Re: feeding issues of a 3 1/2 year old and an overwought mother

September 26, 2005

,

I just replied and lost it, so I'll try again!

I have an 8 year old (almost 9 yr old) son who has been down the

feeding road. He is SGA without catch up growth. I have a couple

of quick ideas for you, you can email me offline if you want or I

will try to keep a closer eye on the list.

1. Does your son have reflux? Matt had horrible, undiagnosed

reflux. It doesn't take long for a kid to figure out how not to eat

if it hurts every time he does.

2. Does your son have any Sensory Integration problems? Matt

does, and they impacted his eating. A good OT can help with SID.

3. A speech therapist with an emphasis in feeding issues has

saved our lives. I was begging for a feeding tube to keep from

force feeding him. We ended up at a feeding clinic (this one was

horrible) and then found a ST who has saved our lives.

4. Finally – cut yourself some slack. If he gets a lot of

calories with milk, then so be it. Just stay away from the

pediasure stuff. Milk is a start. Talk to Dr. H, get a medical

plan and then find a good ST. It is a slow process but one that has

been really helpful to us.

Beth H.

Mom to Matt SGA – growth hormone, prilosec, and concerta

> As is true for probably most of you, feeding has become the bane

of my existence. I must

> have the caloric content of every food memorized and can estimate

the serving size of just

> about anything. I can't wait until these days are over! I have

been keeping a log of

> everything that my son eats on a daily basis. Basically, he gets

3/4 of his calories through

> milk (which is really milk and 1/2 and 1/2 combined). I know that

it sounds disgusting

> but based on everything else I've tried it " works " best. He can't

tolerate " rich foods " --

> Boost, milkshakes etc. and has a tough time w/ mixed textures.

He " likes: crunchy and

> prefers that foods like veggies not be cooked. He's been known to

eat some foods frozen

> that would normally be cooked (refrigerated ravioli etc.). We've

worked w/ a nutritionist

> feeding therapists OT and sp/lang. professionals who all have

great ideas but the bottom

> line is that my son, Jack, has NO interest in eating and would

probably go for days w/o

> eating if he didn't have to. Because of this and an anxious mom,

there are numerous

> behavioral issues surrounding eating. While the diagnosis of RSS

was really hard for me, I

> remember my initial reaction being of relief. I know that it

sounds ridiculous, but I was so

> tired of everyone (friends and relatives included) looking at me

as if I had created this

> child who had all of these " food issues " . I guess what I'm

wondering is how you have all

> dealt w/ this. Part of me wants my son to have " normal " eating

habits and then the other

> part of me just wants him to maintain being able to eat on his own

w/o any kind of

> feeding intervention. Any tips that you have would be great. One

thing that frustrates me

> is that many professionals have great ideas but they are not foods

that I can get my son to

> eat. Is there anyone who lives in the NY metro area that has the

name of a feeding

> therapist who has worked w/ RSS kids. Does this problem ever go

away? Am I going to

> experience these same problems w/ my son when he's 8 or 15? ( I

don't think I can

> imagine this!) **Also, my son's head sweats profusely at night.

Is that in and of itself

> cause for concern? Does it mean that he is definitely

hypoglycemic or is it possible that it

> is just symptomatic of RSS? I have an appt. w/ Dr. Harbison in

about 6 weeks. I have

> never met w/ her. Are these the kinds of questions and concerns

that she can help me

> with? I've seen many of you refer to her. What should I expect

from my initial

> consultation?

> Well I can't imagine anyone reading all of this. (I barely could

when aI went back to reread

> it to see if makes any sense.

> Any ideas, thoughts would be greatly appreciated,

> (one of the many J's)

September 26, 2005

Thanks, Beth. Jack did have reflux that resolved when he was 10 months. His

history is probably a bit different than most. He was born weighing 2 lbs. and

spent the first 10 weeks in the hospital. He does have low tone and gets

speech, OT, PT. Some of his delays are probably due to prematurity and others

are RSS, I'm sure. We had a great feeding therapist who moved. I guess the

hard thing is finding someone to work w/ us during mealtime (since that is the

most natural setting) and, of course, w/ me being the mom. Jack is also

extremely active (probably ADHD). He spins like a top so getting him " grounded "

and comfortable in one place is a challenge. I do insist that during mealtime

that he sit for " some " preiod of time. And yes, he does have sensory issues.

Jack has been getting all of these therapies basically since birth since he was

identified through his prematurity as having several delays. He was not

diagnosed until a little over 3 w/ RSS. This is relatively new to

me. Thanks for your ideas.

millerkaitlyn wrote:

,

I just replied and lost it, so I'll try again!

I have an 8 year old (almost 9 yr old) son who has been down the

feeding road. He is SGA without catch up growth. I have a couple

of quick ideas for you, you can email me offline if you want or I

will try to keep a closer eye on the list.

1. Does your son have reflux? Matt had horrible, undiagnosed

reflux. It doesn't take long for a kid to figure out how not to eat

if it hurts every time he does.

2. Does your son have any Sensory Integration problems? Matt

does, and they impacted his eating. A good OT can help with SID.

3. A speech therapist with an emphasis in feeding issues has

saved our lives. I was begging for a feeding tube to keep from

force feeding him. We ended up at a feeding clinic (this one was

horrible) and then found a ST who has saved our lives.

4. Finally – cut yourself some slack. If he gets a lot of

calories with milk, then so be it. Just stay away from the

pediasure stuff. Milk is a start. Talk to Dr. H, get a medical

plan and then find a good ST. It is a slow process but one that has

been really helpful to us.

Beth H.

Mom to Matt SGA – growth hormone, prilosec, and concerta

> As is true for probably most of you, feeding has become the bane

of my existence. I must

> have the caloric content of every food memorized and can estimate

the serving size of just

> about anything. I can't wait until these days are over! I have

been keeping a log of

> everything that my son eats on a daily basis. Basically, he gets

3/4 of his calories through

> milk (which is really milk and 1/2 and 1/2 combined). I know that

it sounds disgusting

> but based on everything else I've tried it " works " best. He can't

tolerate " rich foods " --

> Boost, milkshakes etc. and has a tough time w/ mixed textures.

He " likes: crunchy and

> prefers that foods like veggies not be cooked. He's been known to

eat some foods frozen

> that would normally be cooked (refrigerated ravioli etc.). We've

worked w/ a nutritionist

> feeding therapists OT and sp/lang. professionals who all have

great ideas but the bottom

> line is that my son, Jack, has NO interest in eating and would

probably go for days w/o

> eating if he didn't have to. Because of this and an anxious mom,

there are numerous

> behavioral issues surrounding eating. While the diagnosis of RSS

was really hard for me, I

> remember my initial reaction being of relief. I know that it

sounds ridiculous, but I was so

> tired of everyone (friends and relatives included) looking at me

as if I had created this

> child who had all of these " food issues " . I guess what I'm

wondering is how you have all

> dealt w/ this. Part of me wants my son to have " normal " eating

habits and then the other

> part of me just wants him to maintain being able to eat on his own

w/o any kind of

> feeding intervention. Any tips that you have would be great. One

thing that frustrates me

> is that many professionals have great ideas but they are not foods

that I can get my son to

> eat. Is there anyone who lives in the NY metro area that has the

name of a feeding

> therapist who has worked w/ RSS kids. Does this problem ever go

away? Am I going to

> experience these same problems w/ my son when he's 8 or 15? ( I

don't think I can

> imagine this!) **Also, my son's head sweats profusely at night.

Is that in and of itself

> cause for concern? Does it mean that he is definitely

hypoglycemic or is it possible that it

> is just symptomatic of RSS? I have an appt. w/ Dr. Harbison in

about 6 weeks. I have

> never met w/ her. Are these the kinds of questions and concerns

that she can help me

> with? I've seen many of you refer to her. What should I expect

from my initial

> consultation?

> Well I can't imagine anyone reading all of this. (I barely could

when aI went back to reread

> it to see if makes any sense.

> Any ideas, thoughts would be greatly appreciated,

> (one of the many J's)

September 26, 2005

I wouldn't count on his reflux being gone. My son threw up

everything until he was 9 months old. We never went on medications

because he gained just enough weight to stay off of them. I wish we

had.

At 8 months he bottle broke himself, forcing the bottle away from

him (hello - oral sensory issues which I didn't pick up on), but he

quit throwing up. He was eating A LOT less and vomiting A LOT less,

but the reflux continued. When he was 6, he had a pH probe that

surprised the peds GI. He couldn't believe a kid could have reflux

that bad and not complain.

Dr. H is big on treating reflux, so don't be surprised if she wants

to try prilosec and/or zantac, plus periactin to increase appetite.

Beth

> > As is true for probably most of you, feeding has become the bane

> of my existence. I must

> > have the caloric content of every food memorized and can

estimate

> the serving size of just

> > about anything. I can't wait until these days are over! I have

> been keeping a log of

> > everything that my son eats on a daily basis. Basically, he

gets

> 3/4 of his calories through

> > milk (which is really milk and 1/2 and 1/2 combined). I know

that

> it sounds disgusting

> > but based on everything else I've tried it " works " best. He

can't

> tolerate " rich foods " --

> > Boost, milkshakes etc. and has a tough time w/ mixed textures.

> He " likes: crunchy and

> > prefers that foods like veggies not be cooked. He's been known

to

> eat some foods frozen

> > that would normally be cooked (refrigerated ravioli etc.).

We've

> worked w/ a nutritionist

> > feeding therapists OT and sp/lang. professionals who all have

> great ideas but the bottom

> > line is that my son, Jack, has NO interest in eating and would

> probably go for days w/o

> > eating if he didn't have to. Because of this and an anxious

mom,

> there are numerous

> > behavioral issues surrounding eating. While the diagnosis of

RSS

> was really hard for me, I

> > remember my initial reaction being of relief. I know that it

> sounds ridiculous, but I was so

> > tired of everyone (friends and relatives included) looking at me

> as if I had created this

> > child who had all of these " food issues " . I guess what I'm

> wondering is how you have all

> > dealt w/ this. Part of me wants my son to have " normal " eating

> habits and then the other

> > part of me just wants him to maintain being able to eat on his

own

> w/o any kind of

> > feeding intervention. Any tips that you have would be great.

One

> thing that frustrates me

> > is that many professionals have great ideas but they are not

foods

> that I can get my son to

> > eat. Is there anyone who lives in the NY metro area that has the

> name of a feeding

> > therapist who has worked w/ RSS kids. Does this problem ever go

> away? Am I going to

> > experience these same problems w/ my son when he's 8 or 15? ( I

> don't think I can

> > imagine this!) **Also, my son's head sweats profusely at

night.

> Is that in and of itself

> > cause for concern? Does it mean that he is definitely

> hypoglycemic or is it possible that it

> > is just symptomatic of RSS? I have an appt. w/ Dr. Harbison in

> about 6 weeks. I have

> > never met w/ her. Are these the kinds of questions and concerns

> that she can help me

> > with? I've seen many of you refer to her. What should I expect

> from my initial

> > consultation?

> > Well I can't imagine anyone reading all of this. (I barely

could

> when aI went back to reread

> > it to see if makes any sense.

> > Any ideas, thoughts would be greatly appreciated,

> > (one of the many J's)

>

September 26, 2005

Hey, . As you have probably read on this listserve, things are

not going too well right now with my son Max, but I do have some

encouraging words for you....

Max EATS!!!! He was tube fed in some form or another up until a

little less than 2 years ago. He is now 17. The tube was used for

years for feeding, especially at night because he had hypoglycemia,

and also to make up for calories he did not get during the day.

Then it was used just when he was sick and could not keep food

down. He had a g-j tube and we used the j part to go into his large

intestine to bypass the stomach. He had to go for a year without

using it before the doctor would give us permission (as well as Dr.

H.) and last May it was taken out! Yippee!!!! Now he eats so much

that I don't know where he puts it. It is my pleasure to watch

him " chow down. " Don't give up on Jack. He will eat eventually.

Ah, but therein lies the problem. Apparently reflux does ebb and

flow, get worse and better, and so on. Max has taken Prevacid and

Protonix for a long time and not complained of any reflux pain at

all. Now he has these darn hiccups/rumination and it appears that

reflux may be the actual cause. Just when we thought it was gone,

it reared its ugly head. That's a whole other stressful story.

It sounds like you know a lot about RSS, the feeding issues, the

need to get Jack to eat. The stress of that is tremendous and we

all know what that is like. It's great that you are seeing Dr. H.

in a few weeks. She will lay out a plan and you will feel so much

better.

Where do you live? I assume you are near NYC, but, then again, you

could be flying in to see her.

Oh, by the way, Max was measured last week at the GI. He is

officially 5'5 " . With room to grow. Just remember - never, ever

give up.

Jodi Z

September 27, 2005

Thanks, Jodi. I'm very sorrry to hear about Max. I hope he gets rid of the

hiccups and that they are not a result of the reflux.

Before Jack was diagnosed w/ RSS, he had an endoscopy and at that point there

were no signs of reflux. He had been previously treated w/ a whole host of meds

and also w/ erythromycin to see if emptying his stomach would allow him to eat

more. We didn't get any results from this. The only thing that I guess it did

help w/ was ruling out some other things. I still think the erythromycin might

be a possibility since his stomach is so tiny. I'm sure that Dr. H will let me

know. I guess the other thing is that sometimes Jack's head does sweat a lot at

night. He does eat a fair amount right before he goes to bed (ususally

something sweet) since this is our last opportunity to sneak calories in while

he watches a video after his shot and before bedtime. Is headd sweating alone a

sign of hypoglycemia? When I mentioned it to the ped. and the geneticist they

didn't seem overly concerned. Any thoughts?

Jodi Zwain wrote: