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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!!
 
Oh no! You already started solids before age 5?!:eek: 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.
 
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.
 
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 !
 
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.
 
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?
 
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
 
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:voodoo: 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.:cool2:
 
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.
 
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
Farmwife
 
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
 
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!
 
:rof::rof::rof::rof::rof::rof::rof::rof:

Rats and cows move slower in the heat. Nice to know it's the same all over.:ytongue:

Farmwife
 
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.
 
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 ...:shifty:
 
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. :heart:
 
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
 
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.”
 
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?
 
Thanks for enquiring about Amy Crohn's mum. She is still the same despite trying several different diets.:voodoo: 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.
:thumleft:
 
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?
 
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:ytongue: 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):rosette1: How about you? have you found any good ways to cope with everything? Here's a :hug: for all you and your family have to put up with.
 
poppets mum said:
How about you? have you found any good ways to cope with everything? Here's a :hug: for all you and your family have to put up with.
Click to expand...

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!
 
Well, MRI is complete and now we wait some more for the results. :ywow:

I was a bad mommy and decided not to pre-warn JJ about needing the contrast with his MRI today :p 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! :ywow: I bet we could get rich if he'd just tell us his secret powers !

Hope everyone is doing well ! :D
 
I hope you don't have to wait too long for the results and, of course, that the results show nothing serious! :ghug: And, wow, what secret powers he has!!! :facepalm:

How is Gabby doing? I hope she's feeling alright. :confused2:
 
:eek2: Nearly the end of the week T!

I hope all goes well with the results hun...:goodluck:...and kudos to JJ for doing such a fab job at radiology! :)

Dusty. xxx
 
Hi girls! Well, I haven't been around in a while! Sorry for being away -- it has been a busy summer. And for a while Gracie was doing just great! The sulfasalazine seemed to work well...but then when it ran out 2 weeks ago the GI wanted to take her off. So almost right away she started getting constipated again. So I added back in some miralax, etc. Well, she's still going (some days even twice!) but it looks hard and pebbly. And then this morning she had blood in her stool. :( So I called the GI. Now sure what to think????
 
:thumleft:Hi and welcome back!
I'm so glad to hear she was doing well for awhile.
My Grace is in the same boat, but hers is soft stool.
I tell ya, what are we going to do with these Gracie's of ours.:sign0085:
Well at least my girl is happy for the most part.
Sorry no idea about the blood. We've been blessed so far not to have seen much blood in Grace's stools. The only time I have seen it is when she had hard stool constipation.

Farmwife
 
So sorry Grace is sick again too -- no fun at all! Argh!! And I was JUST thinking how well she would be doing for the start of school!

Are you taking Grace back to the GI??

They usually want us to have soft stools? Hmmm....you have to be a poop detective, don't you!?!?
 
Well she has soft stool after 3-5 days of NO stool. :confused2:
Yes a poop detective is what I've tried to be and a poop detective I am NOT!:rof:

Actual I'm calling the GI now to ask about a high level Grace had and to let them know the she has diarrhea now for 3 days. Always something.
She's not showing any sigh of pain. No knee or eye pains. No rashes. Only right side pain. I'll take what I can get.:hug:

Have you heard from your GI yet?
 
OH! I know what that is...we have that...it sounds like an impaction. Likely she's having diarrhea around her constipation. Can you get a quick x-ray? It is the only way to know for sure. We have done many many cleanouts from impactions. So sorry!!

ETA: I never did hear if you had a scope done??
 
Oh and the nurse called. She was going to talk tot he doc and said either he'd call me or she'd call me back. Might not be until later this afternoon.
 
No go. I just talk to the nurse at the GI office and said were to watch her closely. She agrees that she might be impacted BUT she's not feverish or suffering right now so lets give the Miralax more time to work.:angry-banghead:
Well at least my hubby is happy with that!:yfaint:

So basically some more wait and see.


Maybe I can go back into my dream world now.:D
It's lovely here, the breeze, the ocean air and NOT a COW or TRACTOR in sight!:emot-dance:
 
Received a phone call from the Endo doc and jjs MRI results were good ! :) whew! he should be starting his hgh injections within the next 2 weeks!

He went to his highschool orientation this morning and said out of all the incoming freshman he was the second shortest student ! LOL it's time to help this kiddo grow :)
 
OMG, soooooo glad the results were good!!! :banana: What a huge relief that must be for you!!! :thumright:

Tell JJ not to worry!!! Stephen was one of the shorter and skinnier kids until he hit about 14 and then shot up a foot+ over the next year or so! Once JJ starts on his injections, he'll fly past everyone! :D

And, tell JJ a little help is always a good thing! Both my kids are always trying to 'build muscle' and be the 'stronger' one and Stephen taunts Emily that HE gets 30 grams of protein JUST from his formula every day and she doesn't! :lol: :ybatty:
 
Sitting here having a guilt attack for giving Amy cucumber yesterday. About an hour afterwards she started complaining about tummy really feeling sore. She has been in agony all day today and has not wanted to eat or drink anything. Has anyone else had problems with this evil veg?
 
My husband doesn't have crohns (although, sometimes I wonder?? IBS maybe?) but he does have trouble digesting certain foods. Cucumbers cause him lots of pain, troubles, etc. Strangely enough, he doesn't have the same problem with 'English' cucumber (the longer, thinner version). Also, peeling the 'regular' cucumber helps too.
 
Just thought I would update everyone on how little Freddy is getting on.

He has stopped vomiting - YAY!! lots of retching and watery sounding burps and hiccups but no actual vomiting (my carpets couldn't take any more!!).

He still has diarrhoea.

He is still often in abdominal pain (and I am suspicious of joint pain as well but he is a little too young to be certain).

He is still on his low residue diet, we ran out of his sennokot medication last week and he got a lot worse and is now constipated!! At least I know it is helping him.

We had another follow up with our new friendly GI today. He has put on weight! YAY! but has not grown (but it's only 6 weeks since the last appointment). The GI did a great job of explaining everything and talking me through the plan - I am still not totally convinced by it all - feeding a child that supposedly has constipation problems a low fiber diet seems so wrong - but apparently its the fiber that causes the pain??).

We are supposed to go and see the GI again in 1 month - again I find it odd that on the whole Freddy is doing better than earlier this year but they are doing much more frequent checks on him! oh well better to be checked than not!! And he didn't have to have a blood test today - double YAY!!!!

One thing that is odd is Freddy drinks at least 4 times the amount my other children drink - I did sort of mention it to the GI but he didnt seem interested, He said he needs to drink a lot and be active to help with the constipation (which when on the medication Freddy only has diarrhoea - maybe that is why he drinks so much!) and he really does drink tons and we are a very active family. We are going to split his senna dose in half and give it twice a day instead of one big dose all at once to see if this helps pain and poo wise!!

I think I am still a little confused about it all but generally happy with how the appointment went!

I feel better for writing everything down! - YAY for this forum!!
 
Hi Suzysu,

Glad he's doing a bit better and being followed up more regularly!!

I hope you continue to gradually see more improvement :ghug:

Good luck at the next apptmt! :)
 
Hi Suzy q :)

Glad to hear things are ok !

I don't know if it means anything or not, but Gab has always drank tons more than her siblings and peers. She's Always seemed to have a never ending "thirst".

Hope things get better and better !
 
Thanks for the update Suzy! :)

So fab to hear that things seem to settling a little...:)...hoping it all continues to trend that way.

If drinking water was an olympic sport Sarah would be a dead set cert for a gold medal! :lol:

Dusty. :heart:
 
JJ started his HgH injections today and .....He did it on his own !!
Trust me when I tell you what an amazing feat this is for him !
We had a nurse from his Endocrinologist office come to our home this morning and train us. She was so very sweet :) I think it helped JJ to hear that she has been diabetic since she was 10 years old and has been doing insulin injections herself since she was 12 :)

We were told that we should begin to see signs that it is working within 3 weeks !
He let me take a picture of him on day one, and we have decided to take one each month and then make a collage of the pictures showing his growth :)
Nothing like doing something positive right ?

How's everyone else doing in their quest for answers ? Anyone close to jumping off this roller coaster yet? Or closer to a cliff ? :rof:
 
Thanks ! We purposely bought his clothes about one size too big :rof: The shirts are easy to get away w/ being "too big" cause they're just t-shirts, and the shorts he just wears a belt with for now. We skipped buying long pants or jeans as it's still crazy hot here anyhow and we know whats coming. As for shoes, he is obsessed with shoes :lol: however, he has at least three "newer" ones from a few months a go so being the mean mommy I am he has been forced to wait on the New shoes ! :rof: It's going to be a bit strange when we do buy new shoes this next time because we have been buying the same size for nearly 3 years now ! :shifty: Hopefully his clothes will last a few months till we can get over the expenses from buying these for the new school year, coupled with the vast amount we spent getting Gab into her new apartment, and new college books, and food, and on and on...:rof:
 
Ha Ha I know what you mean about buying the same sizes. I was sorting all the boys clothes out yesterday, and realised that the 2yr winter trousers go up to Freddy's shoulders!!!! I think he will be wearing last years winter clothes again (good thing I didn't get rid of them really!!!!).
Glad to hear thet JJ is being so fantastic about his injections and even better that you should start to see some improvement so soon!!!!
Good luck!! xx
 
WTG JJ!!! :award2:

Hope the you know whats fit a little longer T! :eek2: :rof:

Dusty. xxx
 
Melissa goes to Hopkins Pediatric GI doc this coming Tuesday. Tuesday can't get here fast enough. No changes. Still taking a ton of meds, still pain.....
 
I am hoping you survive till Tuesday - and hoping that they will be able to help her. Sending you lots of healing thoughts xxxx
 
Gonna be a tough week. First Amy's Hamster died, tomorrow she starts a new school, then colonoscopy/Endoscopy Thursday. I don't know if I am more frightened of them finding something or not finding anything.
 
Wow that will be quite the week for her.
I hope all goes well for her and you.
Yes I know what you mean.
We search and search for answers.
Then we think do we really want to know???
 
Good luck Poppets mum - Fingers crossed that it all goes well on Thursday - I know how it feels being scared that they will find something and being equally scared that they won't. xx
 
Thanks Farmers wife,crohn's mom and Suzysu, she'll be drinking the pico salax in about half an hour from now.:stinks:
 
...so how did Thursday go? Any closer to sorting things out? I sure hope so. Sending warm thoughts and prayers your way. NL
 
Melissa went to Hopkins this past Tuesday to see GI. The doc wants her to have a motility study done. It may be possible that because the one area of colon was attached to the pelvic wall for so long that damage has occurred to that portion of the colon so that it may not be able to contract properly. The doc has to contact the adult GI doc who does the studies in order to set it up as he does not take pediatric patients any other way. She will also be informing him about my situation as well as briefing him on Daniel's GI history. Hopkins is starting a new clinic solely devoted to GI Motility issues. Our family would be a good one to research, gather data from and follow. There are several different types of motility studies that can be done. Our goal now is to work towards reducing the meds necessary to keep Melissa's colon moving things along. I took the x-rays with me to show the doc. She said she was glad I did. She would not have called the amount of hard stool in the colon that was directly in front of the coccyx normal. So, that makes three doctors and two parents who disagreed with the radiologist who wrote that the x-ray was within normal limits. If it turns out that there is only a section of the colon not functioning correctly, there are things they can do. My guess is surgically removing that part of the colon? It was really neat having a doc say to me, "I agree with you. I think this is more of a motility issue." I am so grateful that Melissa's docs care so much about her as to order test for something that may not be part of their field. Melissa's GYN was the one who ordered this last set of x-rays. She was floored at the amount of meds required to get Melissa's colon functioning. Her pediatrician listened to what I had to say and ordered blood work. The blood work was what indicated to me that this was more of a motility issue. The inflammation markers have gone down since the surgery.

What was nice about our visit with GI was that she answered any question I had, whether it was about Melissa's issues or my own GI issues. Due to my vast medical knowledge, I get into some very detailed non-laymen’s terminology conversations. Mike thinks because the doc knows I understand what she is talking about and doesn't have to spend so much time trying to help me understand what is going on that it frees her up to answer other questions that may not be patient related. Hmm, I never thought about it that way. We have known this doc (19 years) since she was a resident at Johns Hopkins. She is now the Chief of Pediatric GI. She is more than just a doc, she is a friend. How awesome is that!?

Now onto my GI doc visits. The Endoscopy biopsy results showed inflammation in the esophagus, erythema and friability of the antrum compatible with gastritis. Hiatal Hernia in the cardia.

Biopsy: No signs of bacterial infection that could be causing the gastritis. No Barretts disease.

I am currently having the upper GI motility as I type this. The glowing gourmet breakfast was wonderful; NOT!

I will have a colonoscopy next week and a Colon Sitz Mark Study (type of upper and lower motility study) the following week. I’m grateful I have a GI doc who is willing to do what is needed to get to the bottom of things. Hopefully I can get a diagnosis so that the proper treatment can be implemented and I won’t have to have the GI pain any more.

I had the ultrasound of the area where the two blood clots were located back in May. They are still not fully dissolved. Small amounts of the clots remain. Bummer! The tech also did an ultra sound of my implanted port and the surrounding area. I’m waiting to hear back from the doc. I’m sure she’s not going to let me stop the Warfarin. Shucks!

Hubby gets to schedule an endoscopy and lots of other fun things. I think he will schedule his sleep study first.

This ends this chapter. Nothing going on much in my family. LOL! Coming soon, updates on….
 
Apologies if this turns into a long post. Yesterday it would have been much shorter but now I am completely confused. So colonoscopy went really well. The only thing I was wondering about during prep was that Amy had just 3 small bowel movements. Afterwards he came and sat with me and showed me pictures of a very nice healthy looking bowel. At this stage he said he was going to diagnose her with ibs. I can't help feeling disappointed about this as I was really hoping he would find an ulcer or something else that it a quick and easy fix. (yeah I know I want to have my cake and eat it:ylol: So last night I get a phone call from GI doc saying Biopsy results are in and he totally sang the guys praises who does these, saying he is one of the best, they are showing mild/moderate inflammation in her colon:confused2: um ok. He is now talking about things like MRI and possibly another scope just lower down. Of course I never learn to keep my mouth shut as I had told Amy she would never have to do that again. Now he is not sure if it is indeed an IBD After a near sleepless night he phones me again this morning to say colonoscopy prep could have caused inflammation but we are to go ahead with MRI. My head is just spinning and I don't know what to think. Inflammation explains a lot of Amy's symptoms to me but apparently not to him. One of the other things he did say was the amount of inflammation doesn't explain the amount of pain she is having, huh? The thing is with my kid she seems to like to keep everyone guessing, as we still have never had a satisfactory explanation for her small bowel abscess two years ago.
 
my goodness - that is confusing - I am guessing if she hadn't had her previous abscess they wouldn't be so worried about the inflammation? They can't see the whole of the bowel with the scopes so I guess that is why they want to do the MRI, maybe he thinks the inflamation could be worse or showing more signs somewhere they can't see.
I know it must be so frustrating that you still don't have any clear answers but it looks like you are well on the way to getting there with a GI who is taking things seriously.
I hope she gets these other tests soon so that she can get the help she needs. xxxx
 
I am glad he ordered an MRI. Danny's scopes always look good (although sometimes red) but biopies shows non-specific mild inflammation in many parts. Doctors do not call Danny's IBS, but also are not convinced it is Crohn's. Good luck!!
 
Jeanne- I know you said he got worse on pred but did they ever consider if he was allergic to th pred . My oldest is actually allergic to it. Has he seen an allergist?
Depending on how he reacted - my sons was not typical
 
Thanks MLP. We saw an allergist, but he was not tested for allergy to Pred. That is interesting point tho .... and I believe there are purer forms of the steroid. Danny had taken pred many times in the past for asthma, but that was several years before this illness so he could have become allergic.

I will share an update now .. Danny has now returned to school, 10 days without missing a day!! (After 3.5 years of home instruction this was huge for us). I'd say he is feeling about 75% better than when at his worst. And that is enough energy to make it through a normal day. Our next plan is to try LDN again, but given his slow improvement trend over the last year his doctor thought it was best to not rock the boat and see if he continues to improve. Danny caught a cold after his first week and had a 102 fever on Saturday. (In 7th and 8th grade it was back to back colds that set him back onto home instruction) I thought "here we go again ..." but by Sunday afternoon he was feeling much better. Whew! Fingers still crossed!! and I pinch myself each day because it is so hard to believe he is doing so well :)
 
Im so glad Danny seems to be improving - and managing school!!!! a massive achievement! - I hope the improvement continues and he reaches 100% improved! xxxx
 
Danny's mom what do they think it possibly maybe could be? Do they ever give you any clues? I am glad my GI is open minded enough to admit that Amy doesn't fit neatly into any one category and for all he knows it could even be some new unexplored IBD. So glad to hear Danny is feeling a fair bit better. I can't believe how strong these kids can be the things they learn to cope and adjust eventually to is amazing. I so hope this continues for him.;)
 
The 2 GIs we see admit they do not know and Danny is a tough case. Other specialists think it is Crohn's. (Infectious disease dr, endocrinologist, rheumis, internist ...) After the Cystic Fibrosis dx (then retracted) ... accepting undiagnosed became much easier.
How is Amy doing now? (We've also been told by a 4th GI that Danny's pain and symptoms do not match the inflammation found IF it was Crohn's)
 
@dannysmom. What a fab update! How wonderful to read of Danny's achievements, bless him. May it keep getting better and better and better! :)

@poppets mum. Have they done blood inflammatory markers or faecal calprotectin? If not I think it would be well worthwhile to see how they correlate with the scope findings. These tests may well return normal results but I think it is a good start before moving onto to more extensive tests of the small bowel which in my opinion they should. :hug:

Dusty. xxx
 
Such good news Dannysmom ! :) I always love hearing when the kids are feeling good!

JJ has been on the Hgh injections for 2 weeks now, and it's going pretty well. He mostly does them himself. The last few days tho his anxiety has creeped back up and he's been having me do them for him because his hands shake to badly :( We haven't noticed any side affects really. He had headaches the first few days and I was a bit worried, but they have now gone away :)
He told me yesterday that his shoes are getting really tight ~ of course that's exciting news around here since it's usually the feet that grow first, and then the height follows ! LOL. Other than that, the only thing we've noticed different is that he is eating so much more! That's such a great thing to see tho from a kid that has been eating like a mouse for the last year(ish)
Can't wait to see what the next couple of months bring for him, but so far it seems like the Hgh is beginning to do it's thang ! :)
 
Thanks for the update T!!! :):):)

I am so excited for JJ! I'm sorry to hear that he is having some anxiety over doing the shots himself, bless him...:hug: but as long as they are working who gives hoot who gives them! :lol:

I am hoping, wishing and praying that all continues to go well for JJ hun. :goodluck:

Dusty. xxx
 
Danny's mom
Have they looked at mcas
Not systemic masto
This is milder no excess mast cells just ones that miss behave
Criteria just came out a year or two ago

Here are the links

http://www.jhoonline.org/content/4/1/10

http://www.ncbi.nlm.nih.gov/m/pubmed/21035176/

http://www.jacionline.org/article/S0091-6749(10)01333-3/abstract



Other thing to look into us eds
Connective tissue disorder
Depending on the type it can cause a lot of what you have seen.
A child I know had many years undiagnoised until finally they checked this out.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

The child did have a lot of unexplained Gi issues to the point of tube feeding.
 
Thanks for the MCAS papers ... I had only read about ME so find them interesting. Will spend more time rading about it.

We did do genetic counseling for connective tissue disorders about 2 years ago (because my older son is believed to have an unknown connective tissue disorder that contributed to back issues.) It did not yield anything however.

thanks again
 
G'day Dusty. Thanks for replying to my post. All Amy's bloodwork keeps coming back as normal. He did mention her doing a stool test, is that the fecal cal thingy? He also talked about putting her on Pentasa, although he even admitted cos of where the inflammation is ie not in the rectum so probably more Crohn's like, that Pentasa would probably not do much. He did say that if he saw something on MRE that he would be pulling out the big guns. Ok now I don't want her to have IBS cos this seems like no fun at all if that is what she ends up being diagnosed with, at the same time I just can't believe that here we are 2 years on, worrying and wondering if she will get a Crohn's diagnosis. GRRRRR
 
Hi everyone!

Freddy had another GI appointment today. The GI thinks he has small intestinal bacterial overgrowth and he is putting him onto a course of metronidazole and has advised a low sugar diet (I thought we already had a low sugar diet but now I have looked into it I realise that we do not!!). I am considering putting the whole family onto an SCD-type diet but am a bit scared and I don't know how we will all cope!!

Anyway I hope all little tummies are behaving themselves!
 
My doc is looking at the same. But he said that SIBO is usually a sencondary cause. We need to figure out the main problem is but still treat the secondary. Which is one of the reasons my GP wanted to do this very expensive testing on the stool. I hope the meds work. Let me know how it all goes.
 
Damn! - I thought we had found the answer! everytime he goes it escapes out his nappy and runs down his legs - he seems to have toxic poo and now has nappy rash down to his knees!!
Anyway I am sticking well inside my new little bubble in the hope that the antibiotics and new diet sort things out!!
Are you going totally SCD or just trying to eat more natural?
 
Nope Suszu were doing clean eating diet. Talk to crohnsinct about it. She's cornered the market on this.

MLP, What is Foodmad diet? I've heard it mentioned but never looked it up.
 
You eat low lactose, no gluten, avoid certain fruits / veg that have high amounts if sugars in them since they cause issues ( bloating gas etc.., ) in the gut.
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495

Some recipes above
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495
FODMAPs are a group of carbohydrates that among IBS sufferers are malabsorbed in the intestines, causing excess gas, diarrhea, and bloating. By avoiding high FODMAP foods, IBS symptoms can be kept at bay. Recent studies have shown GREAT promise and hope for relieving IBS symptoms through this diet modification. In fact, 75-90% of people suffering from IBS who starting following the low FODMAP eating approach had significantly decreased GI symptoms, enough to continue following this eating plan. However, it takes a great understanding and knowledge of these foods, how to avoid them, and what to look for on ingredient labels. This can be tricky and requires some guidance from a professional…. which is why I want to help!!! Knowing first hand how much more enjoyable life can be without IBS symptoms, I will give a crash course on each FODMAP for you
Click to expand...
 
We did The diet for two weeks but saw no improvement in DS. I was starting to get sick on milk. I had done it with him so I pulled the diet before lactose became an issue for him.
But C has been his issue never D
 
All these diets are all different ... it is a bit frustrating, but they are targeting different things. My older son, who has had digestive issues his whole life (but much different than Danny's constant troubles), recently tried FODMAP after realizing that apples make him sick, and he is lactose intolerant. FODMAP works really well for him. Apples have no effect on Danny.
 
Thanks MLP - I have just got a FOODMAP diet book from the library - I haven't had a chance to read it yet but felt it seemed a little more friendly than the SCD diet (this sadly was after I had just raided the supermarket of all its extra expensive gluten, wheat free flour and associated items!!!!).
:)
 
Dannys mom - I guess everyone is different and has different issues so every diet will work better or worse for different people! was the foodmap diet easy to follow for you son? what ever diet we put Freddy on will have to work for the whole family!

Question for everyone: If your digestively challenged child can't eat certain things do you still allow siblings those things? I am of the view that if Freddy can't have something the others shouldn't either (at least not if he can see them). My husband says that the older ones will resent Freddy for this and we should let them eat whatever they like and Freddy will just have to get used to the idea that he just can't have certain things. I struggle with this as Freddy is only 2 I don't think we can really explain this to him properly.
 
Wow hard one suzy because you are right he is only 2 and while I am sure he is the smartest 2 year old on the planet there is no way you could reason with him and have him understand. BUT I agree with hubby too. Maybe let the kids only have those items when Freddy isn't around??? If the things he can't have aren't really all that good for anyone then I say take them away period!

Good Luck!
 
Yep, agree with Crohnsinct... For now, if they are thing's you'd like to allow the other kids to have, do it when he's not there...

But, as he and siblings get older, I think you'll have to find a balance where he learns that there are things he can't have but his siblings will also have to learn that, as a family, you support one another and sometimes make sacrifices...
 
poppets mum said:
G'day Dusty. Thanks for replying to my post. All Amy's bloodwork keeps coming back as normal. He did mention her doing a stool test, is that the fecal cal thingy? He also talked about putting her on Pentasa, although he even admitted cos of where the inflammation is ie not in the rectum so probably more Crohn's like, that Pentasa would probably not do much. He did say that if he saw something on MRE that he would be pulling out the big guns. Ok now I don't want her to have IBS cos this seems like no fun at all if that is what she ends up being diagnosed with, at the same time I just can't believe that here we are 2 years on, worrying and wondering if she will get a Crohn's diagnosis. GRRRRR
Click to expand...

Hey poppets mum,

Unfortunately normal blood results aren't a rare occurrence. :( If the stool test is looking for inflammation then that would be calprotectin or lactoferrin.

Ah hell, there's no denying that when you are faced with this disease and everything that goes along with it you surprise yourself with the things that you wish for! :hug:

Dusty. xxx
 
Hi Suzy ... I agree with the others and you. Two is just too young for him to understand. It will be good for his siblings to learn to be supportive. Danny was 11/12 when we tried the restrictive diets ... and only he followed them. We'd eat the SCD foods with him ... and then add pasta or rice to our meal too. (Danny did not like pasta or rice much anyway). We all liked the SCD desserts more than Danny (almond nut muffins, pecan pralines). I think FODMAP is much easier as it does allow more carbs. From what I read you just needed to limit gluten nor remove it entirely (maybe because fructose is the bigger issue for my son) .. so the diet is not that hard. Carrots and stringbeans are fine and they are the family's favorite veggie anyway. Good luck!!!
 

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