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Crohn's Disease Forum » Parents of Kids with IBD » Parents of Young Ones Support Group


 
01-10-2014, 03:34 PM   #1
Farmwife
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Parents of Young Ones Support Group

About this Support Group

This support group is for help and advice of those that face the unexpected and often heart breaking challenges of caring for a young one with Ibd and those dear wee ones that are still undiagnosed.

Whether it's potty training during a colitis flare or offering advice about how to teach tots to swallow pills, this is the place for you.

Also, anyone, no matter if you have an older child or you yourself have this disease can offer advice and support. We parents with young ones need all the help we can get.

Hugs to all as we face this disease together.


Members

AlyssaKoe, amor1218's Avatar amor1218, Chase's Mommy12's Avatar Chase's Mommy12, cherryblossoms's Avatar cherryblossoms, DanceMom, emie416, Emily's mom's Avatar Emily's mom, Farmwife's Avatar Farmwife, Goofychicken's Avatar Goofychicken, happy, hezekiahsmom's Avatar hezekiahsmom, ic7997, Imerald's Avatar Imerald, Jelly loves Peanut butter, jess_mama's Avatar jess_mama, KimberlyKC, ksh, LJS, LWade10, M&Mmom, Malgrave's Avatar Malgrave, Matty G, Moloko2002, mommabear2, mommaof2's Avatar mommaof2, Mummy1974, mummy2gastricboy, nelsonshan's Avatar nelsonshan, Pilgrim's Avatar Pilgrim, polly13's Avatar polly13, RexMom's Avatar RexMom, Saskia and Seamus, sibhuskyblue's Avatar sibhuskyblue, Suzysu's Avatar Suzysu, tommysmum204's Avatar tommysmum204, TrustingNHim's Avatar TrustingNHim, ZMommy

Last edited by Farmwife; 01-11-2014 at 08:04 AM.
01-10-2014, 04:04 PM   #2
Farmwife
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Hi and welcome.
I'm Farmwife and the fairy in my avatar is my 4 year olds Grace.

Please feel free to introduce your child and ask as many questions as you like.
We're here to help in the time of need and maybe give a smile when one is needed.

My disclaimer (everything has a disclaimer) is that we are just parents and not doctors.
So please consult your doctor before acting on any advice given here on this forum.
01-10-2014, 06:45 PM   #3
ksh
 
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Just a quick hello! Will be back to introduce myself.
01-14-2014, 03:48 PM   #4
Suzysu
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Hello!

I am Freddy's mum - a very short version of his story is that he did fine whilst breastfed and then things have been difficult since he started eating solid food - he is now 3.5 years old and as yet undiagnosed with anything specific.
I was just wondering how people deal with accidents - I know Freddy is still young but he is dry and has been for sometime but has many other accidents usually several times per day - I try not to feel cross about it but as my little people are all close in age I just feel like I have been clearing up poo forever!! - I have researched ways and methods to help and asked Dr's and health visitors for advice - but mostly I get 'oh yes that is a tricky situation'!! So any advice about this would be most gratefully received, especially as he will start school in September.
Thanks
01-14-2014, 04:05 PM   #5
Farmwife
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Hi, it's good to hear from you again.

Do you think his accidents are constipation related?
For Grace hers were. Now we were told to start enemas when it starts again.

Does Freddy have play groups. Maybe being around kids his own age will help show him that they don't have accidents.

Do you notice if he shows a fear of going to the bathroom? Poor little guy, with all he's been through maybe it's fear?

Could it be that he's as stubborn as Grace and will turn your hair gray before your fifty?


Just some ideas. Hugs
01-14-2014, 04:53 PM   #6
Suzysu
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Its good to catch up with you guys too - I just wish FG's news was better.

Freddy can sometimes go for a day without accidents so I know he can do it. He knows and understands what he should be doing, the accidents tend to be small amounts and occur when he is relaxed ie playing or watching TV, I did think he was just being lazy but it happens so frequently and we have talked about it so much I'm not so sure anymore. He did have terrible pain associated with motions (proctalgia and fissures) and it does still hurt sometimes so it could be this - just not sure what I can do about it, he is on softeners and we blow bubbles etc to help. I just don't want him having accidents at school - kids can be so mean
I know we will get there in the end, just got to find the right way of helping him!
Thanks
01-24-2014, 08:21 AM   #7
ksh
 
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Hi everyone! Back to introduce myself. My little guy, Owen, has been sick since October with loose and mucusy bm's. His reflux has come back. His belly gets really distended and he has explosive bm's. He passed some blood one time. He had several tests done all turned out ok except for his scopes. His lower scope was fine but his upper scope showed he has eosinophilic esophagitis. We have to do some blood testing to figure out what he is allergic to.
01-24-2014, 05:01 PM   #8
Farmwife
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I'm glad he has a dx but sad it's eoe. We suspect my son has this even though his scope was clear of them. Time will tell.

Do they have a plan to help with his lower GI problems?
01-24-2014, 05:12 PM   #9
ksh
 
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Farmwife, do you have any good EoE resources/info that you can share with me? You can pm or post (not sure if I am still ok to be on the forum?)
01-24-2014, 05:23 PM   #10
Farmwife
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Farmwife, do you have any good EoE resources/info that you can share with me? You can pm or post (not sure if I am still ok to be on the forum?)
Your perfectly ok to be here. Also, kfa also has a GI section. I'll get some links for you on eoe. Also MLP is on kfa and has a lot of info on eoe.
01-24-2014, 05:32 PM   #11
ksh
 
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MLP? I need a tutorial on acronyms! I have been able to figure out a bunch, but I am still clueless about some :/
01-24-2014, 05:38 PM   #12
Farmwife
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My little penguin is MLP ALSO CALLED THE BRAIN, THE MOST AWESOME FORUM MEMBER and my favorite......MY BUBBLE POPPER.

Also I feel stupid but under my avatars is a support group for Ibd and egid's. Just click and it has info on eoe.
01-24-2014, 06:08 PM   #13
my little penguin
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http://community.kidswithfoodallergi...ilic_disorders

Links to kids with food allergies EoE section.

It does require a password etc...

But free
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01-25-2014, 02:32 AM   #14
Suzysu
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Hi ksh, I hope the blood tests help to figure out what is triggering things and you can get a treatment plan sorted, sending big hugs xx
01-25-2014, 02:59 PM   #15
Malgrave
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I'm in!
My signature tells the main points, but I'll be back with our latest updates when I have more strength to do it. The last weeks have been again very difficult and last week we spent again a week in the hospital ;-(
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*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
01-25-2014, 07:47 PM   #16
Farmwife
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Malgrave I hoped for better news. I was just thinking about you and you little man. Update when you can.
01-26-2014, 07:34 AM   #17
polly13
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Hi I'm mom to Lucy age five who was diagnosed with crohns when she was two and a half. Symptoms started at 9 months old. Happy to say she is doing really well at the moment on humira and methotrexate, she failed infliximab - she has also been on 6 mp, flagyll, prednisone and cipro - all of which had little or no effect on her symptoms. Having said that she is now better than she has been her whole life so happy days
01-26-2014, 08:32 AM   #18
Farmwife
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I'm so happy she's doing good. She really deserves a normal life.

A question for you all.

HOW DO YOUR TEACHERS HANDLE YOUR KIDS WHEN THERE HAVING YUCKY FEELING DAYS? IS THERE WAYS THE TEACHERS TRY TO HELP THEM?
01-26-2014, 01:37 PM   #19
Suzysu
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Malgrave - sounds like you have been through so much, I hope your boy is having a better week.
Polly 13 - so glad things are going well for Lucy!
Fw - what a great question! Freddy is not at school yet but I do worry how he\ his teachers will cope with how he is sometimes. At our infant school (age 4\5-7) they have a chill out/quiet area in each class, so I guess if they are feeling tired and grotty they can go there or if feeling worse they can get a friend to take them to the school nurse, if they are on a restricted diet and have to eat separate from other kids they get to choose a special friend to go with them. Each class has a teaching assistant to help out as well although with 30 kids and two adults I'm not sure how much time they would have. Its the faecal accidents and how they might deal with it that worries me most at the moment. How does your school deal with it? Is grace part time at school and home schooled part time too?
01-26-2014, 04:33 PM   #20
polly13
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Lucy has a special needs assistant a resource shared between her and another student. Her role is to help Lucy if she is feeling unwell or tired and to assist her in the bathroom. It really is a great comfort to me. Lucy goes to a small rural school with just under 100 students so we pretty much know everybody and everybody looks out for her. Her sna sits with her when she isn't feeling great. When she was in kindergarten they used to leave her lie down on a beanbag with a blanket, her teacher has said this is an option should it arise but thankfully it hasn't .
01-26-2014, 05:44 PM   #21
Farmwife
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We just purchased her first bean bag chair today. She loves it.
Her teacher is great but I know Grace is stubborn even without pain. Lol

She is in K4. This year is not counted but next year will be. She goes 4 half day with a midweek break to get her strength back.

As of today both her hands (finger joints ) are hurting. I would hate to pull her out but she can't keep acting out in school. Maybe three half days would be better.
01-27-2014, 02:33 AM   #22
Suzysu
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Bless her, when you say acting out do you mean missing out or being naughty (because of the pain)? Do they run chronic pain clinics for kids? I wonder if some of the pain management techniques they teach to adults could be applied to kids?
I know what you mean about being stubborn even when not having a bad day - freddy is just the same!
01-27-2014, 08:36 AM   #23
Farmwife
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Acting out as in giving the teacher problems. She gets an attitude and will not listen. Thankfully her teacher knows it's not her normal personality. Still she can't keep doing this at school.
01-27-2014, 08:43 AM   #24
Suzysu
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Is there a school councillor? Or a teacher who is a trained councillor? Maybe they could work with grace to come up with a strategy or coping mechanism to help grace aask for help when she feels awful rather than acting up? I try to explain to Freddy that just because he feels rubbish he can't act the way he does, he needs to talk to me so I can help him - mind you so far we haven't made much headway! So if you come up with something that works please let me know about it!!!!
01-27-2014, 09:20 AM   #25
Farmwife
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I tell Grace the same things. When she's well she has great manners but the yucky feeling brings out the worst.

I took a copy of Grace's pain scale that has smile faces on it to the teacher. I told her if Grace acts up to have her point to the face that describes how she feels.
Well see how it goes.
01-28-2014, 01:32 AM   #26
Suzysu
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That's a good idea, and it sounds. Like your teacher is on board too xx
01-29-2014, 05:05 AM   #27
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Hello, my name is Susan and my daughter Ella (2.5 y/o) was just recently dx'd with mild UC in November 2013 and we started Sulphasalazine in December after a month of dairy free to see if that made any changes. I'm looking forward to learning more and making sure we're doing everything we can for our little peanut.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
01-29-2014, 08:07 AM   #28
Suzysu
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Hello susan, I'm so sorry your have had to find your way here through your little ones diagnosis, but you have found an amazing place for information and support. There are some wonderful mums and dads on this forum who will know just what you are/ have been going through. How is Ella doing at the moment?
01-29-2014, 08:30 AM   #29
Farmwife
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Hi Susan and welcome to the forum and our support group.

I'm so sorry to hear about her dx but happy it seems mild.
Please feel free to ask as many question as you like or contribute in anyway on this forum.
We're all here to help.


Hugs
01-29-2014, 12:54 PM   #30
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Thank you, it's nice to have a place that understands our struggles.

Ella is doing OK. It's a fight to get her meds in every single time and it just really sucks. Otherwise, it seems she has only had one flare up since we started the meds. I just really hate feeling like there are lots of little things we've noticed since she started the meds that the GI just brushes off. We get new labs in March, but I just feel like it should be sooner. How often do your little ones get their labs done?


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
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