RE: Re: testing other siblings/Dyslexia (long-Asenath's family)

[Guest guest]

I have saw improvemnt in her swallowing this week so I guess she is still improving. BUT...I am still very concerned by her eating habits. She has lost another pound here at home. She did descent while in the hospital. I think they have so many choices and 100% attention is given on her alone so we could really push the foods there. Here at home, we provide good meals but she just isn't interested. We try everything and she still only picks at her food. We took her to Red Lobster tonight and she ate a little but not hardly enough. She was averaging between 500-800 cal. per day when we did a 5 day diary a couple weeks ago. (for Dr. Whiteman) I am quite tired of worrying about how much she ate and if she got enough to survive. Meal times are so stressful! Darla: mom to Asenath Re: Re: testing other siblings/Dyslexia (long-Asenath's family) have rings under their eyes no matter how much they sleep. Darla, This is pretty common among all allergy sufferers. I have pretty nasty allergies (eczema and hayfever) and always have dark circles under my eyes. When I am having a bad flare, I look like I have 2 black eyes, as they also become swollen and puffy.It sounds you you have your hands very full with your family. I hope you find some answers! Is Asenath continuing to improve on the supplements? (I hope so!)e, Chelse'a mom (nonspecific mito) Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Darla:

One thing I remember from a doctor at one of our support meetings here

in Wisconsin he pointed out that mito kids don't always have an appetit

even though they haven't eaten a while. Some thing similiar to when

patients have cancer or some other illness like that where their appetit

button doesn't register. I know that happens with Leah. Except

she gets really grumpy and some times we just need to try and get some

food in her for her to taste to get her to eat. Another thing I am

doing with Leah is giving her pedisure in the morning. At least she

is getting over 200 calories and then try "brunch" an hour or two later.

I found she doesn't like to eat right away in the morning or if I do feed

her in t he morning she isn't hungary for lunch and I hate to send her

to school without much in her stomach. Would your daughter like a

smoothie. More pureed foods? If she doesn't have swallowing

issues you could try a less thick smoothie. May be make it with pedisure.

Just a thought. I know we hate to see our kids lose weight and then

we only think about how to get food in them and it is a struggle for you

as a parent and the child who doesn't want to eat. Or may be try

smaller more frequent meals through out the day; which I know could be

a problem for you because you are busy with raising all your other children.

Just a few thoughts for you.

Nerenhausen mom to Leah

Darla Klein wrote:

I have saw improvemnt

in her swallowing this week so I guess she is still improving. BUT...I

am still very concerned by her eating habits. She has lost another

pound here at home. She did descent while in the hospital.

I think they have so many choices and 100% attention is given on her alone

so we could really push the foods there. Here at home, we provide

good meals but she just isn't interested. We try everything and she

still only picks at her food. We took her to Red Lobster tonight

and she ate a little but not hardly enough. She was averaging between

500-800 cal. per day when we did a 5 day diary a couple weeks ago. (for

Dr. Whiteman) I am quite tired of worrying about how much she ate

and if she got enough to survive. Meal times are so stressful! Darla:

mom to Asenath

Re: Re: testing other

siblings/Dyslexia (long-Asenath's family)

have

rings under their eyes no matter how much they sleep.

Darla, This is pretty common

among all allergy sufferers. I have pretty nasty allergies (eczema and

hayfever) and always have dark circles under my eyes. When I am having

a bad flare, I look like I have 2 black eyes, as they also become swollen

and puffy.

It sounds you you have your

hands very full with your family. I hope you find some answers! Is Asenath

continuing to improve on the supplements? (I hope so!)

e, Chelse'a mom (nonspecific

mito)

Please contact mito-owner

with any problems or questions.

[Guest guest]

We have just been getting quite frustrated with the whole thing. We try everything. The nuticianists we have saw (5) have said we are doing everything right. She just won't eat much of what we get for her unless we literally put it in her mouth. And then after a couple bites she clamps her mouth. Even things she seemed to love just a couple days before. We were supposed to have a feeding tube placed at Mayo last week but it was postponed. Now I am wondering if it was the right thing to do. The smoothy thing sometimes works. We try pediasure to no avail. Maybe I will try the pediasure smoothy thing. I try food thtoughout the day. Every chance we get that she will eat, we take. Thanks for the help. Asenath doesn't like morning feeding either. Even when she seems healthier she doesn't eat. Darla: mom to Asenath Re: Re: testing other siblings/Dyslexia (long-Asenath's family) have rings under their eyes no matter how much they sleep. Darla, This is pretty common among all allergy sufferers. I have pretty nasty allergies (eczema and hayfever) and always have dark circles under my eyes. When I am having a bad flare, I look like I have 2 black eyes, as they also become swollen and puffy. It sounds you you have your hands very full with your family. I hope you find some answers! Is Asenath continuing to improve on the supplements? (I hope so!) e, Chelse'a mom (nonspecific mito) Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I can relate. Before Cam's tube I could not feed him. Now, of course he has the tube but I still can not get adequate calories in or get him to gain weight. I hate they documenting all food, bm's, meds, vomits etc. but I am trying to find a pattern or at least be able to share more info with the docs.

Hope she will eat better. Have they tried having her drink her calories? Like pediasure?

-----Original Message-----From: Darla Klein Sent: Friday, January 17, 2003 8:02 PMTo: Mito Subject: Re: Re: testing other siblings/Dyslexia (long-Asenath's family)

I have saw improvemnt in her swallowing this week so I guess she is still improving. BUT...I am still very concerned by her eating habits. She has lost another pound here at home. She did descent while in the hospital. I think they have so many choices and 100% attention is given on her alone so we could really push the foods there. Here at home, we provide good meals but she just isn't interested. We try everything and she still only picks at her food. We took her to Red Lobster tonight and she ate a little but not hardly enough. She was averaging between 500-800 cal. per day when we did a 5 day diary a couple weeks ago. (for Dr. Whiteman) I am quite tired of worrying about how much she ate and if she got enough to survive. Meal times are so stressful!

Darla: mom to Asenath

Re: Re: testing other siblings/Dyslexia (long-Asenath's family)

have rings under their eyes no matter how much they sleep. Darla, This is pretty common among all allergy sufferers. I have pretty nasty allergies (eczema and hayfever) and always have dark circles under my eyes. When I am having a bad flare, I look like I have 2 black eyes, as they also become swollen and puffy.It sounds you you have your hands very full with your family. I hope you find some answers! Is Asenath continuing to improve on the supplements? (I hope so!)e, Chelse'a mom (nonspecific mito) Please contact mito-owner with any problems or questions.

[Guest guest]

I have tried Pediasure but she seems to hate it and only drinks a sip or two. I have also tried smoothies with it. I think nothing will help because she just doesn't have an appetite and the seizure meds only contribute to the problem. Darla: mom to Asenath Re: Re: testing other siblings/Dyslexia (long-Asenath's family) have rings under their eyes no matter how much they sleep. Darla, This is pretty common among all allergy sufferers. I have pretty nasty allergies (eczema and hayfever) and always have dark circles under my eyes. When I am having a bad flare, I look like I have 2 black eyes, as they also become swollen and puffy.It sounds you you have your hands very full with your family. I hope you find some answers! Is Asenath continuing to improve on the supplements? (I hope so!)e, Chelse'a mom (nonspecific mito) Please contact mito-owner with any problems or questions.

[Guest guest]

Darla- you mention the seizure meds are not helping her appetite. What is

she on? Is it upsetting her stomach in an acid sort of way? Or is it

making her too lethargic to eat? Can you try crazy straws or a fun new

cup? I found Lily really up-ed her intake of water- when she discovered

the wonderful world of straws. And as a last resort-what about a

washcloth in liquid. Lily also enjoyed sucking on a washcloth.

My thoughts are with you.

Mom to Angel Lily, Red & Ada

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[Guest guest]

Asenath seems to take liquids such as water and milk well. It is the meats, vegetables, and fruit on a REGULAR basis that is the issue. She averages one good meal a day if you total it all. We are lucky to get 2 decent meal rarely into her tummy. She takes Topamax and handles it well. It has a side affect of lowering the appetite though. Thanks for the advice. I think we are getting to the point where a feeding tube may be needed if we want to get her to get enough nutrician on a regular basis... Darla: mom to Asenath Re: Re: testing other siblings/Dyslexia (long-Asenath's family) Darla- you mention the seizure meds are not helping her appetite. What isshe on? Is it upsetting her stomach in an acid sort of way? Or is itmaking her too lethargic to eat? Can you try crazy straws or a fun newcup? I found Lily really up-ed her intake of water- when she discoveredthe wonderful world of straws. And as a last resort-what about awashcloth in liquid. Lily also enjoyed sucking on a washcloth.My thoughts are with you.Mom to Angel Lily, Red & Ada________________________________________________________________Sign Up for Juno Platinum Internet Access TodayOnly $9.95 per month!Visit www.juno.comPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla,

Maybe the g-tube will help. I know it is not ideal but it can be a lifesaver. I like the ideas people gave about the washcloth and maybe ice chips or fun straws???

Good luck, sorry I am not much help,

Riley

-----Original Message-----From: Darla Klein Sent: Sunday, January 19, 2003 6:52 PMTo: Mito Subject: Re: Re: testing other siblings/Dyslexia (long-Asenath's family)

I have tried Pediasure but she seems to hate it and only drinks a sip or two. I have also tried smoothies with it. I think nothing will help because she just doesn't have an appetite and the seizure meds only contribute to the problem.

Darla: mom to Asenath

Re: Re: testing other siblings/Dyslexia (long-Asenath's family)

have rings under their eyes no matter how much they sleep. Darla, This is pretty common among all allergy sufferers. I have pretty nasty allergies (eczema and hayfever) and always have dark circles under my eyes. When I am having a bad flare, I look like I have 2 black eyes, as they also become swollen and puffy.It sounds you you have your hands very full with your family. I hope you find some answers! Is Asenath continuing to improve on the supplements? (I hope so!)e, Chelse'a mom (nonspecific mito) Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

Have you tried the Pedialyte popsicles? We use them at the hospital

where I work and the kids seem to like them. Just another thought.

Kathy, grandma to Audrey,17mos