newbie mom of toddler with crohn's

Hi & welcome, what a sad story you come with... My heavens it's bad enough for us oldies to put up
with this disease, but a little one, it's just heartbreaking.
As far as being cranky, it could well be down to pred withdrawal, or for her just every thing in general
Bless her. I'm 60 and I get extremely cranky and I know what's going on:(

I really don't have much as to offer by way of advice, but please know we will be here for you if you
need us. Hugs

I'm so sorry that your daughter is sick with this DD at such a young age.

I agree with the GI, if the sulfasalazine isn't working, then it's time to try something stronger. She obviously isn't doing well enough right now. Imuran is a strong medication, but serious side effects are pretty rare. I don't have much knowledge for usage in kids, though. It's a tough situation. Talk with the pediatrician, but also the GI, as Crohn's is something he/she sees all the time. Is the GI a pediatric GI?

Also, do you have her on any probiotics or other supplements? I think it's a good idea. The probiotics might help with appetite and diarrhea and help her intestinal health overall. Your GI/ped. might be able to recommend one, if you don't already have her on one. I use Udo's Toddlers for my 2 yr. old.

It just breaks my heart when I hear about a child with this illness. We've had parents here who've taken drastic measures for their kids with CD: stronger meds, special diets, natural remedies. There's a little risk in most things, and many parents eventually find something that works. Keep trying new things, and I hope you'll find something that will help your precious daughter.

Have faith and hugs to you both!

Iam so very sorry, so young, makes me sad and sick. How do you give one so young, med's? How aggressive do you get, is remicade to aggressive, sulfa did nothing for me when I first got this piece of crap disease, pred. did nothing at first, surgery was my only option. good luck, please keep us posted on your precious girl.

AG

Hi toddlerwithcrohns, I am so sorry that your daughter has been diagnosed with this disease.

Does your current or 2nd opinion doctor have experience with pediatric crohn's? What are the youngest ages of patients that they've worked with?

Was your daughter on sulfasalazine from Jan '11 to Jul '11? I was diagnosed at age 15, and I was told to expect that I will always be on some sort of maintenance medication for the rest of my life (until there is a cure) to minimize the risk of future flares.

Neither of my children have crohn's, but my oldest (now 6) was born with a serious medical condition that kept him in the hospital until he was 4.5 months old plus with a g-tube from age 4 months until age 2. He also had birth-to-3 type of physical/speech therapy services because of how long he was hospitalized.

We found that self-education, online support, and a good, well-informed pediatric doctor/specialist who acted as much our partner as our provider, were the cornerstones of our foundation to really help him with his condition, recovery, and rehabilition.

The most frustrating thing at that age was that my son couldn't tell me what was wrong. And when he was old enough to talk, he wasn't old enough to really understand or explain what felt wrong.

As far as eating, my son's g-tube was put in to bypass the oral issues. For your daughter, even after you feed her via the tube, she has potential digestive issues still ahead. Just curious, do you use a pump, or do you do the "drop" feedings?

What is probably getting difficult for you to discern is when your child's eating habits are off because of the disease or are they off because she's being a normal, picky toddler? Our youngest son (just turned 3) is significantly more picky than his older brother. Sometimes he eats so little over the course of a few days, that I'm not even sure how he is growing and gaining weight!

How about sign language? My son's speech therapist taught him (and us) some basic sign language. Most of the words he learned at first revolved around food because his therapists goals were mostly tied to oral aversion/eating issues rather than actually speaking. We picked up a few sign language board books, and added some more words to his vocabulary. This helped him communicate, build up a vocabulary and understanding of words before he was able to actually say a lot of things.

Good luck to you and your daughter in getting the best medical treatment available, and getting all the answers that you need. This site is a great resource of veteran crohnnies, so stick around and ask away!

(PS. with respect to the imuran/6mp question, I've only taken it as an adult. It either wasn't available when I was younger, or my doctors thought I was doing ok on other drugs. My understanding of the cancer risk is that it is pretty minimal. Most of the research they have is based on adults, and I know they are trying to do more pediatric research. The bigger risk that you should be made aware of is that these types of drugs are immuno-suppresent drugs...meaning that your daughter could be more likely to catch colds, etc. If your daughter takes it, your primary care doctor should also be aware that she is on the medication. At home, practice good hand washing and be a bit of a germ-a-phobe. I don't remember what the youngest age is for flu shots, but if she is old enough she should have the flu shot while on this drug - the dead, not the live vaccine. Your GI should monitor blood counts every 3 months to watch for a drop in white blood cells. I was on this for over a dozen years and rarely caught any other colds or illnesses.)

Livingwell, you have already been warned by another mod. Please do not posts messages that flame members.
Also, you should not "hijack" other people's messages to serve your own agenda.

If you truly have questions and would like to understand or share info, feel free to start a new thread, but before you do, please review our forum rules. -- Roni

Post Edited By Moderator (Roni) : 10/11/2011 9:36:57 PM (GMT-6)

And Roni is quite right about hijacking.

Toddlerwithcrohn's, I'm sorry that your thread has been taken over in this manner.

Here's one, mild, example:

Everyone on here indentifies themselves with this disease and do not take the time to heal themselves with diet. If I offend you them too bad.


Your post was edited out because it violates both the rules and the spirit of the forum. And I'd remind you that this is a thread to support toddlerwithcrohn's, and shouldn't be taken over by this sort of debate.

*If* you must debate the matter further (and I wish you wouldn't), please do so in a separate thread. But we have a short tolerance here for unsupportive individuals, and I must warn you that you will be reported to Admin if you persist in this sort of behaviour. Remember, we want support and friendship and encouragement here, not controversy.

Best wishes,

Ivy.

 

So sorry to hear that your baby girl has been diagnosed with crohn's. I don't think that diagnosis is easy for anyone at any age but for you it must be especially difficult.

The gastric tube feeds will be good for her in the long run as it will ensure that she is at least getting some nutrition.

When a consultant suggests Imuran I think the first thing we, as parents do is read up about the side affects and yes they are scary! However (especially if they work) your fears about side affects do diminish when you see your child gaining weight/colour/energy.

That is not to say don't question the consultant and accept what he says as 'carte blanche' but also try not to get too weighed down by all the drug 'small print'

Ds was put onto azathioprine(similar med to imuran) approx 18 months ago and for him it has put him in a 'good place'

although he was a lot older(at 16) when he went on to it.

Good Luck

katiesmommy1 be sure to add your email to your profile. That way if the OP wants to connect with you she can just click the envelope under your name and be able to email you privately. Hugs!

"Sometimes its really hard to differentiate between her symptoms and normal sickness."

I am glad to hear that she is feeling better.  This sentence really struck a cord with me because I think even as an adult with this disease for more than two decades, I have trouble determining whether the onset of symptoms are the return of crohn's vs. a normal illness. 

I struggle to find a balance between not just dismissing a symptom as crohn's and also not just dismissing it as something else. 

"S does eat food now but because she is small and underweight she has to get a boost with tube feedings at night. Because she is underweight, I sometimes feel almost desperate at the dinner table to get her eat (which probably isn't helping)."

From what I understand, this is common.  Our son's speech(feeding) therapist advised us to try to make the meal experience as positive as possible.  To try to mask our frustration, desperation, etc, as best we could, so that our son didn't associate eating time as a tense situation.  A LOT easier said than done, but you think of a game plan ahead of time, realize/accept that a lot of it is going to fail, and it help me have a little better, calmer frame of mind for the whole feeding process.

With respect to the tube feedings, are they prescribed before bed as 1 feeding, or as a continuous thing overnight?  When we got to the point of weening off the tube feedings, we were advised to try to time the tube feedings with a normal eating time.  Supplement what was not eaten during a meal with some liquid in the tube.  That way the brain will associate eating with feeling full. 

Good luck at the Mayo Clinic.  Hopefully they will confirm your first opinion approach or advise you towards something else that will also work out really well for your daughter. 

The poor little thing! I'm sorry she has to go through this and that you have to go through it as well! I have no advice, except maybe try and find a support group in your community - I did finally after hiding my Crohn's from just very close friends and family and once I met more people who have this awful thing it seemed like people were coming out of the woodwork with their own stories. i also met a few people who have children with Crohn's & Colitis and I know the support helped them tremendously.

Good luck xo