RE: Diarrhea - what do u do?

[Guest guest]

Anne,

Diarrhea that is really bad and the kids are not able to take in enough nutrition results in admission for them just like with vomiting or fever that doesn't come down. Do you have an admission protocol or instructions? Is anyone else sick? Does the stool smell like the worst thing you have ever smelled--could be rotovirus (a little early in the season, but it is already in Michigan) or if he has been on antibiotics could be C. diff, any new meds or changes, or could just be a stomach bug. We have been told to use Gateorade or power ade rather than pedialyte because there is more sugar in the others. Hope he gets feeling better soon.

Tammy--Madelaine and 's (just turned 5! on Thursday) momAReckling@... wrote:

Help! Asher's had diarrhea now for about 3 days. I'm able to keep him hydrated and his electrolytes okay by doing a slow drip of Pedialyte, BUT a whole liter (which is what you give in a 24 hour period) only has 100 calories as opposed to his normal tube formula which has 1000 overnight.I'm scared that the lack of calories will cause a "crash". He's more lethargic than usual but is still hanging in there.What do you do during these times?Thanks in advance,Anne RPlease contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hello

My Name is Holly Sauer and I have 6 1/2 year old son named . He Mito complex I, Charge syndrome which includes being deaf,trach,feeding tube (NPO), thyroid problems, Colabomas in eyes, autism with sever behavior issues,heart issues,renal tubular acidosis and the list goes on. My concern is that for the past 2 months he has diarrhea everyday. It starts out being paste and then goes loose into water. He not putting weight on. 1 month ago they increased his feeds from 250ml to 280ml and has not put on any weight still 43lbs. The doctors made me get stool cultures and I did over a weekend and froze it till Monday. All the blood and stool cultures came back fine. Just said try amodium. Which I did and that constipates him for 3-4 days. Last week he had a rough day at school on Wednesday. His stools were so loose they came out of his diaper down his leg. There are some days where he has 3-5 diapers of loose stool in a school day from 8:30 to 2:15. So this Friday they will be doing a colonoscopy and endoscopy to check everything. Is there anyone out there that has had any problems like this? His diet consists of Pediasure. Does not eat by mouth. Do these children have bowel issues.

Please help with any information.

Thank You

Holly Sauer

Orlando, Florida

Re: Diarrhea - what do u do?

Anne,

Diarrhea that is really bad and the kids are not able to take in enough nutrition results in admission for them just like with vomiting or fever that doesn't come down. Do you have an admission protocol or instructions? Is anyone else sick? Does the stool smell like the worst thing you have ever smelled--could be rotovirus (a little early in the season, but it is already in Michigan) or if he has been on antibiotics could be C. diff, any new meds or changes, or could just be a stomach bug. We have been told to use Gatorade or power ade rather than pedialyte because there is more sugar in the others. Hope he gets feeling better soon.

Tammy--Madelaine and 's (just turned 5! on Thursday) momAReckling@... wrote:

Help! Asher's had diarrhea now for about 3 days. I'm able to keep him hydrated and his electrolytes okay by doing a slow drip of Pedialyte, BUT a whole liter (which is what you give in a 24 hour period) only has 100 calories as opposed to his normal tube formula which has 1000 overnight.I'm scared that the lack of calories will cause a "crash". He's more lethargic than usual but is still hanging in there.What do you do during these times?Thanks in advance,Anne RPlease contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

Hello

My Name is Holly Sauer and I have 6 1/2 year old son named . He Mito complex I, Charge syndrome which includes being deaf,trach,feeding tube (NPO), thyroid problems, Colabomas in eyes, autism with sever behavior issues,heart issues,renal tubular acidosis and the list goes on. My concern is that for the past 2 months he has diarrhea everyday. It starts out being paste and then goes loose into water. He not putting weight on. 1 month ago they increased his feeds from 250ml to 280ml and has not put on any weight still 43lbs. The doctors made me get stool cultures and I did over a weekend and froze it till Monday. All the blood and stool cultures came back fine. Just said try amodium. Which I did and that constipates him for 3-4 days. Last week he had a rough day at school on Wednesday. His stools were so loose they came out of his diaper down his leg. There are some days where he has 3-5 diapers of loose stool in a school day from 8:30 to 2:15. So this Friday they will be doing a colonoscopy and endoscopy to check everything. Is there anyone out there that has had any problems like this? His diet consists of Pediasure. Does not eat by mouth. Do these children have bowel issues.

Please help with any information.

Thank You

Holly Sauer

Orlando, Florida

Re: Diarrhea - what do u do?

Anne,

Diarrhea that is really bad and the kids are not able to take in enough nutrition results in admission for them just like with vomiting or fever that doesn't come down. Do you have an admission protocol or instructions? Is anyone else sick? Does the stool smell like the worst thing you have ever smelled--could be rotovirus (a little early in the season, but it is already in Michigan) or if he has been on antibiotics could be C. diff, any new meds or changes, or could just be a stomach bug. We have been told to use Gatorade or power ade rather than pedialyte because there is more sugar in the others. Hope he gets feeling better soon.

Tammy--Madelaine and 's (just turned 5! on Thursday) momAReckling@... wrote:

Help! Asher's had diarrhea now for about 3 days. I'm able to keep him hydrated and his electrolytes okay by doing a slow drip of Pedialyte, BUT a whole liter (which is what you give in a 24 hour period) only has 100 calories as opposed to his normal tube formula which has 1000 overnight.I'm scared that the lack of calories will cause a "crash". He's more lethargic than usual but is still hanging in there.What do you do during these times?Thanks in advance,Anne RPlease contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

My son is just the opposite. His bowls get

stuck and he can’t push them out – so much so that if I’m not

on top of it he will vomit up a bowl movement! Disgusting to see and to hear. I

now have several protocols so that he won’t get like that again.

Sue Ann

Re: Diarrhea -

what do u do?

Hello

My Name is Holly Sauer and

I have 6 1/2 year old son named . He Mito complex I, Charge

syndrome which includes being deaf,trach,feeding tube (NPO), thyroid problems,

Colabomas in eyes, autism with sever behavior issues,heart issues,renal tubular

acidosis and the list goes on. My concern is that for the past 2 months

he has diarrhea everyday. It starts out being paste and then goes loose

into water. He not putting weight on. 1 month ago they increased

his feeds from 250ml to 280ml and has not put on any weight still 43lbs.

The doctors made me get stool cultures and I did over a weekend and froze it

till Monday. All the blood and stool cultures came back fine. Just

said try amodium. Which I did and that constipates him for 3-4 days.

Last week he had a rough day at school on Wednesday. His stools were so

loose they came out of his diaper down his leg. There are some days where

he has 3-5 diapers of loose stool in a school day from 8:30 to 2:15. So

this Friday they will be doing a colonoscopy and endoscopy to check everything.

Is there anyone out there that has had any problems like this?

His diet consists of Pediasure. Does not eat by mouth. Do these

children have bowel issues.

Please help with any

information.

Thank You

Holly Sauer

Orlando, Florida

Re:

Diarrhea - what do u do?

Anne,

Diarrhea that is really

bad and the kids are not able to take in enough nutrition results in admission

for them just like with vomiting or fever that doesn't come down. Do you

have an admission protocol or instructions? Is anyone else sick?

Does the stool smell like the worst thing you have ever smelled--could be

rotovirus (a little early in the season, but it is already in Michigan) or if

he has been on antibiotics could be C. diff, any new meds or changes, or could

just be a stomach bug. We have been told to use Gatorade or power ade

rather than pedialyte because there is more sugar in the others. Hope he

gets feeling better soon.

Tammy--Madelaine and

's (just turned 5! on Thursday) mom

AReckling@...

wrote:

Help! Asher's had diarrhea now for about 3 days. I'm

able to keep him hydrated and his electrolytes okay by doing a slow drip of

Pedialyte, BUT a whole liter (which is what you give in a 24 hour period) only

has 100 calories as opposed to his normal tube formula which has 1000 overnight.

I'm scared that the lack of calories will cause a

" crash " . He's more lethargic than usual but is still hanging in

there.

What do you do during these times?

Thanks in advance,

Anne R

Please

contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

Welcome to the group. We also deal with the chronic diarrhea and have had

success thankfully with the Imodium. My 4 year old (48 lbs) takes 4-5 ml.

daily and my 14 month old (27 lbs.) takes 3 ml. daily. We are in the same

boat presently with Asenath in that if she keeps having problems they may do

a colonoscopy. She and Zipporrah will have diarrhea just like your son with

it running down their legs. The difference with our kids though is that my

girls have had the problem their whole lives. Yes, it definitely gets old!

Both my girls also get feedings of Pediasure w/ fiber. Asenath eats a

little bit orally and Zipporrah is 100% tube fed. I am not much help but it

does sound like your docs are doing what they can at least. I just wanted

you to know you are definitely not alone.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (13 months) (some with Mito symptoms)

Re: Diarrhea - what do u do?

>

>

> Anne,

>

> Diarrhea that is really bad and the kids are not able to take in enough

> nutrition results in admission for them just like with vomiting or fever

> that doesn't come down. Do you have an admission protocol or

> instructions? Is anyone else sick? Does the stool smell like the worst

> thing you have ever smelled--could be rotovirus (a little early in the

> season, but it is already in Michigan) or if he has been on antibiotics

> could be C. diff, any new meds or changes, or could just be a stomach bug.

> We have been told to use Gatorade or power ade rather than pedialyte

> because there is more sugar in the others. Hope he gets feeling better

> soon.

>

> Tammy--Madelaine and 's (just turned 5! on Thursday) mom

>

> AReckling@... wrote:

> Help! Asher's had diarrhea now for about 3 days. I'm able to keep him

> hydrated and his electrolytes okay by doing a slow drip of Pedialyte, BUT

> a whole liter (which is what you give in a 24 hour period) only has 100

> calories as opposed to his normal tube formula which has 1000 overnight.

>

> I'm scared that the lack of calories will cause a " crash " . He's more

> lethargic than usual but is still hanging in there.

>

> What do you do during these times?

>

> Thanks in advance,

> Anne R

>

>

> Please contact mito-owner with any problems or questions.

>

>

> __________________________________________________

>

[Guest guest]

Hi Anne, my Matt is usually constipated from feedings, but when he

does have diahrea, keeping him hydrated is important, but your right

is your child getting enough calories??? I would say let your

childs specialist know whats going on, maybe he will have a solution

for your child. For Matt his neuro and metobolic specialist dont

play around, when all else has failed, we get to the hospital, they

call ahead so the hospital we go to is ready for him, and they have

instuctions from Matts specialist on what to do, and we dont wait in

a waiting room, Matts biggest problem besides trying to keep him

hydrated is the loss of calories, he is failure to thrive, and GI

problems, with g-tube feedings. sometimes getting to the hospital

for IV infusions really help. They have many different IV infusions

not just for hydration, but to keep calories, and all the other

nutrients your child needs, expecially if a child has mito. And it

makes a big difference in Matt, and within hours of infusion you see

him go from lethargic to perking up and wanting to go home. Hope

you get the diahreia under control, without having to go to

hospital. But if you do have to go to hospital make sure your

childs doc calls ahead with instruction for care. Barb

[Guest guest]

Anne, just because your child is staying hydrated doesn't mean his

electrolytes are ok. They are two different things. Make sure you

call his pediatrician first thing in the morning ! Take him to the

ER sooner if you think he's going downhill. Dehydration is very

dangerous, but so is an electrolyte imbalance. Best of luck and I

hope he feels better soon.

bug

[Guest guest]

Holly,

Have they tried any other kind of formula on him?

Maybe it is the pediasure which is not working. My

son is on Peptamin Jr and Peptamin 1.5. This formula

is more easily digestible. Also, does he get 280 cc's

an hour or a day? My son has been tube fed since the

age of 4. He is J-tube fed and therefore gets it at

80 cc per hour for about 17 hours a day. He gets 4

cans a day and 120 cc of water with each can. At one

time he was getting 5.5 cans a day and it is 250cc per

can. How fast does the formula go in? Do you do it by

gravity or by pump? My son has problems with

constipation. We are on daily Milk of Magnesia (about

1 tsp) and also he is on Mestinon to aid in motility.

Did you try giving half a dose of Immodium? Sometimes

the dosage can be too high. Best of luck with the

endoscopies. Feel free to email me off list if you

have any further questions I can help you with.

Loriann- mom to and 12 yr old twins with

ADHD and Lucas 8 yrs old with suspected mito, (FOD)

suspected LCHAD, hypothyroid secondary to pituitary

malfunction, cortical visual impairment, GERD, J-J

tube

fed, global developmental delays, impaired motility,

ataxia, abnormal EEG, osteopenia

--- Sue Ann Bube wrote:

> My son is just the opposite. His bowls get stuck and

> he can't push them

> out - so much so that if I'm not on top of it he

> will vomit up a bowl

> movement! Disgusting to see and to hear. I now have

> several protocols so

> that he won't get like that again.

>

> Sue Ann

>

> Re: Diarrhea - what do u do?

>

> Hello

>

> My Name is Holly Sauer and I have 6 1/2 year old son

> named .

> He Mito complex I, Charge syndrome which includes

> being

> deaf,trach,feeding tube (NPO), thyroid problems,

> Colabomas in eyes,

> autism with sever behavior issues,heart issues,renal

> tubular acidosis

> and the list goes on. My concern is that for the

> past 2 months he has

> diarrhea everyday. It starts out being paste and

> then goes loose into

> water. He not putting weight on. 1 month ago they

> increased his feeds

> from 250ml to 280ml and has not put on any weight

> still 43lbs. The

> doctors made me get stool cultures and I did over a

> weekend and froze it

> till Monday. All the blood and stool cultures came

> back fine. Just

> said try amodium. Which I did and that constipates

> him for 3-4 days.

> Last week he had a rough day at school on Wednesday.

> His stools were so

> loose they came out of his diaper down his leg.

> There are some days

> where he has 3-5 diapers of loose stool in a school

> day from 8:30 to

> 2:15. So this Friday they will be doing a

> colonoscopy and endoscopy to

> check everything. Is there anyone out there that has

> had any problems

> like this? His diet consists of Pediasure. Does

> not eat by mouth.

> Do these children have bowel issues.

> Please help with any information.

>

>

>

> Thank You

>

> Holly Sauer

> Orlando, Florida

>

>

> Re: Diarrhea - what do u do?

>

> Anne,

>

> Diarrhea that is really bad and the kids are not

> able to take in enough

> nutrition results in admission for them just like

> with vomiting or fever

> that doesn't come down. Do you have an admission

> protocol or

> instructions? Is anyone else sick? Does the stool

> smell like the worst

> thing you have ever smelled--could be rotovirus (a

> little early in the

> season, but it is already in Michigan) or if he has

> been on antibiotics

> could be C. diff, any new meds or changes, or could

> just be a stomach

> bug. We have been told to use Gatorade or power ade

> rather than

> pedialyte because there is more sugar in the others.

> Hope he gets

> feeling better soon.

>

> Tammy--Madelaine and 's (just turned 5! on

> Thursday) mom

>

> AReckling@... wrote:

> Help! Asher's had diarrhea now for about 3 days. I'm

> able to keep him

> hydrated and his electrolytes okay by doing a slow

> drip of Pedialyte,

> BUT a whole liter (which is what you give in a 24

> hour period) only has

> 100 calories as opposed to his normal tube formula

> which has 1000

> overnight.

>

> I'm scared that the lack of calories will cause a

> " crash " . He's more

> lethargic than usual but is still hanging in there.

>

> What do you do during these times?

>

> Thanks in advance,

> Anne R

>

>

> Please contact mito-owner with any

> problems or

> questions.

> __________________________________________________

>