New Crohn's Diagnosis for my 3 year old daughter

About 8 months ago, my 3 year old daughter Hannah started having blood in her stool and ongoing diarrhea. It was a little odd because it only happened maybe once every other day, but it was consistently....just not right.

Her visit to the GP revealed Charcot-Leyden Crystals in her stools (I'm still not sure what that indicates) and anemia. She was referred to the pediatric GI in another city (we live 4 hours away from a hospital with this type of care).

When we made it to the GI he ran some labs and diagnosed her with...constipation. The constipation diagnosis caused us a little consternation but he gave an explanation that seemed plausible. Unfortunately the 3 months of laxatives made little difference.

Scopes last month, after a dramatic rise in her sed rate, and unresolved anemia as well as the low albumin. The GI was surprised to see the damage to her colon because she looks really healthy and he didn't expect she had IBD.

Anyway, the biopsy report came back today. She has Crohn's Disease. I have a lot to learn to be her advocate. Thank you for inviting us in to your community.

Hi and welcome. I'm very sorry to hear about your little ones diagnosis.

We have a fantastic group of parents on this forum. Sending you both my support.

Thank you so much! I will explore the link to the C and C Canada site. It looks like you have many years of experience as you were diagnosed young. One of the things I wonder about is if anyone has any information or anecdotes about the beginning of treatment for a child. I talk to the GI tomorrow about a med change now that there is a firm diagnosis. I have no idea where we'll start.

Hi and welcome Pilgrim!
My daughter was diagnosed at 16 with Crohn's and that was hard enough - your poor little girl! There are a number of parents on the parent forum with children who were diagnosed around your daughter's age (and even some in your area).

I hope your GI is coming up with a plan for treating your daughter, so that she can go back to being a normal 3 year old.

Usually kids either go on steroids (prednisone or Entocort) or EEN (exclusive enteral nutrition) to get symptoms under control after being diagnosed and to give the maintenance medication some time to work (which is usually an immunomodulator like Imuran or Methotrexate or a biologic like Remicade).

My daughter was already on biologics when diagnosed (she has a form of juvenile idiopathic arthritis) and so switched to Remicade and Methotrexate which work for both juvenile arthritis and Crohn's.

I'm going to tag a few parents of younger children, so they can give you some info: Farmwife, my little penguin, CrohnsKidMom
and other parents who just know a lot : Clash, Patricia56, Tesscorm

This is the link to the parent's forum: http://www.crohnsforum.com/forumdisplay.php?f=49
There's a lot of good info and support there!
Good luck:hug:!

Welcome although I'm sorry you need us.

I'm glad it only took 3 months of "constipation" before she was diagnosed correctly. We had a longer run than that before getting diagnosed (my son was 10).

You didn't mention a treatment plan or medications in your first post then I saw you are meeting with the GI today. I hope it is a pediatric GI with experience treating IBD in younger children. It's too bad you live so far away from the hospital. That's a long haul with a 3 year old.

Be sure to post the treatment plan he is proposing. Hopefully it will start with EEN.

Has your daughter had any growth delay?

Pilgrim said:

Thank you so much! I will explore the link to the C and C Canada site. It looks like you have many years of experience as you were diagnosed young. One of the things I wonder about is if anyone has any information or anecdotes about the beginning of treatment for a child. I talk to the GI tomorrow about a med change now that there is a firm diagnosis. I have no idea where we'll start.

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Where was your daughter diagnosed?

Thank you Maya142 for the introductions to other parents here with very young children and the outline of the usual course of treatment - and the support.

Patricia56 I will post later where we're starting with treatment, when I find out. Hannah was in the 97th% for height and weight at birth. At the beginning when she was diagnosed as "constipated" she had kept her height but dropped down to the 75% for weight. Our GP thought that was normal considering how big she was to begin with :confused2: not sure if that was good logic. In the last 8 months since then she has neither gained nor lost weight. I'm not sure if her height has increased because I don't track it. I guess I ought to start. How is your son doing now and how many years have passed since his diagnosis?

I hope it starts with EEN, too. I was reading about the medications this morning and it seems like a lot for a little body to deal with.

DJW - Winnipeg, MB

I'm sorry you've had to find us there... 3 is so young to begin to deal with this.

I also hope they suggest EEN - that was my son's first treatment and he did well with it. Regardless of the treatment, do consider starting EN, not exclusively (ie no other food) but as a supplement to help ensure that your little girls gets all the necessary nutrients and calories. Even at 20, my son continues to drink 1-2 Boost shakes most days.

Good luck at today's apptmt. Be sure to ask what you should expect from the treatment plan (ie symptoms, side effects, etc.) and when should you start seeing improvement.

:ghug:

Welcome to the forum, sorry you found a need for us.

I agree with others if your daughter can handle EEN while waiting for the maintenance meds to start working(depending on the med it can a few months) then I would go that route. My son did EN to help with weight gain and it helps tremendously.

Update us with the following up appt conclusions and I hope your daughter finds fast healing!

Welcome to the forum. Very sorry your baby was diagnosed at such a young age. Sending lots of Hugs and support.

Thank you for all the support! I was given the option of starting exclusive enteral nutrition for 2 months before moving on to work with the corticosteroids and immune suppressants and that is what we are doing. It sounds impossible with a 3 year old, but we're giving it our best shot. I would love to know if anyone has done this exclusively - as in nothing else but water.

For us it will be more expensive than the medications, because those are covered under insurance with no wait time, and the enteral nutrition is not covered at all. But there are no side effects with EN so thus the decision.

For now the upper scope was good and her disease is only in the colon. Of course, there are many feet of small intestine that the GI hasn't seen yet so we don't know what is in there but I am hopeful.

Tesscorm when your son was treated with EEN how long before you saw improvements and how long did the remission last? Was it a remission? You said he did very well....

I'm not sure how the health care system in Canada works, but here (in the US) I was told insurance would cover if as long we did it using an NG tube (so they could call EEN her sole source of nutrition, which it would be).
There are a number of parents whose kids have done EEN, I'm sure they will chime in soon.

Not all insurance in the us will cover it even with a tube unfortunately .
Tagging Tesscom since she managed to get someone /group in Canada .
But her son used a tube.

DS did formula only for 9 weeks at age 7 while we waited for 6-mp to kick in.
He drank peptamen jr orally with prebio .
For kids make sure its very cold ( you can not freeze them or the nutrition is gone ).
Use a straw or sippy with a long spout to by pass the taste buds.
Ask the GI about plain sugar cane /dum dum lollipops .
DS was allowed this in limited quantity
A sprinkle of sugar over crushed ice .
Homemade cotton candy from crushed dumdums or plain sugar.
This can be used as a treat when you are out at a party - put them in sip on cupcake holders with feet.
Fancy paper themed coffee cups with kids and funny straws -
Plastic wine glasses etc anything to change the presentation .

Lots and lots of distractions while drinking
DS was permitted to watch tv.
Be prepared it took over two hours to get DS to drink one shake and I had to pinch his nose .
By day three he stopped crying and now he drinks two everyday as a supplement in about 5 minutes no issues .

Things to think about EEN is great and wonderful but it is not maintence .
Typically EEN is started with a maintence med.
Maintence meds take a long time before they can become effective (6-mp think 4-6 months ) so waiting till after she has been on EEN for two months will only mean you have do more EEN or pred to keep her inflammation down until the maintence meds start working on their own .
Not going to kid you the meds are scary on paper but so is Tylenol -you just don't have docs pointing out the scary deadly side effects to the everyday drugs .

Meds are a necessary evil to keep the inflammation to a minimum and allow your child to grow /develop like all the other kids .
Typically the younger the age at dx the more severe the disease coarse - anything under 20 is considered young .

Inflammation leads to scar tissue and strictures/fistulas which usually require surgery .
Once the bowel is removed you can't get it back .
Crohn's can cause severe damage even death when not treated or under treated .
Again not to scary you more but docs use the drugs with the POtential side effects because the benefits from them really outweigh the risks associated with them .

Our goal for DS is to keep as much as his gut healthy as possible with the scary drugs until less scary ones come along .

DS has managed to work through all of the drugs in less than 2.5 years .
Which is scary since he is only 10 .
The thought of pentasa had me in tears in the beginning as did each and every drug change since then ( except adding the methotreaxte for his arthritis ).

You have to give your self time to grieve the dx and arm yourself with as much knowledge as possible about the available drugs and probably outcomes .
There are a lot of research papers in the pediatric research section of the parents sub forum. Most explain how the disease and drugs work etc...,
Take it day by day and realize she didn't get this way over night and it will take time for both of you to heal inside and out .

Hugs

Our first two meals substituted with EEN went really well. She didn't fight it, I explained what we needed to do simply enough for a 3 year old. Thanks penguin for your advice about how to get it down. Even though it seemed easy today, I know she'll be sick of it in a few days. We're allowing her to watch a video away from the family while we eat meals so she doesn't have to see the food.

I understand that we may have to move on to meds and I hope that my earlier post didn't come off as opinionated about the medications. I am new to all of this and I'm here to learn. I don't have opinions yet, except that are particular to our immediate decisions. I don't think though that we received irresponsible advice which allowed us the option to try EEN, it was probably an option based on her disease severity and location. I understand from reading just a little here on the forum that it can progress differently for each child. When the time comes to move on to the meds I will do it for her.

I will look up peptamin - maybe we don't have that brand here? I was told that the formula would be covered if it was administered through a tube, but at this point we are not needing to do that. We bought a brand called Boost.

I feel terrible for your son that he has had to go through so much already while so young. I think it almost would be harder for a child of your son's age to adjust. My daughter is so young and has probably been feeling rotten ever since she can remember, so it's just another bump in the road for her.

Did he have swelling in his joints? My daughter doesn't have any swelling but has frequent complaints about some of her joints. I am wondering if you could tell me how the diagnosis was made for his arthritis.

My daughter has a form of juvenile idiopathic arthritis (juvenile spondyloarthritis/enthesitis-related arthritis) that is associated with IBD. In her case she was diagnosed with the arthritis before the IBD, but often the IBD comes first.

This particular type of arthritis involves the ligaments and tendons as well as joints - enthesitis is inflammation at the point where tendons/ligaments insert into the bone. So, it is definitely possible to have arthritis without having obvious swollen joints.

It's definitely worth having a pediatric rheumatologist follow your daughter if she is already complaining about her joints. This type of arthritis is not very common in very young children, but not unheard of. Pediatric rheumatologists tend to treat juvenile arthritis quite aggressively to prevent joint damage.

Joints that are often affected in JSpA include the heels, knees, ankles, hips and SI joints (but really any joint can be affected).

Boost is a polymeric formula which means the proteins are whole.
Easier than food to digest but some kids need things more broken down
Peptamen jr and peptide are medical food and are covered by insurance in the us sometimes when ordered by prescription through a durable medical equipment company or directly shipped from nestle /abbott company websites.

Those two are semi elemental which are broken down further easier to digest etc...
Last you have elemental formula the easiest on the gut ( neocate , elecare , eo28 splash ).

As far as EEN hopefully your Gi explained once EEN is stopped and you reintroduce food her disease and symptoms will come back -that's a given typically within a month but some get up to year or less .
EEN tends to induce remission in children at the same rate as pred the first time but typically is not as successfully the second time .

You will need a maintence med - the type depends on your child disease .

DS was dx recently within the past month with arthritis .
He had a lot of joint pain which is a common EIM with crohn's .
All Ibd kids should be followed by a pediatric Rheumo if they have joint pain and need to be evaluated at least once a year by an opthamalogist ( actual eye md -)not optometrist
For crohn's related eye complications .

I'm glad you've started on EEN. My son did his through NG tube overnight and it was covered by CCAC (Community Care Access Centre) - we were put in touch with them by the hospital. They covered the formula, tubes, pump, etc. The advantage of using the tube is that you don't taste the formula - the NG tube is inserted in your nostril and goes to your stomache. My son inserted the tube each evening and the formula was pumped overnight while he slept. Keep in mind, my son was almost 17 when doing this - he understood the treatment and the need and was old enough to learn how to insert and remove the tube. However, the tube can be inserted and left in for 4+ weeks. If you decide to use the tube at some point, I (and others) can give more you info/advice about this.

As MLP said, Boost is not the easiest formula to absorb. Unfortunately, as you move towards the elemental formulas, the taste gets worse. But, perhaps, you can work your way there... ie 3/4 Boost with 1/4 Peptamin for a few days, then 1/2 and 1/2 and so on and let your daughter adjust to the flavour gradually.

We were allowed clear fluids and candies during the exclusive period - broth, clear pop (ie ginger ale but no coke), apple juice (no fibre), gatorade, jello, popsicles (no chocolate), freezies, lifesavers (no caramel, etc.). The broth was a huge help!

As MLP said, lots of distractions... and, even with a teenager, presentation... sometimes I'd give him broth in a mug, I made 'jello' with apple juice (juice and plain gelatin for a change), etc. The broth and freezies also helped when he was with friends, ie I sent him broth to eat at lunch with friends and arranged for the school to keep freezies for him.

After the six weeks of EEN, his maintenance treatment was supplemental EN - so, regular diet added back in and he continued with the formula at 1/2 dose each night. The only medication he took was nexium.



As for his response, he improved almost immediately (ie within a couple of weeks), however, he also had flagyl (antibiotic) by IV for a week while in the hospital so this may have given the EEN a kickstart. EEN took him into clinical remission, which means no outward symptoms. However, he did not achieve biochemical remission, which means inflammation is completely gone and can be confirmed by testing (scopes, biopsies, MREs, etc.).

As MREs continued to show active inflammation, remicade was eventually added after 1.5 years. While I am grateful that we were able to postpone meds for 1.5 years, I'm MORE grateful that he was lucky in that the disease did not worsen nor leave permanent damage while he was on EN only. Right or wrong, his pediatric GI had been fine with allowing EN to control the crohns (ie inflammation improved at the beginning but then, what did remain, stayed for the next 1.5 years). Once we moved to an adult GI, he was adamant that damage would be caused if the inflammation wasn't brought under control. So we started on remicade (and stopped the NG tube and elemental formula).

He does, however, continue to drink a supplemental shake each day. He drinks Boost shakes now, however, he used an elemental formula when using the NG tube. As he is on remicade now and does not have inflammation, absorption isn't really a concern, so I picked my 'battle' and compromised with Boost rather than a semi-elemental shake since he agreed to continue drinking 1-2 shakes per day.

Our insurance wouldn't pay for EEN at first, but we didn't give up, based on a post I read here and they eventually paid 100% of the cost. I think we tried 4 times?

I'm very sorry that your baby is sick.

Sorry late to the thread.
My girl is five but dx at three. She's on mtx and humira and also does EN.
You've been given all the best advice possible.
These kids are amazing. What would lay out any adult with pain, these wonderful kids take in stride.
They'll be good times and bad but just remember the good times will get more and more as time goes on.

If you have any question please feel free to pm me. :hug:
My farm is super busy this summer but no complaints........it just feels nice to be outside and I'm sure my Grace agrees.

lenny - Thanks, I wasn't even going to try, but I think we will go through the process.

Farmwife - I couldn't agree more about what the kids can endure. She is patient and when she feels well enough still laughs and plays.

Thanks again for all the support.

Just an update

Our daughter had her small bowel follow through and visit with new team. The imaging showed no Crohn's in the small intestine. At this point her disease is only in the large intestine.

She's going to continue EEN and is still doing well getting it all down so we don't need to add the tube at this point.

Her joint pain is gone already (or at least she isn't complaining about it) so I would say that EEN is working for her already although I wouldn't say she is in remission.

I messed up and got her immunizations early, so we have to wait a number of weeks before starting to take Azathioprine. But that will be her maintenance drug.

I think it all went as positively as we could have hoped.

That is great news re. the SBFT, Pilgrim. Also great news re. the joint pain.

What is your secret re. the EEN? What is she drinking?

You did not mess up by getting the immunizations early. Once on Azathioprine she will be unable to have live immunizations.

So sorry to hear about your little girl. We all know what you are going through. My daughter was diagnosed this past March at seven years old. It is so hard to fathom the diagnosis at the same time you have to research and come up with a treatment plan. My husband and I spent a month and half researching our treatment options and getting second opinions.

The medications are scary, but many of us have seen our children benefit from the drugs. My daughter is on her fourth Remicade infusion and her colonoscopy this past Friday revealed extraordinary healing.

The good news is that you've found this forum. You will gain so much knowledge and support.

Best wishes to you and your sweet little one!

~julia

Hi Pilgrim. I'm sure Catherine's post was an auto correct issue but once on azathioprine no live vaccines are to be given.

DJW said:

Hi Pilgrim. I'm sure Catherine's post was an auto correct issue but once on azathioprine no live vaccines are to be given.

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Thanks fixed.

Unfortunately we had to switch GI's in the middle of all of this. The first one who diagnosed her had given me the verbal instruction to maybe get them early in anticipation of the drugs. The one we are working with now had wanted to get the meds going right away, but at that point I had already gotten the vaccines for her - so thus the mess up. But I think you are right, it is good to have the vaccines in the system. I guess she could be on the AZA for a long time.

No secret with EEN. She's just using polymeric formula, like Boost, or equivalent. I haven't seen any follow up labs yet (we had some this week) so I don't know if her sed rate is improving or anything. I think she feels better when she drinks it as opposed to eating, so she has been very accepting. But only chocolate flavour! The BM's are still pretty wrong looking, but some are better. We are happy to see the joint pain gone. I'd love to say goodbye to fatigue too, but one day at a time.

There are members on here who have been on aza for 15 years.

Typically you are on meds for life.
Since once you stop the inflammation comes back and is harder to control.
Very good job at getting her immunizations up to date now before starting .
Most docs recommend that .

I think I'm still adjusting to the "for life" part of the disease.

The "for life" definitely takes some getting used to. However, once you see them get better on meds, you can't really imagine life without them!

Don't worry, you're not the first person to do the vaccine thing - I got my daughter an MMR booster (live vaccine) and it delayed starting biologics by a couple months! I'm glad she's protected but it was very frustrating at the time.

Glad your little girl is feeling better.