2 year old just diagnosed :(

[mum a]

just want some sympathy and support really.:ghug:
i have an older son too with bowel trouble but not crohns so we have done some of this journey before, eg testing and treatment but differently.
i'm struggling to get around the finality of the diagnosis and cross as it was such a battle to get anywhere his only symptom really has been the massive (to me) bleeding with his poo, he is otherwise tall good weight and lots of trouble (full of energy)! :eek2: maybe because we caught it early.
struggling to explain to him that on monday we start elemental feeds only (his language is not great) he loves to eat looking for tips on what else he can chew on ice? sugar? etc clever tricks you have learnt would be great!
anyone else got a child so young? feels like a long time to live with crohns basically his whole life and therefore lots of time for repeated flare ups. we did an elemental diet unsuccessfully (on drs advice) for my other son for different reasons so i'm bracing myself as it effected the whole family in its change of lifestyle

 

[Honey]

Hi there,
so sorry to hear your young baby son has been diagnosed with Crohns. I am sure your experience will help you cope, leaving out foods that aggravate it. I did that for years with occasional bad spells of Dia, and had a busy life, not knowing it was Crohns- no medication!!!! I was not diagnosed until three years ago. I tried Yoghurts but found I was doubled up in pain!! We are all individuals , what treatment and food suits me may not suit you!! I hope your son's condition settles down soon when the right treatment is found. It is not easy, a rotten illness!!!!!! Let me know how things are with you. Best wishes.

 

[Dexky]

Hi mum a! Sorry you had to find your way here but you will definitely find a great deal of sympathy and support from like minded people. I hope things settle for him soon. My son was 10 when dxed and we've no experience with EN but there are others here with children that young and a lot of experience with NG tubes etc.. Best of luck!

 

[Niks]

Hi there

So sorry to hear that you've got here because of your little one. :ghug::ghug::ghug:

My daughter is much older, but there are lots of parents on here with small children that have done EN.

You have come to the right place for advice and support.

Paging Farmwife, My Little Penguin

Good luck xxxx

 

[Amy2]

When you say, unsuccessfully, do you mean it didn't work or your child couldn't get it down?

If I had to do this with a toddler, I would eat when they napped and keep all food out of sight. I'd also act out a little story, where some cute little stuffed animal had to eat weird food for a while and was sad, but then got to have their normal food again, at the end.

 

[Johnnysmom]

Sorry to hear you and your little one are facing all of this mum!:ghug:

When my son was diagnosed at 11 years old we were not given the option of EN. He took prednisone instead. I am not sure my son would have tolerated EN very well either. But, these kids are amazingly adaptive when they need to be! He might surprise you and handle it like a trooper. If not, I would not feel bad about talking to your Dr. about prednisone. It has its own set of issues but might be worth a conversation. We like to have a back up plan if whatever we currently are doing just doesn't work out.

Praying things go well for your little guy and he is in remission soon. Let us know how he is getting along. (((((Hugs))))

 

[CrohnsKidMom]

Welcome Mum a, so sorry about your little one's diagnosis. My 8 yr old son was dx'd in March this yr. We were given the option of EEN/NG tube feeding for 3 mths or Prednisone for 3 mths, while a maintenance med kicked in. The GI highly recommended EEN as remission can be achieved quicker with, obviously, no risk of drug side affects. Our GI advised absolutely no solid food could be administered with EEN for it to be successful. Had my son been a toddler, or quite a bit older, I think we may have gone this route. We ended up doing Prednisone however, as we weren't sure we were up emotionally to the EEN/NG challenge. There are a number on this forum who have had good success with EEN though. Once treatment begins for your little guy he will be feeling so much better, and so will the rest of you. Take care!

 

[Tesscorm]

I'm so sorry you're having to deal with this with such a young child.

My son, much older at 16, did exclusive EN for six weeks. I don't have much advice for someone as young as your son but, distraction was key!!

As far as what else he was allowed, my son was allowed most clear fluids - gatorade, clear fruit drinks (no fibre), clear pop like ginger ale (no coke, pepsi), freezies or popsicles (no chocolate), jello, and broth. Broth was what helped my son the most! It was warm and not sweet, it was something that resembled a meal.

Good luck!! :ghug:

 

[mum a]

thanks everyone for your replies, i was touched. still feeling a bit teary its like a bereavement a bit in that it keeps hitting me great ideas about the toy animal. i might get one rigged up with a tube later, i know i have a story about ruby the rabbit around somewhere from my other son having an ng. not given prednisone option

 

[Jmrogers4]

Welcome mum a,
Sorry to hear about your son my son was 10 at diagnoses. There are a few with young children EthanClark (paging) I know they have done EEN. My son was older and did partial EN so he was allowed to have up to 20% of his nutrition from food.
It is definitely a bereavement and we have a whole thread that talks about the grieving process http://www.crohnsforum.com/showthread.php?t=22520
Hope he finds relief soon

 

[polly13]

Hi mum a my daughter Lucy was diagnosed when she was two - she is almost 5 now. We have never done een so I have no advice there. For us having our baby diagnosed with crohns is without doubt the worse thing that has ever happened to us, we were absolutely devasted for her and our hearts broke every time she cried in pain, but I promise you it gets easier, let yourself cry, let yourself grieve and don't be afraid to talk about how you feel. You will learn to accept it and you will become the best advocate for your child. On a practical level get to know your GI and your GI nurse as they will become like part of your family over the next couple of years. Lucy is doing well at the moment and for us that's the best news in the world. Looking forward from age two is difficult but for us we have learned to cope with the unpredictability of crohns and really make the most of the times when she is well. I wish you the best

 

[my little penguin]

hello-
here is a group that does EEN with toddlers for food allergy and EGID reason but a lot of toddler no food experience and ng tube exp for you.

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

It does require a log in but free.

For no foods
shaved ice ( think snow cone maker) - buy a cheap one
put in a bowl and sprinkle with sugar ( ask your gi about the sugar) - it was ok for ds

get a cheap cotton candy maker

add pure cane sugar or dum dum lollipops( different flavors)- again ask your GI

http://www.dumdumpops.com

you can make a small bit of cotton candy which can be put in these http://www.amazon.com/Wilton-Silly-Silicone-Baking-Count/dp/B000NBQFKU

these help when out at a party and others are eating


you can get chew sticks to keep up oral skills
http://www.nationalautismresources.com/oral-motor.html


there is an EoE book which you could modify to read to your child on tummy issues
http://apfed.org/drupal/drupal/node/164
http://apfed.org/drupal/drupal/taxonomy/term/2

lets see what else-
birthdays can be food free
lots of food free cake ideas here

http://community.kidswithfoodallergies.org/topic/show-us-your-non-edible-cakes

we put foam on a box (similar to icing in tiers)
then wrapped tons of tiny cheap presents in each box.


you can also make pure sugar "cookies" of all shapes with silicon candy mold
or a french silicon baking mat.

here is that recipe.
under the just sugar shapes
http://www.kidswithfoodallergies.org/free_food_allergy_recipes.html

good luck

 

[farmerswifey]

I'm sorry to read about your little one, sending hugs your way. This is a great forum, lots of support and understanding, keep posting xxxxxxxxxxxxx

 

[Farmwife]

Hi mum a,
So sorry you had to find your way here.:hug: It's so hard at any age but I often think it's harder for us because our kids are younger and don't understand why all the pain.
My Grace is 4 now but was dx at 3 but has suffered since 3 months old.

My Grace also does EEN. It's been a life saver for us. She'll be doing her for years and she also has a g-tube. We opted for that because the n-g tube was hurting/damaging her sinuses. We love the g-tube.

Take your time to let it sink in. As unthinkable as it is now you will adjust and your child will thrive despite this illness.

HUGS

 

[EthanClark]

Hello Mom a-My son got sick when he was 2 1/2 years old. We didn't get the diagnosis until after he had turned 3. We started him with the NG tube and peptamen jr. He was only able to have chicken broth and otter pops besides the formulas. We did this regiment for 3 months and were able to get him into remission. He was severely malnourished and gained about 10 lbs with this diet. It truly was a life saver. It is definitely a very hard struggle to try and eat around a child that cannot have any. We hid our food for the first little while but then our son got used to it and things got better. We had a g tube placed because we planned to keep using the formula as a treatment option since it worked so well with getting him into remission. This has been a lifesaver as well. It makes things so much easier than an NG tube. We have tried twice unsuccessfully to reintroduce foods. He started flaring within a week both times. We have since pulled him off of foods again which is a lot harder when you let them have foods and then take them away again. We are trying to get him back into remission again. Please let me know if you have any other questions. I am so sorry your little one is having to go through this. Good Luck

 

[Sascot]

Hi, sorry to hear about your little one. It must be hard to try to explain what's happening to them. My son did the 8 weeks of Modulen via an NG tube - though he was 12 at the time. I see you are from London, so I would assume the treatments would be similar - on the Modulen my son was allowed 7-up (not the diet one), sugar free chewing gum and fox's glacier mints, not sure what else they may recommend if the child is smaller. Good luck with it all.