What to feed during brown-out?

[Guest guest]

What do you feed your kids during mito brown-outs? Sheldon's

pediatrician said that we're going to have to consider a g-tube in a

week or two if he doesn't start gaining weight. He seems right now to

just be recovering from a brown-out. During it he was very tired and

vomited once a day for 4 days. He's supposed to be on a high-fat diet

but when he's so tired it seems like he just can't digest high-fat or

normal food, I have to feed him baby food. I think he vomits when he

eats too much 'normal' food and can't digest it. It's also a struggle

to get him to drink anything at those times. Does this happen to

others? What do I feed him? When can I start getting more calories

into him? (When he's like that the pedia sure is too hard for him to

digest and makes him vomit.)

Thanks.

--

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Stacey Fleming

flemings@...

[Guest guest]

Stacey,

My advice is pretty much the same as s advice. I would try

pudding, yogurt, anything Sheldon can keep down. Pasta, rice, bread

with peanut butter.

I would also like to say that I agree with about the gtube.

It has saved 's life. When times like these happen to know it

is there to get the caloric and fluid in her that we need is a

godsend. It is wonderful and we have avoided the ER probably 20

times or so in the last couple of years because we had this. She had

the gtube for about 1 month after surgery then switched to a mic-key

button which is about the size of a half dollar. Is does not get in

the way and is wonderful. She had a great deal of cyclical vomiting

when she was small and started periactin. It did increase her

weight, which didn't need increased, but stopped the cyclcal

vomiting almost immediatley. We actually tried to get her off of it

about 1 yr. ago and she started to vomit immediately- so we put her

back on.

Hope this helps, Dawn

[Guest guest]

I'll have to ask about the MCT oil. We're getting in to see a

nutritionist at the end of the month.

The g-tube does seem like such a major step. In my mind, it seems

like it would mean that he is very sick and make him seem sicker than

he is. Does that make sense? It would be so nice to be able to hydrate

him that way when he won't drink though. I'm getting to the point

where I don't know what else to do.

When we

had bad feeding issues with Grace, we added MCT oil to her food.

It is easier to digest, and can really put some weight on. Now

we use Periactin, for her migranes but double the dose because there

is a side affect of increased appetite.

Both of these work but are prescription.

During

brown outs, we also see a drastic decrease in appetite. We

usually give her Pedialyte as " juice " to make sure she is

well hydrated. We have good luck with the pediasure, but

Carnation Instant Breakfast is easier to drink and does the same

thing. I would mix the Carnation with Whole milk, or even add

half and half to it (for the calories).

Although

Grace does have a g tube, we have yet needed to resort to feeds

through it during a brown out. (So far she only has the g tube

for hydration during illness, and because she takes her medication

through it.)

As far as

the G tube is involved, they really are not that bad. Honestly

it has helped Grace out so much. I know it is a tough decision,

but it is better to do it when he is stronger, than wait until he is

in crisis to do it. We have never regretted for a minute doing

it for her.

,

Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

newest arrival is due Sept. 20th

For the latest baby info, and to see our

family check out:

www.BabyCountDown.com?baby=4007

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Ugh, he just vomited again after 6 oz of pedia sure. I feel like

I have to be so careful about everything with him. Like if I'd only

given him 3 oz of pedia sure he might have kept it down. I don't know

what we're going to do besides a g-tube at this point. He can tolerate

easy-to-digest foods but that's it right now.

On top of all this he had a 24-hr. EEG Monday/Tue. of this

week. He's scheduled for an MRI under general anesthesia on Friday and

we're hoping to take a vacation in Maine Sun thru Wed. I feel so bad

about the vacation, I know it will set him back when he's already

struggling. It's just that the rest of the family really needs this,

we haven't gone on a vacation in a long time.

Stacey,

My advice is pretty much the same as s advice. I would try

pudding, yogurt, anything Sheldon can keep down. Pasta, rice,

bread

with peanut butter.

I would also like to say that I agree with about the

gtube.

It has saved 's life. When times like these happen to know

it

is there to get the caloric and fluid in her that we need is a

godsend. It is wonderful and we have avoided the ER probably 20

times or so in the last couple of years because we had this. She

had

the gtube for about 1 month after surgery then switched to a

mic-key

button which is about the size of a half dollar. Is does not get

in

the way and is wonderful. She had a great deal of cyclical

vomiting

when she was small and started periactin. It did increase her

weight, which didn't need increased, but stopped the cyclcal

vomiting almost immediatley. We actually tried to get her off of

it

about 1 yr. ago and she started to vomit immediately- so we put

her

back on.

Hope this helps, Dawn

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Thanks for the support. I know many on this group are glad to

have the g-tubes. I know it would be so much easier for meds and

hydration.

The MCT

oil is a help, but it is gross. You can add it to almost

anything, but be forwarned. Grace quickly learned what had the

oil in it and what did not. We ultimatly ended up with the tube

because of this, in part. We were adding all of her medications

to food and drinks, eventually she figured it out and stopped eating.

Now that she can eat normal foods, without medications in it, her

appetite is pretty good. Granted we still use the Periactin as

an apetite stimulant.

Really

try not to think of the G tube, meaning he is very sick. For

Grace we rarely even use it, other than 2x a day for meds. She

has the mic key button, and it is very hard to notice through

clothes. I think the only time you can see it is when she is

wearing her bathing suit. Honestly, though nobody ever says

anything about it. I had one person once notice it and she only

thought she had dropped a piece of food down her shirt. (I ended

up explaining) For the most part we just think of it as it

belongs there now. I am so glad she does have it, because we

have never had to go to the emergency room for fluids. She does

have a protocol for IV fluids with a fever, diareah or vomiting, but

we are always able to maintain her until morning when we can get ahold

of her pediatrician to direct admit. This way I have no horror

stories of ER doctors who do not understand my child. She is

only ever seen by her doctors, who know her and her needs. It

really has saved us alot of hassle, and it helps her. It has

helped alot get her medicines so much more. Before she spit out

half of the meds, or totally refused to take them (that is why we hid

them in food.) She has made signifigant improvement in her

bloodwork, from getting accurate doses every day. Try thinking about

it, it is not so bad. For us that little button is worth it's

weight in gold.

,

Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

newest arrival is due Sept. 20th

For the latest baby info, and to see our

family check out:

www.BabyCountDown.com?baby=4007

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Stacey,

I am so sorry that he is sick again. I understand how hard it is

to know what is causing the vomiting and how random it seems. When

the MRI under anesthesia is scheduled could they do a gtube at the

same time so he would only have to go under once? have they tried

anything for the vomiting? Phenergan? Ativan? periactin?

The thought with cyclical vomiting as I have been told is this:

The body has what they call two brains: In the head of course and in

the belly. the cyclical vomting can be caused by what they call an

abdominal migraine. They should seriously consider giving him

soemthing to stop the vomiting. Maybe you could call the doc

tomorrow and see what he says?

Good Luck, Dawn

[Guest guest]

I hope you do not take this the wrong way, but - if you know that this vacation is going to set him back, but the rest of the family needs a vacation-could you have a relative watch him while the rest of the family goes to Maine? Or if one parent stays home with him? Or reschedule his MRI? If he has any problems with the anesthesia, you may have to cancel the trip anyway.

It is very difficult on everyone when there is one member (or more) is ill or has special needs- and no easy answers as to whose emotional needs come first. I am sure you need a vacation as you sound like his primary caregiver, but your other kids may need a break without him & his needs also.

He may want a break from having to be the "downer" or vice versa- trying to be happy when he actually is not well. I have done all of the above options to meet the most needy's needs, and they all worked out.

No, not everyone was 110% happy, but tradeoffs are sometimes very necessary to maintain everyone's individual sanity throughout all this.

Cindy-GA

Re: What to feed during brown-out?

Ugh, he just vomited again after 6 oz of pedia sure. I feel like I have to be so careful about everything with him. Like if I'd only given him 3 oz of pedia sure he might have kept it down. I don't know what we're going to do besides a g-tube at this point. He can tolerate easy-to-digest foods but that's it right now.

On top of all this he had a 24-hr. EEG Monday/Tue. of this week. He's scheduled for an MRI under general anesthesia on Friday and we're hoping to take a vacation in Maine Sun thru Wed. I feel so bad about the vacation, I know it will set him back when he's already struggling. It's just that the rest of the family really needs this, we haven't gone on a vacation in a long time.

Stacey,My advice is pretty much the same as s advice. I would trypudding, yogurt, anything Sheldon can keep down. Pasta, rice, breadwith peanut butter. I would also like to say that I agree with about the gtube.It has saved 's life. When times like these happen to know itis there to get the caloric and fluid in her that we need is agodsend. It is wonderful and we have avoided the ER probably 20times or so in the last couple of years because we had this. She hadthe gtube for about 1 month after surgery then switched to a mic-keybutton which is about the size of a half dollar. Is does not get inthe way and is wonderful. She had a great deal of cyclical vomitingwhen she was small and started periactin. It did increase herweight, which didn't need increased, but stopped the cyclcalvomiting almost immediatley. We actually tried to get her off of itabout 1 yr. ago and she started to vomit immediately- so we put herback on. Hope this helps, DawnPlease contact mito-owner with any problems or questions.

[Guest guest]

,

If you have to do the g-tube, it is not so bad. My husband and I struggled with the decision for a few months and then finally had no choice b/c our son just could no longer digest food. He is now on the g-tube and has so much more energy and is really doing wonderful. I'm so glad we made the decision. He gets Alimentum formula (same stuff he had as a baby) that is "pre-digested" so it's easy for him to break down.

Good luck,

Anne R