Emma And How We Are Getting On

[Guest tracey and emma]

Hi everyone not been around for a while sorry!

just thought i would let you know how things are going.

She is still gluten free and 3 mths ago we stopped all of her tube feeds, which was a dramatic decision that i took, because the hospital were considering IV feeding. So to stop feeding by tube altogether went against all advice.

I do not recommend anyone else does it!!!!! I have done it before in the past so new what i was doing even though going solo this time.

I had to find out before we started to put IV tubes near her heart if she really could not sustain herself with out the tube, and if we stopped really what would happen. In other words now she was gluten free did the tube really help or was it just doing what she could sustain for herself. I also was not sure because i had a feeling, it may even have been the tube it

[2Boys4Me]

That's terrific news. I'm so glad she's maintaining her weight. The important thing is she's not losing any more weight. I'm sure it will start coming on slowly but surely. My son has been on the gluten-free diet for a year and while he gained 6lbs in the first 8 months hasn't gained any since, he's getting taller though. He's almost 7 and only 39lbs.

Good luck finding answers to your other questions. It sounds like you're on the right track.

[jenvan]

How encouraging... So glad she is doing better !!

[Ursa Major]

I am glad that she has stopped losing weight now. Are you sure she isn't intolerant to something else on top of the gluten, that causes her diarrhea? It would be so much better to eliminate the offending food, than giving her Immodium all the time. Have you eliminated dairy? What about soy? Those would be the next things I'd get rid of, to see if things improve.

[TCA]

So glad to hear the little Emma is doing so well. I hope she starts gaining soon. I know how relieved you must be for the gagging to stop!!!!! What I wouldn't give for that to happen with Meg, though I do think it might be a bit better. I think of little Emma often and am so relieved to hear of the progress. Keep us posted!

[Guest tracey and emma]

So glad to hear the little Emma is doing so well. I hope she starts gaining soon. I know how relieved you must be for the gagging to stop!!!!! What I wouldn't give for that to happen with Meg, though I do think it might be a bit better. I think of little Emma often and am so relieved to hear of the progress. Keep us posted!

I pleased to here Megan is a little better. sorry not been around things been a bit up and down. i am sure Emma's retching was down to the milk feed and the fundo but now that is undone i think she just re fluxes all the time.

i wish i could stop this diarrhea it every 6-5 days and no reason. how are you all? perhaps if you have msn we could get together and chat some time.

and thanks everyone i really hope things turn around but still better than last year. so fingers crossed but have a feeling we may need to start pump again. Speaking with consultant on Tuesday i hope!!!!!

last week went all the way to the hospital, to get there to be told consultant was ill............ at home in bed.............

not that that is a problem but when i said no he is not they argued with me and in the end i said "but i just spoke to him out side 10 minutes ago he was on his bike out side reception!"

why just not be honest with me and say he is here but to ill to see patients today, and they knew he was there.

mind you did giggle a little that will teach then to tell fibs!!!

so next week if consultant can get out of bed i will find out the forward plan.

thanks everyone again

[hannahsue01]

Hi...I'm glad to hear that Emma is doing better. Hopefully she starts to gain wieght soon and that you guys can get her diet figured out. Can I ask why she was put on the feeding tube? My youngest is on one....but for preemie reasons and they said they may put are oldest on one for extra nutrition but she eats more than I or her father do.

[Guest tracey and emma]

Can I ask why she was put on the feeding tube?

yer sure. Emma was put on the feeding tune back in June 2006, due to her vomiting being so server her body weight was just going down by the day, they put in an NG tube to start whilst we waited for an emergency fundoplication, she could not have the operation on the first 2 dates as she was not fit enough and it be came an issue. It also was because she used to have 2 mouthfuls of food and bring it straight back with in seconds nothing stayed in and she started to refuse to eat altogether, so when the fundo was done as a precaution they put in a gastrostomy tube. I thought 1-2 mths and it would be removed but it be came apparent even with the fundoplication Emma's problems were more serious. she refused to eat as gagging and retching was so violent when she did the diarrhea was so bad she would almost dehydrate. So we went on to feed neocate though the tube as she did not thrive no one still knows why? all we know is when she could not vomit anymore it turned to diarrhea and retching instead so the fundo did not stop her losing weight.

All i get told is that they have found this intraeptihelial lymphocytosis, which could be related to a rare form of celiacs disease. but know one knows we know there is an abnormality with in her intestines but why...... could take years to find out if ever do!!!. she is Gluten free now but not sure what difference if any it has made. so we just plod on and hope the diarrhea stops whilst our poor consultant pulls his hair out look for an answer.

the bottom line is this morning she is 9.6kgs in weight at 3years 3mths old so something is not right.

If you eldest does require a tube it is no as bad as it first seems and if it helps then it only need be a short term thing. They look frightening but really easy to manage i have done NG tubes now Peg tubes and now Emma has a button and few mths ago we were looking at IV. Do remember Emma is a server case and most cases that are tube feed thrive successfully and neacote works for all children except Emma's, but i only know of 2 other children out of hundreds that that is the case. good luck and if you ever want to chat feel free.

Tracey

[Guest nini]

Tracey, do you keep a food diary of everything that goes into Emma's system? I can't remember if you said you do or not... but if you aren't that might help you to see a pattern if there is something that is triggering the diarrhea, that isn't normal. I know I get into patterns with meals where about once a week I make tacos, once a week spaghetti, once a week baked chicken w/ rice and veggies (and so on) so it may be one thing you do on a regular basis that she is intolerant to. Like was mentioned before, the gluten just may be one aspect of it, she may also be intolerant to dairy, or soy, or corn, or rice, or anything like that... food journals help you to see a pattern emerge if there is a specific trigger.

[Guest tracey and emma]

yer thanks

i have written diary after diary after diary in different ways, the hospital has had us in to stay and done the same thing and no answer, no body knows why we are in this cycle, and i really can pin point when... and the hour the diarrhea will start. It is the strangest of things ever. we even just went on holiday for 2 weeks and nothing changed same every 5-6 days always in the afternoon between 3-5 pm it starts. with out fail!!!!!!!

but it is violent she can have so much come out of her, i look and think were the hell did you store all of that.

the other week she went to bed at 2.30 and at about 3.30 heard her messing about went up stairs to discover diarrhea in her bed and a trail of it to the toilet she had tried to sit on the potty changed her mind and got on the toilet. it was every were. bless her she just said "sorry mummy"

i know she can not help it but it does make life hard, but at least i can plan when to be at home.

it is never in the morning always the afternoon how weired is that. we have removed everything out of her diet at some point and no change. We have Imodium for her now and when it starts she is given a dose which has improved things slightly but still not the answer

The only other strange thing is at the moment is she is drinking loads and is going to wee every 20mins or so during the day. hospital have run test and sent samples away but nothing no answer. she goes lethargic at a moments notice and finds it hard to recover from it and the hospital have seen this to, and decided it is like she is in pain and listened to her stomach at the same time and said "it was working over time." so no ideas not one. Other then the gluten free.

they have tested me as i had a similar problem as a child not as bad, but enough for me to be going back wards and forwards to the hospital as a child till i was about 8 years old. They never got to the bottom of it and Emma's consultant thinks as i am small it is linked. so even run test on me with no answer. not that i am that samll any more LOL

it may be metabolic in which case may never know and may be one day she will just grow out of it and they cycle will start again with her kids, god i hope not!!!!!!

thanks for your help

[GFBetsy]

Have they checked her blood sugar levels? That excessive thirst and frequent urination might be a sign of juvenile (Type I) diabetes. If they haven't checked it yet, INSIST that they do so. And if they have checked it in the past, insist that they do so again. This isn't something to take chances with.

[hannahsue01]

yer sure. Emma was put on the feeding tune back in June 2006, due to her vomiting being so server her body weight was just going down by the day, they put in an NG tube to start whilst we waited for an emergency fundoplication, she could not have the operation on the first 2 dates as she was not fit enough and it be came an issue. It also was because she used to have 2 mouthfuls of food and bring it straight back with in seconds nothing stayed in and she started to refuse to eat altogether, so when the fundo was done as a precaution they put in a gastrostomy tube. I thought 1-2 mths and it would be removed but it be came apparent even with the fundoplication Emma's problems were more serious. she refused to eat as gagging and retching was so violent when she did the diarrhea was so bad she would almost dehydrate. So we went on to feed neocate though the tube as she did not thrive no one still knows why? all we know is when she could not vomit anymore it turned to diarrhea and retching instead so the fundo did not stop her losing weight.

All i get told is that they have found this intraeptihelial lymphocytosis, which could be related to a rare form of celiacs disease. but know one knows we know there is an abnormality with in her intestines but why...... could take years to find out if ever do!!!. she is Gluten free now but not sure what difference if any it has made. so we just plod on and hope the diarrhea stops whilst our poor consultant pulls his hair out look for an answer.

the bottom line is this morning she is 9.6kgs in weight at 3years 3mths old so something is not right.

If you eldest does require a tube it is no as bad as it first seems and if it helps then it only need be a short term thing. They look frightening but really easy to manage i have done NG tubes now Peg tubes and now Emma has a button and few mths ago we were looking at IV. Do remember Emma is a server case and most cases that are tube feed thrive successfully and neacote works for all children except Emma's, but i only know of 2 other children out of hundreds that that is the case. good luck and if you ever want to chat feel free.

Tracey

Thanks....I was just currious why she was put on one. My understanding with our oldest is that it would just be to get extra calories. She eats and eats allot but isn't gaining wieght....I think though that she has celiac along with much of our family but her blood tests came up neg. Hopefully they get her all figured out without having one. At least I have prior experience with feeding tubes as our youngest is on one from being preemie and deciding she doesn't want to eat.