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juliegee
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Hello All-

In another thread, I accidentally ignited a firestorm when I shared one of Dr. Peter Rowe's commandments :rolleyes: Dr. Rowe, a pediatrician, runs the Chronic Fatigue Clinic at Johns Hopkins and works exclusively with children and teens stricken with dysautonomia.

Dr. Rowe insists that all of his patients, with any GI symptoms, refrain from consuming ALL milk protein. Apparently a pediatric GI, named Kevin Kelley has found that orthostatic intolerance (and GI symptoms) greatly worsen with milk protein consumption in this population. This has certainly proved true for my son, Mack. He has an extreme hypersensitivity to milk protein that was NOT obvious to us before Dr. Rowe made the association between his symptoms and dairy.

My son has improved by leaps and bounds since adhering to this restriction. Being a teen, he has occasionally cheated (usually with pizza) and he pays the price with worsened GI & autonomic symptoms. He has decided that it isn't worth it any more.

Dr. Rowe recommends exchanging Rice Dream for milk, Smart Balance for Butter, etc. We have learned to look for hidden milk protein in all prepared foods and medicines, etc. For instance, Oreos and Biscoff cookies are among the few dairy-free that we have found.

It feels counterintuitive to stop dairy when a child is struggling to put on any weight. But we have learned that this was an imperative in Mack's recovery. It is NOT the only therapy that Dr. Rowe employs by any means, but a very important part of his recovery program.

Many ANS patients have severe GI symptoms caused by nerve damage to their GI tracts and need treatment for this condition. Hypersensitivities and allergies to various foods, dairy among them, can greatly worsen symptoms. Mack found help from a GI motility specialist. (This is usually more than most GI's handle/recognize.) Mack was found to have a small bowel dysmotility that he still has to treat this day with a GI prokinectic and gastroparesis diet.

I am passing along medical information that has been helpful to my son.

Julie

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I posted this on another thread, but it seems to be more on topic here.

Interesting that:

Ensure 8oz. has 250calories, 41carbs, 18sugar, 9protein

Milk nonfat/1%/whole 8oz. has 83/102/146calories, 12-13carbs, 12-13sugar, 8protein

Gatorade 20oz. bottle has158calories, 39carbs, 32sugar, 0protein

G2 LowCal 32oz. bottle has 80calories, 20carbs, 20sugar, 0protein

Instead we use:

Almond Breeze Unsweetened 8oz. has 40calories, 2carbs(1 is fiber), 0sugar, 1protein

Coconut Milk Unsweetened 8oz. has 50calories, 1carb, 0sugar, 1protein

Hood Calorie Countdown 8oz. has 45calories, 3carbs, 3sugar, 8protein

My Favorites:

Powerade Zero 32oz. bottle has 0calories, 0carbs, 0sugar, 0protein

Atkins Vanilla Shake 11oz. has 160calories, 2carbs(1 is fiber), 1sugar, 15protein

EAS Protein Powder 1scoop has 130calories, 3carbs(1 is fiber), 1sugar, 23protein

Better to avoid all the carbs and sugar!

We mix the protein powder in the Almond, Coconut, Hood products.

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Julie, thanks for passing along your info. Wise and useful information! I'm wondering if any one has feelings on raw milk (have docs addressed it with you)...I know quite a few people who have seen such amazing results from it. One of my friends had serious GI issues and it was raw milk that played a huge role in his recovery (and he certainly could never tolerate reg milk). Interesting. Just wondering....

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hi..

I whent of cow milk years ago, when i draw the conclusion that thats what made me trow up and gett this weird sort of migrain. I have tryed to take a lilte milk at times, but found it to worsen my dys sympt and pain in bladder and rest, in aditon to trouth burn and such....

i do have a lilte lactose in my one med, but the other effects balence it out. I do tolerate goat products, so i use white goat cheez on pizza and such. And find that when prepering all the food at home its rather easy, cause there is so many replacment things one can use. :)

In the beginning there was only soymilk to gett, then risemilk. Now we gett oatmilk, and thats my favorite...=) Ofcourse eating out is dificult, speasly in a really really diary loving contry... :P So in that way its maby not so bad that i dont really leave the house that often B)

i do take calsium tablets after cutting the cow milk out. when it comes to goatmilk, some tolerate that fine, others not.

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Years ago (mid 90's) when I became ill and started my endless pursuit for answers I found an endocrinologist that I really liked. She was one of the few Doctors who really believed me and tried to figure out what what was going on. She did all sorts of blood tests, looking for things that were out of the ordinary. One thing she tested for was Epstein Bar virus, which came back high on all four phases (or whatever they're called). She said I should look into Chronic Fatigue Syndrome. I think at the time little (or less) was known about it so she couldn't really advise me on what to do. I think Epstein Bar has since been ruled out as a cause. But what's interesting is that one of the last things she said to me (and it was kind of in passing) was to stay away from milk -- to get off dairy. I sort of dismissed it, but have often wondered why she said that. Maybe there was some research linking the two? Interesting.

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Thanks for sharing your story, Naomi. FYI, Epstein Bar is still implicated as one possible etiology of CFS. Researchers have found that 90+% of CFS patients also suffer with orthostatic intolerance so there's certainly overlap there. If avoiding milk protein improves OI, how could it nor help with CFS?

It's so gratifying to find a doctor that believes & tries to help :rolleyes:

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My son cut out all dairy for about 6 weeks. It didn't make an iota of difference in his symptoms. Maybe he didn't do it for a long enough time, but he was losing weight on the dairy-free diet, and he's too underweight to begin with. (he also stopped eating gluten for about a year, again with no benefits that he could see.)

Lenna

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I can't remember how long Mack's trial was for, Lenna. I think 4 weeks. Apparently, if we saw no improvements by that time- milk protein hypersensitivity would have been eliminated as a factor in Mack's illness. Sounds like you have done the right thing by running elimination trials. Wish it would have helped, poor Danny.

BTW, Mack is very sick now too- major setback. I forgot how hard it is to be this worried & scared.

Hugs-

Julie

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Does he recommend a protein replacement for milk? Some kids drink a lot of milk and rely on it for much of their protein need possibly?

He recommends Rice Dream as a substitute for milk- little or no protein there. I guess FOOD (eggs, lean meats, etc) is supposed to supply the necessary protein. He does, however, recommend supplementing calcium for that lost in dairy.

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Crap!! Sorry to hear about Mack! Do you have any sense of what triggered it? I hope it's a quick and minor setback.

Julie, I'm regressing from the dairy topic... Danny had his best 8 days of the entire year last week when he switched back to the Cozaar brand from the Losartan. And then had a mini-crash which has now lasted about 5 days. I can't begin to figure this out. I'm not the dizzy one, but my head sure is spinning!

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Crap!! Sorry to hear about Mack! Do you have any sense of what triggered it? I hope it's a quick and minor setback.

Julie, I'm regressing from the dairy topic... Danny had his best 8 days of the entire year last week when he switched back to the Cozaar brand from the Losartan. And then had a mini-crash which has now lasted about 5 days. I can't begin to figure this out. I'm not the dizzy one, but my head sure is spinning!

Yay, Cozaar!!! But what's the setback about??? Can you attribute it to anything else- change in diet activity, etc. I pray the good times come back. Danny is beyond due :(

YES, we basically know what has set Mack back. It is either the athogram (injected dye & MRI) of his shoulder OR the back-to-back 75 mile bike rides he did over spring break. The dye is in his system for only 4 hours. He had another one done of his hip today. I doubt that's the problem. The DANG bike rides are most likely what have done him in. They were BOTH with his DADDY, who is in the dawg house right now :angry: Grrrrrr.

I'm a mad & sad Mommy. He can't even attend school. His Gi tract is totally shutting down....

Julie

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Julie, Wow...75 miles?! I would be impressed even if Mack didn't have health issues! I hope he's back on his feet really quickly. And believe me, I understand the sadness that you feel. I'm not sure why Dan isn't feeling great this week. I hope that his body isn't just acclimating to the Cozaar.

Take care,

Lenna

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I tried a dairy-free diet, which I am relieved beyond words made no appreciable difference whatsoever! Having already been forced to go strict gluten free after a positive Celiac diagnosis, the thought of giving up my beloved cheese is more than I can bear! :P

I have improved quite a bit on a gluten free diet, much to my dismay! While I have not gained any weight back, I seem to have at least stabilized and stopped losing weight. I had hoped the gluten free diet wouldn't make a difference, so I could justify continuing to eat all my favorite things. Sadly, it helped a great deal.

Sandy

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