Toddler with Crohn's.

[oasis-]

Hello,

So I posted in the general thread and was advised to try here! I just have a couple of questions and would like some advice.

My two year old little girl was diagnosed with Crohn's disease a little over two weeks ago. My partner and I also only just found out that his mother and/or grandmother had Crohn's disease.

We were about to start trying for another baby, but this diagnosis and family history has concerned me. So, firstly, is anyone able to give a likelihood of a future baby having Crohn's? I know it varies, it's not purely genetic. I'm just at a loss. It doesn't feel right to have another child if s/he has a high chance of suffering with this disease.

Also, back to my lovely girl. Anyone able to provide tips of coping? She's had tummy problems since she was little and had phases of refusing to eat.

Thank you so much to anyone who takes the time to read and respond. xx

 

[kimmidwife]

I am so sorry to hear about your little one's diagnosis. Itmis so hard when they are so young. We have several forum members whose kids were diagnosed quite young. I will try and tag them.
As to having another child with Crohn's the majority of families who have multiple kids don't seem to have multiple kids with Crohn's though there are some of us that do have multiple kids with Crohn's. I would recommend making an appt with a geneticist to see what the risks really are.
Also has your daughter had immune testing done?
It is highly recommended that any children diagnosed at a young age be checked to make sure they don't have an immune system issue causing the early Crohn's onset.
If you haven't seen a pediatric immunologist I would ask your doctor to recommend one.

 

[Maya142]

I'll tag more members, some of whom have little kids.
Farmwife, Pilgrim, polly13, my little penguin, pdx, crohnsinct, DanceMom

If she is having trouble eating, have you considered exclusive enteral nutrition? It is formula only for 6 or 8 weeks and can induce remission. Formulas like Pediasure, Peptamen Jr or Neocate are used. It will also help with abdominal pain since it is much easier in the gut. Semi-elemental formulas like Peptamen Jr are often used, since they are easy to tolerate.

Even if you don't do enteral nutrition exclusively, using formula to supplement her diet, is a good idea. Your GI can recommend a formula for your daughter - I think Modulen is used a lot in the UK, but not sure what age group it is for. My daughter has been unable to maintain her weight without formula - it has been a lifesaver for us. She was severely underweight and has gained 25+ lbs and is a much healthier, happier kid.

Is your daughter on a maintenance medication yet?

 

[oasis-]

Thank you. She hasn't had immune testing, but we will look into it. Any chance you could tell me what it involves? Is it done through a blood test? Sorry, I'd just like to know as much as possible before speaking with the doctor about it.

We were told about the option on enteral nutrition, and I believe it will be good for her as she usually prefers liquids when she's feeling poorly anyway! as for medication, she is currently on Sulfasalazine.

 

[Maya142]

It generally is blood tests, I think. We had IgG, IgM and IgA tested and that was a simple blood test.

Hopefully parents who have had more extensive testing done will chime in soon.

Glad she is on Sulfasalazine. My daughter was on it a while ago and had no side effects with it.

I hope enteral nutrition will help with the belly pain. It is easier with little kids - most are able to drink the formulas. I will warn you though, that the semi-elemental (Peptamen Jr or Pediasure Peptide) formulas and elemental formulas (Neocate Jr, Elecare) taste pretty awful.

Some kids get used to do them and are able to drink them easily. Little kids are often the most adaptable and are able to drink these formulas.

If the kiddo can't drink enough, an NG tube can be placed. It sounds a lot scarier than it is. My daughter had one for quite a while and it really wasn't bad at all.

But hopefully your daughter will be able to drink the formula.

Your kiddo is absolutely adorable !

 

[DanceMom]

Thank you. She hasn't had immune testing, but we will look into it. Any chance you could tell me what it involves? Is it done through a blood test? Sorry, I'd just like to know as much as possible before speaking with the doctor about it.

We were told about the option on enteral nutrition, and I believe it will be good for her as she usually prefers liquids when she's feeling poorly anyway! as for medication, she is currently on Sulfasalazine.

Immunoglobulin levels should be checked along with vaccine titers. If titers are low, vaccines will be given again and titers rechecked for an adequate response. It can be a lengthy process so I'd recommend seeing an Immunologist ASAP. Our doctor pulled all other medications during the testing phase.

 

[Optimistic]

On your question about siblings -

There are several published numbers about the likelihood for relatives. I've been told that some researchers and drs believe current day numbers might be higher. One of the ped IBD gurus mentioned occasionally on this site would be delighted to test all my kids. He believes in our case based what he knows about my IBD plus other issues child, at least 1 sibling will have something similar or related.

If is hard. I am sorry about your baby. I hope she finds a treatment that works ASAP!

 

[my little penguin]

We were told 33% risk of Crohns in a sibling
But we were also told those dxbefore age 10 have a strong family history
Ds was dx at age 7 and no family history
We have scope our other child more than once
No Crohns found just lactose intolerance
So even without a family history (or higher risk )
A kiddo can get Crohns
Or basically anything for that matter
Very early onset (before age 5) is extremely rare
Most recommend genetic testing
Emory university does genetic panels

 

[Hollaka79]

I'm so sorry your little one has been dx with cd. I got it at 8, diagnosed at 11, now nearly 40. No one in my family has it & both my children (touch wood) are ok but they're both under gastro just to monitor. Elemental diets are rank. I remember them well lol and I had an ng tube. My youngest (22 mths) was on neocate until recently as was allergic to milk & its gross but she drank that no problem & for a while wouldn't take anything else but (even when we started re introducing milk!) So kids do adapt but if not then ng tubes aren't that bad, the biggest issue with little ones is them pulling it out... I hope they get remission soon

 

[Pilgrim]

Hi and welcome. My daughter was diagnosed with very early onset Crohn's at age 3. We had success with exclusive formula and did about 12 weeks of that in her first year of the diagnosis. She is on meds now (Humira and Methotrexate) as well as a strict diet but the formula was a great way to bring things under control initially. We still use it as a supplement when needed.
Genetics. We have no family history here. Our Crohn's daughter is the 6th in a family of 7 children. We watch everyone carefully and have had one sibling checked by the GI. She was fine.
There is no way to predict....
Anyway, prepare to be amazed by how tough and strong and amazing your daughter is. These are great kids.

 

[Farmwife]

Hi and welcome.
Sorry you have to find your way here.
This forum is a great source of help and support.

My dd was dx at 3 but had issues since 3 months old.
It was quite the journey which now seems like a distant memory.
The first part after dx is always rough for both parents and
child but soon you will find a balance and things will calm.
That might take weeks or months or years but it will happen.

Grace did sulfasalazine with no side effects.
Now that she's older she's on Remicade and Imran. This has been wonderful for her.

And Pilgrim is right! Be prepared to be amazed how resilient these youngsters are.
My Grace doesn't remember life without issue.
She doesn't know what life was like before because this is her life (sad in a way but blessings in another).
She has such compassion for others and a real fight for life that I'm sure she got because of her struggles.
Now that doesn't mean I wish every child had this or that I dont want her healed because I do.
But your child will have the same outlook that you do! That's why I try to stay positive for her.
But have been known to sit in a dark room with a gallon of dairy free ice cream and a sad movie and cry my heart out.
We patents need that but my child doesn't need to see it.

Wow, :yrolleyes:I'm being very deep for a women that was up in the middle of the night with her ibd girl sitting on the potty
debating if a unicorn can take out a bear.:yfaint:
The things we patents endure at 3 am.

Oh and laughter. .......it's another way we cope in our house!

Hugs

 

[Hollaka79]

 

[oasis-]

Thank you all again! Hope all your little ones are doing well.

Sadly, my little girl has already had to show me how strong she can be, having had hip problems since birth, resulting in surgery and lots of physio! I know she'll continue to be brave through her Crohn's diagnosis too, just hope that it can be made easier for her. So far, she's been amazing. xx

 

[polly13]

Hi Oasis and welcome but sorry you had to find us. My little girl Lucy now 8 was diagnosed with Crohns when she was two after having symptoms frim 9 months and what you are going through now is difficult. Lucy is the 2nd of 4 children and so far so good with the others, eventhough I watch them very closely and worry constantly. I had three of the four when Lucy was diagnosed and thought I was finished so I didn't have your concerns regarding another child (my fourth was a happy surprise) but I can understand where you are coming from. I would talk to your doctors and get some genetic testing in this regard, and while the risk of another child having crohns is higher than average it certainly isnt a given. I hope your little girl is doing well, and she sounds like a fighter, it is so difficult as a parent when they have a rough start, I remember when Lucy was diagnosed I cried every day for a year, but she never saw it and I now have a wonderful capable 8 year hold who largely takes charge of her illness herself (well in her mind anyway) - she tells me when she needs her meds, she takes to her consultant her self, tells him how she is feeling, what meds she thinks she needs etc. and on top of this she is the most determined little thing I have ever met and has huge empathy with people which I do think is as a result of what she went though. But roll on 6 years and the time of diagnosis is like a distant memory and I know you dont think so now, but the day will come that your first and last waking thoughts are not about crohns disease. Lucy is largerly well now, we have had some bumps on the road but in the most part once we got the meds right she has been well and Im sure it will be the same for your little girl.

 

[oasis-]

A belated thank you again so much for all your support!

For a little update - My girly had a gastrostomy tube put in place back in December after realising that pretty much any foods she eats will trigger her! So, it's easily digestible formula through a tube for her! Also, half way my pregnancy with twin girls! Hopefully they won't be developing the same issues in their life time, but at least now I know the signs to look out for. Xxx

 

[Maya142]

So glad she is doing better! My daughter also has a tube (a J tube in her case) and it has been a life-saver.

Congratulations on having twins!! You will certainly have your hands full!

 

[polly13]

Wow congrats delighted for you and your pregnancy. Glad your lo is doing better fingers crossed it continues. Welcome back