Re: /CHoP Feeding team?

August 7, 2003

Hi ,

Wow. I had a terrible experience with the feeding team at CHoP and refuse to

take back there. Her problems were not as severe as Emma's. the doc I

saw was fine but the rest of the people I saw there were either just suggesting

what I was already doing or they were complete idiots-especially the office

people who couldn't manage to fax the tube feed scrips to their own home health

care company! I'm glad your experience was better! as I understand it, many of

the people who were there when I had such a problem with them are gone now, but

I still don't want to deal with them. I guess you could say that they left a

bad taste in my mouth! (lol)

Re: introduction and comments on diet in cf

Ashauna,

In addition to the other suggestions, there are a number of ways to

increase calories for an infant. I would definately look into increasing

the calories in his formula, your doctor should be able to provide the

formula to do this. If not, I am sure someone on the list knows. My

daughter is now 3 years old and developed severe eating problems around 7

months. At about 13 months, she had to be hospitalized for total refusal

to eat or drink. She was not on the weight charts and was hardly peeing

in her diaper at all. She was started on an NG tube and over a period of

time slowly begain eating again. Her weight is now near the 50th

percentile. Her last visit, she lost weight but other than that she has

really put on a lot of weight. She still has a lot of eating problems.

She isn't real good at chewing, she tends to vomit because she doesn't

chew things well enough and then when she swallows it gets caught in her

throat. As a result, she eats mainly pureed foods. She still has acid

reflux and her problems with vomiting go up and down. However, overall

she is doing well.

So ... how did we get from there to here. Well, first of all, we add in

extra calories whereever we can. Ask his doctor about putting butter or

margarine in his food. We add this to all of Emma's meats and veggies.

You can add in a supplement such as Scandical or Duocal as well. The

doctor should be able to recommend a supplement. Our daughter is seen

regularly by the feeding team at Children's Hospital of Philadelphia and

they made several recommendations. One of the big recommendations was to

not feed her any baby food and to simply puree table foods instead. They

indicated that taste of jarred baby food is very mild and if you want

them to ever switch to eating regular food, they need to get used to the

taste of it and that jarred foods do not have enough taste to make them

have a desire to eat. I don't know how true this is but we puree all of

Emma's foods. We make everything really smooth, mainly using milk (you

could use formula since he is to young for milk???) We add bananas to

many of her fruits to add calories (bananas are very calorie dense) and

to thicken them up while still keeping them smooth. We do all of this in

a blender at the highest speed. My daughter is on night feeds but that

is primarily because she still hates drinking. She gets most of her

calories from her pureed food. We feed her four meals a day and we feed

her the exact same amount at each meal otherwise she vomits. Any

variations in the routine tends to cause more vomiting in general. It's

a science and we had to figure out what worked for her which can take a

while.

I could go on and on with advise. If you have any questions, let me

know. We definately have experience with problems eating.

Good Luck!

- mom to Emma 3 years old w/cf and reflux and Isabelle 5 years

wo/cf

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August 8, 2003

Hi ,

I wouldn't say I agree with everything the feeding team has done. She

is still having problems and they always want to blame the vomiting for

why they can't try anything new. It's a hard balance between the advise

they give and the advise Hanna and Dr. Mascarenhas give. It always

seems to differ. I have had some problems with the office staff as well.

I kept calling to schedule an appointment and they never answered their

phone and I would leave messages but they would never call back.

Finally, I mentioned it to Hanna and she called them up directly

and complained. They called me the same day to schedule an appointment.

She told me I was supposed to stop by after Emma's appointment and

schedule it and that's why we had problems. Of course, I explained that

I had stopped by but she had gone home for the day. SO ... yeah their

office staff leaves much to be desired. However, they have gotten Emma

to drink and have helped stablize her eating problems. I just want to

progress further from here. Anyway, it's time for me to go to bed.

Talk to you later,

- mom to Emma 3 years old w/cf and reflux and Isabelle almost 5

years old wo/cf

On Thu, 7 Aug 2003 07:36:00 -0400 " ANDREA FITTING "

writes:

> Hi ,

> Wow. I had a terrible experience with the feeding team at CHoP and

> refuse to take back there. Her problems were not as severe

> as Emma's. the doc I saw was fine but the rest of the people I saw

> there were either just suggesting what I was already doing or they

> were complete idiots-especially the office people who couldn't

> manage to fax the tube feed scrips to their own home health care

> company! I'm glad your experience was better! as I understand it,

> many of the people who were there when I had such a problem with

> them are gone now, but I still don't want to deal with them. I

> guess you could say that they left a bad taste in my mouth! (lol)

>

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

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August 9, 2003

Hi ,

Dr Weiner and Hanna both called the feeding team for me at different

times. I just found the office so unprofessional that I refused to deal with

them any more. had some mild food aversions- she would chew her food but

not swallow it- that I think were partially due to the gagging problems she had

after the nissan surgery and g-tube placement but they didn't want to address

that at all. I became too frustrated with them to even listen to their excuses.

It got to a point where I stopped being nice to them and I told them just what I

thought of their professionalism. (not much) I told them I would get help

elsewhere. I didn't end up going to anyone else. CF clinic writes her scrips

for the g-tube formula and duocal and we have muddled through on our own. Of

course 's problems were milder than Emma's. What doc does she see at the

feeding team? I can't think of the name of the doc we saw. She was blonde and

I liked her. I see her occasionally when we go to the cafeteria for lunch on

clinic days.