so either way, go for it.

Good luck

:-)

[Guest guest]

> Muscle biopsy for Mitochondrial issues (low muscle tone, deminished reflexes,

regression, slow growth etc.)

My son had mitochondrial dysfunction, his body did not properly absorb fats. I

discovered this by observation of his symptoms, and I corrected it with OTC

supplements. I wrote about it here

http://www.danasview.net/mar05.htm

Dana

[Guest guest]

>

> >So, it is a busy summer. His muscle biopsy is July 15th and I am frightened

> of this because it is a surgery and requires anesthesia.

> Anyone else had this done? We are having it done because DNA did not show

> anything, but Geneticist is still thinking possible mito issues. Neurologist

> also suggests it. I guess mito issues can be hard to diagnose.

>

> Hi Wanda

>

> Keep with your Mom's intuition on this. The vast majority of ASD kids have

> mitochondrial issues. Your child is showing all the symptoms (low muscle

> tone, deminished reflexes, regression, slow growth etc.) So, do you

> actually need a test - which you're frightened - of to confirm it?

>

> Maybe do a cost-benefit analysis - particularly ask " what is the benefit of

> doing this test? " And is this benefit worth the cost of stress, pain,

> anesthesia etc? Especially given you already know the result.

>

> Many of us on this forum just look at the symptoms and then decide what's

> going on (some with medical guidance and some without) and treat

> accordingly. Refer to Dana's site re the " mito cocktail "

>

> You'll know what's right for you, so either way, go for it.

>

> Good luck

>

> :-)

>

>

>

>

>

>

[Guest guest]

Hi,

Just my two cents. My son has all the issues that your son has, and that others

have. We were diagnosed by a Physical Therapist, in a hospital (a very good one)

with hypotonia, among other things. We didn't need, nor were not offered a

muscle biopsy because it was so apparent. My son was offered a whistle to blow

and didn't have the lung strength to do it. They put a kleenex in front of him

and he couldn't make it move. No need for more tests!

I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

When our kids go through anesthesia, they can wake up extremely aggitated. And

you cannot reason with them. It has happened to us and many other kids ont he

spectrum at our hospital.The gas relaxes both exhititory and inhibitory neurons.

If you do have the test, be adament that you will be there before your son wakes

us, and that you will help ease him into the gas mask. Our hospital let me hold

my kids while they went under.

I have to agree with Dana and others who have all walked this path before us.

I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

If your husband says ok, try using milk thistle after the gas to help clear out

the liver.

We will pray for your family whatever you decide,

Susi

[Guest guest]

>

> Hi,

>

> Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

>

> I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

>

> When our kids go through anesthesia, they can wake up extremely aggitated. And

you cannot reason with them. It has happened to us and many other kids ont he

spectrum at our hospital.The gas relaxes both exhititory and inhibitory neurons.

If you do have the test, be adament that you will be there before your son wakes

us, and that you will help ease him into the gas mask. Our hospital let me hold

my kids while they went under.

>

> I have to agree with Dana and others who have all walked this path before us.

I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

>

> If your husband says ok, try using milk thistle after the gas to help clear

out the liver.

>

> We will pray for your family whatever you decide,

> Susi

>

Susi,

When you talk about the gas do you mean nitrous?

Just wondering because he had this before.

I also remember something about that if you have a b12 deficiency you shouldn't

have nitrous. Is that true?

Thanks, Wanda

[Guest guest]

>

> Hi,

>

> Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

>

> I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

>

> When our kids go through anesthesia, they can wake up extremely aggitated. And

you cannot reason with them. It has happened to us and many other kids ont he

spectrum at our hospital.The gas relaxes both exhititory and inhibitory neurons.

If you do have the test, be adament that you will be there before your son wakes

us, and that you will help ease him into the gas mask. Our hospital let me hold

my kids while they went under.

>

> I have to agree with Dana and others who have all walked this path before us.

I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

>

> If your husband says ok, try using milk thistle after the gas to help clear

out the liver.

>

> We will pray for your family whatever you decide,

> Susi

>

Susi, also about the milk thistle - how much would I give and what brand?

Thanks again, Wanda

[Guest guest]

>

> Hi,

>

> Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

>

> I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

>

> When our kids go through anesthesia, they can wake up extremely aggitated. And

you cannot reason with them. It has happened to us and many other kids ont he

spectrum at our hospital.The gas relaxes both exhititory and inhibitory neurons.

If you do have the test, be adament that you will be there before your son wakes

us, and that you will help ease him into the gas mask. Our hospital let me hold

my kids while they went under.

>

> I have to agree with Dana and others who have all walked this path before us.

I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

>

> If your husband says ok, try using milk thistle after the gas to help clear

out the liver.

>

> We will pray for your family whatever you decide,

> Susi

>

Susi,

I hope my doctor will let me hold my son while he goes under. We didn't get to

when he had his colonoscopy/endoscopy (they used nitrous). The muscle biopsy

should be a shorter procedure than a colonoscopy/endoscopy with multiple

biopsies. Or would it be just as long or longer? I am going to call tomorrow and

find out.

Sorry to be a bug- but the biopsy is next week and I just want more answers.

Thanks again, Wanda

[Guest guest]

Hi,

Anytime my son has gone under, they have used the gas mask first, then put in an

iv line. After I spoke with his DAN! they said to give a few doses of milk

thistle after to clear out all the sedatives/gas. Wish I could help more with

that answer.We no longer will use nitrous at the dentist because of the

lingering side effects. My son is very sensitive.

Hope this helps,

Susi

> >

> > Hi,

> >

> > Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

> >

> > I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

> >

> > When our kids go through anesthesia, they can wake up extremely aggitated.

And you cannot reason with them. It has happened to us and many other kids ont

he spectrum at our hospital.The gas relaxes both exhititory and inhibitory

neurons. If you do have the test, be adament that you will be there before your

son wakes us, and that you will help ease him into the gas mask. Our hospital

let me hold my kids while they went under.

> >

> > I have to agree with Dana and others who have all walked this path before

us. I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

> >

> > If your husband says ok, try using milk thistle after the gas to help clear

out the liver.

> >

> > We will pray for your family whatever you decide,

> > Susi

> >

> Susi,

> When you talk about the gas do you mean nitrous?

> Just wondering because he had this before.

> I also remember something about that if you have a b12 deficiency you

shouldn't have nitrous. Is that true?

> Thanks, Wanda

>

[Guest guest]

We went to Whole Foods and bought a reasonably priced brand that had the least

amount of additives.I think it was 100mg.Susi

> >

> > Hi,

> >

> > Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

> >

> > I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

> >

> > When our kids go through anesthesia, they can wake up extremely aggitated.

And you cannot reason with them. It has happened to us and many other kids ont

he spectrum at our hospital.The gas relaxes both exhititory and inhibitory

neurons. If you do have the test, be adament that you will be there before your

son wakes us, and that you will help ease him into the gas mask. Our hospital

let me hold my kids while they went under.

> >

> > I have to agree with Dana and others who have all walked this path before

us. I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

> >

> > If your husband says ok, try using milk thistle after the gas to help clear

out the liver.

> >

> > We will pray for your family whatever you decide,

> > Susi

> >

> Susi, also about the milk thistle - how much would I give and what brand?

>

> Thanks again, Wanda

>

[Guest guest]

Wanda,

If you are doing this in a children's hospital then they should be accomodating.

If not, you simply say that your son has autism and that you need to be with him

because you speak to him in a way that he understands and trusts.My son wouldn't

go with anyone but me, and I told them that either I go, or he leaves.Then

again, I'm really mean to doctors

If the staff is familiar with special needs, and you prove to them you are

strong enough to handle watching him go out, I see no reason why they would have

a problem.Also, be sure you are there when he wakes up. It sometimes gets really

bad for our kids when they are awake. They go down scared and wake up with that

last memory.

Hope this helps,

Susi

[Guest guest]

> When you talk about the gas do you mean nitrous?

> Just wondering because he had this before.

> I also remember something about that if you have a b12 deficiency you

shouldn't have nitrous. Is that true?

The " gas " will deplete B12, and most autistic kids already are very depleted in

B12. So if you use the gas, be sure to be giving B12.

Dana

[Guest guest]

>

> Wanda,

>

> If you are doing this in a children's hospital then they should be

accomodating. If not, you simply say that your son has autism and that you need

to be with him because you speak to him in a way that he understands and

trusts.My son wouldn't go with anyone but me, and I told them that either I go,

or he leaves.Then again, I'm really mean to doctors

>

> If the staff is familiar with special needs, and you prove to them you are

strong enough to handle watching him go out, I see no reason why they would have

a problem.Also, be sure you are there when he wakes up. It sometimes gets really

bad for our kids when they are awake. They go down scared and wake up with that

last memory.

>

> Hope this helps,

> Susi

>

Hi Susi,

the muscle biopsy is tomorrow. They are supposed to call about the time and the

anesthesiologist is supposed to call- at least I think he is supposed to call. I

will get some milk thistle tonight. Should I give it to him before and after the

procedure or just after. I have Methyl B-12 drops here. Will those help? Thanks,

Wanda

[Guest guest]

> > When you talk about the gas do you mean nitrous?

> > Just wondering because he had this before.

> > I also remember something about that if you have a b12 deficiency you

shouldn't have nitrous. Is that true?

>

>

> The " gas " will deplete B12, and most autistic kids already are very depleted

in B12. So if you use the gas, be sure to be giving B12.

>

> Dana

>

Hi Dana,

I have Methl B12 drops here. Will those help? I don't have the shots right now

(I am going to try to get some ordered by a naturopathic doctor on July 28th). I

guess I will give him the B12 drops I have when He gets home. I wish I gave them

to him earlier this morning because they may keep him up. But, I will give them

anyway around 2:30. Thanks so much for your help. Wanda

[Guest guest]

> > >

> > > Hi,

> > >

> > > Just my two cents. My son has all the issues that your son has, and that

others have. We were diagnosed by a Physical Therapist, in a hospital (a very

good one) with hypotonia, among other things. We didn't need, nor were not

offered a muscle biopsy because it was so apparent. My son was offered a whistle

to blow and didn't have the lung strength to do it. They put a kleenex in front

of him and he couldn't make it move. No need for more tests!

> > >

> > > I would be a little wary of any doctor that wanted to put a child on the

spectrum through anesthesia to prove something, where there are signs already.

> > >

> > > When our kids go through anesthesia, they can wake up extremely aggitated.

And you cannot reason with them. It has happened to us and many other kids ont

he spectrum at our hospital.The gas relaxes both exhititory and inhibitory

neurons. If you do have the test, be adament that you will be there before your

son wakes us, and that you will help ease him into the gas mask. Our hospital

let me hold my kids while they went under.

> > >

> > > I have to agree with Dana and others who have all walked this path before

us. I'm sorry your husband doesn't believe that all this helps, and does not be

quantified.Would he read posts from the board? I have learned so much. If you

have a DAN! would he listen to him? They truly are great doctors who work on

anecdotal evidence reported by moms every day.

> > >

> > > If your husband says ok, try using milk thistle after the gas to help

clear out the liver.

> > >

> > > We will pray for your family whatever you decide,

> > > Susi

> > >

> > Susi, also about the milk thistle - how much would I give and what brand?

> >

> > Thanks again, Wanda

> >

>

Susi,

Thanks for your prayers. They are much appreciated! Wanda

[Guest guest]

> Hi Dana,

> I have Methl B12 drops here. Will those help?

Yes.

Dana

[Guest guest]

> > Hi Dana,

> > I have Methl B12 drops here. Will those help?

>

>

> Yes.

>

> Dana

>

Hi Dana, thanks for such a quick reply. I also just found the milk thistle I

have here and it is from Kirkman's so it is a good brand. But,it expired 03/09-

should it still be okay. Isn't there a certain amount of time that vitamins are

still good after the expiration date? I don't think the bottle was even opened

more than once. I just don't have much money to spend on extra supplements (just

bought alot of the things for mito cocktail) - but if I have to I will get new

milk thistle.

Thanks, Wanda

[Guest guest]

> Hi Dana, thanks for such a quick reply. I also just found the milk thistle I

have here and it is from Kirkman's so it is a good brand. But,it expired 03/09-

should it still be okay.

It may not be as potent as it was before the expiration date.

Dana

[Guest guest]

> >

> > Wanda,

> >

> > If you are doing this in a children's hospital then they should be

accomodating. If not, you simply say that your son has autism and that you need

to be with him because you speak to him in a way that he understands and

trusts.My son wouldn't go with anyone but me, and I told them that either I go,

or he leaves.Then again, I'm really mean to doctors

> >

> > If the staff is familiar with special needs, and you prove to them you are

strong enough to handle watching him go out, I see no reason why they would have

a problem.Also, be sure you are there when he wakes up. It sometimes gets really

bad for our kids when they are awake. They go down scared and wake up with that

last memory.

> >

> > Hope this helps,

> > Susi

> >

> Hi Susi,

> the muscle biopsy is tomorrow. They are supposed to call about the time and

the anesthesiologist is supposed to call- at least I think he is supposed to

call. I will get some milk thistle tonight. Should I give it to him before and

after the procedure or just after. I have Methyl B-12 drops here. Will those

help? Thanks, Wanda

>

HI Susi, My Son went through the muscle biopsy just fine. He came out of the

anesthesia really fast. He is in pain and walks like he needs a little crutch.

We spent most of the afternoon lounging with him in our bed while he ate snacks.

He was pretty funny because I was eating hummus with chips and he decided he

liked hummus and started eating it to. He was so perfect the way he dipped his

chips (except he is a tripple dipper at times). I gave him the milk thistle. He

had a hard time falling asleep because of the pain. Unfortunately all the pain

meds, liquid children's Motrin and liquid Tylenol are all pretty bad on his gut

and I don't like using Tylenol as it is. I wish I had been able to get them

compounded with out all the junk. Now, we wait for 2 months to get the results

and while we wait we are going to start with part of the mito cocktail- the

L-carnitine, Coq10, magnesium that our holistic doctor prescribed. He also

prescribed D-ribose (which is a type of sugar that makes ATP?) but I don't know

if he can have it because of his fructose malabsorption and gut bugs: yeast and

psuedomonas came back on stool test today. Psuedomonas aeruginosa came back at

4+. I am scared about this bacteria because everything I read about it sounds

really horrible. Anyone have experience with this?

Thanks for your thoughts and prayers,

Wanda