Please Tell Me I am NOT crazy

[Χά�ων]

DS has multiple health problems. What he has is very very rare. His specialist for his disease says DS is stable and they do not know why he is in pain. They have sent us to a specialist for pain who looks at DS, says he is fat and needs to do yoga. They want me to meet with a nutritionist because they say that things can always be improved as far as what he eats. I think it is a cop out. They do not want to say "I do not know" and instead are trying to call a very very active 8 year old fat. He is 4ft 9inches and weighs 108lbs. He will be 9 in March.

 

 

I am keeping a food log and activity log here is a sample. This is pretty much the same every day. He loves to be active and I had to impose a day off. On this day off we focus on school and DS just plays outside with the dogs, shoots hoops in the driveway, plays with a hockey stick and ball, runs 1/4 mile and is begging fo me to install "rocks" all over the living room wall so he can climb the walls (I have considered it). The only out of the house activity he does that day is work 1:1 with a specialist for strength and flexibility. His lack of flexibility shocks the doctors and specialists and it interfers with daily life, this is NOT normal limitations for a boy.

 

 

This is yesterday's food and activity log:

 

 

Breakfast

1.5 biscuits

1.5 slices of sausage

Banana

 

1 hour game

 

Lunch (post game)

1 turkey wrap (2 sices of turkey, 1 slice cheese, salad, teaspoon ranch dressing)

Single serve Chololate Almond milk

1/8 cup salsa and chips

 

.5 hour lesson

2 hours ice skating w/ friends He speed skates every week. He is not a wall hugger by any means and burns more calories than wall huggers.

 

1 Orange

 

2 hours bowling

 

(Post bowling ride home)

Turkey wrap

 

Dinner (The turkey wrap filled him up)

3/4 cup Salad mixed baby spring greens

1 TBLS ranch dressing

1/4 cup chili w/ 5 corn chips

 

 

When he got home he drug the hockey stick and ball into the house and was playing with it, then he played with his legos, then he drew, then he fed the dogs, helped with the dishes, then I got tired and we went to bed. This was a low activity day. There are days that we get in a couple of hours of school work and he still manages 8 hours of activity. He thrives on it and if he were physically in good health I could see him growing up to be a gym rat or a personal trainer.

 

If it matters I cook from scratch, buy organic whenever possible.

 

He does not drink soda. In 2012 he had a sip of Dr. Pepper (summer) and declared it to be disgusting and drank a bottle of Mt. Dew (fall) because someone convinced him he would have more energy. He did have more energy but not in a good way. He was so high strung he couldn't focus on what he was doing.

 

He does not eat candy. When he gets candy he takes a couple of bits and gives it to me.

 

He does not eat fast food, chips, or sugar filler snacks.

[gardenmom5]

hugs. does sound like a cop-out. men of a certain generation especially can't just say "I don't know". feels too much like a failure.

 

I had drs tell me the same thing about my son who couldn't keep "slim" jeans up without a belt. (and since he wouldn't wear a belt - he wore slim-jeans in a smaller size that were too short. but hey, the waist fit.)

 

one thing about yoga (there are dvds for kids), it might help with the pain, depending upon the cause.

[thescrappyhomeschooler]

Yeah, I had the endocrinologist tell me all my problems were because I was fat. In my case, I am overweight, but I think my problems were more likely caused by my giant tumor than the fat. Trust your mommy instincts.

[Alicia64]

Well, I would absolutely and 100 percent get a second opinion. I also have a large nine-year-old and not one of the doctors who reprimanded me for his weight ever asked about family size.

 

I'm thin and my son's twin is thin, but they have a huge dad and two towering grandfathers. One is 6' and the other is 6'3. It blows me away that these doctors will wag their finger at me and never once ask about . . . hello. . . genetics.

 

Sorry: don't mean to vent. But, yes, I'd get a second opinion. If your boy eats well and is relatively active and is in pain, I'd definitely get a second and possibly a third opinion.

 

Alley

[Parrothead]

Yeah, sounds like a cop out to me too.

 

I will say yoga might help with his flexibility if he is having problems with that.

[J-rap]

I would trust your instinct. Maybe you have some big-person genes in the family, and eventually -- in his mid teens -- he will become taller and slimmer.

 

Another thought is maybe gluten doesn't sit well with his body. I know of some people who have strange food absorption and metabolism problems due to gluten, even though they do not test positive for celiac or gluten allergies. Once they change to a diet of meat, eggs, and vegetables, things gradually start working better and they slim down and feel so much better. Just a thought.

[Χά�ων]

I would trust your instinct. Maybe you have some big-person genes in the family, and eventually -- in his mid teens -- he will become taller and slimmer.

 

Another thought is maybe gluten doesn't sit well with his body. I know of some people who have strange food absorption and metabolism problems due to gluten, even though they do not test positive for celiac or gluten allergies. Once they change to a diet of meat, eggs, and vegetables, things gradually start working better and they slim down and feel so much better. Just a thought.

 

 

I know so many people that chase the current diet trend. It started with gf/cf and then went to another and now is on yet another trend that I stopped giving much credit to them. No one I know has found the cure they are chasing.

 

But with that said DS mentioned using that "different" bread last week. I guess it won't hurt anything (except my food budget) to try. How long before we would see a difference? Is there a website that would give us both an idea of how he should feel and what he should expect?

 

[prairiewindmomma]

I'd keep up with the food diary so that the next time it comes up, you can hand them the data.

 

I have a similar issue...can eat 1200 calories a day and gain weight.

 

OTOH, if he has a sensitivity to gluten (which causes joint pain for some people) or nightshades or dairy or other stuff....maybe this can help you pin that down. My rheumy had me do a 6 week food challenge on each....

[Guest submarines]

I know so many people that chase the current diet trend. It started with gf/cf and then went to another and now is on yet another trend that I stopped giving much credit to them. No one I know has found the cure they are chasing.

 

But with that said DS mentioned using that "different" bread last week. I guess it won't hurt anything (except my food budget) to try. How long before we would see a difference? Is there a website that would give us both an idea of how he should feel and what he should expect?

 

Going GF was like a miracle for both of my children. DD's anxiety lessened dramatically, and DS's daily stomach aches were gone. We saw the results within a week or so.

 

Neither of them want to do anything with gluten now--they both know the difference.

[gardenmom5]

I know so many people that chase the current diet trend. It started with gf/cf and then went to another and now is on yet another trend that I stopped giving much credit to them. No one I know has found the cure they are chasing.

 

But with that said DS mentioned using that "different" bread last week. I guess it won't hurt anything (except my food budget) to try. How long before we would see a difference? Is there a website that would give us both an idea of how he should feel and what he should expect?

 

 

I would do a minimum of a couple months to completely gluten free (being completely GF can take a few months just to acheive). It takes time to metabolize out of the system. gluten isn't *just* in bread and pasta. It's more than "just" wheat. e.g. you also have to look at sauces/soups that use modified food starch as a thickener, many cereals, etc.

 

I was half-hearted for several months, and then got strict for a few months. I didn't notice any improvement. over the holidays, we have cheated and NOW I see the deterioration, so we're going back to strict GF.

 

My sons Naturopath tested them and they are both highly sensitive to gluten and casein. they are not sensitive to soy or yeast. western doc's and ND do NOT use the same test protocols. western is only testing for celiac, and won't detect a sensitivity.

[Dory]

I am not normally someone to suggest going GF to anyone, but in your case it might be worth trying.

[Lizzie in Ma]

Our dd has pain amplification syndrome that her Lyme disease kicked into gear.

This is the best info I've found on it. Perhaps something to look in to.

http://books.google.com/books?id=2ompn48QmG0C&pg=PA418&dq=pain+amplification+syndrome&hl=en&sa=X&ei=vMPqUMTLLYe_0QGElIDwDw&ved=0CDEQ6AEwAA#v=onepage&q=pain%20amplification%20syndrome&f=false

[Katy]

I agree with trusting your instincts, multiple opinions, and getting rid of gluten for a minimum of 8 weeks.

 

I would also suggest:

1. Find a female nurse practicioner. They tend to be better at assessments from years working in nursing, and they have experience seeing that a calorie isn't always a calorie, and they are often more willing to admit that they don't know the answer to something and to do some research for you. Doctors have too much tendency to have their ego all wrapped up in their intellect and to not have the humility that someone else might know something more than them. In my experience, specialists can be even worse. Ideally find a nurse practicioner endocrinologist. If that's not possible in your area find a general practicioner.
   
2. Read a book called The Perfect Health Diet that's all about getting toxins out of your diet and getting nutrients in, which apparently heals all sorts of mysterious conditions. It has up to date research and is completely amazing.