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07-30-2012, 07:58 AM   #331
Tesscorm
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I hope you don't have to wait too long for the results and, of course, that the results show nothing serious! And, wow, what secret powers he has!!!

How is Gabby doing? I hope she's feeling alright.
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Diagnosed May 2011

Treatment:
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
07-31-2012, 05:35 PM   #332
poppets mum
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If he can will himself mouth ulcers, you should have him play the lottery
08-02-2012, 07:26 AM   #333
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Nearly the end of the week T!

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

Dusty. xxx
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08-03-2012, 08:47 AM   #334
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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????
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08-03-2012, 09:01 AM   #335
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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.
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.

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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
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dx Erthema Nodosum
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08-03-2012, 09:13 AM   #336
Momto2girls
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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!?!?
08-03-2012, 09:26 AM   #337
Farmwife
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Well she has soft stool after 3-5 days of NO stool.
Yes a poop detective is what I've tried to be and a poop detective I am NOT!

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.

Have you heard from your GI yet?
08-03-2012, 09:54 AM   #338
Momto2girls
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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??
08-03-2012, 09:55 AM   #339
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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.
08-03-2012, 10:38 AM   #340
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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.
Well at least my hubby is happy with that!

So basically some more wait and see.


Maybe I can go back into my dream world now.
It's lovely here, the breeze, the ocean air and NOT a COW or TRACTOR in sight!
08-04-2012, 03:25 PM   #341
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Sorry, posted in wrong area of forum. Re-posted under new topic.

Last edited by Naturelover; 08-04-2012 at 03:36 PM. Reason: Placed in wrong arear of forum. Oops!
08-08-2012, 06:47 PM   #342
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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
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08-08-2012, 08:22 PM   #343
Tesscorm
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OMG, soooooo glad the results were good!!! What a huge relief that must be for you!!!

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!

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!
08-08-2012, 09:47 PM   #344
poppets mum
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Brilliant news about JJ
08-08-2012, 09:51 PM   #345
poppets mum
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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?
08-09-2012, 03:29 PM   #346
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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.
08-09-2012, 05:40 PM   #347
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Awesome! Grow JJ, grow!
08-10-2012, 09:22 AM   #348
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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!!
08-13-2012, 01:37 PM   #349
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Hi Suzysu,

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

I hope you continue to gradually see more improvement

Good luck at the next apptmt!
08-13-2012, 07:19 PM   #350
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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 !
08-17-2012, 06:51 AM   #351
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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!

Dusty.
08-25-2012, 10:37 AM   #352
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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 ?
08-25-2012, 11:20 AM   #353
crohnsinct
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Wow! Good for JJ! 3 weeks? Holy cow! Hope you didn't buy too many new clothes for school....
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Daughter O dx 2/1/12 at age 12
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Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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08-25-2012, 11:26 AM   #354
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Thanks ! We purposely bought his clothes about one size too big 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 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 ! 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 ! 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...
08-25-2012, 12:58 PM   #355
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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
08-26-2012, 03:42 AM   #356
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WTG JJ!!!

Hope the you know whats fit a little longer T!

Dusty. xxx
08-29-2012, 09:16 PM   #357
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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.....
08-30-2012, 02:59 AM   #358
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I am hoping you survive till Tuesday - and hoping that they will be able to help her. Sending you lots of healing thoughts xxxx
08-30-2012, 10:55 AM   #359
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Good luck on Tuesday!!! I hope they are able to help her quickly!!
09-03-2012, 08:05 PM   #360
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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.
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