Re: FTT dx

April 22, 2008

Have they done a fecal fat test? CF testing? ...my 2 SDS boys had FTT

before they were treated with enzymes for their pancreatic insufficiency.

Peace be with you,

Pattie

Let us not become weary in doing good, for at the proper time we will reap a

harvest if we do not give up. ~Gal 6:9

April 22, 2008

I would not put yourself in the hot seat yet. And I know that you do not

probably logically think that it is your fault and I see how diligent you are

with your kids getting what they need through your posts so maybe try looking at

this thing in a new and fresh way.

I know that this is most likely food and gut related but..... I am wondering

since I am hearing maybe a wee little bit from you that your kids " do not want

to eat " and I understand that you cannot make them. I have been through this

with my daughter to some degree. And for her there was a stubborness that was

going on that had a hint of power around the not eating. (She now is 17 and

pregnant and admits her stubborness to the point of her hurting herself.)

I worked with failure to thrive babies for years and there are MANY issues that

feed the problem not just one. So you need to hit it at different levels to be

successful in gaining wt. Just a bit of experience but FTT is not a simple

diagnosis. The goal is what you need to focus on. So other thoughts would be

around what they eat and what gives them tummy aches and I am hearing through

others that RAST testing is not accurate with kids that have immune disfunction.

Have either of the girls had the test for celiac out of texas that is a Saliva

test rather than a blood test?. I understand it is used in Europe and MUCH more

accurate. Also how about thyroid or other endocrine issues? there are many

metobolic issues that prevent wt gain. Also what is the wt to ht ratios and are

they growing otherwise? And what are your boys like or other girls in the

extended family?

Just brainstorming with you. So I have a thought....... Can you come up with a

reward system for both of the girls to put on wt. I am not saying making it your

being good or bad but " what if we give this a try " . That they would both feel

better, have more energy and maybe get sick less if they try to put on 1 lbs

this month. And then put together a plan with them to go shopping with you and

that they agree to eat something every hour during the day. Even if it is only a

couple of bites. Then see if they put on 4 oz a week. Sometimes I personally

believe that happens with FTT is not only the physical issues but also not

getting enough overall calories. The hunger sensation goes away and it becomes a

viscious cycle. So the goal would be to get them on board to be a part of the

possible solution. Tell them that you do not know if it will work but it would

be worth a try. The important thing is that maybe you could have fun with them

and teach them to cook

during this time to get them more interested in food. I hope this is help not a

waste of your time.

BARBIE

FTT dx

Today I received the dictation from our last dr appt, and it states

that Savannah is now considered FTT. I think I " knew " this......just

from the conversations we've had with drs lately. But seeing it in

print has been very emotional for me.

I dont know what else to do. We see a new dietician on Thursday.

We've tried drinks like Ensure...... .some days, she'll drink it, most

days, she wont. We've tried Balance Bars....she' ll eat, reluctantly,

one flavor of those. She's been casein and egg free for over three

yrs......we' ve started a casein challenge to see if she can tolerate

it yet, just for higher calories. Switched to whole milk, adding

butter to everything, adding vegetable oil to everything, eating ice

cream every night. We're waiting on a new allergist to see, who's

supposed to be very good. Pulmo wants to attempt a RAST test at this

next infusion, just to see if anything comes up. If not, we're hoping

to trial off for a couple months this summer, and we'll try more

allergy testing then.

Whats so frustrating to me, is that my other daughter is only a couple

lbs heavier than the one with CVID.......and we cant get any weight on

her, either. If she loses anymore, she'll be FTT, too.

I feel like Im failing at something, but I honestly cant figure out

what Im doing wrong.

valarie

mom to three w/cvid

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April 22, 2008

---

No, its not a waste of time:)

Im just frustrated! with one daughter......some is sensory stuff,

there just are some things she WILL NOT eat. Honestly, she'd rather

starve than eat it(and Ive tried that too...she really WONT cave in

and eat it). Some is just plain stubborness. But, that is usually more

when she was having anxiety problems, that appear to have been

successfully resolved since last spring. But mostly.....she eats what

everyone else eats, unless she's sick. What she will eat, she eats

well. She likes meat, fruit, some veggies, likes breads, sweets(of

course). Cereal, pop tarts, cookies, baked goods, potato chips. So

lots of what she eats is already high calorie. Now that we're trialing

dairy, she's also eating yogurt, ice cream, cheese, butter, adn whole

milk. She's been scoped and biopsied for celiac......a couple yrs ago,

she was admitted for the stomach aches, trying out some

testing...thats when we found out the IGA was low, bc you cant test

for celiac w/ low IGA.....and that lead us to find the other low IG's.

But the celiac biopsy was neg. I know the RAST at this point is a

long shot.... but we're sort of flailing here. Savannah is 55 inches,

maybe a hair taller, and currently 59 lbs. Ten and a half yrs old.

Olivia has been a little different. When she first started taking

asthma meds, she put on 20 lbs in two months....she was not quite 9,

then. Moon face, all that. She was tested for Cushings and that type

of thing, but all was neg. But, then it leveled out, and she grew a

bit. Now, she's 55 inches(or maybe just a 1/2 inch taller), and 66

lbs. At least she was......now she has a horrible sinus infection w/

back and head pains, and hasnt been eating well at all this week.

She's starting to look like her head is too big for her body. And her

shoe size hasnt changed in years. We've been trying to figure out the

GI issues for over a yr. She gets awful stomach aches, head aches, and

vomiting. We are also testing her for food allergies next week(her IGs

are normal), and pushed up her next GI appt to May 9. I know we tested

her thyroid when this started, last spring, and that was ok. Maybe it

merits a re test? I'll ask.

My youngest son was FTT for a time, before we found and addressed his

health issues. He's still somewhat short, but not thin:), and hes'

starting to grow some. Some of his problem was just being constantly

sick, and some was reflux....he did some better after the fundo, but

the biggest help has been IVIG.

Both of my girls have had a rotten time with sinus infections this

winter, so Im sure that doesnt help. but I make sure they eat, even

when they are sick, and drink. Savannah can be very controlling,

always has been that somewhat " difficult " type of personality.....and

on some level, I think I might be afraid that if I force foods....or

if she senses this is very important to me, she'll use it to try to

gain some control.

My kids love to bake, really, they love to " make " anything. So we do

bake a lot.

I wonder if some of it, is just that when you are sick, you are

burning more calories trying to get well, and if you are always " sick "

feeling, then it becomes your normal, as in Savannah's case. She

doesnt stop.....she keeps running and playing.....so that burns

calories, and then she's also sick and tyring to get well, and that

burns probably more than she takes in.

But I do really feel that if they didnt have the stomach aches, they'd

take a lot more in. Esp Olivia.....she does often say, " I just cant

eat " when her stomach/head is in a lot of pain. Or when she's just

finished a round of puking. So I feel like if we could just solve the

question of WHY she feels that way, why she gets the headaches( I

think they are migraines), why she throws up/has such awful stomach

pains......she would be able to take more in, and gain/at least, not

lose so much.

But in the meantime, I guess Im starting to feel a little bit paranoid

about it. What are the odds of having two daughters with the same

mysterious problem like this? And I have to take a food log in to the

dietician, and its going to look awful, bc one kid has this sinus

infection and has been sick all week and not eating much.

The allergiest we are supposed to see is supposed to be good with

eosonophiliac disorders, and personally, I think both the girls have a

lot of those symptoms.

thanks:)

valarie

In , Barbara Jimenez <mother5590@...> wrote:

>

> I would not put yourself in the hot seat yet. And I know that you do

not probably logically think that it is your fault and I see how

diligent you are with your kids getting what they need through your

posts so maybe try looking at this thing in a new and fresh way.

>

> I know that this is most likely food and gut related but..... I am

wondering since I am hearing maybe a wee little bit from you that your

kids " do not want to eat " and I understand that you cannot make them.

I have been through this with my daughter to some degree. And for her

there was a stubborness that was going on that had a hint of power

around the not eating. (She now is 17 and pregnant and admits her

stubborness to the point of her hurting herself.)

>

> I worked with failure to thrive babies for years and there are MANY

issues that feed the problem not just one. So you need to hit it at

different levels to be successful in gaining wt. Just a bit of

experience but FTT is not a simple diagnosis. The goal is what you

need to focus on. So other thoughts would be around what they eat and

what gives them tummy aches and I am hearing through others that RAST

testing is not accurate with kids that have immune disfunction. Have

either of the girls had the test for celiac out of texas that is a

Saliva test rather than a blood test?. I understand it is used in

Europe and MUCH more accurate. Also how about thyroid or other

endocrine issues? there are many metobolic issues that prevent wt

gain. Also what is the wt to ht ratios and are they growing otherwise?

And what are your boys like or other girls in the extended family?

>

> Just brainstorming with you. So I have a thought....... Can you come

up with a reward system for both of the girls to put on wt. I am not

saying making it your being good or bad but " what if we give this a

try " . That they would both feel better, have more energy and maybe get

sick less if they try to put on 1 lbs this month. And then put

together a plan with them to go shopping with you and that they agree

to eat something every hour during the day. Even if it is only a

couple of bites. Then see if they put on 4 oz a week. Sometimes I

personally believe that happens with FTT is not only the physical

issues but also not getting enough overall calories. The hunger

sensation goes away and it becomes a viscious cycle. So the goal

would be to get them on board to be a part of the possible solution.

Tell them that you do not know if it will work but it would be worth a

try. The important thing is that maybe you could have fun with them

and teach them to cook

> during this time to get them more interested in food. I hope this

is help not a waste of your time.

>

> BARBIE

>

> FTT dx

>

> Today I received the dictation from our last dr appt, and it states

> that Savannah is now considered FTT. I think I " knew " this......just

> from the conversations we've had with drs lately. But seeing it in

> print has been very emotional for me.

> I dont know what else to do. We see a new dietician on Thursday.

> We've tried drinks like Ensure...... .some days, she'll drink it, most

> days, she wont. We've tried Balance Bars....she' ll eat, reluctantly,

> one flavor of those. She's been casein and egg free for over three

> yrs......we' ve started a casein challenge to see if she can tolerate

> it yet, just for higher calories. Switched to whole milk, adding

> butter to everything, adding vegetable oil to everything, eating ice

> cream every night. We're waiting on a new allergist to see, who's

> supposed to be very good. Pulmo wants to attempt a RAST test at this

> next infusion, just to see if anything comes up. If not, we're hoping

> to trial off for a couple months this summer, and we'll try more

> allergy testing then.

>

> Whats so frustrating to me, is that my other daughter is only a couple

> lbs heavier than the one with CVID.......and we cant get any weight on

> her, either. If she loses anymore, she'll be FTT, too.

>

> I feel like Im failing at something, but I honestly cant figure out

> what Im doing wrong.

>

> valarie

> mom to three w/cvid

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

April 22, 2008

Have they been tested for their Digestive enzymes?

I ask this because when Blake was 6, he went to Duke for the FTT as

well as the Immune issues. We discovered that Blake does NOT make

Trypsin or Trypsinogen. This is an enzyme that helps to digest

protein. This is where they confiremd the CVID & then the SCID. Once

we placed him on replacement enzymes(Cotazme in his tubefeeds & Creon

by mouth) he started to gain weight & stopped complaining about tummy

aches.

Today if he misses any of the Creon with meals & snacks, he really

has explosive poop & his stomach hurts so badly you would think he

was dying!!!

Maybe you can talk to teh Pulmonary Dr. to see if she would trial

them on some replacement enzymes.

Do they have any other issues besides the not eating? Have they been

tested for Cystic Fiprosis....these children have lots of weight

issues.

Blake has a DX of Swhachman Diamond Syndrome. EWe had been looking at

this since he was 3. We finally got teh tests saying that he

definitely had it. I know Patty's boys have Swachman Diamond Syndrome.

They have tumm & weight gain issues as well.

I can tell you this, when Blake was put on IV Aredia every 12 weeks,

he really gained a lot of weight, He has Osteoporosis due to steriods

which have been used since birth.

He stared the IV Aredia just as he started to hit puberty.....Maybe

when they hit puberty things will get better on the weight issue, &

they will want to do things to keep up with the peers....you never

know!!

Another suggestion for the dietician is to ask if she can get you

some Polycose. It is a High Caloric powder that you can put in & on

everything the eat & it doesn't have a taste. It will not change the

way things taste & they will put on weight with out even being aware

tehy are being fed the calories.

I can also tell you that the weight issue is one way they can control

the situation. This was one way Blake could get control of his whole

medical & emotional situation....he would even go as far as turning

off the feeding pump at night or better yet, keep it running &

disconnect it from his button & put let it hang over the trash can!!!!

That did not go over well with me nor the Dr.. So we added teh

polycose.

Good Luck

Mom to Blake 16, SCID with Complete T-Cell Dysfunction,SDS, Sensory

issues, Asperger's Syndrome, severe Asthma, GERD.CAPD/ADHD/ODD/OCD

http;//www3.caringbridge.org/sc/blakester

The Greatest Adventure of MY Lifetime

FTT is not a simple diagnosis

Today I received the dictation from our last dr appt, and it states

that Savannah is now considered FTT. I think I " knew " this

I dont know what else to do. We see a new dietician on Thursday.

We've tried drinks like Ensure...... .some days, she'll drink i days,

she wont.

> > Whats so frustrating to me, is that my other daughter is only a

couple

> > lbs heavier than the one with CVID.......and we cant get any

weight on

> > her, either. If she loses anymore, she'll be FTT, too.

April 23, 2008

Valarie I guess what I was trying to say is there is often a psychological

component to this. So it is putting it back in there hands that it is the goal

to eat more but they can help you figure out how to do so. My best experience

in working with my kids and many more as a peds nurse is to give them as much

control as you can but also put some parameters on what you expect. With Lucas

I say there are some things in life that you have a choice and this is not one

of them. or this is one of your choices. I was suggesting that you try to get

them on board with eating something every hour a bite if nothing else sort of

like a pump would do. So if they will drink Ensure then 1oz every hour. It

really adds up. And when it is gone then there is a reward. I think often we

think kids are eating but waiting for 3 meals a day and being in a hurry with

every thing else going on is not enough. So the goal might be an extra 500 cal

per day. With my son it was 2

balance bars a day. We divided them in half and he could eat one half at

breakfast, mid morning after school and at bedtime. It really made it work for

us. And we have a ritual bedtime snack of PBand honey with a glass of milk.

Dividing a food into bites per day could be done with many foods but you need to

get organized and with a goal. It is also a balance with making it fun in some

way. Like cooking their favorite meal together and tasting it along the way.

They are both old enough to do that. Also make sure they are not drinking too

much juice. It will not help with wt gain and will make it so they are not

hungry. We only drink water or milk (Lactaid) at our house for that reason. No

pop and no coolaid because the sugar quenches the hunger. Just some things we

have done with FTT.

He has been FTT several time during his life and blown up with Steroide but the

worst was due to some Psychotropic meds Lucas went from FTT to obese in 3

months. He basically went from 45 to 90lbs it was sad to see him get fat. but

then they put him on Adderall last year and he lost 25lbs in 3 mo and they were

worried about his wt. He went from 126 to 100lbs. He is now about 5ft 3inches

and 111lbs and 12, I think he looks great but I only give him the Adderall when

he is at school and also not during the summer so he can pack on a few lbs. He

wants to be skinny now so I have to work with him to eat because he will just

not eat for all day ( he talks about not wanting to get fat so we talk

nutrition) and then when it is bedtime he says he is hungry. Drives me crazy.

So that is one of the reason we started the PBand J with milk at bedtime. So we

do not fight about it being bedtime. I think the YO YOING is bad and I worry

about his body handling it well.

But we are good for now.