Re: Kris- G-tube/whiteman/etc.

[Guest guest]

First of all, I would suggest talking with Sara at as she is probably the one who can talk with Dr. Whiteman easiest. If she isn't available ask for Tabitha. Have your husband explain the severity and the worsening of his condition and if there is any possibility of getting the g-tube placed while you are there. We never went through a GI doc to get Zipporrah's tube placed, just Dr. Whiteman recommending the necessity of the placement to Dr. Moir an excellent pediatric surgeon-who placed both of my girls' tubes-in fact he is the one who is willing to place the mic-key button immediately over the long extension tubing for the first 6 weeks!) If a GI doc is needed I HIGHLY recommend Dr. Grothe (our GI) and have also heard good things about Dr. El Youseff as well. We steer clear of Dr. Freese due to several run ins with her as well as hearing other peoples' bad experiences with her. Some of the GI docs place the tubes themselves, but I prefer using Dr. Moir. He did an excellent job on both of my two girls. And I absolutely loved having the mic-key button right off the bat. Staying on to have it placed is definitely a possibility as we originally was to stay an extra couple of days to have Asenath's placed (until Dr. Freese thought it unnecessary!), so we know it does happen that way sometimes.

Another issue I was going to mention is about the chronic diarrhea. Zipporrah has the same issue and for her it was due to a dumping syndrome. The stomach dumps the food too quickly into the bowels and does not absorb the food. Her diarrhea tends to be a very dark black/green color with a horrible smell and also causes sweating episodes along with other dumping symptoms. Has your son had a gastric emptying scan done??? If not, it may be time. Chronic diarrhea can be caused by several issues and sometimes cannot be diagnosed unfortunately. Asenath had it from birth until last fall when she began steroids and now that the steroids are being lowered it is returning. We have no explanation for her diarrhea. Also, I know that the Carnitine is an attempt to help absorption, but also know that it can cause diarrhea too so it is wise to let Dr. Whiteman know the downward spiral you are seeing. He was talking to me about a child he treats with higher doses of carnitor for absorption help (maybe you) and actually increase Zipporrah's dose too. I think it is wise to keep him well informed of the ups and downs of how it is going, as that's the only way he can help. Hopefully, if your hubby expresses the urgency of the issue, Dr. Whiteman will call back quickly. If he cannot, maybe one of his nurses or staff can relay a message from him to you. I hope you are able to get some help. I know how stressful it is to not be able to get meds down. Before Asenath had her tube we were having such trouble getting hers down consistently. Now that she is on ten meds (some up to three times a day) I can't imagine her not having a g-tube. But on top of that, she eats only a couple bites of her meal and sometimes only a couple bites per day! Even with steroids she still won't eat, and we were told it usually makes people eat tons!

Sorry this is so long. Let me know if there is anything further I can help you with and let me know if you stay longer then we can meet.

Darla

Darla...GI Questions....

Hi,Cole is going through this deal where is refusing meds while awake---we have only ever had this problem when he is sick. We are on day 4 of no meds while awake (or very little that we have down his throat). We get are meds compounded--they don't taste too bad--he has actually seemed to like them in the past. I think this is behavioral. Anyway, we are at our wits end. (my husband) is calling Dr. Whiteman to ask him if we can have a G-T placed since we will be at Mayo. We are watching him fall apart this weekend because he is not getting his stuff. He has chronic diarhhea (which Dr. Whiteman has seen at every visit---he always says "that's not O.K."--the only thing a GI doc has done here is put him on Zinc. Dr. Whiteman believes that he has some type of malabsorption issue which he said he drew some labs for (and of course has not called us). Because of the chronic diarrhea he HAS to have his meds every 3 hours (awake and asleep). We give the carnitor 1cc at a time 12 times a day to prevent worse diarrhea. He is also refusing all fluids except some milk---but he is eating fine---so his stomach must not be upset.Here is the questions: what do you think the likelihood is that a GI doc could see us while we are inpatient on such short notice?If they see him---what is the likelihood that they will consent to a G-T?If they see us and consent do you think they could just extend our stay and place it right away?I know you have discussed the GI docs before...I don't remember who is it that we would want to see?We have done everything possible to avoid this----but he is losing ground just over the last 3 days (muscle tone worse, behavior awful, dystonia increasing).The only thing that is saving him right now is that he is getting meds while asleep (my boys drink from sippies in their sleep and stay asleep during the drink--usually). He is now sleeping worse because he isn't getting his daytime meds.I hope Dr. Whiteman answers 's panic call tomorrow---sometimes he is not so good at that. Any hints on getting a call back?Kris

[Guest guest]

Thanks Darla,

Sounds sort of promising--gosh I hate to do it. I am having all

kinds of anxiety now and hoping for a better day. said no

turning back---he wants it done (it really has been a horrible

weekend).

Cole also has had diarrhea since birth--his have always been yellow

with an odd smell. Carnitine has only made the matter worse--last

visit Dr. Whiteman talked about lowering his dose. Meds always seem

to make it worse. One of the reasons that I think the diarrhea thing

has not been adressed his that the boys have always been 80th

percentile and above for weight (largely do to the fact that we feed

them 4 times a night and shove food in their mouth all day long).

Cole actually gets dizzy before he has a BM (and increased dystonia

in the hands) and when the mito kicked in they both mottled in the

legs and hands before each BM... Oh yeah--they also get blue around

their mouth before they poop (not their lips, just the skin): does

that sound like dumping? The blue around the mouth thing has always

been disturbing but Dr. Whiteman said their hearts seem fine and they

have absolutely no respiratory problems.

I am sure the docs will look at us like we are from outer space when

we ask for a G-T for a 42 pound 3 year old.

Kris

> First of all, I would suggest talking with Sara at 507-284-

8208 as she is probably the one who can talk with Dr. Whiteman

easiest. If she isn't available ask for Tabitha. Have your husband

explain the severity and the worsening of his condition and if there

is any possibility of getting the g-tube placed while you are there.

We never went through a GI doc to get Zipporrah's tube placed, just

Dr. Whiteman recommending the necessity of the placement to Dr. Moir

an excellent pediatric surgeon-who placed both of my girls' tubes-in

fact he is the one who is willing to place the mic-key button

immediately over the long extension tubing for the first 6 weeks!)

If a GI doc is needed I HIGHLY recommend Dr. Grothe (our GI) and have

also heard good things about Dr. El Youseff as well. We steer clear

of Dr. Freese due to several run ins with her as well as hearing

other peoples' bad experiences with her. Some of the GI docs place

the tubes themselves, but I prefer using Dr. Moir. He did an

excellent job on both of my two girls. And I absolutely loved having

the mic-key button right off the bat. Staying on to have it placed

is definitely a possibility as we originally was to stay an extra

couple of days to have Asenath's placed (until Dr. Freese thought it

unnecessary!), so we know it does happen that way sometimes.

> Another issue I was going to mention is about the chronic

diarrhea. Zipporrah has the same issue and for her it was due to a

dumping syndrome. The stomach dumps the food too quickly into the

bowels and does not absorb the food. Her diarrhea tends to be a very

dark black/green color with a horrible smell and also causes sweating

episodes along with other dumping symptoms. Has your son had a

gastric emptying scan done??? If not, it may be time. Chronic

diarrhea can be caused by several issues and sometimes cannot be

diagnosed unfortunately. Asenath had it from birth until last fall

when she began steroids and now that the steroids are being lowered

it is returning. We have no explanation for her diarrhea. Also, I

know that the Carnitine is an attempt to help absorption, but also

know that it can cause diarrhea too so it is wise to let Dr. Whiteman

know the downward spiral you are seeing. He was talking to me about

a child he treats with higher doses of carnitor for absorption help

(maybe you) and actually increase Zipporrah's dose too. I think it

is wise to keep him well informed of the ups and downs of how it is

going, as that's the only way he can help. Hopefully, if your hubby

expresses the urgency of the issue, Dr. Whiteman will call back

quickly. If he cannot, maybe one of his nurses or staff can relay a

message from him to you. I hope you are able to get some help. I

know how stressful it is to not be able to get meds down. Before

Asenath had her tube we were having such trouble getting hers down

consistently. Now that she is on ten meds (some up to three times a

day) I can't imagine her not having a g-tube. But on top of that,

she eats only a couple bites of her meal and sometimes only a couple

bites per day! Even with steroids she still won't eat, and we were

told it usually makes people eat tons!

> Sorry this is so long. Let me know if there is anything

further I can help you with and let me know if you stay longer then

we can meet.

>

> Darla

> Darla...GI Questions....

>

>

> Hi,

>

> Cole is going through this deal where is refusing meds while

awake---

> we have only ever had this problem when he is sick. We are on

day 4

> of no meds while awake (or very little that we have down his

> throat). We get are meds compounded--they don't taste too bad--

he

> has actually seemed to like them in the past. I think this is

> behavioral. Anyway, we are at our wits end. (my husband)

is

> calling Dr. Whiteman to ask him if we can have a G-T placed since

we

> will be at Mayo. We are watching him fall apart this weekend

because

> he is not getting his stuff. He has chronic diarhhea (which Dr.

> Whiteman has seen at every visit---he always says " that's not

O.K. " --

> the only thing a GI doc has done here is put him on Zinc. Dr.

> Whiteman believes that he has some type of malabsorption issue

which

> he said he drew some labs for (and of course has not called us).

> Because of the chronic diarrhea he HAS to have his meds every 3

hours

> (awake and asleep). We give the carnitor 1cc at a time 12 times

a

> day to prevent worse diarrhea. He is also refusing all fluids

except

> some milk---but he is eating fine---so his stomach must not be

upset.

>

> Here is the questions: what do you think the likelihood is that

a GI

> doc could see us while we are inpatient on such short notice?

>

> If they see him---what is the likelihood that they will consent

to a

> G-T?

>

> If they see us and consent do you think they could just extend

our

> stay and place it right away?

>

> I know you have discussed the GI docs before...I don't remember

who

> is it that we would want to see?

>

> We have done everything possible to avoid this----but he is

losing

> ground just over the last 3 days (muscle tone worse, behavior

awful,

> dystonia increasing).

>

> The only thing that is saving him right now is that he is getting

> meds while asleep (my boys drink from sippies in their sleep and

stay

> asleep during the drink--usually). He is now sleeping worse

because

> he isn't getting his daytime meds.

>

> I hope Dr. Whiteman answers 's panic call tomorrow---

sometimes he

> is not so good at that. Any hints on getting a call back?

>

> Kris

>

>

>

>

> Please contact mito-owner

owner > with any problems or questions.

>

[Guest guest]

It may help to be very clear as to what you have to do to keep him fed and medicated. The round the clock feedings and meds make it more of a necessity for a G-tube especially if he has crisis's when oral feeding or meds aren't getting in. It may be harder to get one with his weigh up as well as it is, but if the docs understand how frequently you need to feed him, plus the round the clock meds, they might be more inclined to listen to your reasoning, especially if Dr. Whiteman agrees to the necessity.

Not sure about those symptoms for dumping, but it might be wise to look under your search area online for dumping and read different symptoms to find out if he exhibits any of the symptoms. The issue should be addressed if he has been struggling with diarrhea and BM issues all his life. I highly recommend seeing Dr. Grothe (or El Youseff) to see if they can help. What is the odor like? Can you describe it? Zipporrah's is so strange a smell I actually can't explain it! We were able to get it to change to the yellow color with Benefiber, but it was costing us $16.00 weekly out of pocket and she still had the diarrhea so now we are trying new things. I think we took a step backwards with Imodium, however she goes less frequently than before. It still is very loose, and now is black/green again. Very frustrating trying to control the dumping, and I know her tummy must hurt quite frequently. As for Asenath, we never have been able to explain why she has chronic diarrhea. We have definitely run tests on her feces to check for issues there, and none have shown for either girl.

Let me know how the phone call goes and if you will be staying longer. I need to call Mayo again too. I need to speak to Dr. Grothe (who is GREAT at calling back quickly!) about Zipporrah's dumping again as she wanted to hear back as to how the Imodium was working. She indicated she may put Zipporrah in the hospital with Asenath if we can't control it this week somehow. Don't you just wish we could snap our fingers and fix these problems!!!

Darla: mommy to Asenath, Zipporrah, and the gang

Darla...GI Questions....> > > Hi,> > Cole is going through this deal where is refusing meds while awake---> we have only ever had this problem when he is sick. We are on day 4 > of no meds while awake (or very little that we have down his > throat). We get are meds compounded--they don't taste too bad--he > has actually seemed to like them in the past. I think this is > behavioral. Anyway, we are at our wits end. (my husband) is > calling Dr. Whiteman to ask him if we can have a G-T placed since we > will be at Mayo. We are watching him fall apart this weekend because > he is not getting his stuff. He has chronic diarhhea (which Dr. > Whiteman has seen at every visit---he always says "that's not O.K."--> the only thing a GI doc has done here is put him on Zinc. Dr. > Whiteman believes that he has some type of malabsorption issue which > he said he drew some labs for (and of course has not called us). > Because of the chronic diarrhea he HAS to have his meds every 3 hours > (awake and asleep). We give the carnitor 1cc at a time 12 times a > day to prevent worse diarrhea. He is also refusing all fluids except > some milk---but he is eating fine---so his stomach must not be upset.> > Here is the questions: what do you think the likelihood is that a GI > doc could see us while we are inpatient on such short notice?> > If they see him---what is the likelihood that they will consent to a > G-T?> > If they see us and consent do you think they could just extend our > stay and place it right away?> > I know you have discussed the GI docs before...I don't remember who > is it that we would want to see?> > We have done everything possible to avoid this----but he is losing > ground just over the last 3 days (muscle tone worse, behavior awful, > dystonia increasing).> > The only thing that is saving him right now is that he is getting > meds while asleep (my boys drink from sippies in their sleep and stay > asleep during the drink--usually). He is now sleeping worse because > he isn't getting his daytime meds.> > I hope Dr. Whiteman answers 's panic call tomorrow---sometimes he > is not so good at that. Any hints on getting a call back?> > Kris> > > > > Please contact mito-owner <mailto:mito-owner > with any problems or questions. >

[Guest guest]

> Kris,

One more very important thing to do is to try and find the source of his

diarrhea before getting the G tube! We were ready to have a G tube for

Caden (failure to thrive ande low blood sugars over night).

Well, we KNEW he had something wrong intestinally since he had a ravenous

appetite (most of the time). He just never gained any weight.

OK, here's what would have happened if we'd have gotten him a G tube. He'd have

gotten WORSE! IF indeed a child is malabsorbing, then it doesn't matter if you

feed them round the clock. They still won't gain weight. Actually the pooping

gets worse! Much worse! Ask them to do a pancreatic stimulation test. This is

THE BEST diagnostic test for Pancreatic Insufficiency or Malabsorption.

They do have to be sedated and it's a bit complicated/lengthy but worth it!

Caden produced very little to NO enzymes via his pancreas ( exocrine failure ).

After being placed on enzyme therapy, he started gaining weight and his blood

sugar issues got better. Actually, everything has gotten better! Leg pains are

much better and very INfrequent! This is a child that has suffered with leg

pains since birth! He was not absorbing his food to get his calcium, etc.. that

he needed (bone pain).

Anyway, if I can be of more help, just let me know. There has to be a 'reason'

for his chronic diarrhea. You just want to be sure it's not going to get worse

if he gets a tube.

Krystena

>

> Date: 2004/08/16 Mon AM 11:55:19 EDT

> To: Mito >

> Subject: Re: Re: Kris- G-tube/whiteman/etc.

>

>

It may help to be very clear as to what you have to do to keep him fed and medicated. The round the clock feedings and meds make it more of a necessity for a G-tube especially if he has crisis's when oral feeding or meds aren't getting in. It may be harder to get one with his weigh up as well as it is, but if the docs understand how frequently you need to feed him, plus the round the clock meds, they might be more inclined to listen to your reasoning, especially if Dr. Whiteman agrees to the necessity.

Not sure about those symptoms for dumping, but it might be wise to look under your search area online for dumping and read different symptoms to find out if he exhibits any of the symptoms. The issue should be addressed if he has been struggling with diarrhea and BM issues all his life. I highly recommend seeing Dr. Grothe (or El Youseff) to see if they can help. What is the odor like? Can you describe it? Zipporrah's is so strange a smell I actually can't explain it! We were able to get it to change to the yellow color with Benefiber, but it was costing us $16.00 weekly out of pocket and she still had the diarrhea so now we are trying new things. I think we took a step backwards with Imodium, however she goes less frequently than before. It still is very loose, and now is black/green again. Very frustrating trying to control the dumping, and I know her tummy must hurt quite frequently. As for Asenath, we never have been able to explain why she has chronic diarrhea. We have definitely run tests on her feces to check for issues there, and none have shown for either girl.

Let me know how the phone call goes and if you will be staying longer. I need to call Mayo again too. I need to speak to Dr. Grothe (who is GREAT at calling back quickly!) about Zipporrah's dumping again as she wanted to hear back as to how the Imodium was working. She indicated she may put Zipporrah in the hospital with Asenath if we can't control it this week somehow. Don't you just wish we could snap our fingers and fix these problems!!!

Darla: mommy to Asenath, Zipporrah, and the gang

Darla...GI Questions....> > > Hi,> > Cole is going through this deal where is refusing meds while awake---> we have only ever had this problem when he is sick. We are on day 4 > of no meds while awake (or very little that we have down his > throat). We get are meds compounded--they don't taste too bad--he > has actually seemed to like them in the past. I think this is > behavioral. Anyway, we are at our wits end. (my husband) is > calling Dr. Whiteman to ask him if we can have a G-T placed since we > will be at Mayo. We are watching him fall apart this weekend because > he is not getting his stuff. He has chronic diarhhea (which Dr. > Whiteman has seen at every visit---he always says "that's not O.K."--> the only thing a GI doc has done here is put him on Zinc. Dr. > Whiteman believes that he has some type of malabsorption issue which > he said he drew some labs for (and of course has not called us). > Because of the chronic diarrhea he HAS to have his meds every 3 hours > (awake and asleep). We give the carnitor 1cc at a time 12 times a > day to prevent worse diarrhea. He is also refusing all fluids except > some milk---but he is eating fine---so his stomach must not be upset.> > Here is the questions: what do you think the likelihood is that a GI > doc could see us while we are inpatient on such short notice?> > If they see him---what is the likelihood that they will consent to a > G-T?> > If they see us and consent do you think they could just extend our > stay and place it right away?> > I know you have discussed the GI docs before...I don't remember who > is it that we would want to see?> > We have done everything possible to avoid this----but he is losing > ground just over the last 3 days (muscle tone worse, behavior awful, > dystonia increasing).> > The only thing that is saving him right now is that he is getting > meds while asleep (my boys drink from sippies in their sleep and stay > asleep during the drink--usually). He is now sleeping worse because > he isn't getting his daytime meds.> > I hope Dr. Whiteman answers 's panic call tomorrow---sometimes he > is not so good at that. Any hints on getting a call back?> > Kris> > > > > Please contact mito-owner <mailto:mito-owner > with any problems or questions. >