# Parents of Young Ones Support Group



## Farmwife

_ *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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## Farmwife

Hi and welcome.:soledance:
I'm Farmwife and the fairy in my avatar is my 4 year olds Grace.:rosette1:

:rosette2lease 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.
*


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## ksh

Just a quick hello!  Will be back to introduce myself.


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## Suzysu

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


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## Farmwife

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


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## Suzysu

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


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## ksh

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.


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## Farmwife

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?


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## ksh

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?)


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## Farmwife

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?)


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.


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## ksh

MLP?  I need a tutorial on acronyms!  I have been able to figure out a bunch, but I am still clueless about some :/


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## Farmwife

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.


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## my little penguin

http://community.kidswithfoodallergies.org/forum/eosinophilic_disorders

Links to kids with food allergies EoE section.

It does require a password etc...

But free


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## Suzysu

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


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## Malgrave

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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## Farmwife

Malgrave I hoped for better news. I was just thinking about you and you little man. Update when you can.


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## polly13

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


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## Farmwife

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?


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## Suzysu

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?


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## polly13

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 .


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## Farmwife

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:


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## Suzysu

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!


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## Farmwife

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.


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## Suzysu

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!!!!


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## Farmwife

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.


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## Suzysu

That's a good idea, and it sounds. Like your teacher is on board too xx


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## Imerald

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


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## Suzysu

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?


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## Farmwife

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


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## Imerald

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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## Farmwife

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?


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## Imerald

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


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## Imerald

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


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## Farmwife

Do they still feel that the blood is unrelated?

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.


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## DanceMom

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.


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## Imerald

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


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## Farmwife

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.


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## Farmwife

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.


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## Farmwife

Also at the top of the parents forum is a sticky called 
TIPS AND TRICKS 101. In that tread is some wonderful advice from seasoned (some more than others) about dealing with Ibd itself, doctor, lab reports and so on.
http://www.crohnsforum.com/showthread.php?t=58353


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## Suzysu

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...........


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## Farmwife

oh my, keep the dog outside. . :ylol:


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## Imerald

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


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## Suzysu

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.


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## Imerald

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.


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## Imerald

Suzysu, How's the dog??


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## Suzysu

Ha! Ha! - She seems to be immune to the effects of Movicol! (thank heavens!!)

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).


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## mummy2gastricboy

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.


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## Farmwife

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.


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## mummy2gastricboy

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


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## Suzysu

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.


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## mummy2gastricboy

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.


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## Suzysu

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?


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## mummy2gastricboy

He is stuck at 13kg and he puts om very little weight but loses it extremely quick


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## Suzysu

What centile is he on for both height and weight? Is he dropping centiles or following along the same lines?


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## mummy2gastricboy

Hes come down from 75th to just under 25th he was following 25th for a while but  is slowly starting to drop again


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## mummy2gastricboy

For height I cant remember I think he's in between 25tj amd 50th


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## mummy2gastricboy

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.


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## mummy2gastricboy

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


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## Farmwife

: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.


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## Imerald

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


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## ksh

Farmwife, I sent you a pm.
Hope everyone is as well as can be!  We are getting ready for yet another snow storm here!


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## Farmwife

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:


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## ksh

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.


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## Farmwife

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?


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## Emily's mom

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


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## Farmwife

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


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## Farmwife

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.


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## Imerald

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


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## Emily's mom

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


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## Imerald

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


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## Emily's mom

Susan, 
Best wishes for Ella today and you, too! I understand your fears, worries and your hopes! Positive thoughts coming your way!

-J


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## Imerald

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


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## Farmwife

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


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?


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## Emily's mom

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


----------



## Imerald

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


----------



## CrohnsKidMom

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!


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## Imerald

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


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## Farmwife

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.


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## Imerald

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


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## Farmwife

: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?


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## Imerald

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


----------



## Farmwife

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:


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## Imerald

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


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## Goofychicken

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.


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## Imerald

That's awesome!  I hope it continues. <3


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


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## Farmwife

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.


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## Farmwife

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.


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## Farmwife

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?*


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## Imerald

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:


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## CrohnsKidMom

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...


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## Emily's mom

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?*


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:


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## Pilgrim

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.


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## Farmwife

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


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## Pilgrim

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.


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## Farmwife

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.


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## my little penguin

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


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## hezekiahsmom

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.


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## happy

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.


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## Farmwife

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.


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## hezekiahsmom

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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## Farmwife

:rosette2:Any Update and New Parents with young ones?:rosette2:


Update Time for grace,
We had to switch my dd to Remicade. The Humira still wasn't enough to get her in remission.

She has had 1 round of Remicade and I've seen some positives already.:dance: 
I pray this is a good sign of things to come.:hug:

She's also is back onto food (minus milk) and doing wonderfully.:dusty:
I worked with her Allergist on how to best reintroduce the food groups.
We will find out soon if she can gain weight without using her formula.:kiss:


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## my little penguin

That's great FW .
DS can gain without formula but all the studies show biologics tend to work longer if the kiddo has at least some formula going in so we kept him on it until he is done grow just at a lower amount.


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## Farmwife

Yes, she will stay on 2 boxes a day but we wanted to see if she could maintain/gain without formula. 

MLP,
do you know (have a study) how much EN is suggested daily to help????


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## hezekiahsmom

Hi mommies and daddies! Just thought i would update you all on my son Hezekiah. He is now almost 6 months and doing well. He has been out of the hospital since August 4th!! Very exciting He was taken off of his lovenox shots today for his blood clots in his legs. He was on them for 3 months. He now is only on prednisone, omeperazole, and gas drops daily. Since he is turning 6 months i wanted to ask his doctor about feeding him solids. When i asked last month when they thought he could start they said they do not know and do not think its a great idea right now. So im calling tomorrow to ask once again. What do you all think is best to feed him? What should i stay away from that triggers Crohn's more? I know i need to do tons of research on foods and what to keep him away from.


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## my little penguin

Honestly solids at his age ( before age 1 ) are just for practice not nutrition.
My kiddo didn't start solids till almost 8 months due to tummy issues which we didn't know he had crohn's till age 7. I would ask the Gi first and try to keep things stable.


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## my little penguin

> The value of enteral nutrition in improving the durability of response to biological agents has also been examined. A prospective clinical trial comparing the efficacy of maintaining remission with infliximab alone versus enteral nutrition with infliximab did not find any additional benefit from supplementary enteral feeding. Yamamoto et al. [85] prospectively recruited 56 patients who had received clinical remission with infliximab into two groups for maintenance therapy. One group comprising 32 patients received enteral nutrition at night in addition to 5 mg/kg infliximab every 8 weeks. The other group received only 5 mg/kg infliximab every eight weeks. There were no significant differences in the maintenance of clinical remission between the two groups.
> 
> However, a subsequent retrospective multicentre study also conducted in Japan [88] appeared to favour the use of elemental nutrition with infliximab in patients for maintenance of remission after induction with infliximab. Maintenance of remission at one year was examined in adult patients from seven centres who had gone into remission following infliximab therapy and were on infliximab maintenance therapy. They found a significantly higher remission rate in the group receiving infliximab with enteral nutrition as compared to the group of patients that did not receive enteral nutrition.
> 
> There are no paediatric studies on this aspect of enteral nutrition. Further studies are required to clarify the role of enteral nutrition in conjunction with other agents.


http://www.hindawi.com/journals/grp/2013/482108/

Just for you farmwife


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## Pilgrim

If you could possibly keep him on formula it might be keep the disease at bay for awhile. 

Poor Mom! I don't believe you had to go so many weeks with your guy in hospital. That is tough stuff. I bet you are loving having him at home during this gorgeous time of the year.


----------



## Farmwife

hezekiahsmom said:


> Hi mommies and daddies! Just thought i would update you all on my son Hezekiah. He is now almost 6 months and doing well. He has been out of the hospital since August 4th!! Very exciting He was taken off of his lovenox shots today for his blood clots in his legs. He was on them for 3 months. He now is only on prednisone, omeperazole, and gas drops daily. Since he is turning 6 months i wanted to ask his doctor about feeding him solids. When i asked last month when they thought he could start they said they do not know and do not think its a great idea right now. So im calling tomorrow to ask once again. What do you all think is best to feed him? What should i stay away from that triggers Crohn's more? I know i need to do tons of research on foods and what to keep him away from.


:ybiggrin: I'm so happy he's doing better. :dusty:

As for the food I'm not sure at his age and IBD what foods would be the best.
I agree that the formula (EEN) would help keep is inflammation down and maybe get him off the pred sooner than later. This is done with older kids and adults now.


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## hezekiahsmom

my little penguin said:


> Honestly solids at his age ( before age 1 ) are just for practice not nutrition.
> My kiddo didn't start solids till almost 8 months due to tummy issues which we didn't know he had crohn's till age 7. I would ask the Gi first and try to keep things stable.


Okay thank you. I called today and they said he can try some solids that are in the Neocate family. I guess they are pretty expensive and he said he would send me a few samples to try and see where it goes from there:


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## hezekiahsmom

Pilgrim said:


> If you could possibly keep him on formula it might be keep the disease at bay for awhile.
> 
> Poor Mom! I don't believe you had to go so many weeks with your guy in hospital. That is tough stuff. I bet you are loving having him at home during this gorgeous time of the year.


Oh yes we are loving it! We didn't get much of a summer from being in the hospital but he has gotten to enjoy being outside. He is so much happier at home and able to do things. He can roll and almost sit by himself. So he isn't too far behind.


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## hezekiahsmom

Farmwife said:


> :ybiggrin: I'm so happy he's doing better. :dusty:
> 
> As for the food I'm not sure at his age and IBD what foods would be the best.
> I agree that the formula (EEN) would help keep is inflammation down and maybe get him off the pred sooner than later. This is done with older kids and adults now.


The only issue is that his formula is $52-57 a can and he uses a can a day. I am able to get wic but they only give 10 cans a month. So we are about 20 short a month. Which is VERY hard on us financially. Our insurance hasn't responded yet to cover his formula and we sent the request 2 months ago. My doctor is trying to get the Children's Miracle Network to help.


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## Farmwife

Understand completely!
have you heard of the Oley foundation?
http://www.oley.org/join.html
Its a good website that offers advice and help to families like ours.

have you tried to order straight from the company? 
You can go on their web page.
They usual give a discount for ordering more.


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## my little penguin

Also if he has crohn's most states will qualify a child for medical assistance regardless of income with a crohn's dx. This can act as a secondary insurance .
Ask that the doc submit the prescription order through the durable medical equipment company covered through your insurance.
Most will not cover prescription formula ( neocate) but will cover infusion supplies ( aka formula ) at x% .
Ours is cover this way through the Dme .

Given his age wic should cover it all -not sure why they aren't ....,
Maybe call your case worker 
Good luck


----------



## hezekiahsmom

my little penguin said:


> Also if he has crohn's most states will qualify a child for medical assistance regardless of income with a crohn's dx. This can act as a secondary insurance .
> Ask that the doc submit the prescription order through the durable medical equipment company covered through your insurance.
> Most will not cover prescription formula ( neocate) but will cover infusion supplies ( aka formula ) at x% .
> Ours is cover this way through the Dme .
> 
> Given his age wic should cover it all -not sure why they aren't ....,
> Maybe call your case worker
> Good luck


His GI doctor sent a request and letters and all of his medical issues and we havent heard back from our insurance (BCBS) in 2 months and I called last week and asked if we can submit a request to his State medical insurance and the nurse said no they do not cover it so there's no point. WIC unfortunately will only cover 10 cans of formula a month and he goes through almost 30. Next month they only start giving us 8 cans because he is supposed to start eating food but obviously will only be on the Neocate food the doctor gave us. I don't know what to do. We have had such bad times with all of the doctor's while he was in the hospital and I want to switch him to someone closer and better but i'm not sure how to do that and what do I do in the meantime while he's tappering off his steroids and they want another scope done. I feel like if i switch he will end up back in the hospital


----------



## hezekiahsmom

Well we go in for another colonoscopy and endoscopy with biopsies Monday Hezekiah is almost tapered off of his Prednisone. This will be his third one. It scares me knowing the past two times he has had breathing complications while put to sleep for these. The first time they had to end early from it. We found out today he is being studied by the University of Wisconsin. He has had a cough for almost two months now and they have cancelled it once already. Today they decided to go ahead with it on Monday still because he needs it done. I am really worried about whats going to happen next after he is tapered off completely. I do not want him to have to end back up in the hospital. Prayers are needed please. I can update you all Monday afterwards if you would like or you can follow his page on Facebook it is called Hezekiah's Gift.


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## Pilgrim

Prayers for baby Hezekiah and for the medical team in place on Monday and for a very good scope result as well.


----------



## Farmwife

I'll be praying for your dear boy.
My Grace has asthma and everyone is always very careful about sedation.
I pray it goes smoothly.

How is his IBD symptoms doing?


----------



## hezekiahsmom

Great! He honestly has been very good being on the steroid. In the beginning when we were tapering he would have a few bad days in a row for a good month and now he is totally fine. He hasn't puked or had watery bm's for quite some time. The only horrible thing I deal with daily is his one bm he has a day and it is horrible. I honestly feel like a lab rat whenever we go in because they just keep asking me question after question and don't really do much other than that and I mean all questions lol. It's okay though as long as everything is going well and have been with their help. He is now up to a little over 18lbs and they are happy he is gaining weight good.


----------



## Pilgrim

What happens with his bm? I only ask because I remember my daughter as a baby, and she would have a bm and honestly I couldn't believe the smell. None of the other kids were like that. At the time I thought it was just a fluke. But now I am sure it was Crohn's creeping in.

Also I only noticed these things after she had a Rotovirus vaccination as a baby. I don't really know if there is a connection but I always wondered.

It's wonderful he is gaining weight.


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## hezekiahsmom

His bm's are black and range from tary to watery to in between that and he only has one a day and if he doesn't he's gasy from the prednisone so we have to give him gas drops and if that doesn't work we have a few more things we try from the doctor. The smell is seriously horrible. It honestly has made me puke. I used to have to cover my face and some days still have to but not as much anymore. Nobody around will change a poopy diaper of his other than myself. His GI tested it to see if it was Melena and he never told me but looking at his "current problems list" it mentions Melena.


----------



## Farmwife

Summer updates

I see we have a few new parents of young ones on here. (7'ish and under). :hug:
Please feel free to introduce yourself and child. 
We're here to help.

My Grace is chugging along. She's still not in total remission but it's better all the way around.
We're still dealing with her fatigue issues with her. 
Which makes it interesting when she's ornery ( shocking I know).
I never know which to blame it on.


----------



## Pilgrim

That's funny FW. 

I know when H gets on the wrong side of exhausted her voice gets this _pitch_ to it. It's really edgy, but she still tries to be cheerful. If she starts to scream at a sibling I know she's feeling awful. Best indicator. 

I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.


----------



## Farmwife

Pilgrim said:


> I thought we were in remission but not so sure anymore. Trying to get the most out of summer before Crohn's comes to roost again.



I don't think we ever get rid of that feeling about crohn's coming to roost.

now instead of thinking about the whole summer I think about month by month 
and even week by week.
Still I'm thankful for even day by day that she feels well and happy!:hug:


----------



## LWade10

Hello,
I am new to the group.  I am the mom of a very spirited 6 year old who has lost her spark.  She has been having constipation, headaches, ear aches, belly pain, joint pain for months along with a constant low grade fever for 3 months (every day).  We have been to half a dozen specialists, and they did more blood work and she tested positive for Crohn's disease.  We are now waiting to see a GI specialist to confirm the diagnosis.  There is a small chance it was a false positive but the more I am reading about the disease and her other lab work it sure is looking like she has it.  I am lost, scared, mad, but also relieved we might finally have an answer.  I am so overwhelmed with information from the internet and was looking to find other parents who have been in my shoes and might be able to lend some advice/support.


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## Farmwife

Welcome and lots and lots of hugs.

It's heart breaking when they lose the spark.
Yes, a lot of those symptoms sound familiar. 
A lot of young ones tend towards constipation instead of the diarrhea.

I would assume the GI is going to suggest doing scopes as that's the only way to get a proper diagnosis.

Have you been able to keep a symptom journal and or food journal?
I know when we started with our first GI he asked us to do both.
They were helpful to see if there was a trend we weren't seeing.

Also with the joint pain seeing a pediatric Rheumatologist might be helpful.
My dearest and spirited 6 year old also has juvenile arthritis.

How is she doing on weight and growth? 
Some kids are delayed in these areas but mine never was.


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## ic7997

Hello, I do not know where to start. My son is 18 months old and is undiagnosed. started with mucousy diarrhea last october then bloody loose stools and bloating, tummy pains, the tummy pains went away but he still has bloody stools. He normally passes stool once a days, and its either formed or mushy but not runny. He had a upper and lower GI last week, and they had to stop since he had inflammation in his transverse colon and it began to bleed a bit. hes had two calprotectin tests and both 1600s. he is scheduled to have an MRE next week to see how inflammed the colon is where doctor couldnt see. He has a huge appetite, full of energy and where he should be in growth. But everything is pointing to crohns. My thing is I prefer not to "drug" him and look at a more non-conventional approach, like diet, holistic measures. does anyone have any advice. there is not much study of effects of drugs in toddlers, especially long term. of course doctors never agree with not giving drugs since thats the way they are taught. I actually eliminated all dairy since a month ago and hes seems better but the bloody stools are still there, not alot but specks. and hes also anemic, hemoglobin is at 9.8. I would appreciate any info since Ive never even heard of this disease and my other two children have been always healthy. Thank you


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## Farmwife

Hi and welcome. Sorry you had to find your way here.
My girl was dx at 3 but suffered long before that.
We tried holistic approach and paid a lot for it but it didn't help. Tried diet but to no avail for us.

Have you got the biopsy results back yet? They should hopefully be able to pin point towards a dx.

The thing with ibd in young ones is they automatically get put in the serve category.
We parents might hate it but the chances of problems ( surgeries, growth...) are a lot higher.
These drugs have given my daughter a chance at a childhood not filled with pain and problems.
But still each parent has to do what's best for their kiddo.

I'll tag on a few people that can help

Optimistic , they do the diet approach.
Crohnsinct, is our diet guru
Mlp, is the resident brain.
Maya142 knows more then me.
pilgrim has a young one also

Please ask as many questions as you like. We're all here for you and each other!


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## ic7997

thank you, the biopsys they collected were not useful/did not show anything but then again, The doctor stopped where the inflammation/bleeding started...so thats the area that would of probably told us better results. 

the doctor told me last week to go ahead and start him on "pentasa" but we havent. Ive read so many side effect so Im so scared to have my baby be a "guinea pig". What was the first drug your daughter took? Just kills me to think he will have to take "pills" forever...Ive been taking this very hard, even though its not "official" yet, just what Ive seen/heard so far. 

I appreciate the reply and the tags....


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## Maya142

Hi and welcome! I have a much older daughter, diagnosed at 16, but I can empathize. When my girls were put on biologics, I agonized and worried for ages about the side effects and risks. At some point, the disease became scarier than the medications, and my girls were so sick that we were just praying the meds would work. They did and I got my happy kids back.

My older daughter (who has Ankylosing Spondylitis) went from being in a wheelchair to a happy normal teenager. She played soccer and went to school and is in now college and is doing great!

My younger one (who has AS and Crohn's) has had a harder time and is in a work in progress. She's much better than she was though and I don't even like to think where she'd be without biologics. She had bloody stools and diarrhea too but is now in remission. Within 8 months, her scopes looked beautiful - all the ulcers in her colon were completely gone!

This is a good presentation about the risks and benefits of various medications for IBD:
http://programs.rmei.com/CCFA139VL/

There are a couple parents on here whose kids are able to control their diseases with ONLY diet, but it is pretty rare. Especially in very young kids who have "Very Early Onset IBD" - diagnosed under age 5 - which tends to be very aggressive and hard to control anyway.

I will tag Optimistic since her son has been able to control his Crohn's with diet.

Pentasa is a very mild medication and is not usually used for Crohn's by itself. Some GI's say it's like taking aspirin for a brain tumor - doesn't do a whole lot.


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## ic7997

Thank you Maya142 for that Link, I started watching it but I will watch it all later with my husband, as he too is worried. 

I am just confused if I should wait to start pentasa since my baby is acting normal, eating alot, lots of energy, and does not seem to be in pain. Only symptom that is still not gone is the obvious inflammation the doctor saw in the colonoscopy last week and blood in stool (visual and occult). 

Doctor also said I could incorporate some antibiotic called metronidazole? So I feel little by little this list of Rx's is growing. 

Im glad your daughter grew up to be doing good. That is another worry I have, I wanted my son to play sports, just like my 10 yr old daughter plays soccer but I feel so sad to think this disease is going to prevent him from being "normal". 

As you can tell, ive been somewhat depressed over this.


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## Optimistic

Hi there. Welcome. I am so sorry to hear about your baby. I know your heart is breaking. 

My son has been treated with Specific Carbohydrate  Diet and about 30% of calories from formula (called EN) for about 1.5 years. He became sick very suddenly. We hoped it was an infection but after two weeks of being violently ill and losing 20 pounds, it was clear this was something more.  Because his case was not exactly typical, originally drs suspected he could have Auto Immune Enteropathy which is very rare for a teen. After more testing including genetics, Crohn's is the most likely culprit here (although the Children's Hospital in Cincinnati still won't say that definitively. Boston is sure so there you have it). 

I wont bore you with the whole story but I'm not really sure what put him into remission. IV and oral steroids were magic for him. He went from not able to walk to the bathroom to shooting baskets in a few days. When he tried to wean off steroids the symptoms started to come back so he used EEN first and the Specific Carbohyrdate Diet/EN combo to try to ease his transition off. 

I get the concern about meds. I had them too. I spent hours every  night on internet reading studies, and looking for other options that werent written by a kook. But when i saw him go from ICU to doing great to slipping backwards, there was no way I was going to let him go back to that ugly place.  None. We made the decision to start Remicade and then we had a surprise. During test to start Remicade his labs were good, his FCP normal, and he had no symptoms.  Drs wanted to wait a few months so we kept up the SCD with about 30% of calories from different formulas.  A few months after that a scope was clean and biopsies showed microscopic inflammation in just a few areas.  We stayed the course until the next scope showed all good.  I hate to type that in case I am jinxing him! He is monitored with labs, fcp, scopes, etc. 

I really don't know how common it is for the steroid  then EEN  then SCD with EN approach to work this well.  The drs in our practice do recommend it to patients and are in midst of some studies that are showing some good results with a number of patients. They also have a massive Remicade infusion center.  When he goes in for checkups it is common for another dr to come in and say "oh hi, just wanted to see him for myself" and "can't believe you went from where you were to here."  Not everyone on this forum is a fan of diet and each time I post this i get some replies and messages telling me it diets don't work. 

You having a baby adds so much more complexity. I would get  second and third opinion, ASAP, with people who have experience with toddlers and IBD. Boston's Children's will do a review remotely. Go to their website and get that started. 

I'm happy to answer any questions. Please keep us updated. We are pulling for him and supporting you. I know how hard the first few months are. It gets better. I promise.

EDIT: He will be normal. I think many of the people who are doing well with Crohn's aren't on this forum bc they are out living their lives. They arent thinkng about it.  My son plays sports. I'm off to pick him up now!


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