Re: physical growth concern-Please advise

[Guest guest]

Hi,

Have you done Methylcobalimin injections (B 12)? My son went through a

period where he did not gain weight for two years. The shots helped him a

lot.

Haven

[Guest guest]

> We have been doing biomed, homeopathy and GFCF for over 5 years. My son has

made good progress and we are very thankful for that. My concern now is his

physical growth. He is going to be 8 years old in November but only weight 42

lbs.

My #3 was on the small side, and he started really growing when I added

carnitine and thyroid support.

Dana

[Guest guest]

I also have big concerns regarding my son's growth, but skeletal one. Ever since

he was born, his wrists are smaller than usual and his feet are so narrow that

it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can this be

a sign of fetal metal intoxication?

Any opinion would be highly appeciated.

 

 

 

From: danasview <danasview@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Friday, July 30, 2010, 9:47 AM

 

> We have been doing biomed, homeopathy and GFCF for over 5 years. My son has

made good progress and we are very thankful for that. My concern now is his

physical growth. He is going to be 8 years old in November but only weight 42

lbs.

My #3 was on the small side, and he started really growing when I added

carnitine and thyroid support.

Dana

[Guest guest]

Thank you Parents for all your help and sharing. You guys are awesome.

No, we didnt' give him any injections of B 12 but we have been giving B12

orally for a few years.

thanks again,

eva

From: Haven DeLay <hdelay@...>

Subject: Re: [ ] physical growth concern-Please advise

Date: Thursday, July 29, 2010, 7:04 PM

 

Hi,

Have you done Methylcobalimin injections (B 12)? My son went through a

period where he did not gain weight for two years. The shots helped him a

lot.

Haven

[Guest guest]

Also wanted to chime in that you can have his wrist x-rayed to see where he is

in bone development to make sure the bones aren't fused. It'll help you not be

so worried unless it is warranted.

Of course, you don't want to do it all the time, either!

Warm Regards,

Summer McFarland

1.22 HEAL KIDS

1.224.325.5437

--------------------------------------------------------------------------------\

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

Over fourteen years of organic search engine optimization, marketing and design.

[Guest guest]

VEry often the oral form is not absorbed and metabolized properly.

Especially in our kids who have a hard time metabolizing and absorbing

nutrients broken down to the appropriate levels so as to be be beneficial to

the body.

If you get a chance, read Dr. Jaquelynn McCandless' *Children with Starving

Brains.* She discusses this phenomenon at length in her book. My

understanding is that our kids just do not absorb enough nutrients from the

digestive system. This is not only true of our kids, but those of us who

are middle aged or older --as we age, we just don't metabolize B12 very well

through the digestive system.

My mom used to go routinely to get a B12 shot once a month. I have tried

this, as well, and it is remarkable how much more energy I have after one.

The only drawback is that B12 WILL increase appetite. That's a drawback for

ME, not fo ryour son. It sounds like he needs to gain some weight.

These are sold at a compounding pharmacy. They are in individual syringes,

tailored to your child's dose, and the needle is tiny. It is given in the

outside of the thigh. It is given subcutaneously (under the skin). It's

not hard to do.

When our son was going through this period, he also fell and broke his

thumb, and then about a month or so later, he got off the couch and barely

bumped his leg on the coffee table, and couldn't weight bear for over two

months. We did go in and have a bone density study, but they said it was

okay. It was just one of those very weird things.

Hope this helps.

Haven

[Guest guest]

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can this be

a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

there's a genetic condition called Marfan syndrome: 

 

http://www.youtube.com/watch?v=UnW1abqM3_s & feature=related

 

About Marfan Syndrome:

 

http://marfan.org/marfan/2320/Features

 

Symptoms:

 

Bones and Joints (Skeletal system) 

Long arms and legs

Tall and thin body type

Curvature of the spine (scoliosis or kyphosis)

Chest sinks in (pectus excavatum) or sticks out/pigeon breast (pectus carinatum)

Long, thin fingers

Flexible joints

Flat feet

Teeth that are too crowded

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

, thanks for the input.

It's interesting that just last night I was searching about the MTFHR mutations,

homocystonuria (hope spelled it correctly), deficit of B6 and B12. And there was

Marfan syndrom mentioned.

Maybe we can speak with the genetic about it even thought our son doesn't match

all the characteristics, and those he matches are very slightly displayed. .

Thanks again!

Asem

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

, thank you for the links! There is a history of chromosome abnormalities

in the family, so this and Marfan syndrome info from , are a good

educational reading for me.

Regars,

Asem

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

I think we are tossing out a lot of serious medical conditions without much

knowledge. My best advice is to seek a trained pair of eyes and ears

(pediatrician? geneticist?) and share your concerns.

My two cents.

Pam

> >

> >

> > I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> > Any opinion would be highly appeciated.

>

> Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

>

> See these

>

>

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

>

> http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

>

> http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks, Pam, that's very correct. These inputs prompt me to have

another consultation with a genetics doctor.

But! Please! Pediatrician! When my son started constipate for 4-5 days, I saw 5

ped doctors in Vienna, and all of them were most concerened if my son is

" tracked " by a psychiatrist. One of them told me that " He is doing this on

purpose, you see, he is insaine. "

Probably that's why I ended up axpressing my concerns regarding his wrists on

the forum. No more offtop.

 

From: Pamela H <phaselow@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Sunday, August 1, 2010, 9:08 AM

 

I think we are tossing out a lot of serious medical conditions without much

knowledge. My best advice is to seek a trained pair of eyes and ears

(pediatrician? geneticist?) and share your concerns.

My two cents.

Pam

> >

> >

> > I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with

calcium, and can this be a sign of fetal metal intoxication?

> > Any opinion would be highly appeciated.

>

> Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

>

> See these

>

>

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

>

> http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

>

> http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

My son displays a lot of these characteristics. However he had chromosome

studies done when he was 5 and the report came back normal. They were checking

for fragile x but would they not have seen any other abnormalities?

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

As far as I heard on some consultations  they look for something particular.

Which means, that they want to know what their target is before they do the

test.

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

That's crazy. Those tests cost a fortune. If they don't check for everything you

could spend a million dollars and still not find something.

From: <thorenstd124@...>

Subject: [ ] Re: physical growth concern-Please advise

Date: Saturday, July 31, 2010, 6:31 PM

 

>

>

> I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> Any opinion would be highly appeciated.

Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

See these

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

[Guest guest]

My new pediatrican suggested we got gluten-free. The good ones do still exist.

Many need to see their primary care doc in order to be referrred to a

specialist, to a visit to the pediatrian of family doc is just part of the

process.

Sorry you have bad experiences. I do, too. Until this summer, my kids hadn't

seen a doctor (aside from one time where I thought they had strep) outside of

DAN! for nearly 6 years. And even the DAN! missed things.

Good luck.

Pam

> > >

> > >

> > > I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with

calcium, and can this be a sign of fetal metal intoxication?

> > > Any opinion would be highly appeciated.

> >

> > Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

> >

> > See these

> >

> >

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

> >

> > http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

> >

> > http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Yep. You have t have a clinical presentation or family history or they won't

order the test. There are thousands of chromosomal abnormalities and it would be

impossible and fairly lengthy to test for all. They would never be able to

complete it.

> >

> >

> > I also have big concerns regarding my son's growth, but skeletal one. Ever

since he was born, his wrists are smaller than usual and his feet are so narrow

that it's difficult to buy proper shoes for him. He is now 10 and his skeletal

posture is as wide as some 6 or 7 year old's although he is tall enough but too

" slim " . His hands look " underage "  , fingers are too thin, and

wrists too small. Could that be inborn disorder with calcium, and can

this be a sign of fetal metal intoxication?

> > Any opinion would be highly appeciated.

>

> Sounds like me.I would say,like me,he may have Phelan-McDermid,or a similar

chromosome22 deletion syndrome.

>

> See these

>

>

http://www.rarechromo.org/information/Chromosome%2022/22q13%20deletions%20QFN.pd\

f

>

> http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=38

>

> http://www.touchneurology.com/files/article_pdfs/durand%5B1%5D.pdf

>

>

>

>