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Guest guest

,

I got your post about scoping to know it is celiac for sure because of

other issues. While there were quirks with the panels they were negative

and the TTGs were fine in both kids. GI still thinks it is celiac in

daughter and something more in son. I believe she is right and I will

scope but not until we get the genetic marker test back. My reason is I

want as much info. as possible so we only scope once and I want a little

time between anesthesia for son who recently had a bad reaction. My

question is, during the waiting period should we also get the stool

screening malabsorption studies? I'll run this by the ped neuro dev

specialist on Tuesday as well.

Thanks!

Liz

claudia.morris wrote:

>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>>This message is for parents that have had success with their

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>child's

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>peciatrician ordering blood test, celiac disease test,

>>>>>>>

>>>>>>>

>carnitine

>

>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>tests,

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>etc.

>>>>>>>

>>>>>>>Basically our story is my son's pediatrician wouldn't think

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>outside the

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>box to get tests ordered or look into what is covered by our

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>insurance

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>company. She is a wonderful pediatrician, but just doesn't

>>>>>>>

>>>>>>>

>have

>

>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>the

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>knowledge and is not willing to learn about apraxia. We

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>currently

>>>

>>>

>>>

>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>have

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>Blue Cross Blue Shield.

>>>>>>>

>>>>>>>My question is how did your pediatrican go about getting tests

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>ordered

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>and covered by insurance. Were you involved or did the

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>pediatrician

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>just know how to get around the insurance companies?

>>>>>>>

>>>>>>>Anything else you can add would greatly be appreciated because

>>>>>>>

>>>>>>>

>I

>

>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>am

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>about to interview a pediatrican that I believe would do

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>research

>>>

>>>

>>>

>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>to

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>learn more about apraxia.

>>>>>>>

>>>>>>>Thanks in advance,

>>>>>>>Tina

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

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Guest guest

I'm probably going to botch this explanation, so anyone out there

considering enzymes should read up on them for a more complete,

accurate summary of the workings of digestive enzymes.

My understanding is that the enzymes work on the food in the stomach

so that it is more fully broken up before reaching the GI tract,

which in turn prevents unhealthy amounts of semi-digested food from

leaking out of a permeable gut into the whole system. Foods that

might not normally be tolerated can now be eaten without irritating

the gut. Also, they seem to help heal the leaky gut as well, maybe

by reducing inflammation so that it can heal itself. And when No-

Fenol is taken at a different time than the foods it works on, it

becomes a yeast-eater, and we all know that excessive yeast can lead

to gut issues.

My quandry these days is that I think his gut has been healed by the

enzymes in combination with the fish oil, and he might not need the

enzymes anyone. However, I'm afraid to stop them for fear of the

potential negative repercussions. I keep waiting to be " done " adding

supplements before I mess with the enzymes, but I still need to add

carnitine, 2 EFA, 1 EPA, and 1 d-gamma E before I'm ready to

experiment. And once we stop the enzymes, I'm going to have to watch

his stool and his diet carefully, because I'm positive this will

unmask some of his food intolerances which are " hidden " by the

enzymes.

We don't have a dx of malabsorption. The enzymes are OTC, and I

started them on my own. (They were suggested by someone on this

board ages ago.) The reducing substances stool test was negative,

but I don't think we had PH or quantitative fecal fat tests done.

(Unless one of those is called " A1-Antitrypsin, 24hr. feces " .) Can

those be done while taking the enzymes, or would we have to be off

them to get accurate results?

> > >>>>

> > >>>>

> > >>>>

> > >>>>

> > >>>>

> > >>>>>This message is for parents that have had success with their

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>child's

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>peciatrician ordering blood test, celiac disease test,

> carnitine

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>tests,

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>etc.

> > >>>>>

> > >>>>>Basically our story is my son's pediatrician wouldn't think

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>outside the

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>box to get tests ordered or look into what is covered by our

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>insurance

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>company. She is a wonderful pediatrician, but just doesn't

> have

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>the

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>knowledge and is not willing to learn about apraxia. We

> > >>>>>

> > >>>>>

> > >currently

> > >

> > >

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>have

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>Blue Cross Blue Shield.

> > >>>>>

> > >>>>>My question is how did your pediatrican go about getting

tests

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>ordered

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>and covered by insurance. Were you involved or did the

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>pediatrician

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>just know how to get around the insurance companies?

> > >>>>>

> > >>>>>Anything else you can add would greatly be appreciated

because

> I

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>am

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>about to interview a pediatrican that I believe would do

> > >>>>>

> > >>>>>

> > >research

> > >

> > >

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>to

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>>>learn more about apraxia.

> > >>>>>

> > >>>>>Thanks in advance,

> > >>>>>Tina

> > >>>>>

> > >>>>>

> > >>>>>

> > >>>>>

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Guest guest

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>>This message is for parents that have had success with their

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>child's

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>peciatrician ordering blood test, celiac disease test,

> >>>>>>>

> >>>>>>>

> >carnitine

> >

> >

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>tests,

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>etc.

> >>>>>>>

> >>>>>>>Basically our story is my son's pediatrician wouldn't think

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>outside the

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>box to get tests ordered or look into what is covered by our

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>insurance

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>company. She is a wonderful pediatrician, but just doesn't

> >>>>>>>

> >>>>>>>

> >have

> >

> >

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>the

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>knowledge and is not willing to learn about apraxia. We

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>currently

> >>>

> >>>

> >>>

> >>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>have

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>Blue Cross Blue Shield.

> >>>>>>>

> >>>>>>>My question is how did your pediatrican go about getting

tests

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>ordered

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>and covered by insurance. Were you involved or did the

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>pediatrician

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>just know how to get around the insurance companies?

> >>>>>>>

> >>>>>>>Anything else you can add would greatly be appreciated

because

> >>>>>>>

> >>>>>>>

> >I

> >

> >

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>am

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>about to interview a pediatrican that I believe would do

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>research

> >>>

> >>>

> >>>

> >>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>to

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>>>learn more about apraxia.

> >>>>>>>

> >>>>>>>Thanks in advance,

> >>>>>>>Tina

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

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Guest guest

Very small as I used to live in Lawrenceville, went to Rider for grad

school:) Some day we'll have to do a play date:)

bigcheech91 wrote:

>Lawrenceville (right next to Princeton and Trenton). Small world,

>isn't it?

>

>

>

>

>>Where are you in NJ? We are in Milltown.

>>

>>

>>

>

>

>

>

>

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Guest guest

I can't imagine a way you could have helped us more.

Thanks!

Liz

claudia.morris wrote:

>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>>This message is for parents that have had success with their

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>child's

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>peciatrician ordering blood test, celiac disease test,

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>carnitine

>>>

>>>

>>>

>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>tests,

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>etc.

>>>>>>>>>

>>>>>>>>>Basically our story is my son's pediatrician wouldn't think

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>outside the

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>box to get tests ordered or look into what is covered by our

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>insurance

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>company. She is a wonderful pediatrician, but just doesn't

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>have

>>>

>>>

>>>

>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>the

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>knowledge and is not willing to learn about apraxia. We

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>currently

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>have

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>Blue Cross Blue Shield.

>>>>>>>>>

>>>>>>>>>My question is how did your pediatrican go about getting

>>>>>>>>>

>>>>>>>>>

>tests

>

>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>ordered

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>and covered by insurance. Were you involved or did the

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>pediatrician

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>just know how to get around the insurance companies?

>>>>>>>>>

>>>>>>>>>Anything else you can add would greatly be appreciated

>>>>>>>>>

>>>>>>>>>

>because

>

>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>I

>>>

>>>

>>>

>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>am

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>about to interview a pediatrican that I believe would do

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>research

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>to

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>>>learn more about apraxia.

>>>>>>>>>

>>>>>>>>>Thanks in advance,

>>>>>>>>>Tina

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

>>>>>>>>>

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  • 1 month later...
Guest guest

,

I am reading/deleting old posts. No one ever said to test milk for that

stool thing? The reason I ask is that milk is the suspected culprit of

asthma stuff in my extended family. The longer we are on this road, the

more extended family stuff comes up and the fact that milk has been

pointed to. Milk may very well be our only beast, or at least our

biggest one. To be thorough I am checking other stuff but my gut tells

me we are almost there, as do my kids, at least when I get the diet right.

Just because something is our deal does not make it yours it is just

that so much of your story sounds familiar and aside from this board,

family history pointed me in that direction after seeing this (even the

CF concerns) in extended family.

:)

Liz

bigcheech91 wrote:

>We were waiting for Dr. Verma, but after we saw the allergist

>(Spergel -- not really helpful) we got fast-tracked to see Dr.

>Mascarenhas because she is the GI who is most expert in CF. Despite

>me not being worried about CF at all, they saw his history of

>excessive mucous as a cause for concern. (I was tested and am not a

>carrier of the CF gene, but apparently that doesn't cover some of the

>more obscure variants.) I found the concern a bit worrisome, but

>also strange. Don't most kids with environmental allergies have a

>lot of mucous? Why so much concern?

>

>While we were waiting for Dr. Verma, we saw Dr. Jay Dadhania, who

>ordered the same tests that Dr. Mascarenhas would have (except she

>added the sweat test for CF). Then we got the appointment, so we saw

>her first, then had the tests done. She gave us better instructions

>regarding the tests, which gave me confidence in her abilities. (She

>told us to take a break from the enzymes for at least five days

>before doing the tests. Dadhania did not.)

>

>She uncovered no problems, which is good news, but also frustrating.

>No mainstream doctor has an explanation for why his stools were soft,

>and why the enzymes fixed the situation. They try to say he outgrew

>the problem, but that doesn't hold water. We fixed the problem

>ourselves OVERNIGHT once we got the right enzyme dose. At some

>point, we must consider taking him to DAN doctor. I still have

>things to try before I run out of ideas, though.

>

> in NJ

>

>

>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>>This message is for parents that have had success with their

>>>>>

>>>>>

>>>>>

>>>>>

>>>child's

>>>

>>>

>>>

>>>

>>>>>peciatrician ordering blood test, celiac disease test, carnitine

>>>>>

>>>>>

>>>>>

>>>>>

>>>tests,

>>>

>>>

>>>

>>>

>>>>>etc.

>>>>>

>>>>>Basically our story is my son's pediatrician wouldn't think

>>>>>

>>>>>

>>>>>

>>>>>

>>>outside the

>>>

>>>

>>>

>>>

>>>>>box to get tests ordered or look into what is covered by our

>>>>>

>>>>>

>>>>>

>>>>>

>>>insurance

>>>

>>>

>>>

>>>

>>>>>company. She is a wonderful pediatrician, but just doesn't have

>>>>>

>>>>>

>>>>>

>>>>>

>>>the

>>>

>>>

>>>

>>>

>>>>>knowledge and is not willing to learn about apraxia. We

>>>>>

>>>>>

>currently

>

>

>>>>>

>>>>>

>>>>>

>>>>>

>>>have

>>>

>>>

>>>

>>>

>>>>>Blue Cross Blue Shield.

>>>>>

>>>>>My question is how did your pediatrican go about getting tests

>>>>>

>>>>>

>>>>>

>>>>>

>>>ordered

>>>

>>>

>>>

>>>

>>>>>and covered by insurance. Were you involved or did the

>>>>>

>>>>>

>>>>>

>>>>>

>>>pediatrician

>>>

>>>

>>>

>>>

>>>>>just know how to get around the insurance companies?

>>>>>

>>>>>Anything else you can add would greatly be appreciated because I

>>>>>

>>>>>

>>>>>

>>>>>

>>>am

>>>

>>>

>>>

>>>

>>>>>about to interview a pediatrican that I believe would do

>>>>>

>>>>>

>research

>

>

>>>>>

>>>>>

>>>>>

>>>>>

>>>to

>>>

>>>

>>>

>>>

>>>>>learn more about apraxia.

>>>>>

>>>>>Thanks in advance,

>>>>>Tina

>>>>>

>>>>>

>>>>>

>>>>>

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Share on other sites

Guest guest

Well, a little bit yes and a little bit no. Before we went to the

doctor, we had attempted a no-dairy trial and had to stop after ten

days. Instead of firming up his BM's, they got looser! Yes, it is a

mystery. Why would that happen? At the time, my working theories

were that (a.) the milk was " constipating " him enough to keep the

stools formed or (b.) the lack of yogurt lead to a yeast issue.

Either way, we went back on milk and things went back to his version

of normal. So, when they asked about milk, I told them that story

and they dismissed it immediately without further discussion.

The good GI suggested that perhaps he's lactose intolerant and that's

why the enzymes work. That's simplistic but absolutely possible.

Since the baby and I have to do a dairy-free trial anyway, I'm going

to force it on all the kids for two weeks at least, just to see what

happens. My 2-1/2 year old is constipated without juice due to his

horrible diet (he self-limits to mostly carbs and dairy, so he may

starve), so I'm hoping this will help him. has been VERY

sensitive the last few weeks, so for him, I'm hoping that lessens or

disappears. I have bruises all over my body from him, and if I have

a strong reaction (e.g. say " OWW! " ) he cries. My daughter may only

do a short trial because she just got a palatal expander, which makes

eating difficult.

My husband is surprisingly supportive of the diet, probably because I

gave him a real talking-to about how we are trying to avoid

developing bigger problems, etc., but he's in a panic about what to

serve for breakfast. He's been serving that meal to the kids since I

had Tyler, and it's heavily dependent on bagels, pancakes, and

waffles. Gotta give the guy credit -- most dads don't whip up

homemade waffles on school/work days. I told him GFCF cereal with

rice milk, fruit, eggs -- case closed.

Yeah, I'd say you're a little obsessed :) with milk issues, except

that they really are sooooo common.

>

> >We were waiting for Dr. Verma, but after we saw the allergist

> >(Spergel -- not really helpful) we got fast-tracked to see Dr.

> >Mascarenhas because she is the GI who is most expert in CF.

Despite

> >me not being worried about CF at all, they saw his history of

> >excessive mucous as a cause for concern. (I was tested and am not

a

> >carrier of the CF gene, but apparently that doesn't cover some of

the

> >more obscure variants.) I found the concern a bit worrisome, but

> >also strange. Don't most kids with environmental allergies have a

> >lot of mucous? Why so much concern?

> >

> >While we were waiting for Dr. Verma, we saw Dr. Jay Dadhania, who

> >ordered the same tests that Dr. Mascarenhas would have (except she

> >added the sweat test for CF). Then we got the appointment, so we

saw

> >her first, then had the tests done. She gave us better

instructions

> >regarding the tests, which gave me confidence in her abilities.

(She

> >told us to take a break from the enzymes for at least five days

> >before doing the tests. Dadhania did not.)

> >

> >She uncovered no problems, which is good news, but also

frustrating.

> >No mainstream doctor has an explanation for why his stools were

soft,

> >and why the enzymes fixed the situation. They try to say he

outgrew

> >the problem, but that doesn't hold water. We fixed the problem

> >ourselves OVERNIGHT once we got the right enzyme dose. At some

> >point, we must consider taking him to DAN doctor. I still have

> >things to try before I run out of ideas, though.

> >

> > in NJ

> >

> >

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Guest guest

My guess is the stools were looser because the body was more able to rid

itself of the toxins. The yeast was the toxins leaving.

You husband is a gem. Van's waffles may help in a pinch. Not good for

us...rice issues. I have other obsessions I assure you and I hate to say

it but GFCFSF simply made me focus on the relevant ones for us.

I read all your emails. You have a wealth of knowledge and are generous

to share it.

:)

L

bigcheech91 wrote:

>Well, a little bit yes and a little bit no. Before we went to the

>doctor, we had attempted a no-dairy trial and had to stop after ten

>days. Instead of firming up his BM's, they got looser! Yes, it is a

>mystery. Why would that happen? At the time, my working theories

>were that (a.) the milk was " constipating " him enough to keep the

>stools formed or (b.) the lack of yogurt lead to a yeast issue.

>Either way, we went back on milk and things went back to his version

>of normal. So, when they asked about milk, I told them that story

>and they dismissed it immediately without further discussion.

>

>The good GI suggested that perhaps he's lactose intolerant and that's

>why the enzymes work. That's simplistic but absolutely possible.

>Since the baby and I have to do a dairy-free trial anyway, I'm going

>to force it on all the kids for two weeks at least, just to see what

>happens. My 2-1/2 year old is constipated without juice due to his

>horrible diet (he self-limits to mostly carbs and dairy, so he may

>starve), so I'm hoping this will help him. has been VERY

>sensitive the last few weeks, so for him, I'm hoping that lessens or

>disappears. I have bruises all over my body from him, and if I have

>a strong reaction (e.g. say " OWW! " ) he cries. My daughter may only

>do a short trial because she just got a palatal expander, which makes

>eating difficult.

>

>My husband is surprisingly supportive of the diet, probably because I

>gave him a real talking-to about how we are trying to avoid

>developing bigger problems, etc., but he's in a panic about what to

>serve for breakfast. He's been serving that meal to the kids since I

>had Tyler, and it's heavily dependent on bagels, pancakes, and

>waffles. Gotta give the guy credit -- most dads don't whip up

>homemade waffles on school/work days. I told him GFCF cereal with

>rice milk, fruit, eggs -- case closed.

>

>Yeah, I'd say you're a little obsessed :) with milk issues, except

>that they really are sooooo common.

>

>

>

>

>

>

>>

>>

>>

>>>We were waiting for Dr. Verma, but after we saw the allergist

>>>(Spergel -- not really helpful) we got fast-tracked to see Dr.

>>>

>>>

>

>

>

>>>Mascarenhas because she is the GI who is most expert in CF.

>>>

>>>

>Despite

>

>

>>>me not being worried about CF at all, they saw his history of

>>>excessive mucous as a cause for concern. (I was tested and am not

>>>

>>>

>a

>

>

>>>carrier of the CF gene, but apparently that doesn't cover some of

>>>

>>>

>the

>

>

>>>more obscure variants.) I found the concern a bit worrisome, but

>>>also strange. Don't most kids with environmental allergies have a

>>>lot of mucous? Why so much concern?

>>>

>>>While we were waiting for Dr. Verma, we saw Dr. Jay Dadhania, who

>>>ordered the same tests that Dr. Mascarenhas would have (except she

>>>added the sweat test for CF). Then we got the appointment, so we

>>>

>>>

>saw

>

>

>>>her first, then had the tests done. She gave us better

>>>

>>>

>instructions

>

>

>>>regarding the tests, which gave me confidence in her abilities.

>>>

>>>

>(She

>

>

>>>told us to take a break from the enzymes for at least five days

>>>before doing the tests. Dadhania did not.)

>>>

>>>She uncovered no problems, which is good news, but also

>>>

>>>

>frustrating.

>

>

>>>No mainstream doctor has an explanation for why his stools were

>>>

>>>

>soft,

>

>

>>>and why the enzymes fixed the situation. They try to say he

>>>

>>>

>outgrew

>

>

>>>the problem, but that doesn't hold water. We fixed the problem

>>>ourselves OVERNIGHT once we got the right enzyme dose. At some

>>>point, we must consider taking him to DAN doctor. I still have

>>>things to try before I run out of ideas, though.

>>>

>>> in NJ

>>>

>>>

>>>

>>>

>

>

>

>

>

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