Milk / Dairy Free Diet - NEed help

[Guest guest]

Our doctor just suggested we do a dairy free trial for my 2.5 yr old son with

verbal apraxia. (we learned there is a definite allergy).

Does anyone have guidance, info, resources, etc on how to get started with dairy

free? I've done a short search online and didn't find much yet. I think I have

a list of dairy-filled ingredients, but any recos on recipes, decent tasting

brands, etc. is much appreciated.

Thanks in advance and Happy Holidays,

Sharon

[Guest guest]

I know this sample foodstamp monthly menu

(http://gfcf-diet.talkaboutcuringautism.org/gfcfsf-foodstamp-monthly-menu..html)

for the Gluten-, Casein- and Soy-Free (GFCFSF) diet.

This may be useful to you: http://www.godairyfree.org/ (navigate the left

column).

Hope it helps!

[Guest guest]

Hi Sharon,

While this may seem like a simple thing in some respects, it isn't always as

there can often be other food intolerance associated with the metabolic

conditions and soy for example is not always a good replacement for dairy--for a

variety of reasons even in non-allergic/intolernat people. There are other nut

milks --hemp, almond, coconut, hazelnut--and of course top of the list

RICE!!!___Try to buy organic. Don't expect to give any of these milks with a

cookie as a treat---they can replace milk, but as far as flavor goes--it takes a

little getting used to.

Works great for cereal.  In baked goods etc. Keep in mind that kids intolernat

to milk often do have other food intolernaces--even if secondary---just from

their permeable intestines--due to the milk not being digested properly and

inviting bad bacteria.

So start with a good probiotic---a full capsule is fine and not for kids--needs

to eb the refrigitrated kind not on the store shelf--but from the refrigirated

section. We use a few of the one syou need a doctor to recommend like

labs and HTI --but there are many in the refrigirated section of the health food

store that will work fine.

You also ideally woudl identify al other possible nutritional intoelrances. 

Often gluten, soy, corn, and eggs as well as some nuts are part of the

intolernace and metabolic disorder deal. Each child is different uut I am just

giving you a heads up as you replace milk some of the replacements may not be

well tolerated. Also milk/dairy is in many hidden sources like cold cuts--apple

gate farms has dairy free/gluten free and nitrate free organic hot dogs, turkey

breast etc. We buy from them. Also from Whole Foods and Trader Joe--the Rice

Milk is from Trader Joe.

Also keep a diet journal--everything your child eats and note things like

--behavior, sleep, activity level, appetite, skin reactions, sniffles etc.  Ask

the teacher at school to monitor any unusual behaviors--both good and bad and

rotate the foods every 3 days--rice milk cannot really be roted sometimes--we

cna't do the nut ones or the hemp--definitely not the soy so we are left with a

lot of rice milk --but no rpblem--even though cheese was her absolute favorite

thing to eat--at age 3 we learned it was not good for her and we ecxplained, she

cried a little and got used to it. Kids are very adaptable--we didn't eat cheese

in the house fo about half a year but then we started to and she was fine. It

was mommy and daddy cheese and she knew. She gets rice yogurt, coconut yougurt,

there's also coconut miulk--but again be careful about the nut milks, my

daughter does not tolerate large amounts and it's not a digestive issue that is

obvious--it is her skin

that reacts.

I can send you mor einfo later, I'm in a pinch as usual, but for now know that

kids are adaptable, it's not as tough as it appears, always read labels and

thingk " made from scratch " to avoiud problems, eating out lways poses risks and

we usually just get the rice there and the grilled chicken and veggies for her

are brought from home.

Do not worry about calcum, only calfs get that fully from milk, when pasteurized

you don't get much of it anyway no matter how much synthetic vitamin D which

contains formaldehyde they pour in it.  So your best sources for calcium are

leafy greens--kale especially--nettle/red raspberry trea infusion--bought in

bulk an dprepared in a certain way I can send you the instructions--a void in

the jar needs to be created and it sits over night, strain and pour with juice

other things all day--great for the whole family,m great nourishing tonic BTW,

better than many multivitamins which have synthetic vitamins etc. which do NOT

get assimilated.

Also bone broths the nourishing Traditions Winston Price foundations way are a

great source of calcium for everybody--again start out with good quality

grass-fed-organic beef with bones or chicken/turkey/lamb/goat etc. and simmer

for over 8 h. i do it over night. Crock pots are great for this. I start my

soups this afternoon, simmer until i go to sleep, turn stove off and turn back

on in morning, simmer for another 2 h, go to therapies etc. nad then add veggies

--onion carrots, celery, parsnip red bell peppers etc and boil those, than mash

veggies, de-bone and add gluten free noodles if you want etc.  Best soup ever,

most nutritious and not as hard to make as you might think, I get into a routine

and the mashed veggies ensure she eats all ALL veggies, you can even sneak in

some spinach or what ever, but go slowly on green stuff and things that they do

not like .

E-mail me for more details and ask me what is not clear.  Good luck!

Elena

From: vraciup <svraciu@...>

Subject: [ ] Milk / Dairy Free Diet - NEed help

Date: Wednesday, December 16, 2009, 2:57 PM

Our doctor just suggested we do a dairy free trial for my 2.5 yr old son with

verbal apraxia. (we learned there is a definite allergy).

Does anyone have guidance, info, resources, etc on how to get started with dairy

free?  I've done a short search online and didn't find much yet.  I think I have

a list of dairy-filled ingredients, but any recos on recipes, decent tasting

brands, etc. is much appreciated.

Thanks in advance and Happy Holidays,

Sharon

------------------------------------

[Guest guest]

I'm confused as to why the doctor would say to " try a trial of milk and dairy

elimination " if there is a true milk allergy found? Special diets for life if

needed can be life saving.

As you know milk or lack of milk doesn't make one apraxic or autistic but if

there is an allergy you should be aware of ways to supplement your child's

growing bones. So it's good you are doing this under the observation of a

doctor. The following is more info from this group which I put together to help

parents understand there is a need for the nutrients in milk for growing

children -and for parents that can't give their child milk to learn more about

the importance of learning about ways to supplement what is needed if milk/dairy

is eliminated. I grew up GFCF which appears to have saved my life due to my

then diagnosis of celiac which put me in the hospital for much of my early

childhood prior to my special diet -but as much as I know and appreciate special

diets are necessary at times, I also know how hard special diets are...from the

child's point of view. And PS -I'm not on any type of GFCF diet today and

haven't been in years. Back then the thought was that " if you outlive it you

outgrow it by 4 years old " Perhaps like me your child will " outgrow " or is

misdiagnosed with the allergy which from what I read is quite rare in regards to

a true milk allergy...one could hope anyway! (especially this time of year!)

Re: Why milk is so important for growing children!!!!!!

....If parents choose to avoid dairy that's their choice -but at least

be informed because our growing child who has growing bones depends

on us.

Here's just a few comments on alternatives to dairy that are " proven "

to be effective over time. We already know from the research I've

posted that most today just eliminate dairy and the effects are the

children are prone to obesity, short stature, with

weak brittle bones that break easily.

" Yet it is possible to attain optimal health without dairy foods.

Price discovered groups using no dairy foods that had complete

resistance to dental decay and chronic disease; their diets

invariably included other rich sources of animal fats, calcium and

other minerals. The soft ends of long bones were commonly chewed, and

the shafts and other bones were used in soups. "

http://www.realmilk.com/healthbenefits.html

" Rice milk and almond milk are less similar to cow's milk than soy or

hemp milk. If rice or almond is a favourite, be sure to not rely on

them for important nutrients like protein or calcium (unless

fortified). No plant milks are suitable for use as infant formula. "

http://vegetarian-issues.suite101.com/article.cfm/nondairy_milk_nutrition

" Dr. Blaylock, a neurosurgeon,

> with a nutrition practice who is affiliated with the Weston Proce

> Foundation, writes about this in his books. "

Liz Weston Price started the campaign for " real milk " which is raw

milk.

http://www.realmilk.com/

http://www.youtube.com/watch?v=uHcyAH0rOPE & feature=related

http://www.raw-milk-facts.com/

great pro/con article

http://www.salon.com/mwt/feature/2007/01/19/raw_milk/

Even if you don't or can't use raw milk (it's not legal all over) I'd

switch to organic milk -but please don't just pull your growing

children off milk. Best thing to do is listen to all sides and do

the research before making a decision. Last thing you need however

is an overweight, short, speech impaired child who has bones that

break easily -which clinically is what your child is at risk for if

you eliminate milk. Again do the research and even if there are pros

and cons -weigh them. Speech impaired child that is overweight,

short with weak brittle bones -or speech impaired child that throws

tantrums (which isn't even proven is from milk!!!) I'd like to ask

Super Nanny what she thinks but don't think I'd have to.

Below is an archive on how rare milk allergies actually are as well

as some of the research on the rising group of brittle boned

overweight short kids due to parents eliminating milk. Just say no.

Also as Weston Price Foundation points out -the problem may not be

milk or cow's milk -but how it's processed today:

" Approximately 2% of the pediatric

population is affected by cow's milk allergy. Moreover, the condition

tends to be outgrown by 5 years of age. In contrast to cow's milk

allergy, which occurs primarily in infancy and young childhood,

lactose intolerance (symptoms) seldom occurs prior to preadolescence. "

http://www.nationaldairycouncil.org/NationalDairyCouncil/Health/Digest/dcd77-3Pa\

\

ge1.htm

Pediatric Dermatology

Volume 24 Issue 1 Page 1-6, January/February 2007

Unnecessary Milk Elimination Diets in Children with Atopic Dermatitis

Children were followed up at 1, 3, 6, and 12 months. Of the 206

patients...Four patients on the milk-free diet (8.9%), accounting for

2.2% of all patients, were found to be allergic. confirming that this

measure is being applied excessively.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1525-1470.2007.00323.x

CM allergy alone affects. 1% to 3% [3],

http://www.springerlink.com/content/m8k11mtl7x266804/

Also my son Tanner who has drank milk all his life -actually both my

boys -I can't even tell you the last time either of them were on

antibiotics -they both had one or two ear infections when they were

little and that's when there were on antibiotics -years ago.

Children who avoid drinking cow milk have low dietary calcium intakes

and poor bone health1,2,3

Conclusions: In growing children, long-term avoidance of cow milk is

associated with small stature and poor bone health. This is a major

concern that warrants further study.

The high proportion of overweight and obese children in the present

study was an unexpected finding, particularly because many of the

children had been breast-fed for prolonged periods (44). Because we

did not measure energy balance in our study, we cannot say whether

the high adiposity of these children was due to excessive energy

intakes or to inadequate energy expenditure. It could be that the

milk avoiders were drinking more high-energy substitute fluids, such

as fruit juice or carbonated drinks. Short stature and obesity have

been reported in children who consume excessive amount of fruit juice

(45), although not always (46). Alternatively, the milk avoiders in

the present study may have been less physically active than the

control subjects. Low activity would have affected bone growth

adversely because intermittent weight-bearing exercise is a

critically important stimulus to osteogenesis in prepubertal children

(47� " 50). Another possible mechanism contributing to the high

adiposity we observed in the milk avoiders was that their high body

weights were linked to their low calcium intakes. Recent studies

suggest that low dietary calcium intakes can stimulate lipogenesis

and inhibit lipolysis simultaneously, resulting in the accumulation

of body fat (51� " 54).

In summary, our study of young male and female prepubertal children

with a long history of avoiding cow-milk consumption has identified

major problems in bone health (eg, small bones, low aBMD and

volumetric BMAD, and a high prevalence of bone fractures) that many

health professionals and members of the general public appear to be

unaware of. Short stature and high adiposity were other health

concerns. Ideally, a full dietary assessment of children who avoid

milk consumption seems warranted to help identify possible

nutritional deficiencies or excesses. Future studies of bone health

in larger populations of children who avoid the consumption of cow

milk are desirable to confirm our findings and to determine whether

the problems associated with this dietary pattern resolve as the

children grow (4). In the interim it seems prudent to advise parents

of all children who do not drink cow milk that they should seek

professional nutritional advice to help optimize their children's

bone health.

Key Words: Dietary calcium • bone density • milk avoidance •

children • obesity • fractures • cow milk allergy • New Zealand

http://www.ajcn.org/cgi/content/full/76/3/675

Multiple Bone Fractures in an 8-Year-Old Child with Cow's Milk

Allergy and Inappropriate Calcium Supplementation

Giovanna Montia, Valentina Libanorea, Letizia Marinaroa, o

Lalab, o Minieroa, Francesco Savinoa

aFood Allergy Service, Department of Pediatric and Adolescence

Science, and

bDivision of Pediatric Endocrinology, Regina Margherita Children's

Hospital, Turin, Italy

Abstract

The case of an 8-year-old boy with severe bone mass reduction and 4

fractures as a result of an unsupervised diet established to treat

cow's milk allergy is presented. Endocrine, genetic and orthopedic

pathologies were excluded. While vitamin D intake had always been

appropriate, his calcium intake had been inadequate for many years.

This clinical report suggests that both vitamin D and calcium

supplementation are necessary when a cow's milk protein-free diet is

prescribed, even when a hypo- or non-allergenic formula is provided.

Copyright © 2007 S. Karger AG, Basel

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF & ArtikelNr=10414\

\

2 & Ausgabe=233284 & ProduktNr=223977 & filename=104142.pdf

http://content.karger.com/produktedb/produkte.asp?typ=fulltext & file=000104142

=====

[Guest guest]

Ah, yes. I forgot that even though our doc said we could do soy, I'd learned

enough to want to try COMPLETELY dairy/soy-free for the 3 week trial in which

we're about to embark (and over Christmas break - ugh!).

We just started a probiotic and have had the worst week ever (SI issues popping

up, speech regressing, hyperactivity, rough sleeping)- but the eczema & poop are

improving - Doc said that it probably means it's working to rid the body of all

the bad bacteria/toxins and he's just reacting to that process.

We also identified a gluten intolerance (and low carnitine - just like the

malabsorption study), but want to isolate each change so we're starting with

dairy, then carnitine, then gluten.

Thanks for the info below. Any additional info you or anyone reading this can

find time to send is great. I'm scouring the net tonight trying to drum up as

much info so I can create a grocery list for Sat/Sun trip. Just have no idea

what decent brands are. really only eats cheese, milk, bread, pancakes,

crackers/chips/cookies, fruit. He won't eat meat (except when well hidden) and

won't give in to veggies except for carrots. I'm worried about how in the heck

we're going to get food into him.

Thanks to all and keep the info coming!

Sharon

svraciu@...

[Guest guest]

Our daughter has been dairy-free for over a year. We started when she was about

2.5 yrs. Here are some suggestions...

1. Find a calcium and vitamin D supplement that you are happy with. Check with

your ped regarding dosage. Calcium citrate is better than carbonate.

2. We like Rice Dream as a milk substitute. Plain and fortified. Like juice,

kids should not drink too much. Water is a better beverage. But it is is good in

recipes and as a once-a-day drink, or with cereal.

3. I like using avocado a lot. I feel it replaces the fats from cheese with

better brain fats. My daughter eats it cut in chunks. Yum.

4. If you rely on a lot of dairy in your meals, try rethinking your meals in

general. Olive oil is a good high-heat oil. Canola is good in baking. We also

like peanut and almond oil.

5. If you feel comfortable with the allergy issue, bring nuts and seeds in.

They add a lot of flavor and healthier fats. Pumpkin seeds and avocado added to

salad almost makes a meal.

6. We eat pretty simply: grilled chicken, steamed veggies, potatoes, ...We find

herbs and garlic to be a good substitute for dairy.

Best of luck,

[Guest guest]

Hi Sharon,

I recommend you get this book. http://thegluteneffect.com/

My nutritionist wrote it and it explains about gluten intlerance in particular,

but this often comes with casein intolernace plus soy and others. if you do them

separately, you will NEVER understand what is going on, and will not see the

eczemas go away, behaviors improve, speech etc. basically as long as he is

reacting to something tha tis affecting him neurologically and immune system

wise, you won't know what it is exactly and draw the wronmg conclusions. Even

DANs are not nutritionists and they do not relaly understand how to do it.

Eliminating milk for just a few weeks will tell you nothing if he also has other

intolernaces as you suspect.

You need to do a full elimination diet. the gluten one is particularly tricky as

it doesn't always show up, my daughter showed intolerance to casein but not

gluten--intrestingly enough, however given nher family history, autoimmune and

neurological profile, the fact that the bloode work doe snot show gluten

intolernace is a limitation of the tests only--even the allergist agreed with me

and he was a mainstream allergist. Her IGg was rather low--he recommended a

metabolic specialist--but the DAn diet supplenment protocol we ar eunder is

working just fine--I do not see what a metabolic specialist could do to improve

on this and I also have not found a local metabolic specialist I feel

understands the gut/brain connection the way the DANs and holistic nutritionists

do. I'll keep searching as I do not want to overlook anything, but as I said,

for now we're doing good, she's progressing wonderfully and while genetci

testing could revela more--it can also

confuse things. they now have identified 3 genes responsible for gluten

intolernace. But just because you don't have one of these 3 genes does NOT mean

you do not ahve any one of a thousand others that could potentially be

implicated in gluten intolernace --but they haven't identified them all yet.

before they found all these 3, I'm sure� alot of people were told they were

just fine and could eat gluten because they did not have the ONE doctors knew

about at the time. So all these things need to be understood in the context of

our limited knowledge and looking at family history of

metabolic/autoimmune/neurological problems is generally the best indicator of

what you cna expect in your child when it comes to this gut/brain connection.

And yes, the probiotic could be affecting him if there have been some problems

with behavior/speech etc.--it is known as the yeast die off--they should subside

in a while. All these kids have opportunistic infections that get stirred up at

various times and yeast die off is notoripous for causing bad behavior and sleep

disturbances etc--it is the toxicity from the yeast when it is killed off by the

good bacteria--it is in a sense more toxic than the yeast itself--yeast/yeast

die-off toxins are a well known neurotoxin whose DNA mimics that of the gluten

peptides and it is one of the pathways by which the yest and the gluten both

affect autoimmune/ neurological functioning.

Anyway, I strongly recommend this book. it is written for the lay person, so

there's a lot more you can read beyond this--journal articles etc. But this is a

nice overall summary and step by step what to do if you suspect food

intolernaces. according to my neurologists and the research he cites here, over

40% of the world population should NOT be eating gluten-- even if the problems

are not apparent from day one---most gluten intolerna tpeople are identified

later in their livves and not all are Celiac BTW--the intolerance is almost a

separate issue, it is not so much the intestinal lining that is affected but due

to intestinal permeability enough to let larger patrticles of gluten and other

foods into the blood sytream certain genes are triggered and the body starts an

autoimmune process that cannot be reversed. This doe snot necessarily happen

when the person is first exposed to gluten, it can take years for the

intolernace to develop--some kids have

the projectile vomiting from their mother's milk that contains gluten

particles--mother is often if not always intolernat too but her body reactions

ahve not caught up yet--but this is why the gluten is NOT being digested and

gets into the milk. Sooner or later everyone in the family --well almost gets

autoimmune and neurological issues that can be traced to the gluten intolerance

even if NO DIGESTIVE problems are obvious.

This was our mistake, we were watching out only for digestive problems and

wrongly concluded that gluten/dairy were OK for her, but that was when her

eczemas and scalp psoriasis started, her lack of speech became very apparent, i

would almost say she regressed because at 1 year prior to wheat/dairy in her

diet she had two words and was not babbling normally but was free of autoimmune

and behavioral problems that started later. Anyway, get the book. it take son

average 10--13 years for most gluten intolerant people to get properly diagnosed

as gluten intolerant--and that's oif they ar e lucky.� Most

Gastroenterologists do not get this, but bowel disorders are food related,

inflammation, Chron's disease IBS etc all that--gluten is almost always a

culprit, but if this was the only problem it would be OK--the problem is the

autoimmune/neurological and endocrine damage over time.

Take care,

Elena

[Guest guest]

Sharon, forgot to mention: the secret to getting the calcium from the bones in

the spoup is the apple cider vinegar that allows it to seep out and enrich the

broth. One tablespoon per quart of liquid, and again, let is sit� and simmer

for a LOOOOONG time, plan on eating it the next day. Most healthy. Type into

google Winston price and Nourishing Traditions bone broth soup and you'll get

more details but the vinegar and simmering time, as well as the bones just

sitting there in the liquid make it so nourishing and calcium rich.

Elena

[Guest guest]

Hi Sharon... wow... how similar our situations are again.

I just got back from the grocery store with two boxes of Rice Dream to replace

the goats milk we were using. I also found a nut-free peanut butter substitute.

I just got my son's food allergy/sensitivity test back yesterday. Of 95 foods

tested (ELISA test) 6 came back as AVOID. 5 of them were dairy (casein, cows

milk, cheeses) and the 6th was beef. Egg and peanut and citrus also came up

with higher values so we are avoiding those too.

If you remember, I had noticed an improvement in my son when I switched from

cows milk to goats milk. The testing has now confirmed my suspicions and we are

going to try and go completely dairy/beef/egg/peanut/citrus-free for the next

month. We are cutting out goat milk as well. As you said, not great timing -

right over Christmas!

I was going to ask the group for suggestions and advice with this too but I was

happy to see that my question is already posted! I have some literature from

our Naturopath about how to address the dietary calcium issue but I'm looking

for more ideas.

Gluten came back as low-moderate so we are keeping that in for now, but, like

Elena said, the testing often won't catch everything so.... maybe in the future

we'll cut that out as well, but it's too daunting at the moment for me. We're

already going to have to make major changes to what we eat.

Carnitine is something we want to try in the near future too (Tiernan's numbers

were right at the lower end of the 'normal' range) but we're going to try the

diet changes first.

Keep us updated on how it's going. I'll do the same.

~Jen (mom to Tiernan)

>

> Our doctor just suggested we do a dairy free trial for my 2.5 yr old son with

verbal apraxia. (we learned there is a definite allergy).

>

> Does anyone have guidance, info, resources, etc on how to get started with

dairy free? I've done a short search online and didn't find much yet. I think

I have a list of dairy-filled ingredients, but any recos on recipes, decent

tasting brands, etc. is much appreciated.

>

> Thanks in advance and Happy Holidays,

>

> Sharon

>

[Guest guest]

So many similarities!!

I am SOOO hoping that milk elimination is just short term. 's milk RAST

came back as moderate and Celiac panel showed a positive IgG but all the IgA

results were negative for gluten. So, given that he has severe eczema (a lot of

the time), is scratching his head and rear a ton (among other things) we thought

we at least had to try dairy free for a while - and eventually add in a gluten

free test.

I also have a 7mo baby so the last thing I want to do is make mealtimes any more

complicated than they already are with a picky 2 yr old and baby w/reflux,

however I have to at least try to rid my little guy of his miserable itching

(and hard pooh).

We just started a probiotic over the last week and WOW. Automatically we saw a

change in that his pooh softened, however he went for an awful tailspin and at

the end of a full week he is just now coming out of it (I hope). Loss of

articulation, hyperactivity, aggressive behavior, up all night, crying fits,

whining/defiance all day and MAJOR sensory issues (which we've never seen in him

before!). He was NOT our kid - and it was scary to see. I've heard this can be

a " bacteria or yeast die off " so I'm hoping that is a good thing for him. If it

doesn't get better I'm going to have to reevaluate what we're doing there. We

were hoping a probiotic would help aide digestion enough that we wouldn't have

to try milk/gluten free, but I think it's still going to be worth a shot.

Even though is on the milder side of verbal apraxia, I'm dieing to try the

nutriveda and am thinking of ordering it for myself to give it a test go. My

doc here says she can recommend me to someone who knows more about auyerveda

(sp?) so I might go that route, but I need to take it one thing at a time.

Keep me updated on your journey - what's working, what's not. I'll do the same.

As we figure out the probiotics I'll let you know if and when we see positive

results, although his eczema has already improved -not sure if there's a

connection?

Good luck.

Oh yea, and , I don't think I can bring myself to gnaw and lick on oxtail

bones (or whatever it was) just yet. I was giggling as I read your post

imagining our family sitting 'round the dinner table for a nice oxtail bone

smorgasbourg. So funny. But, if it works then great! Just not there yet

(mentally at least). Thanks for the info on any and ALL ways to ensure our kids

are getting the nutrition they need. And, I suppose if it was necessary to help

my little man, I'd find a way to be the best darn oxtail soup chef in town!

Whatever it takes for our babies...right?

Sharon

[Guest guest]

Sharon--the baby with reflux caught my eye here. Reflux for babies oftne means

intolerance to foods the mom is eating--if breastfed--or to the cow milk if

formulka fed.  Dairy is a big one and all these food intolerances do run in

families so watch your baby's reflux--see if it happens if you switch formulas.

reflux if often enough is NOT normal.  it ican eb absolutely debilitating int he

kids who do the down right projectile vomiting, but even just spit up, if often

enough it cna signal food intolerance and if formula fed than dairy is a most

likely culprit--can also be even if breast fed--mom's milk has dairy peptides

and baby's body reacts. Not to worry you but you should know in these cases the

mom herself is often intolerant to dairy too. So it's  really potentially more

complex than you think. it's not something to just try for a little while, you

need to do it the right way---or it's not even worth the trouble since you may

in fact draw the

wrong conclusions and then it is worst than no information, it can be the

" wrong " information.  So read up on how to do an appropriate elimination diet.

it's really not as hard as you'd think.

As for the little one, repea=ted reflux can indicate problems with

formula/breast milk--can lead to eczemas and other autoimmune issues--astham is

another plus psoriasis and problems regulating sugar etc--which makes for bad

behaviors cranky baby, plus malabsorptions galore from fatty acids to Co Q10 and

folate and B12 and iron and so on--plus opportunistic infections once the immune

system is weakened and intestines become permeable.

So it's not something to take lightly or to dismiss because most Western

mainstream doctors do not know how to treat--it's just not part of their

training so for them it doesn't exist until it meets the classical text book

definitions of severe reflux, wasting away etc.,

So some formulas are better then others, what ever you do do NOT introduce soy

formula--it is the worst thing you can do for your child, but there are options

do not despair, you just need to find a pediatrician who understands these

things.

Elena

From: vraciup <svraciu@...>

Subject: [ ] Re: Milk / Dairy Free Diet - NEed help

Date: Thursday, December 17, 2009, 9:07 PM

So many similarities!!

I am SOOO hoping that milk elimination is just short term.  's milk RAST

came back as moderate and Celiac panel showed a positive IgG but all the IgA

results were negative for gluten.  So, given that he has severe eczema (a lot of

the time), is scratching his head and rear a ton (among other things) we thought

we at least had to try dairy free for a while - and eventually add in a gluten

free test.

I also have a 7mo baby so the last thing I want to do is make mealtimes any more

complicated than they already are with a picky 2 yr old and baby w/reflux,

however I have to at least try to rid my little guy of his miserable itching

(and hard pooh). 

We just started a probiotic over the last week and WOW.  Automatically we saw a

change in that his pooh softened, however he went for an awful tailspin and at

the end of a full week he is just now coming out of it (I hope).  Loss of

articulation, hyperactivity, aggressive behavior, up all night, crying fits,

whining/defiance all day and MAJOR sensory issues (which we've never seen in him

before!).  He was NOT our kid - and it was scary to see.  I've heard this can be

a " bacteria or yeast die off " so I'm hoping that is a good thing for him.  If it

doesn't get better I'm going to have to reevaluate what we're doing there.  We

were hoping a probiotic would help aide digestion enough that we wouldn't have

to try milk/gluten free, but I think it's still going to be worth a shot.

Even though is on the milder side of verbal apraxia, I'm dieing to try the

nutriveda and am thinking of ordering it for myself to give it a test go.  My

doc here says she can recommend me to someone who knows more about auyerveda

(sp?) so I might go that route, but I need to take it one thing at a time.

Keep me updated on your journey - what's working, what's not.  I'll do the

same.  As we figure out the probiotics I'll let you know if and when we see

positive results, although his eczema has already improved -not sure if there's

a connection?

Good luck. 

Oh yea, and , I don't think I can bring myself to gnaw and lick on oxtail

bones (or whatever it was) just yet.  I was giggling as I read your post

imagining our family sitting 'round the dinner table for a nice oxtail bone

smorgasbourg.  So funny.  But, if it works then great!  Just not there yet

(mentally at least).  Thanks for the info on any and ALL ways to ensure our kids

are getting the nutrition they need.  And, I suppose if it was necessary to help

my little man, I'd find a way to be the best darn oxtail soup chef in town! 

Whatever it takes for our babies...right?

Sharon

------------------------------------

[Guest guest]

Wow... I really hope that the probiotic-induced tailspin sorts itself out. We

didn't notice any negative changes when we started the probiotic - just some

improvement in energy although we added the probiotic a few weeks after

switching to goats milk and I think it was the milk switch rather than the

probiotic that made the difference... but I don't know. It's hard when you're

trying new things and your kid is continuing to develop.... it's hard knowing

exactly what is working. My little guy doesn't have trouble with constipation.

We have the opposite problem most of the time actually, but that's improved

lately and I'm hoping that it will improve even more by cutting out the reactive

foods. I'm going to keep an eye on the keratosis pilaris (skin condition) to

see if it starts to improve now as well.

It just amazes me how many different scenarios there are. Our common connection

on this board is apraxia, there are so many other things that vary. But also so

many things that are common (hypotonia, metabolic issues, digestive and skin

problems, etc.). That's why I like visiting here - to hear about all the

different things that work for people. To get ideas. To (carefully!) see if

some of them might apply to my son's situation.

~Jen (mom to Tiernan)

>

> So many similarities!!

>

> I am SOOO hoping that milk elimination is just short term. 's milk RAST

came back as moderate and Celiac panel showed a positive IgG but all the IgA

results were negative for gluten. So, given that he has severe eczema (a lot of

the time), is scratching his head and rear a ton (among other things) we thought

we at least had to try dairy free for a while - and eventually add in a gluten

free test.

>

> I also have a 7mo baby so the last thing I want to do is make mealtimes any

more complicated than they already are with a picky 2 yr old and baby w/reflux,

however I have to at least try to rid my little guy of his miserable itching

(and hard pooh).

>

> We just started a probiotic over the last week and WOW. Automatically we saw

a change in that his pooh softened, however he went for an awful tailspin and at

the end of a full week he is just now coming out of it (I hope). Loss of

articulation, hyperactivity, aggressive behavior, up all night, crying fits,

whining/defiance all day and MAJOR sensory issues (which we've never seen in him

before!). He was NOT our kid - and it was scary to see. I've heard this can be

a " bacteria or yeast die off " so I'm hoping that is a good thing for him. If it

doesn't get better I'm going to have to reevaluate what we're doing there. We

were hoping a probiotic would help aide digestion enough that we wouldn't have

to try milk/gluten free, but I think it's still going to be worth a shot.

>

> Even though is on the milder side of verbal apraxia, I'm dieing to try

the nutriveda and am thinking of ordering it for myself to give it a test go.

My doc here says she can recommend me to someone who knows more about auyerveda

(sp?) so I might go that route, but I need to take it one thing at a time.

>

> Keep me updated on your journey - what's working, what's not. I'll do the

same. As we figure out the probiotics I'll let you know if and when we see

positive results, although his eczema has already improved -not sure if there's

a connection?

>

> Good luck.

>

> Oh yea, and , I don't think I can bring myself to gnaw and lick on oxtail

bones (or whatever it was) just yet. I was giggling as I read your post

imagining our family sitting 'round the dinner table for a nice oxtail bone

smorgasbourg. So funny. But, if it works then great! Just not there yet

(mentally at least). Thanks for the info on any and ALL ways to ensure our kids

are getting the nutrition they need. And, I suppose if it was necessary to help

my little man, I'd find a way to be the best darn oxtail soup chef in town!

Whatever it takes for our babies...right?

>

> Sharon

>

[Guest guest]

Sharon I follow my son Tanner very carefully and watch for regressions or surges

to best know if I'm on the right track.

You wrote that since you started the probiotic " Loss of

articulation, hyperactivity, aggressive behavior, up all night, crying fits,

whining/defiance all day and MAJOR sensory issues (which we've never seen in him

before!). He was NOT our kid - and it was scary to see. "

Loss of articulation? I'd stop it immediately as to me you are getting strong

signs that this is negative from that alone!

My son Tanner for some reason does not do well on most probiotics either. The

only one that we seem to be able to get into him is the dairy kind but even with

that we don't always do -we tried Three Lac and he regressed on it. I don't

keep him on anything that he regressses on long enough to see all the changes

you are reporting however -except speak that I used for 2 weeks and that was a

nightmare -7 months to get him anywhere back to normal. Listen to your child's

regressions -I mean the only worse thing he could do at this point is...well I

don't want to say but I'd stop it. I'd say what you are seeing has to be worse

than sucking on bones from oxtail soup...after all my two friends said it's

delicious -let us know!

I know I have brought it up lots but I'm a huge fish oil and also now a

nutriiveda fan. So far nothing but incredible and positive on both.

=====

[Guest guest]

Jen you wrote

" > Carnitine is something we want to try in the near future too (Tiernan's

numbers were right at the lower end of the 'normal' range) but we're going to

try the diet changes first. "

Hi Jen if the carnitine is testing at the lower end of normal - please don't

wait to try diet changes first and take that serious. Is this the advice of a

medical doctor??? The following is why to take carnitine levels serious, how

rare they are, as well as a list of geneticists who specialize in metabolic

disorders

As a start here's a list of metabolic specialists

http://www.simd.org/Membership/publicListNames.asp?mode=geo

I know not as many geneticists that are metabolic specialists

(if you check the archives a few names are provided)

http://checksutterfirst.org/children/services/metabolic.cfm

CARNITINE DEFICIENCY testing and archive

Just a reminder that carnitine unlike the amino acid carnitine is

something to take serious. You may not see changes on or off

supplementation but this is typically rare and appears to be high in

this group out of those children tested.

Also just wanted to point out that me and many others here had the

blood draws ordered through our regular pediatrician and the labs done

through medical labs -and if tested low the child is put onto

prescription carnitine with a referral to a geneticist that specializes in

metabolic disorders. Try the basics which mean appropriate therapies for your

child and the oil therapy and in most cases that alone will create remarkable

surges and you can save your time and money for karate and swimming lessons

-maybe some hippo therapy or a much needed vacation for the family.

And in case it wasn't clear -if you go through your ped it can all be covered by

your insurance. My son's was.

Here's more on carnitine from an archive

Re: Levocarnatine

Is what you are using prescription?

" Certain levocarnitine products have been specifically approved by

the U.S. Food and Drug Administration for medical use and are

available only with your doctor's prescription. Other levocarnitine

products are sold without a prescription as food supplements and

should not be used to treat serious levocarnitine deficiency. "

http://www.drugs.com/cons/levocarnitine.html

Not much if anything may change in the tone or speech -but that's

not the reason to supplement with prescription carnotine. The

possible side effect of sudden death from carnotine deficiency

outweighs any side effect of levocarnitine. If not -I suggest you

take your child to a medical doctor; preferably a geneticist who

specializes in metabolic disorders and there have been a few posted

here as recommendations. How much do you know/were you informed

about carnotine deficiency?

In this group out of those that did blood draws there was an

alarmingly high number that tested low in carnotine which is

typically rare. Here are some archives -first from Tina who's

apraxic child was doing really well -but she like I did the blood

draws just to check. While Tanner tested normal -Landon tested low

in carnotine:

" Going to a geneticist that specializes in metabolic disorders would

be very helpful. My understanding from what I have read a biopsy

helps confirm mito disorders. Lab work is first though. The link

below might help you find more answers.

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/

United Mitochondrial Disease Foundation

Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it

was ran again and it was 76 again normal range 25-70. The geneticist

that specializes in metabolic disorders isn't concerned with his

Carnitine level being high. He did run a lab to see if it is coming

out in urine which is what would happen if it isn't being used up.

And he did run Carnitine again in Feb so it probably will be higher

than it was in Dec. We will probably have to adjust his dose.

Landon could come off Carnitine right now, but I thought it was

helping him some so the doctor said to continue. Regular blood test

should be done to check levels so dosing can be changed either

increased or lowered.

Here is an article that discusses Carnitine and CoQ10. It is a good

explanation, hope you all will take the time to read it from the top

to the bottom.

http://www.mdausa.org/publications/Quest/q61coq10.html

HTH,

Tina "

Some have suggested the better doctors in this area because

apparently there are not that many out there! Also while Kathy from

our group who I highly respect talks about an OTC brand -

highly advises against OTC for carntine if a child tests low. And

for those that don't know -do not supplement with carnotine unless

your pediatrician orders the blood draws that we talk about here

first. You want to know prior to supplementation if your child is

deficient.

More archives below

Unlike other supplements -a carnitine deficiency could come with the

most severe consequence over time since carnitine deficiency is

associated with sudden death. The good news is that at least you'll

know early -most people don't find out their child was deficient in

carnitine until it's too late. (we all heard about that football

player in HS with the sudden heart attack) Also how else are you

going to guarantee that not only are you going to give and keep

giving your child this supplement which they 'have' to take -but

that your child will know to monitor with his doctor and continue to

supplement if needed perhaps the rest of his or her life? This is

why you want to investigate this aggressively with a geneticist.

There are a few who have been recommended here as I understand that

there are not yet enough geneticist who specialize in metabolic or

mitochondrial disorders.

If found to have a carnitine deficiency, like your child, you would

want to take your child to a medical doctor that was knowledgeable

about what that means as this is not something to take lightly. It's

good to get the prescription form of carnitine so you know the

quality, correct dosage -overseen by an MD. Also once tested low in

caritine you would also want to discover why by taking your child to

a geneticist who specializes in metabolic disorders. I believe based

on the findings of blood analysis from this group that any child

going ahead diagnosed with apraxia or autism should be tested for a

carnitine deficiency. As you'll be hearing more about this soon from

Dr. -the numbers of children that tested low in this

amino acid were off the charts. Typically it's a rare disorder

affecting one in 20 to 40,000. This was also the reason I took my

son Tanner for all the blood testing -to test for this one deficiency

since it can be so severe if left untreated.

Here's some quotes from Dr. who is head of fellowship

research at her hospital -a pediatrician -and mom to an apraxic child

who also tested to be carnitine deficient. Below this is an archive

on this which includes all the testing which you can share with your

child's medical doctor to secure the testing. We did this with our

son's " regular " pediatrician and all the blood word was covered by

BC/BS.

" Impact of carnitine supplements may not be clinically obvious - but

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

dilated weak heart, and when it approaches 10-20% of normal, sudden

death can

occur. Carnitine is essential for normal cell/mitochondria function.

It

allows fatty acids to get transported into the mitochondria (or the

battery

of the cell). Major problems if this is not working properly. So you

may be

getting benefits that you don't obviously see. One does not want to

run

around with a severe carnitine deficiency and not treat it.

Carnitine and Carnosine are 2 TOTALLY different supplements.

Carnitine plays a key role in transferring long-chain fatty acids

into the mitochondria.

There has been some research done on carnoSine (amino acids

histidine and alanine), and carnaware has carnoSine + vit E + zinc.

There have been some preliminary studies that show benefit of

carnaware in autism and other speech disorders. There are many

members with personal experience with both carnosine and carnoware.

I suspect the vitamin E of carnoware is contributing to benefits,

based on what vit E alone can do.

Without sufficient CarniTine...the mitochondria (or

cell " batteries " ) don't run very well. There can be symptoms from

muscle weakness, heart problems to severe brain and metabolic

abnormalities and in some (rare) cases... to the extreme of sudden

death from carnitine deficiency...depending on how severe and the

exact cause.

I know very little about Carnosine...was planning to try it some

day, but then discovered vitamin E. Carnitine is harmless. If you

take too much, you will smell bad. Otherwise, harmless. It can cause

stomach upset, so should be taken with food. - "

Carnitine deficiency is typically rare -around 1 in 40,000. I don't

know if the deficiency your child has is considered severe or not but

either way I'd check it out. In this group out of the few that did

blood draws an alarmingly high number tested low in this amino acid

and that's concerning for a number of reasons. The main one is that

there may be no sign of a carnitine deficiency -but it can have

serious affects if left untreated. If discovered consider it a

blessing as most don't know about this deficiency until it's " too

late " and it's easily treated by prescription carnitine.

The suggestion is that if a child tests low on carnitine to take him

to a geneticist who is a metabolic specialist for a complete work-

up. There have been a few suggestions for particular MDs posted

here. Many of us including me took our child to get tested because

we respect Dr. who is a researcher/pediatrician and

mom to a 3 year old apraxic child. Many of us have children that are

considered doing " well " today -so in other words no sign that there

was any underlying issue. Besides -most don' consider apraxia a

disorder that has any serious health tone to it.

We were fortunate that Dr. is part of this group. I

am also fortunate in that my son Tanner tested normal -but I

recommend this testing for all here if the diagnosis is apraxia or

autism. I had the tests ordered through Tanner's pediatrician and

all was covered by our BC/BS insurance. Just share all the

information with your pediatrician. And , since your child

already tested low in carnitine -I'm sure it won't be an issue to

secure a referral to a specialist.

Below are a few archives on this -but there's much in the archives

here and all over the internet. Just search " carntine deficiency

also suggested here and in an email to me that if a child

does need to supplement with carnitine -that you don't just buy a

health food brand because " Carnitine. You don't want to just buy it

at the health food store. The forms they sell over the counter can

actually be harmful due to additives and the way it is made. L-

Carnitine that is definitely safe is only available in prescription

form "

and from an archive message from :

" Its really because you never know what you are getting...while

carnitor is regulated. Plus it gets covered by insurance...an added

benefit, as all these supplements start to add up and are fairly

costly.

My research background is in arginine metabolism, and I am involved

in several arginine clinical trials for diseases like sickle cell

disease and thalassemia. I never tell people to buy off the shelf

because you REALLY don't know what you are buying. None of the over

the counter supplements are regulated. There are fillers etc that

may have ingredients that are not necessily OK. So I buy my

arginine supplements for trials through distributers that can

demonstrated purity to > 99.99%.

But it is really important to get a carnitine level prior to

supplementing. Not that carnitine is harmful, even if you have

normal levels...but if your child has a carnitine deficiency...it

should be worked up further. - "

" No harm in supplements (ie very safe - if you give to much one

starts to smell fishy - ironically) and yes you could just start

supplementing without any health concerns. But honestly - a

carnitine deficiency is something you would want to identify first -

before supplementing. The results from bloodwork will not be

helpful otherwise once supplementing - since it could be normal.

One doesn't just have a carnitine deficiency for no reason. This is

something that should be worked up - aggressively, medically. So I

would seriously consider getting him checked prior to supplements "

and from the same email another clip:

" The benefits of carnitine (like those on the heart) - may not be

obvious (in

speech and muscle tone -the sort of thing we are looking for) and you

wouldn't

know you were making a difference. The carnitine deficiency that

ph had

could have led to serious cardiac complications over the next few

years if not

picked up. "

Information about vitamin E and blood draws you may want to consider

with your child's pediatrician from Dr. who is a

pediatrician and mom to an apraxic preschooler

R. , MD

Attending Physician

Director of Fellowship Research

Department of Emergency Medicine

Children's Hospital & Research Center at Oakland

747 52nd Street

Oakland, CA 94609

I really can't " advice " anyone. A lot of this new info is just that -

very new, and totally anecdotal. Your child is very young to make the

diagnosis of apraxia - so it is important for you to get a good

neurodevelopmental ped eval to help you set off in the right

direction, since intervention does differ depending on the diagnosis.

But just because the info isn't published...it doesn't make it

invalid. But all this needs to be confirmed in a clinical trial

before there will be broader applications and true recommendations

made.

````````````

=====

[Guest guest]

Yeah, it's the advice of a medical doctor - our pediatrician. I was the one to

request that carnitine be tested in June after reading that quite a number of

apraxic kids are deficient in it. The doctor called to say that Tiernan's

bloodwork came back normal. So I was relieved. Until I asked to see the

numbers at our next appointment. Tiernan's " Free Carnitine " was 31 (normal

range is 28-69) and " Total Carnitine " is 35 (normal range is 37-89). So his

total carnitine levels are actually lower than the reference range. When I

questioned our doctor on this he said that the " total " number didn't really

matter, that it was the " free " number that mattered. (I felt like saying " well

there must be a reason why they test it! " ) When I pushed further saying that I

thought that the numbers looked low I was told " wait for the appointment with

the neurologist " . Well we were referred for an appointment with a neurologist

over 3 months ago now and still don't even have an appointment. I want to see a

metabolic specialist too but have been told that the wait time for that is

extremely long and without some sort of glaring labwork numbers pointing at a

metabolic disorder I'm unlikely to get referred.. I'm in Canada.... the wait

times are bad.

Very very very frustrating. Thank you for taking the time to find things in the

archives . I've had a look there myself as well.

~Jen (mom to Tiernan)

>

> Jen you wrote

> " > Carnitine is something we want to try in the near future too (Tiernan's

numbers were right at the lower end of the 'normal' range) but we're going to

try the diet changes first. "

>

> Hi Jen if the carnitine is testing at the lower end of normal - please don't

wait to try diet changes first and take that serious. Is this the advice of a

medical doctor??? The following is why to take carnitine levels serious, how

rare they are, as well as a list of geneticists who specialize in metabolic

disorders

>

> As a start here's a list of metabolic specialists

> http://www.simd.org/Membership/publicListNames.asp?mode=geo

>

> I know not as many geneticists that are metabolic specialists

> (if you check the archives a few names are provided)

> http://checksutterfirst.org/children/services/metabolic.cfm

>

> CARNITINE DEFICIENCY testing and archive

>

>

> Just a reminder that carnitine unlike the amino acid carnitine is

> something to take serious. You may not see changes on or off

> supplementation but this is typically rare and appears to be high in

> this group out of those children tested.

>

> Also just wanted to point out that me and many others here had the

> blood draws ordered through our regular pediatrician and the labs done

> through medical labs -and if tested low the child is put onto

> prescription carnitine with a referral to a geneticist that specializes in

metabolic disorders. Try the basics which mean appropriate therapies for your

child and the oil therapy and in most cases that alone will create remarkable

surges and you can save your time and money for karate and swimming lessons

-maybe some hippo therapy or a much needed vacation for the family.

>

> And in case it wasn't clear -if you go through your ped it can all be covered

by your insurance. My son's was.

>

>

> Here's more on carnitine from an archive

>

> Re: Levocarnatine

>

>

> Is what you are using prescription?

> " Certain levocarnitine products have been specifically approved by

> the U.S. Food and Drug Administration for medical use and are

> available only with your doctor's prescription. Other levocarnitine

> products are sold without a prescription as food supplements and

> should not be used to treat serious levocarnitine deficiency. "

> http://www.drugs.com/cons/levocarnitine.html

>

> Not much if anything may change in the tone or speech -but that's

> not the reason to supplement with prescription carnotine. The

> possible side effect of sudden death from carnotine deficiency

> outweighs any side effect of levocarnitine. If not -I suggest you

> take your child to a medical doctor; preferably a geneticist who

> specializes in metabolic disorders and there have been a few posted

> here as recommendations. How much do you know/were you informed

> about carnotine deficiency?

>

> In this group out of those that did blood draws there was an

> alarmingly high number that tested low in carnotine which is

> typically rare. Here are some archives -first from Tina who's

> apraxic child was doing really well -but she like I did the blood

> draws just to check. While Tanner tested normal -Landon tested low

> in carnotine:

>

> " Going to a geneticist that specializes in metabolic disorders would

> be very helpful. My understanding from what I have read a biopsy

> helps confirm mito disorders. Lab work is first though. The link

> below might help you find more answers.

>

> http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/

> United Mitochondrial Disease Foundation

>

> Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it

> was ran again and it was 76 again normal range 25-70. The geneticist

> that specializes in metabolic disorders isn't concerned with his

> Carnitine level being high. He did run a lab to see if it is coming

> out in urine which is what would happen if it isn't being used up.

> And he did run Carnitine again in Feb so it probably will be higher

> than it was in Dec. We will probably have to adjust his dose.

> Landon could come off Carnitine right now, but I thought it was

> helping him some so the doctor said to continue. Regular blood test

> should be done to check levels so dosing can be changed either

> increased or lowered.

>

> Here is an article that discusses Carnitine and CoQ10. It is a good

> explanation, hope you all will take the time to read it from the top

> to the bottom.

> http://www.mdausa.org/publications/Quest/q61coq10.html

> HTH,

> Tina "

>

> Some have suggested the better doctors in this area because

> apparently there are not that many out there! Also while Kathy from

> our group who I highly respect talks about an OTC brand -

> highly advises against OTC for carntine if a child tests low. And

> for those that don't know -do not supplement with carnotine unless

> your pediatrician orders the blood draws that we talk about here

> first. You want to know prior to supplementation if your child is

> deficient.

>

> More archives below

>

>

> Unlike other supplements -a carnitine deficiency could come with the

> most severe consequence over time since carnitine deficiency is

> associated with sudden death. The good news is that at least you'll

> know early -most people don't find out their child was deficient in

> carnitine until it's too late. (we all heard about that football

> player in HS with the sudden heart attack) Also how else are you

> going to guarantee that not only are you going to give and keep

> giving your child this supplement which they 'have' to take -but

> that your child will know to monitor with his doctor and continue to

> supplement if needed perhaps the rest of his or her life? This is

> why you want to investigate this aggressively with a geneticist.

> There are a few who have been recommended here as I understand that

> there are not yet enough geneticist who specialize in metabolic or

> mitochondrial disorders.

>

> If found to have a carnitine deficiency, like your child, you would

> want to take your child to a medical doctor that was knowledgeable

> about what that means as this is not something to take lightly. It's

> good to get the prescription form of carnitine so you know the

> quality, correct dosage -overseen by an MD. Also once tested low in

> caritine you would also want to discover why by taking your child to

> a geneticist who specializes in metabolic disorders. I believe based

> on the findings of blood analysis from this group that any child

> going ahead diagnosed with apraxia or autism should be tested for a

> carnitine deficiency. As you'll be hearing more about this soon from

> Dr. -the numbers of children that tested low in this

> amino acid were off the charts. Typically it's a rare disorder

> affecting one in 20 to 40,000. This was also the reason I took my

> son Tanner for all the blood testing -to test for this one deficiency

> since it can be so severe if left untreated.

>

> Here's some quotes from Dr. who is head of fellowship

> research at her hospital -a pediatrician -and mom to an apraxic child

> who also tested to be carnitine deficient. Below this is an archive

> on this which includes all the testing which you can share with your

> child's medical doctor to secure the testing. We did this with our

> son's " regular " pediatrician and all the blood word was covered by

> BC/BS.

>

> " Impact of carnitine supplements may not be clinically obvious - but

> could be

> helping strengthen heart muscle. Low levels are associated with a

> floppy

> dilated weak heart, and when it approaches 10-20% of normal, sudden

> death can

> occur. Carnitine is essential for normal cell/mitochondria function.

> It

> allows fatty acids to get transported into the mitochondria (or the

> battery

> of the cell). Major problems if this is not working properly. So you

> may be

> getting benefits that you don't obviously see. One does not want to

> run

> around with a severe carnitine deficiency and not treat it.

>

> Carnitine and Carnosine are 2 TOTALLY different supplements.

> Carnitine plays a key role in transferring long-chain fatty acids

> into the mitochondria.

>

> There has been some research done on carnoSine (amino acids

> histidine and alanine), and carnaware has carnoSine + vit E + zinc.

> There have been some preliminary studies that show benefit of

> carnaware in autism and other speech disorders. There are many

> members with personal experience with both carnosine and carnoware.

> I suspect the vitamin E of carnoware is contributing to benefits,

> based on what vit E alone can do.

>

> Without sufficient CarniTine...the mitochondria (or

> cell " batteries " ) don't run very well. There can be symptoms from

> muscle weakness, heart problems to severe brain and metabolic

> abnormalities and in some (rare) cases... to the extreme of sudden

> death from carnitine deficiency...depending on how severe and the

> exact cause.

>

> I know very little about Carnosine...was planning to try it some

> day, but then discovered vitamin E. Carnitine is harmless. If you

> take too much, you will smell bad. Otherwise, harmless. It can cause

> stomach upset, so should be taken with food. - "

>

>

>

> Carnitine deficiency is typically rare -around 1 in 40,000. I don't

> know if the deficiency your child has is considered severe or not but

> either way I'd check it out. In this group out of the few that did

> blood draws an alarmingly high number tested low in this amino acid

> and that's concerning for a number of reasons. The main one is that

> there may be no sign of a carnitine deficiency -but it can have

> serious affects if left untreated. If discovered consider it a

> blessing as most don't know about this deficiency until it's " too

> late " and it's easily treated by prescription carnitine.

>

> The suggestion is that if a child tests low on carnitine to take him

> to a geneticist who is a metabolic specialist for a complete work-

> up. There have been a few suggestions for particular MDs posted

> here. Many of us including me took our child to get tested because

> we respect Dr. who is a researcher/pediatrician and

> mom to a 3 year old apraxic child. Many of us have children that are

> considered doing " well " today -so in other words no sign that there

> was any underlying issue. Besides -most don' consider apraxia a

> disorder that has any serious health tone to it.

>

> We were fortunate that Dr. is part of this group. I

> am also fortunate in that my son Tanner tested normal -but I

> recommend this testing for all here if the diagnosis is apraxia or

> autism. I had the tests ordered through Tanner's pediatrician and

> all was covered by our BC/BS insurance. Just share all the

> information with your pediatrician. And , since your child

> already tested low in carnitine -I'm sure it won't be an issue to

> secure a referral to a specialist.

>

> Below are a few archives on this -but there's much in the archives

> here and all over the internet. Just search " carntine deficiency

>

> also suggested here and in an email to me that if a child

> does need to supplement with carnitine -that you don't just buy a

> health food brand because " Carnitine. You don't want to just buy it

> at the health food store. The forms they sell over the counter can

> actually be harmful due to additives and the way it is made. L-

> Carnitine that is definitely safe is only available in prescription

> form "

>

> and from an archive message from :

>

> " Its really because you never know what you are getting...while

> carnitor is regulated. Plus it gets covered by insurance...an added

> benefit, as all these supplements start to add up and are fairly

> costly.

>

> My research background is in arginine metabolism, and I am involved

> in several arginine clinical trials for diseases like sickle cell

> disease and thalassemia. I never tell people to buy off the shelf

> because you REALLY don't know what you are buying. None of the over

> the counter supplements are regulated. There are fillers etc that

> may have ingredients that are not necessily OK. So I buy my

> arginine supplements for trials through distributers that can

> demonstrated purity to > 99.99%.

>

> But it is really important to get a carnitine level prior to

> supplementing. Not that carnitine is harmful, even if you have

> normal levels...but if your child has a carnitine deficiency...it

> should be worked up further. - "

>

> " No harm in supplements (ie very safe - if you give to much one

> starts to smell fishy - ironically) and yes you could just start

> supplementing without any health concerns. But honestly - a

> carnitine deficiency is something you would want to identify first -

> before supplementing. The results from bloodwork will not be

> helpful otherwise once supplementing - since it could be normal.

> One doesn't just have a carnitine deficiency for no reason. This is

> something that should be worked up - aggressively, medically. So I

> would seriously consider getting him checked prior to supplements "

> and from the same email another clip:

> " The benefits of carnitine (like those on the heart) - may not be

> obvious (in

> speech and muscle tone -the sort of thing we are looking for) and you

> wouldn't

> know you were making a difference. The carnitine deficiency that

> ph had

> could have led to serious cardiac complications over the next few

> years if not

> picked up. "

>

> Information about vitamin E and blood draws you may want to consider

> with your child's pediatrician from Dr. who is a

> pediatrician and mom to an apraxic preschooler

>

> R. , MD

> Attending Physician

> Director of Fellowship Research

> Department of Emergency Medicine

> Children's Hospital & Research Center at Oakland

> 747 52nd Street

> Oakland, CA 94609

>

>

> I really can't " advice " anyone. A lot of this new info is just that -

> very new, and totally anecdotal. Your child is very young to make the

> diagnosis of apraxia - so it is important for you to get a good

> neurodevelopmental ped eval to help you set off in the right

> direction, since intervention does differ depending on the diagnosis.

> But just because the info isn't published...it doesn't make it

> invalid. But all this needs to be confirmed in a clinical trial

> before there will be broader applications and true recommendations

> made.

> ````````````

>

> =====

>

[Guest guest]

Jen, our tests revealed the same thing and we're now supplementing with

Carnitine Synergy plus others, for the past 8 months with great success. We also

have dietary/metabolic autoimmune issues along with the neurological damage

manifested by apraxia with soft signs, which have all improved BTW on the

diet/supplements. Therapy helps too of course, but for the first few years just

doing therapy simply wasn't cutting it, she was too non-compliant and could

barely repeat anything,much less build a verbal communication system appropriate

for her age.  Since appropriate diet/supplements ahve been implemented, the

results are amazing, she is a completly different child and is now mainstreamed

in kindergarten.

 

We are seeing a biomediclaly trained pediatrician and for us the path seems

obvious now, but just a warning that most doctors, particularly neurologists do

not know much about metabolic processing--unles sthey make it their business and

ahve additional training--and even then--they may stick to the classical text

book symptoms and declare that a child with only slight deficitts is fine.  They

do not know or understand the cluster of metabolic/neurological problems present

in these children. Are you familiar with Dr. 's recommendations?  We're in

CA and met with soem of the doctors weshe recommended, learned some but mostly

that we need to learn a lot more--or not. We're on the right track with our

protocol and since she is progressing so well on the diet/supplements--MB12

shots and Co Q10, fatty acids + canitine, vitamin E plus other antioxidents

etc.--there is no reason to really press for further testing at thsi point--the

geneticist

recommended by Dr. did not seem too eager and felt he could not shed any

light--so we're just plunging ahead with the biomed and --we're seeign fantastic

results.  Just wanted to share our experiences with mainstream doctors on this

topic--they don't seem to know much and asking them about it eiter makes them

very defensive and they dismiss the causes, or if they are honest and sincerely

want to help the patient with no ego trip--they will recommend a metabolic

specialist---but as I said even these specialists amy not be familiar with the

cluster of slightly off test results present in many of our kids an dsince they

look for the classical mitochondrial dysfunction characteristics--they most of

the time say-- " sorry, no connection, child is fine. you worry too much

mom! "  --- I've heard that so much from doctors I trusted--and later regreted

having listened to them that I am very weary when I hear of anyone going to

them--when their child

exhibits similar symptoms not covered by their text books.

 

All the best,

Elena

[Guest guest]

Thanks Elena. I think the underlying cause of my son's apraxia is indeed

metabolic in nature so yep, I am very much paying attention to everything you

mention. I have read Dr. 's article on apraxia. That's great that you've

seen so much progress with the approach you are taking with your daughter. I

think I'm at the beginning of a similar journey.

~Jen (Mom to Tiernan)

>

> Jen, our tests revealed the same thing and we're now supplementing with

Carnitine Synergy plus others, for the past 8 months with great success. We also

have dietary/metabolic autoimmune issues along with the neurological damage

manifested by apraxia with soft signs, which have all improved BTW on the

diet/supplements. Therapy helps too of course, but for the first few years just

doing therapy simply wasn't cutting it, she was too non-compliant and could

barely repeat anything,much less build a verbal communication system appropriate

for her age.  Since appropriate diet/supplements ahve been implemented, the

results are amazing, she is a completly different child and is now mainstreamed

in kindergarten.

>  

> We are seeing a biomediclaly trained pediatrician and for us the path seems

obvious now, but just a warning that most doctors, particularly neurologists do

not know much about metabolic processing--unles sthey make it their business and

ahve additional training--and even then--they may stick to the classical text

book symptoms and declare that a child with only slight deficitts is fine.  They

do not know or understand the cluster of metabolic/neurological problems present

in these children. Are you familiar with Dr. 's recommendations?  We're in

CA and met with soem of the doctors weshe recommended, learned some but mostly

that we need to learn a lot more--or not. We're on the right track with our

protocol and since she is progressing so well on the diet/supplements--MB12

shots and Co Q10, fatty acids + canitine, vitamin E plus other antioxidents

etc.--there is no reason to really press for further testing at thsi point--the

geneticist

> recommended by Dr. did not seem too eager and felt he could not shed

any light--so we're just plunging ahead with the biomed and --we're seeign

fantastic results.  Just wanted to share our experiences with mainstream doctors

on this topic--they don't seem to know much and asking them about it eiter makes

them very defensive and they dismiss the causes, or if they are honest and

sincerely want to help the patient with no ego trip--they will recommend a

metabolic specialist---but as I said even these specialists amy not be familiar

with the cluster of slightly off test results present in many of our kids an

dsince they look for the classical mitochondrial dysfunction

characteristics--they most of the time say-- " sorry, no connection, child is

fine. you worry too much mom! "  --- I've heard that so much from doctors I

trusted--and later regreted having listened to them that I am very weary when I

hear of anyone going to them--when their child

> exhibits similar symptoms not covered by their text books.

>  

> All the best,

> Elena

>