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Farmwife

Farmwife

Joined
Apr 28, 2012
Messages
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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.
 
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Hi and welcome.:soledance:
I'm Farmwife and the fairy in my avatar is my 4 year olds Grace.:rosette1:

:rosette2: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:yfaint:) is that we are just parents and not doctors.
So please consult your doctor before acting on any advice given here on this forum.
 
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
 
Hi, it's good to hear from you again.:ghug:

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

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?:ylol:


Just some ideas. Hugs
 
Its good to catch up with you guys too - I just wish FG's news was better.:ghug:

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
 
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.
 
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?
 
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?)
 
ksh said:
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?)
Click to expand...

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.
 
MLP? I need a tutorial on acronyms! I have been able to figure out a bunch, but I am still clueless about some :/
 
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.
 
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
 
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 ;-(
 
Malgrave I hoped for better news. I was just thinking about you and you little man. Update when you can.
 
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
 
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?
 
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?
 
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 .
 
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.:yfaint:
 
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!
 
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.
 
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!!!!
 
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.
 
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
 
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?
 
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
 
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
 
Yes the meds is the hard part. What type of meds is it, pills, liquid or powder?

My Grace gets labs every two months or more. Grace never really shows much in the way of labs, so we go based on symptoms and scoping.

Also what symptoms are showing up?
 
It's a banana flavored liquid. The first few days were the worst, then she did ok for awhile. Once we started the new bottle, she started refusing adamantly and we had to hold her down and force it. That's when the flare up happened. We called the pharmacy and they don't think they flavored the second bottle. So they sent us a new bottle and the flare up went away but she still refuses the medicine. We also give her a multi vitamin for the folic acid and are supposed to be doing iron as well, but I wanted to see what her iron was with just getting the UC under control. But we've also recently started seeing bruises on her legs. So I'm thinking we need to start the iron back.


Her symptoms have been, tummy pain, bloody stools (since she was 3 weeks old, but they say it's not related??) slowing weight and height gain, loose stools (3-5x/day) and her labs show she is anemic. She had an upper and lower scope, and an upper gi series with small bowel.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Oh, and she has also been waking up with leg pains. Not sure why that is. I'm hoping she's just growing now that we're getting things under control. (Fingers crossed)


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Do they still feel that the blood is unrelated?:eek:

A few thoughts

How long has she been on the med? Some times meds need adjusting or even a change to get the kids in remission.

If I might suggest that you post your girl's story also in the regular parents section. They always have great insight on how meds work and ideas to help.
 
Does the medication come in pill form? My youngest was able to take Nexium "the purple pill" at 2 years old. She preferred swallowing pills over liquid medication. We started by putting the pill in applesauce to help it go down but after a few days she could swallow it easily. I would place it in the back of her mouth, she'd tip her head and drink from her sippy. You can practice swallowing pills using tic tacs.
 
No, the blood is definitely related. I meant more so for the leg pains, increased urination, etc. Is there a specific place to post her story? I'm still learning my way around here.

DanceMom, I'm assuming it does because they have to make the suspension from a pill I believe as it's a compound pharmacy we have to get it from. I might just try the tic tax idea and see how it goes. Thanks for the suggestion.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
It's the forum that this thread is in. Here's the link.http://www.crohnsforum.com/forumdisplay.php?f=49
At the top left of the page is a button that says NEW THREAD. Just click it and you'll be set.
Let me know if you need more help.

DanceMom that's great idea about tic-tac's. Also I've heard the m&ma's are a good way to start. My Grace is still to scared to swallow pills. Her brother taught himself at three.
 
Oh leg pains plague many with Ibd, young and old alike. There are certain arthritis that Ibd can cause. If it's keeps up, make sure to have her evaluated by a rheumatologist. I feel so bad that Grace suffered for years with joint pains and now she has a bad case of JRA.
 
I love the tic tac idea!!

can you mix the suspension with something like yoghurt? That's how I give most of Freddy's medicine.

Something to make you guys smile - I have been having trouble trying to get Freddy to drink his movicol laced almond milk, today he left it on the kitchen table and I caught the dog polishing it off!! I am still waiting for the effects...........
 
Thanks everyone. I really appreciate the warm welcome and the great advice. I'm starting to feel a little better already!

We tried putting it in one of the thicker naked juices and she can taste it's off and won't drink it. She's off dairy for the time being until we're sure we have it under control. Her GI said at least 6 months before we try introducing it again. I'm sure if I could put it in a milkshake it would be a non issue, but as of now, all of the ice cream machines in the world are "broken".


I'll definitely post our story and check out the other threads. Thanks again, it really does mean a lot to me. :)


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Freddy has been dairy free for nearly a year, we (UK) can get dairy free ice cream - not sure what US brands there are, but that might be an option. Also I have made smoothies with coconut milk (yummy,lots of fat for weight gain and other goodies too!) Or soya yoghurt - I try to avoid soya but I haven't found a good yoghurt/pudding alternative (yet). Freddy was always very suspicious of new things and we certainly have had our battles I have had to resort to bribery on occasion or 'if you don't take it you can't/won't be able to........' Which I hate doing but needs must I suppose.
 
Yeah, we've tried some of the coconut ice creams and she wont eat them, she will however eat the ice cream sandwiches made with the same ice cream, go figure. I've not tried the yogurts though as she's never been overly fond of them to begin with. Pudding however she loves, I bet I could make it with the almond milk and she wouldn't notice, I may have to try that. And we always have a stash of mini cupcakes around for bribery purposes.

What multi-vitamins do you guys use? We've been using flintstone gummies, but I would prefer a better choice, just seems the one at the whole foods stores don't have enough folic acid unless you take 2-3 and I only want to deal with the one.
 
Ha! Ha! - She seems to be immune to the effects of Movicol! (thank heavens!!):poop:

We use Abidec vitamins (liquid form) but I have just checked and it has no folic acid in it - can your GI or regular doctor recommend a better brand - or can you get separate folic acid supplements? (another med to deal with though).
 
My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half acolonoscopy(no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes reallytiredand doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.hes been getting pain in his arms and legs for over 2years now.
 
Hi and welcome.
I'm so sorry to hear about your boy.
As Dusty told you in the other thread that my Grace has a g-tube also.
It's so hard to be so young and so much going on. Then to make matters worse the can't vocalize all that's going on inside.

May I ask all the meds he's on?

Why did he do a clean out without prep first? Was it an emergency scope?

Sorry, am having computer problems and hopefully soon will have it fix.
I'm not on as much because of it.

More parents will be along to help.
 
full resultsFerritin low less than 4B12316 whixh is normal Serumfolate18Hb 11.5White cell 10.5Platelets 379Thyroid normalLfts normal*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1 . Vitamin D was 68.8 which is normal.

Meds
Omeperzole
picosulfate
docusate
mevberine
has had sucrlafate, movicol, lactulose, erythromycin (help gut work quickee) in the past.
they did that as I mentioned dietitian thinks ibd so he thought he could have a look.

thanks
 
Hello mummy2gastric boy, im so sorry you are going through all of this, it hard enought to go though it as an adult let alone a toddler/pre-schooler. Im no doctor but given the clinical signs of your little guy and the lack of improvement could they re-scope him? How long ago were the previous scopes done and how do they explain the bleeding? This forum is a great place for advice and support, I hope your little boy gets sorted soon.
 
Suzy the scopes were done when he wasnt bleeding (in fact a month after bleeding) and it was in October.
They've never explained the bleeding!
He keeps getting pain in thr roof of his mouth no thrush or anything.
Ive got another baby and im pg too.
 
You are one busy mummy! Keep on at the doctors, you know your little man the best, often in complecated cases there is a lot of trialing new meds and re testing things until the right answers are found. Is he gaining weight? If not maybe push for a rescope with a proper clean out?
 
What centile is he on for both height and weight? Is he dropping centiles or following along the same lines?
 
Right now he doesn't want to get up, hes saying hes tired and has pain in his arm and tummy.
Ive emailed dietitian (more useful than his gastro!) And just waiting for a reply to see what she suggests.
He has been up but only lies down when hes ill, hes got blanket on him. Hes got bo temp or anything to suggest anything else.
AHHH. I hate not knowing how to help. Hes been through so much at such a young age. :(
 
Hes been sick early hours this morning.
It was undigested food from 12hours before he was sick. Exactly how he ate it. Hes still asleep im letting him rest
 
:ghug:March check in time:ghug:

Ok it's not March yet but my heart is already there. Lol

How's everyone's kiddos doing???

Grace is struggling with a virus. She can't have her shots and now she's in real pain.
She's on the verge on serious lung infection but she's fighting it like a trooper. She's been out of school all week and I'm waiting to send her back. Lol
She had a chest X-Ray and hopefully find out today what the results say.

Hugs to everyone.
 
Sorry Grace is struggling. I hope she starts feeling better soon :(

We're doing ok here. Ella seems to be holding her own and eating up a storm. We've only had two flare ups since starting the Sulphasalazine and she's doing much better at taking it. I just need to do better at remembering to give it. Bad Mom! I haven't weighed her lately cause I always seem disappointed, but she seems heavier and some of her clothes aren't fitting as well anymore. I'm praying these are all signs of good things.

She is having more leg pains. This past weekend she whined and whimpered all night. It was of course the night we were away from home and hubby wasn't with us. Didn't make for a happy Mommy the next day being so tired!

Poops are still horrendously smelly and inconsistent in form. Some days are formed, but most are always mushy.

Aside from all that, she amazes me everyday with her memory and how much she knows. Just today I had my own labs done and she pointed at a cabinet and asked if I wanted a sticker. The lab tech was shocked she knew where they were. I was too as she has only been to this lab once, 6 months ago. She just remembers things I wouldn't expect for only being 2.5 years old.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Farmwife, I sent you a pm.
Hope everyone is as well as can be! We are getting ready for yet another snow storm here!
 
Ksh I did get you pm and typed a very intellectual reply but lost the dumb thing.:ymad:

I'll try again when the time presents its self. Grace is still taking most of my time:ybatty:.



What storm? I don't think we're supposed to get it in Michigan? I guess I should check the forecast.:yfaint:
 
Ok, thanks. Hope Grace is hanging in there!

I forget what the name of the storm is...it was supposed to be nothing Friday morning and all of a sudden 6-12 inches of snow which is a lot for our area.
 
I just want to brag a wee bit.
Grace for the last 5 days has been able to swallow small pills.
She's so proud and I'm so happy

I hope all the young ones are doing well.

ksh any news?
 
Hello,
My daughter, Emily (7 yrs old) was diagnosed with Cronh's just this month. It all started out with type A flu on December 21 then snowballed into consistent fevers lasting nearly three months, numerous blood tests, X-rays and CT scans we finally found her illness. My husband and I were shocked. Not knowing much about the disease we are trying to learn as much as we can to determine her treatment options. Trying to understand the disease is one thing, but trying to make an educated decision on treatment options is overwhelming to say the least, as you are all aware of. My husband and I are wavering back and fourth on treatment options, Imuran is one and Remicade is the other. Obliviously, the side effects are scary and this a a very tough decision. I realize we have no other choice and we have to get her into remission to stop further inflammation damage and to get her growing.

I've found the Crohn's Forum to be very informative for data points. Please feel free to give feedback or any helpful info. I wish all your children the best!

-J
 
Hi Emily's mom, sorry to hear about your daughter's dx but glad you found your way here. I'm on the run now but will check back in later. Hugs
 
I'm back, it's so hard at any age to face this disease. :hug:My heart goes out to your whole family. I've been where you are and some days I feel like I'm still there.

How has she been doing in school? Having a plan (504 plan) in place at her school well be a wonderful asset.
 
Welcome Emily's Mom. My Ella was just recently diagnosed with UC as well. It's definitely a lot if information to take in. This group is great for getting a lot of information. I'll pass along the best advice I received, post your story on the main page and you will get tons of feedback from everyone. It was very helpful. Good Luck and I'm sorry about the diagnosis as well.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Hi Susan,
I'm sorry about your little Ella as well. This forum is most helpful. I'm sure we'll chat again soon. I have to go for now, but just wanted to acknowledge your reply. How is your daughter doing?

-j
 
Thanks J,

She's doing ok. Just the occasional mild flare up since she started the meds she's on. (I qualify a flare up as blood in the stool and more than 1 or 2 movements in a day that are loose and with mucous) We have our second appt since she started her meds tomorrow so I am very curious to see what her stats are. Fingers crossed she's
grown and gained!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
So, I guess we should get used to the roller coaster of this disease. Her appt. went well for the most part and the doctor chalked up her few bloody diaper/tummy pain episodes to milk intolerance (even though I only think 1 was because of milk ingestion) and said she had gained about a 1 1/2 lbs in 3 months. Well since her appt, she's in a full on flare. I posted about it in the main forum. But I was just beginning to feel like we were doing ok and bam. :( She has new symptoms this time around as well. Gah!


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Imerald said:
So, I guess we should get used to the roller coaster of this disease. Her appt. went well for the most part and the doctor chalked up her few bloody diaper/tummy pain episodes to milk intolerance (even though I only think 1 was because of milk ingestion) and said she had gained about a 1 1/2 lbs in 3 months. Well since her appt, she's in a full on flare. I posted about it in the main forum. But I was just beginning to feel like we were doing ok and bam. :( She has new symptoms this time around as well. Gah!


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
Click to expand...

I'm so sorry to hear this. Do you have a good allergist? My kids and I have a milk allergy. My two also have other food allergies and our allergist is helpful with deciphering symptoms from allergy to Ibd problems.

I'm glad she put on some weight. My Grace has never been underweight but it's of a short stature. I'm hoping humira and mtx will help her grow a bit.

What are the new symptoms?
 
Imerald,
I'm sorry Ella is having bloody stools and tummy pains. I remember when my daughter was an infant (she'll be 8 yrs next month) her pediatrician thought she had a milk intolerance. We switched her formula to Nutramigen and the doctor said many kids will outgrow this intolerance. When it came it to take Emily off the bottle I introduced milk and she seemed to do fine. So, all these years Emily has had milk, she loves milk. Strange thing is the lead up to her Cronh's diagnosis it seemed like right after her morning milk she had to poop right away. We have now stopped milk. I even tried lactose free milk, but that still made her poop soon after drinking. I now give her Pediasure 1.5 vanilla and she loves those. She loves yogurt and does fine with yogurt.

Maybe an allergist testing for milk allergy would be a good idea, as I'm sure you are already thinking and Framwife suggested. Does Ella take any meds? My daughter started her first drug this weekend, Imuran. Three nights now and she hasn't had any apparent side effects. Yay!

I think IBD is one of those things we learn as we go. I have my days where I feel good and optimistic and then I'll have those days where I panic, worry about the what ifs? My new worry is how do I send her to school on an immune suppressing drug?

I don't have the answers, but this forum is great for learning and getting data points from others. So much info on here.

Good luck,
-J
 
Thanks Girls. Can I just say that I hate this disease? (As do we all, I'm sure.) I'm just so mad that my sweet, fun loving little goofball of a girl has to deal with this. I guess I'm still dealing with really accepting it. I held on to it just being an allergy for so long that I don't think it's really hit me. Was this something I did to her somehow? How could she possibly have this so early on?

Sigh... I'm Sorry. It was a rough night of tummy pain and crying and since her flare has started, I'm not getting much sleep.

No, we've not seen an allergist. Our first GI didn't think it was necessary and the second GI agreed saying it's not anything conclusive they can do and think it would just be more for her to go through procedure wise and we were trying to minimize the amount of unnecessary tests etc. I guess it can't hurt to have a consult with them. They don't have to do skin tests on her do they?

Farmwife, the new symptoms were the vomiting and fever. We've never had a flare that included both. The last time she had vomiting and fever was when she was in the hospital when she was 3 months. She was dehydrated due to vomiting and diarrhea. They had her on rocephin and iv fluids, but were never able to find a cause for the gI issues. They said it was because the antibiotic she was on the 5 days before she was admitted masked it.

I dunno, I still think that could have been her first major flare as she had been having blood in her stools prior to that. But both GI's think it's impossible. I really hate how they just "poo poo" some of the stuff I say. Give me reasons WHY it can't be that? She's had bloody stools since she was 3 weeks old and at no point has there been an obvious change in symptoms other than around 1.5 years when she started talking about her tummy being owie. But whose to say that isn't just because she was finally able to vocalize it?

I'm just so frustrated with being shoved into a cookie cutter when with her being so young I really don't think they have a good place for her to fit. And really, none of our kids should be held to a standard because they are all different regardless.

I'm sorry, this post turned into a vent. I'm not even sure if I answered your questions. And I know you guys are dealing with the same if not worse and the thought of the latter makes me feel guilty for even complaining. :(


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Imerald, I just want to say that, no, this is not something you did to your child. (Although my own mother suggested I may have eaten something I shouldn't have while pregnant, that caused my son's CD!). My son was dx'd at age 8, but our GI nurse said she often sees little ones still in diapers dx'd with the disease. Poor little ones!
 
Thanks. I just feel so many emotions with this and I'm a control freak. So this has me completely on edge. One day at a time right??


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Yes one day at a time, from one control freak mom to another.

Well if your girl is like Grace with each new flare it brought new symptoms until the flare stayed and hasn't left. Of course Grace is on mtx and Humira plus pred which is starting to help. It's been a 5 yrs to get to where we are today.

Hang in there mom.
 
So I held off on the pred as it seemed like she was getting better but the bloody stools picked up again so we filled the script. She had her first dose today. Can her appetite be increased that soon? She hasn't stopped eating all day! Should I just let her eat or will that cause her to have other problems. She's literally eaten 3 times her normal daily amount!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
:hug:Speaking as a mom and not a doc, she might have a hard time if the food is hard to digest or the stomach needs to stretch or.................
You could always contact the GI and or the dietitian if she seems to have a hard timewith food.


How is she doing today?
 
So far so good today. Still eating up a storm and no obvious blood in her poop. I haven't given her the pred yet today. I so dread medicine time. :(


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Yes I remember med time. We were able to get most her meds compounded but it was still horrible tasting.

Grace is still on pred and begs every ten minutes. I joke with people I really do fed her.:lol:
 
I really don't think her meds taste that bad. For a few days she would take them herself, push the stopper and everything to squirt it in. Now if I give it to her, she just spends 30 mins pretending to put it in and saying bleh with her tongue hanging out, over and over. It really is quite comical and cute.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o
 
Hi all - I posted our complete story earlier today, but just wanted to pop in here as well. My 3 1/2 year old daughter Madeleine was diagnosed with Crohn's in December, 2013. Started Imuran in January, 2014, and we have just gotten her up to what her GI thinks will be the right dose - 2.5 mg/kg. We've had lots of ups and downs but for the last month or so she appears to be in remission. REALLY hoping we can keep her here for a while.
 
Hi Goofychicken, love the name, welcome to the forum and this support group.

I just read your other thread. What a journey you guys have been on. It sounds like she's heading in the right direction.

These young kids just amaze me. What they handle and how they handle all this would put most adults to shame.
 
May check-ins

How's everyone doing?

Grace as of today is in a flare and doctors order full EEN for two weeks.
I'm hoping it will bring her flare down.
 
Seeing that there are so many young ones that are being dx or possible dx,
I wanted to send this invite out to any and all parents to please feel free to join in the support group.

My Grace is five now and she's noticing that she's a bit different.
She also is saying, why does she hurt more than her brother. I just breaks my heart.

What words of comfort do you tell your kids?
 
My Ella is still too little to ask questions like that, so I'm not much help. :( It breaks my heart though to even think about it. Ella is just getting to the point where she realizes that were going to have to stick her when we go to the lab and she gets real quiet and whimpery and doesn't want me to put her down. Usually Daddy holds her, but this time she only wanted me and it was so hard. :( After it was done, she kept saying she doesn't like shots at the doctors. I hate that our little babies have to endure so much at such a young age. I'd do anything to take it all away if I could. :heart:
 
My son is 9 now, so can understand a lot of the "ins and outs" of his disease. He doesn't like a lot of info though, just what he needs to know at a given time. In the beginning I remember explaining that everyone has problems, ie. Some kids have problems understanding their schoolwork, behavioural issues, emotional problems, etc. It's sad and upsetting, but problems are a fact of life, and we just deal with it as best we can with God's help, and the help of the good people He puts in our lives. That seems to help my son, but he is a very logical thinker. If it makes sense, he's usually pretty accepting. Other than that, we just tell him how much we love him and will go through all of this with him. I remember telling him once that I would have Crohn's for him if I could. He said he wished I could have Crohn's for him too! Dry sense of humour...
 
Farmwife said:
Seeing that there are so many young ones that are being dx or possible dx,
I wanted to send this invite out to any and all parents to please feel free to join in the support group.

My Grace is five now and she's noticing that she's a bit different.
She also is saying, why does she hurt more than her brother. I just breaks my heart.

What words of comfort do you tell your kids?
Click to expand...

My heart really goes out to Grace and to you! My daughter does ask why her little brother is so lucky that he doesn't get sick or have to have shots. It's hard sometimes to rationalize with a young child when as an adult we don't even know why? After her Remicade infusion yesterday the GI wants to have a colonoscopy at her next scheduled infusion. Emily does NOT like the clean out prep or not being able to eat. She asked, why her brother is so healthy and she isn't? I just told her we don't know what the future holds for any of us. One day we can be heathy and the next day sick. I would say that I'm nurturing to my daughter, but in an honest way. My husband and I always tell her how proud we are of her for being brave. I don't know what more to say. I also explain everything to her so she understands about the disease she lives with.

Best wishes to you and Grace! :ghug:
 
Hannah was diagnosed with Crohn's disease last week and immediately begun exclusive Enteral Nutrition. She is 3 years old.

She is one of 7 siblings, so there is no hiding the food or treats. It really "isn't fair". When she tells me that, I just agree with her.

Even though she is young, I tried to explain the disease and current treatment simply. I try to convince her that the sacrifices she has to make now will help her to feel better. But for comfort I think the best thing for her is when we tickle her and make her laugh, or cuddle up with a book, or play with the neighbour's dog. Then she forgets her troubles for a minute, and she seems really happy again.

Like Emily's Mom, we also tell our daughter how brave she is.
 
Oh Hannah sounds like a real trooper. Bless her heart.

One thing we do for Grace is let her watch her tablet at the dinner table.
I know I'm a bad mommy but she is at least sitting with her family and if anything my seven year old boy gets jealous that he can't watch tv. Lol
She's hooked on cake decorating so she watches that all the time.:hug:

Hugs
 
That is a good idea. I know it would cause a war with the other kids in our house, but maybe I'll try it too, because Hannah is upstairs on my bed with a little DVD player alone during the supper hour. She doesn't mind it, but it could get a little abnormal after awhile. We all always eat together - so it would be good to keep it that way.

Does Grace complain about the smells or sight of the food at the table? I mentioned the smell of food today and Hannah said, "It's ok! I like to smell the food!" Next best thing, I guess.

She is drinking the formula for now. No tube yet.
 
YA maybe with that many kids it would be hard.
We also let Grace color while we eat also.
I bought her a special princess coloring book that she could only color when we eat.
That way she looked forward to coming to the table.

Maybe you said it but is she allowed any sugar type candy?
Grace can so we save those for dessert time.

As to the smells...YES she seems to have a heighten sence of smell. She begs to just smell it and she'll be fine. The flip side is when something smells bad she gags and runs.
 
Some no foods kids have you make a plate just to smell.
DS sat at the dinner table for the first ten minutes to get the dinner conversation then he could get up and play - typically though he just sat and drank his shakes while we ate .
Snow cones with pure sugar /food coloring is fun.
She needs to keep up her oral skils so either crushed ice , frozen boost ( as a treat not for nutrition.) or a chew stick ( they sell them for sensory kids).

No foods birthday cake (
Couple of boxes that can be stacked
Decorate with sticky foam sheets - even trace characters from coloring books -glittery boarder stickers just like a real cake - fill with tiny wrapped trinkets.

Homemade cotton candy - pure sugar plus machine cheap at target.
The cotton candy can be molded into a cake or cupcakes..
Silicon cupcake holders with feet can also hold the cupcakes
Add toothpick decorations and your done.
Have parties themed around activities vs food
Treasure hunts
Princess parties etc...
This comes in handy for holidays / gathering
Big food gatherings bring a new toy/craft to do during dinner.
Pure sugar with water can be combined and poured in shaped silicon molds
For sugar cookies .
Good luck

Only let her do what you would normally if she wasn't sick
Otherwise the siblings will resent her - not a good thing
 
Hi im Leslie. I have a now 4 month old baby boy named Hezekiah. He has had Crohn's since birth but was just recently diagnosed. Im new to this and would love any advice and help i can get.
 
When I was on EEN for four months I loved to smell everyone's plate of food even though I was the one who had cooked the food! :)

It got to the point where one of the family would just offer up their plate for me to smell before they started eating. It really did help me feel like I was included in the meal.

That Christmas (three weeks in to EEN) my daughter created a full Christmas dinner out of tissue and construction paper, including paper tissue 'wine' in a glass. She hid it all under an inverted stainless steel bowl. I felt like royalty. What I remember from that Christmas is how terrific my family was in making me feel included and in helping me out with the Christmas day responsibilities--not that I couldn't eat the food.
 
Hello hezekiahsmom,
What a wee one he is.:hug: I'm sorry to hear that he has this but happy you found us.
My Grace has also suffered since birth but wasn't dx until three.

If I may ask a few questions,
Where is his disease located?
What were/are his symptoms?
What meds is he on?

My Grace after dx started full EEN via n-g tube but still needed prednisone for many months. Then because of her EGID's we decided to get her fitted with a
g-tube. She did five months of ldn but it wasn't enough.
She then was dx with juvenile arthritis and started that day mtx but it still wasn't enough for any disease and we added humira.
Humira is so far the best med. She still not a hundred percent but I pray she will be one day.:)

My best advice is.........
Make sure he has a good pediatric GI team that you can trust.
Study, study, study about your child's disease. Knowledge is power.
This is the hardest one for me..........when your child reaches remission try to relax and enjoy the good times. :kiss:



Please ask as many questions as you like.
 
So far we know in his intestines, small duodenum?, and colon. He has ulcerations on his colon. His symptoms were from the beginning puking, pure water diarrhea, losing weight, tired all the time, refused to eat. He has been through so much at this small age. I honestly do not like the gi doctors he has and wanted to research a few in Milwaukee, Wi. His current ones are in Marshfield, Wi. They did two biopsies to finally figure this out. The youngest they have seen a child with this is 18 months. Right now he is on steroids and medicine for GERD. Also metabolic acidosis and renal tubular acidosis. He is also on lovenox shots because he was getting blood clots in his central lines. He is not home yet but we are hoping he will be next week! He has been there since about 2 weeks old and he is 4 months now. I do not know anything about this disease or where to even look. I am very scared for him and would love any advice and sites and info i can get. He will be starting baby food soon and i am not quite sure what he can and cannot have. The GI doctors have really explained anything to us and this is why im looking for one elsewhere.
 

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