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06-19-2012, 03:10 PM   #301
Suzysu
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I'm sure the banana thing is her way of blaming my cooking - I'm sure if I raised him on good kosher chicken soup like her boys he would be fine The best quote was from my husband 'well he never had any problems before you started feeding him solids' - if that is not a direct way of saying my cooking is rubbish I don't know what is!!!!
He eats 1-2 bananas per day - maybe that is too much for a small boy, maybe I will cut him down a bit just in case - its just we have already cut out so many things he likes - I may as well just take him to macdonalds every meal time at this rate - we will be feeding him nothing healthy soon!!
06-19-2012, 03:34 PM   #302
crohnsinct
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Oh no! You already started solids before age 5?! There's your problem right there. What parenting manual are you reading?

I would be shocked if the doc said 1-2 bananas are too much for a child. Now if they are constipated maybe cut down a bit but certainly they wouldn't tell you that many bananas are not healthy.

I would be equally shocked to hear of a MIL who doesn't blame all of thir son or grandchildren's problems (physical, emotional or financial) on the daughter in law. I know they are out there..I just haven't met them.

It is clear you are an amazing mom doing everything in your power to try to find out what is happening to Freddy (was I really just nice to you?) so don't let the turkeys get you down. You keep fighting the good fight and tell her and any other noise makers to hush up...we got your back girlfriend.
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Daughter O dx 2/1/12 at age 12
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
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06-21-2012, 08:29 PM   #303
poppets mum
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Thanks so much for your replies ladies. Your advice is invaluable and has made me feel much better about my decision. I just talked to her dietician today, who said she is quite interested to see what the scopes will show. Amy did do 6 weeks of Enteral nutrition by NG tube with nothing other than water. 2 years ago. Now she won't even look at the stuff, but Dietician said she will talk to GI doc, as she feels and so do I that her bowels really need a rest. Just trying to think of a really good bribe to make her go for it.lol Have the feeling she would go for something big like a pony.
06-21-2012, 08:40 PM   #304
Crohn's Mom
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hi poppets mom,

just curious , did the EN help Amy when she tried it ?
Maybe if she noticed a big difference with it, and remembers how good she felt, that will help her be more open to trying it again on a trial basis ?

Best of luck !
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06-22-2012, 12:29 PM   #305
poppets mum
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Crohn's mom, the EN worked really well and I believe, helped us to avoid Prednisone. I would totally recommend it. If anyone ever wants to know our experience with it feel free to ask. I tried to get Amy to remember how good she felt on it, but I think I will have to pick a better moment and try again, as she was having several pains last night and was not in the mood to discuss anything. The dietician has suggested the social worker try having a chat with her. I think she will be earning her money big time on that one. Ha Ha. For right now we are gonna try Gluten free and see how that goes. Your daughter is beautiful by the way.
06-27-2012, 02:41 PM   #306
Suzysu
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Anyone tried slippery elm powder? It is supposed to help GIT problems. Freddy has had a bad few days and yesterday and today instead of giving him calpol when he was bad I mixed this powder with a little milk, he took it ok and maybe it is just coincidence but it did seem to ease things a little and seemed to give him a burst of energy (a little too much if truth be told!!). He still has bad diarrhoea with bloody mucus so it hasn't made a difference with that (yet) - just wondered if anyone else had tried it and weather they gave it regularly or just when there were problems?
06-27-2012, 03:48 PM   #307
leah
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My little one is 3years old she has had constipation from a baby when she got to 1& a half it got worse, I was sent home with movicol which didnt help her went back and forth 10+ times they kept giving me movicol for her and then lactoluse and others like it but didnt help. I wasnt happy with the local doctors or paeditrician at the hospital so i move to another hospital they did the same put her on movicol i told them it didnt work but no one would listen. After another year & half of back and forth to hospital she was admitted for a week to try all different medication including enemas which didnt work just caused her a lot of distress this was because the doctor didnt believe me that medication was not working, They realised how bad she was and referred her to the childrens hospital, She was given an x-ray she was so badly blocked up it was above her ribs she was that full of poo so they admitted her in the childrens hospital where she had klean-prep fed through a tube in her nose, That un blocked most of it but not all 4 weeks later she was back for another klean-prep she was put on movicol (Yet again!!) liquid parafin and senna this hasnt helped at her she keeps blocking up finally i have been listend too & she is in for rectal biopys & camera on the 18th july to find out what is going on, They think it may be crohns but i was told it is so hard to detect it could be years for a diognosis. hirschsprung's disease has also been mentioned. I was wondering if anyone else has had problems like this with there children and also if there is anywhere i can get help with nappies she has constant leakage and going through 10+ nappies a day & i really cant afford to be going though this many
06-27-2012, 07:50 PM   #308
poppets mum
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Sorry to hear of your problems Leah. Although not as bad we are going through something similar with my daughter. It has become quite the experiment to see what I can give her to make her go she takes 17 grams of lax a day every day but I find I very often have to adjust that dose to more's We also tried Enema's but I think she developed a fissure as she screamed when the liquid went in and told me it was really stinging, and yes there has been problems with leakage. I think there may be a product out there that is like a nappy liner, would a few of those help maybe? Sometimes getting a Crohn's diagnosis is very tricky because of its skip pattern. It seems like you can have a ton of the symptoms and still have a negative test. We are being told she will likely have ibs but I really have my doubts. Will have to see what the scopes say. Anyway just wanted to let you know you are not alone and maybe other people will have some suggestions.
06-27-2012, 11:47 PM   #309
DustyKat
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Sort of off topic...

How many have kiddoes with persistent canker sores? Well I am sitting here and Dr Oz is on the telly talking about canker sores. He said that if he saw someone with persistent canker sores that last longer than about 4 days he would be concerned about them having one of two things cancer or IBD!!!

Maybe everyone should go to Dr Oz for their diagnosis!

Just sayin'.
Dusty.
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06-28-2012, 11:47 AM   #310
David
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For those undiagnosed kids out there, make sure they've been tested for Yersinia.

http://pediatrics.aappublications.or...104/3/e36.full
07-05-2012, 04:14 PM   #311
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That's interesting about the canker sores. Grace has had a few. My husband on the other hand has had so many at one time that it's scary. He's suffered from them since childhood.They last for a week or better.
I'll let him know the link. That will take his mind off the farm for a while. It's least I could do. lol
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07-05-2012, 04:23 PM   #312
crohnsinct
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^^^LMAO

Is there no end to your love and devotion? Such a selfless soul!
07-05-2012, 04:32 PM   #313
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Love and devotion!!! ARE YOU KIDDING ME!!!!
I got into a OLD SUV with no AIR Conditioning! 103 degrees!!!!
By the time we reached my twin's house I was sweating in places that aren't normal and my little girl is slumped of in her seat and my son wanted to get on the hood so he can fly and cool off.
This is ALL because my hubby hasn't made up his mind about a new SUV.
My love and devotions come in when I STILL let him share our bed.

Farmwife
07-05-2012, 05:10 PM   #314
crohnsinct
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A/C?! Boy you country girls are spoiled...No A/C down in the subway today! Nothing like the smell of piss and body odor at 105 degress to start your day off right...but we don't let it bother us...all us city folk singing Kumbaya! Rats move slower in the heat too!
07-05-2012, 05:19 PM   #315
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Rats and cows move slower in the heat. Nice to know it's the same all over.

Farmwife
07-05-2012, 05:42 PM   #316
poppets mum
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Amy is on her 4th bout of mouth ulcers since she started with the tummy aches. This last one is a beauty too. I am thinking of naming it, as it is so big, and is enjoying camping out right near her lip making itself very visible. She also has a very itchy rash on her face and arms that I've been giving her Benadryl for but it just won't go away. Wondering what's next.
07-15-2012, 12:55 PM   #317
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Poppets mum , how is Amy doing ? Dusty, remember last year when JJ had mouth ulcers and I told his GI doc about them right before he had his colonoscopy and she said "maybe he willed them there!" arrgghh.

So I took JJ this past Wednesday for his follow up on his four hour growth hormone test. His doctor said that a normal range for producing growth hormones at his age should begin around 12-13, well.....JJ's is at 1.4 !! Basically he isn't producing any growth hormone. The next step is to have a brain MRI to look at the size of his pituitary gland, and also to make sure there isn't a tumor of any kind. Then, if that scan comes back "ok" then he will be starting the Human Growth Hormone (HGH) injections daily. He said he will be starting him on a very high dose to begin with. The things we are to watch for are headaches/migraines, and/or severe hip pain. If he gets either of these we have to call immediately. As soon as we get authorization from our insurance company we will be having a nurse come to our home to show us how to administer the injections.
Doctor said he wants to see JJ back in his office in December, and he expects that he will be at least 3-4 inches taller by then and will have started puberty.

We still don't have an answer as to "why" he's not producing growth hormone, but at least we have a hopeful solution to it. I'd love to know that it's not Crohn's causing it, but I guess time will tell.
I'm going to do a little more research on the Hgh and also try and see if there are any studies involving Hgh and Crohn's. I wonder if any of you know, or have heard of Hgh either helping, or interfering with Crohn's ?

Never in a million years did I think I'd have two of my children administering injections to themselves as part of their childhoods ...
07-15-2012, 04:42 PM   #318
DustyKat
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Yes! I do remember that T! :thumb down:

Oh hun, good luck with the scan. I so don't want for him to have a tumour but I wish for you to have solid answers and soon!

I don't know much about HGH and Crohn's so no help there. It sounds like the doc is on top of things though.

Sending loads of love, luck and well wishes your way T!

Dusty.
07-15-2012, 07:21 PM   #319
dannysmom
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Good luck T! I will read about that now ...
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07-16-2012, 04:05 AM   #320
Suzysu
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Good luck for the scan - and I hope the injections go ok - thinking of you xxxx
07-16-2012, 08:19 AM   #321
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http://www.practicalgastro.com/pdf/M...iroArticle.pdf

Interesting article on HgH and Crohn's Disease !
07-16-2012, 08:55 AM   #322
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Good luck T!!! I hope all goes well with the scan and injections!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-24-2012, 09:55 AM   #323
Farmwife
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Here's a question?
Do you HAVE to have diarrhea and or blood in your stool to have UC?

I was just given a piece of info (thanks crohnsinct) that points to possible UC instead of crohn's. Grace however doesn't have any diarrhea YET!

Thanks Farmwife
07-24-2012, 10:14 AM   #324
crohnsinct
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IDK farmwife...we are just stabbing in the dark here. I sooo hope the doc on Thursday agrees that he GI needs to get moving quicker towards a dx. Anyway...just found this too:

Symptoms, the presence of colitis is evidenced by certain disturbances of sensation and function which vary greatly in degree depending, of course, upon the intensity of the irritation of the mucous membrane of the colon. The presence of gas, a certain sense of bloating and a tendency toward constipation are some of the earliest symptoms of colitis. Later on colic-like pains due to spasm of the intestinal muscle occur from time to time. Abdominal distress becomes severe and a definite sense of nausea not infrequently puts in its appearance. In some cases vomiting actually occurs.

When a case of colitis is as far advanced as this, diarrhea is almost invariably present. Certainly common sense should tell us that what the colon is trying to say is that it is in no condition to handle food or anything else. The irritation caused by the presence of anything in the colon induces spasm and continued irritation induces a voluntary effort on the part of this portion of the intestinal tract to get rid of everything one way or the other. Technically, we say the patient vomits or has diarrhea, but the plain facts in the matter are that the colon very much “wants to be alone.”
07-24-2012, 10:41 AM   #325
Farmwife
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Thank YOU for the info.
I was just telling my hubby I feel like we're watch Grace fall into something.
Keep in mind she's already been through a lot.


A question of curiosity:
Did any of your children have c. diff before or at the onset of their illness?
07-24-2012, 05:33 PM   #326
poppets mum
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Thanks for enquiring about Amy Crohn's mum. She is still the same despite trying several different diets. I am sorry to hear of your extra problems. I do have some idea of what it is like to have 2 children with problems, as my older one has had a chronic pain condition where most joints at some time or another become very painful and she also has mild scoliosis that causes a fair bit of discomfort. So glad to have an excellent Childrens Hospital nearby. Oh plus a husband who has had 2 hip ops due to osteo Arthritis, in his early forties. I am beginnig to think this family of mine is addicted to hospitals Anyway I hope everyone is having a half decent summer.
07-24-2012, 09:38 PM   #327
dannysmom
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Hi poppets mum ... I feel like my family is similar. My husband has had so many joint surgeries, oldest son has severe spine issues leading to a triple level fusion, and Danny with this Crohn's-like undiagnosed illness. All of them have scoliosis too. Danny also has headaches like Amy. I am sorry Amy is having a rough time. Is your current plan to wait until Sept to see the scope results?
07-26-2012, 08:36 PM   #328
poppets mum
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Oh wow Danny's mom, your whole family keeping you busy too eh? I don't know about you, but with all the appointments and ER visits etc, the hospital feels a bit like a second home to me We are indeed waiting things out until September, although still having mixed feelings about the scopes. At least I can say my own health is really good (bloody well has to be doesn't it) How about you? have you found any good ways to cope with everything? Here's a for all you and your family have to put up with.
07-27-2012, 06:55 AM   #329
dannysmom
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How about you? have you found any good ways to cope with everything? Here's a for all you and your family have to put up with.
Thanks
I am nobody to take advice from ... I used to be very healthy, until Danny got sick. I ended up with Graves disease which is normally triggered by stress - that started right after getting the incorrect Cystic Fibrosis diagnosis last year. (I thought I was handling the stress well.) I have a friend that takes an hour walk daily to help with stress (her daughter has had terrible head pain for 12 years now) ... I think that is a good idea. Hugs to you too!
07-30-2012, 07:20 AM   #330
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Well, MRI is complete and now we wait some more for the results.

I was a bad mommy and decided not to pre-warn JJ about needing the contrast with his MRI today He was not too happy with me when he found out there was a small needle involved ! (exactly why I didn't warn him! lol) The tech said he did a great job tho ~ I'm guessing/hoping we should hear something about the results by end of week and then find out when he can begin the injections.

On another note, (ironic that I just mentioned this recently), JJ seems to have "willed" himself another mouth full of mouth ulcers this past week! I bet we could get rich if he'd just tell us his secret powers !

Hope everyone is doing well !
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