Re: listening to your pediatrician vs. gastro

[Guest guest]

Hi Ellen,

Welcome - I hope you do find a lot of support here - I know I have.

First, I think many here will tell you that mom-instinct is the most important

factor and if

you are not comfortable talking with the gastro, then I would think it would be

better to

find another in your insurance plan if you can. There is no reason that anyone

should be

afraid to speak candidly about their concerns with any doctor. There is no

reason to feel

intimidated. NONE!

What I feel when I am at an appointment for one of my children is that when it

comes to

my children, I know them better than anyone else and if something just doesn't

sit well

with me, you better believe I'm going to investigate and ask a lot of questions.

If I don't

get answers I like, I'm going elsewhere, bottom line. Think of the doctor as

offering you a

service that you are paying for - just like going to a restaurant or getting

your haircut, if

you don't like the food or the cut, you aren't likely to go back are you? You

(or your

insurance which you pay for) is PAYING the doctor, they are working FOR you - if

you don't

like the service, go somewhere else!

So, I would first suggest that if you think a gastro can help, try finding a new

one.

I wonder what kinds of stool tests and blood tests were done. I don't know much

about

the failure to gain weight and it certainly seems to be of highest importance,

but couldn't

this be a problem with digestion/absorption? My guess is you could learn a lot

from a few

specific tests. Maybe the tests your son has already done aren't specific

enough or

perhaps weren't broad enough to catch certain things?

Have you thought about seeing a doctor that is more holistic in their approach?

(e.g., a

DAN! doctor (I believe they see adults and non-autistic kids and are quite

familiar with gut

issues), a chiropractor (not all chiropractors delve into stool testing,etc. -

check first), a

naturopath, etc.?

If your insurance and/or budget doesn't allow for alternative care providers,

you could try

researching a lot about the symptoms of various issues (food

allergies/sensitivities, gut

yeast overgrowth, unfriendly bacterial overgrowth, etc.) and try to discern

what's going on

with your son.

Personally, I would consider finding a more holistic provider who will help seek

the

underlying cause of the issues. If that is not an option, I would really

consider (again, I'm

NOT a physician) trying to eliminate wheat/gluten and milk/dairy/casein, just to

see if it

makes any difference. Trust me, I know how hard it is - we have eliminated

dairy/casein

for 3 years and are trying to take it easy on wheat/gluten but my husband is not

" all in " on

the wheat until we get confirmation by testing that we need to. (I'm, of

course, keeping

my fingers crossed that we don't.) What I can say is that after reading a lot

of sites and

message boards relating to autism and the dietary modifications the parents of

autistic

kids sometimes need to take on I feel that the GF/CF is a walk in the park.

But, my son

also has not have weight gain issues, so I can understand your hesitance.

My 3 year old is also very picky and it is heartbreaking to hear him always ask

for cheese

on his sandwich or to see him tell his nursery school teacher he can't have

Goldfish

because they have dairy even though they are his favorite thing in the whole

world. But,

my hope is that if we heal what is going on in his gut, he'll be able to eat

more liberally

later in life because it is taken care of now. And, he will eat. It's hard to

watch him not eat

much at breakfast or lunch, but by dinner, he's eating tons of vegetables

(broccoli,

asparagus, cauliflower, green beans, etc), lean meats, potatoes, pretty much

whatever I

put in front of him. None of it with butter or cheese or sauces of any kind.

Does your son drink enough liquids? The benefiber is a soluble fiber I believe

and I think

they work by absorbing water/liquid. I thought my son drank a lot, but I find

that the

more I can get him to drink (we have drinking contests, etc.) the better off we

are in terms

of poop.

Keep sifting through those old posts - there is a wealth of information here.

I, too, am

thankful to have found this group!

best,

>

> Thank you, . I haven't yet tried to eliminate food allergies

> for the simple reason that my son needs to still gain weight. He's

> on the lower 25th percentile on the growth chart, which is ok just

> smaller than usual. He's not in any danger anymore, but the goal is

> to have him gain weight to catch up with his milestones.

>

> I don't know if other parents have the same issues with their child

> of weight gain difficulty and constipation. It's difficult to

> eliminate soy, dairy, protiens, nuts, and wheat products when he

> needs to bulk up. Plus, he's a typical 2 year old with a picky

> palate. He's had several tests taken: blood, urine, stool, barium.

> All of them were negative. I make sure that he has Benefiber twice a

> day. The stools vary in size, but most of them are not that peanut

> butter consistency that the gastro suggested Miralax was going to

> provide. Does anyone know if a drier consistancy really matters?

> Should I worry about it?

>

> It is interesting reading the previous posts. My son exhibited the

> same behavior that one other mom described as SDB (self-destructive

> behavior) on Miralax. He was hitting himself, hitting his head on

> things. Nightmares got worse. Very scary sometimes.

>

> I haven't told my son's gastro yet that we took him off Miralax. I'm

> thinking she's going to probably cancel our next appointment or

> something. I don't know how I'm going to explain it without sounding

> like the overly protective mom.

>

> Thanks for this list! I'm new to the list and find all of the

> information so helpful. Who knew there was a community out there

> like this?

>

> -Ellen

>