growth

[Guest guest]

Thanks Judy for passing this along. I read somewhere about autistic kids

growing more slowly/ending up shorter/entering puberty later as a group but

didn't realize this was known about ADD too.

At six my child is very prepubertal. She didn't fall off her growth curve

prior to age two. She began losing baby teeth early and both her dentist

and ped told me there's some evidence to suggest she may also experience

puberty early, though we'll see and I hope not.

The doctors didn't see Dan's diet as related to his growth? Or is the idea

that entering puberty and its growth phase with kick up his appetite?

At 15 I suppose the testosterone is the right decision, but after all the

posts I've read describing puberty's effect on OCD, I think you are a brave

woman to choose this! (Said from my safe position as the Mom of a

first-grader :-))

Thanks Judy,

Kathy R. in Indiana

growth

> I took Dan to the s Hopkins short stature clinic today for

> evaluation. He will be 15 in a month. Their opinion is that he is

> probably not growing because he is not experiencing puberty. There are

> 2 times when children might be expected to fall off their growth

> curve--in infancy (prior to age 2) and at the expected age of

> adolescence if their puberty is delayed compared to age mates. Dan fell

> from 95th to 50th prior to his 2nd birthday. Starting at age 12, he has

> hardly grown at all, so he is now below the 5th percentile.

>

> I asked about OCD being related to this, and the endocrinologist said he

> wouldn't be surprised. It is well-known that kids with ADD mature

> later, and he thinks it could be true for OCD as well, although there is

> little data on it because the percentage of kids with OCD is much lower

> than ADD.

>

> Bottom line is we decided to start Dan on testosterone shots to

> hopefully start the puberty process. We have a followup appointment in

> 6 months.

>

> I'm curious to know whether the others on this list with growth concerns

> are prepubertal.

>

> Judy

[Guest guest]

Hello:  I'm new here and have been using these grains for many months now and am

able to finally find the right kind of milk that works for me.  I use canned

milk diluted with  just the same amount of water or maybe a little more. 

anyway, do any of you know how to get these little grains to multiply faster?  I

read where one person said to put in a little sugar to feed the grains but that

didn't seem to work for me.  am I doing something wrong or what?

am glad to be on this list and to find out all I can about Kefir.  Have printed

off oodles of info but there's always more to learn.

thanks.

Janet

[Guest guest]

Hi, Marilyn:  thanks for the suggestion.  I did try regular milk but it

curdled.  I suppose I did something wrong...guess that I should try it again. 

My grains came from a  real good supplier  so I know that they are good.  I put

them in a dark cubbard.  I appreciate your input.  any and all ideas will be

appreciated.

Janet in Az.

Re: growth

Hi Janet,

Where did you get your kefir grains? Why don't you use regular milk instead

of canned? That seems next to UHT in deadness.

Forget putting sugar in there. That would make alcohol.

It sounds like your kefir grains do not have growth factor. They should

double every 10 to 14 days, especially in this weather. Or are you putting

them into the refrigerator from time to time. That will stop them dead in

their tracks.

Marilyn

On Mon, Aug 18, 2008 at 5:55 PM, Janet Upchurch <jntupchurch>wrote:

> Hello: I'm new here and have been using these grains for many months now

> and am able to finally find the right kind of milk that works for me. I use

> canned milk diluted with just the same amount of water or maybe a little

> more. anyway, do any of you know how to get these little grains to multiply

> faster? I read where one person said to put in a little sugar to feed the

> grains but that didn't seem to work for me. am I doing something wrong or

> what?

> am glad to be on this list and to find out all I can about Kefir. Have

> printed off oodles of info but there's always more to learn.

> thanks.

> Janet

>

>

>

[Guest guest]

My two oldest birth children have constitutional growth delay; which

means delayed puberty and late growth spurt. When other girls are

reaching puberty, my girls continued on with a typical preburtal growth

curve (it looked like they were " falling off " and they were crossing

percentiles, but they were really just continuing on the same path, while

other girls were going up, up, up). We tested our oldest dd at 3; she had

had severe reflux (had a fundo) and asthma; her bone age was delayed by

almost 2 years. Today, at age 13 years, 7 months, and 60 inches tall, she

is still growing and has not started menstruating--which is good, because

it means she is not finished growing yet.

My 11 years, 6 months old dd is at less than the third percentile, after

tracking at 15th until the age of 8 or so. Her bone age is at 8 years, 11

months. She has asthma and reflux, but has not been sick enough to cause

growth problems. Given her sister's history, it was assumed that she also

has constitutional growth delay, but I took her to endocrinology in March

to be evaluated, just in case. Other blood tests were normal, so she is

set to follow in her sister's footsteps

Fwiw, I am 5 ft. 8 in., but so is my dh (25th percentile for a man), and

all my kids seem to be on the shorter side--we'll see. The only one in

our families with constitutional growth delay is my brother, who topped

out at 6 ft. 3 inches at age 23 Our third birth child, ds9, who has

always had complicated health issues, is assumed to be following the same

pattern, complicated by his worsening health issues. He is really short

All of this, to tell you that it may be nothing serious. I would see an

endocrinologist, with all her growth charts in hand, just to be on the

safe side. A bone age Xray before the visit would be helpful. It could

be a delay due to any illnesses she has had, it could be just a

constitutional delay, or even hypothyroidism; at the worst, GH deficiency.

My youngest (adopted) dd, almost 5, had severe low birth weight with

prematurity; she is set to start growth hormone in sixth months if she

doesn't have a big growth spurt (she is at less than the first

percentile).

Mindy, in Va., mom to seven special kids ages (almost)5-13.5, including

, 9, CVID, autism, asthma, food allergies, GER/constipation,

migraines/CVS, muscle/nerve problems, fatigue (secondary to mitochondrial

disease) oh, and short stature

> Has anyone successfully dealt with growth issues? Or, have experience to

share?

> My daughter is almost 10 yrs old and, in past two years, has been

dropping

> percentiles for stature. (Dropped from 70th to 50th). She is still a

normal size child but my husband and I are both " tall " and, today, her

ped

> expressed concern.

> Any thoughts?

>

> Mom to Dani, CVID, 9

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

> ------------------------------------

> This forum is open to parents and caregivers of children diagnosed with

a

> Primary Immune Deficiency. Opinions or medical advice stated here are

the

> sole responsibility of the poster and should not be taken as

professional

> advice.

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /join

> ( ID required)

>

[Guest guest]

My two oldest birth children have constitutional growth delay; which

means delayed puberty and late growth spurt. When other girls are

reaching puberty, my girls continued on with a typical preburtal growth

curve (it looked like they were " falling off " and they were crossing

percentiles, but they were really just continuing on the same path, while

other girls were going up, up, up). We tested our oldest dd at 3; she had

had severe reflux (had a fundo) and asthma; her bone age was delayed by

almost 2 years. Today, at age 13 years, 7 months, and 60 inches tall, she

is still growing and has not started menstruating--which is good, because

it means she is not finished growing yet.

My 11 years, 6 months old dd is at less than the third percentile, after

tracking at 15th until the age of 8 or so. Her bone age is at 8 years, 11

months. She has asthma and reflux, but has not been sick enough to cause

growth problems. Given her sister's history, it was assumed that she also

has constitutional growth delay, but I took her to endocrinology in March

to be evaluated, just in case. Other blood tests were normal, so she is

set to follow in her sister's footsteps

Fwiw, I am 5 ft. 8 in., but so is my dh (25th percentile for a man), and

all my kids seem to be on the shorter side--we'll see. The only one in

our families with constitutional growth delay is my brother, who topped

out at 6 ft. 3 inches at age 23 Our third birth child, ds9, who has

always had complicated health issues, is assumed to be following the same

pattern, complicated by his worsening health issues. He is really short

All of this, to tell you that it may be nothing serious. I would see an

endocrinologist, with all her growth charts in hand, just to be on the

safe side. A bone age Xray before the visit would be helpful. It could

be a delay due to any illnesses she has had, it could be just a

constitutional delay, or even hypothyroidism; at the worst, GH deficiency.

My youngest (adopted) dd, almost 5, had severe low birth weight with

prematurity; she is set to start growth hormone in sixth months if she

doesn't have a big growth spurt (she is at less than the first

percentile).

Mindy, in Va., mom to seven special kids ages (almost)5-13.5, including

, 9, CVID, autism, asthma, food allergies, GER/constipation,

migraines/CVS, muscle/nerve problems, fatigue (secondary to mitochondrial

disease) oh, and short stature

> Has anyone successfully dealt with growth issues? Or, have experience to

share?

> My daughter is almost 10 yrs old and, in past two years, has been

dropping

> percentiles for stature. (Dropped from 70th to 50th). She is still a

normal size child but my husband and I are both " tall " and, today, her

ped

> expressed concern.

> Any thoughts?

>

> Mom to Dani, CVID, 9

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

> ------------------------------------

> This forum is open to parents and caregivers of children diagnosed with

a

> Primary Immune Deficiency. Opinions or medical advice stated here are

the

> sole responsibility of the poster and should not be taken as

professional

> advice.

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /join

> ( ID required)

>

[Guest guest]

Thanks, and .

Really appreciate the insight. My daughter sounds like your son, . I have

appt w/ immuno tomorrow and will see what he thinks..

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

RE: Growth

,

My son was treated with IVIG as a toddler for immune deficiency (low IgG,IgA

and IgM; specific antibody deficiency and specific t-cell issues). Anyway,

then he was off of IVIG from 3.5 to age 11. For years we treated with

antibiotics, both maintenance and long courses. He steadily maintained 75%

for height and weight. Then starting around age 9, he stopped growing much

and by age 11 had lost 10 pounds since his 10 year check and barely grown in

height. He went from 75% for height down to 50% or so and then for weight

dropped from 75% down to 30th. That is when we rechecked all of his immune

studies and decided to go back on IVIG. His antibiotics weren't helping in

terms of maintenance and he was constantly on 21+ day rounds of heavy duty

antibiotic therapy. Since starting the IVIG and now the sub-Q, he has gained

12lbs and grown 1/4 " and that is just since November this past fall. So, I

think we are on the right track. Our immuno said that kids who are sick

constantly will tend to have growth issues and that was definitely the case

for us.

Mom to Caelan 11 (on Hizentra sub-Q)

[Guest guest]

Thanks, and .

Really appreciate the insight. My daughter sounds like your son, . I have

appt w/ immuno tomorrow and will see what he thinks..

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

RE: Growth

,

My son was treated with IVIG as a toddler for immune deficiency (low IgG,IgA

and IgM; specific antibody deficiency and specific t-cell issues). Anyway,

then he was off of IVIG from 3.5 to age 11. For years we treated with

antibiotics, both maintenance and long courses. He steadily maintained 75%

for height and weight. Then starting around age 9, he stopped growing much

and by age 11 had lost 10 pounds since his 10 year check and barely grown in

height. He went from 75% for height down to 50% or so and then for weight

dropped from 75% down to 30th. That is when we rechecked all of his immune

studies and decided to go back on IVIG. His antibiotics weren't helping in

terms of maintenance and he was constantly on 21+ day rounds of heavy duty

antibiotic therapy. Since starting the IVIG and now the sub-Q, he has gained

12lbs and grown 1/4 " and that is just since November this past fall. So, I

think we are on the right track. Our immuno said that kids who are sick

constantly will tend to have growth issues and that was definitely the case

for us.

Mom to Caelan 11 (on Hizentra sub-Q)

[Guest guest]

Our older 2 boys are very small for their ages. Our oldest is <3rd %ile for

height and his bone age measured 5 yrs of age when he was almost 8 and a

half (so he is the size of a 5 yr old at 8.5 and just started wearing sz 6

clothing). Our middle son is about 15th %ile and has a bone age of 4 yrs of

age right before his 6th birthday. Growth hormone has been suggested for my

oldest son since he is so small for his age, but because of their

Mitochondrial disease, we are afraid to try it. We know that their small

stature is likely due to their energy deficiency and we don't know if

forcing the body to grow would be diverting energy from a more critical body

function to growth instead...kind of like robbing to pay , if you

will. We are afraid of what other problems we may create by diverting that

energy, so we are just watching and waiting for the time being. Because you

have until puberty to start growth hormone, we have a little bit of time to

play with.

If the dr is concerned, I would suggest starting with a bone age scan. It

is a simple single x-ray of the hand that will allow the radiologist to look

at the growth plates in the hand and determine the age of the bones vs her

chronological age. A bone age delay, like my boys have, is less concerning

than if the bone age and chronological age match, because it means they will

continue to grow when their peers have stopped growing. If the bone age and

chronological age match, then it indicates that there is something else

going on that may need to be investigated. Hope this helps and you are able

to figure out what is going on.

Melody, mom to 3 little boys with mito, complex I and immune deficiency

secondary to the mito

Growth

Has anyone successfully dealt with growth issues? Or, have experience to

share?

My daughter is almost 10 yrs old and, in past two years, has been dropping

percentiles for stature. (Dropped from 70th to 50th). She is still a normal

size child but my husband and I are both " tall " and, today, her ped

expressed concern.

Any thoughts?

Mom to Dani, CVID, 9

Sent from my SprintR BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

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

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Our older 2 boys are very small for their ages. Our oldest is <3rd %ile for

height and his bone age measured 5 yrs of age when he was almost 8 and a

half (so he is the size of a 5 yr old at 8.5 and just started wearing sz 6

clothing). Our middle son is about 15th %ile and has a bone age of 4 yrs of

age right before his 6th birthday. Growth hormone has been suggested for my

oldest son since he is so small for his age, but because of their

Mitochondrial disease, we are afraid to try it. We know that their small

stature is likely due to their energy deficiency and we don't know if

forcing the body to grow would be diverting energy from a more critical body

function to growth instead...kind of like robbing to pay , if you

will. We are afraid of what other problems we may create by diverting that

energy, so we are just watching and waiting for the time being. Because you

have until puberty to start growth hormone, we have a little bit of time to

play with.

If the dr is concerned, I would suggest starting with a bone age scan. It

is a simple single x-ray of the hand that will allow the radiologist to look

at the growth plates in the hand and determine the age of the bones vs her

chronological age. A bone age delay, like my boys have, is less concerning

than if the bone age and chronological age match, because it means they will

continue to grow when their peers have stopped growing. If the bone age and

chronological age match, then it indicates that there is something else

going on that may need to be investigated. Hope this helps and you are able

to figure out what is going on.

Melody, mom to 3 little boys with mito, complex I and immune deficiency

secondary to the mito

Growth

Has anyone successfully dealt with growth issues? Or, have experience to

share?

My daughter is almost 10 yrs old and, in past two years, has been dropping

percentiles for stature. (Dropped from 70th to 50th). She is still a normal

size child but my husband and I are both " tall " and, today, her ped

expressed concern.

Any thoughts?

Mom to Dani, CVID, 9

Sent from my SprintR BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

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

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages