Newbie!

[Cupkatemom]

Hi - My daughter, age 10, has been newly diagnosed with Crohn's. We are currently awaiting enzyme blood tests to see if she is a candidate for Imuran. We have done all the research and although my husband is confident in the treatment, I am overly concerned and sensitive. I've been lurking these message boards for a few weeks and am appreciative of this strong community you all have created!

Our Girl has lost over 10% of her body weight and currently has more mild symptoms - anemia & larger bowel movements with slight stomach pain. The scope showed only mucosa. I am not sure how this compares to others. She is a bright but sensitive child, so we have limited the information about the disease with her. She is handling what we told her well; however, we are struggling with her willingness to participate in blood testing. Any tips?

Thank you all for this opportunity to be part of the group,

 

[my little penguin]

Glad you found us
But sorry you needed us.

6-mp has been around a very long time and has a good success rate.
It has some scary potential side effects but so does abx and Tylenol.

DS was on 6-mp for about 8 months.
Make sure to get copies of all blood tests and all pathology reports.
This will come in handy later.

As far as weight.
We use en ( peptamen jr ) for DS .
He gained 30 lbs and grew 6 inches .
He is currently on humira.
It does get better everyday
Just take it one day at a time .

 

[kimmidwife]

Welcome to our forum,
Like My little Penguin said taking it one day at a time is what you need to do. Hopefully Imuran will work for her. My daughter was allergic to it so it was not the answer for us but others on here have had good success with it. Keep us posted and feel free to ask any questions you may have.

 

[Jmrogers4]

Welcome, we had good experience with Imuran our first go round right after my son was diagnosed at 10 and he felt and acted like my normal child again. He was on it for a couple of years.
Once the disease is under control weight generally returns.

 

[Twiggy930]

:welcome: Cupkatemom

Sorry to hear that your daughter has been unwell. My son was diagnosed at the age of 10 too. He has been on Imuran since his diagnosis almost 2 years ago. I too was unhappy about my son having to take a medication with such scary possible side effects. It got easier everyday and now I don't think too much about. It ends up becoming normal.

Somewhere on the forum there is a link to a good talk that clearly, with diagrams, explains the actual risk of taking these meds. It is VERY small. I will try to find that link.

:hang: it does get better.

 

[Cupkatemom]

Thank you all for your kind words and support!

 

[greypup]

Our daughter was diagnosed this past year and is on Imuran.

This forum is such a gift for those of us who have questions and need support. Someone is always here for you.

(((hugs)))

 

[Sascot]

Hi and welcome. My son was diagnosed with only stomach aches although he now has a fistula. He has been on 6mp (similar to Imuran) for 10 months with no side effects. As for blood tests, it's difficult. I tended to give my son a sweet treat before which I told him helped. We use the numbing cream and put it on 45 mins before. We have found that blood tests from the inside of the elbow are easier than the hand. Good luck

 

[Mehita]

Welcome, Cupkatemom. You're going to find a LOT of support here so be sure to ask any questions, vent away, and come back and update us.

I'll just add that my son was 8 when diagnosed. He too is bright, but sensitive so he needed to know things, but we filtered a lot. I think it probably wasn't until he was around 11 or 12 that we started telling him more details and felt comfortable that he could handle it.

As far as blood draws, we always ask for Emla creme when the nurse is checking us in. It's a lidocaine creme that sits on the skin and numbs it up. It takes the sting out when the needle pokes through. The bummer is that it takes about 30 minutes to work. If your doctor's office doesn't have it or if you do labs before the appt, you can see if they will prescribe it for you to put on at home.

I think it also helped to explain to my son what information we can get from blood draws to stress how important they are. Maybe explain how CRP and Sed Rate measure inflammation and let her track it over time in a spreadsheet. My son used to get excited when things would fall in the normal range and would correlate it to how well he was feeling as the numbers dropped. Geeky, I know, but it worked.

Good luck with the Imuran! It wasn't strong enough for my son, but our GI has said he has many patients who've been on it for 5 and 10 years.

 

[CarolinAlaska]

We do the EMLA cream at home and wrap it with Saran wrap prior to blood draws. Before that I practically had to haul her against her will for blood draws. It made a huge difference.

 

[Farmwife]

Hello and welcome to the forum.
Nothing more to add. You've been given great advice.
Hugs and keep us updated.

 

[my little penguin]

There is a spray
Ethyl chloride which works in 30 seconds
Skin turns white and poke your done
We use it for DS humira injections .

 

[Cupkatemom]

Is the spray available OTC or should I ask for a prescription? We tried the cream last time but she cried the hardest on that draw - maybe b/c it was the 2nd time.

 

[my little penguin]

Spray is prescription .
Rhuemo gave us the script for it when DS explained how painful the humira shots were even with the Elma cream

 

[CrohnsKidMom]

Welcome to the forum! Sorry to hear about your little girl's dx. My son was dx'd last March at age 8. He was on prednisone, tried Imuran but had a reaction to it (but it works well for many), and is on methotrexate injections now. My son has always been scared of needles, and initially screamed and cried when getting blood drawn. He still doesn't like it, but the drama is now gone. Hang in there, it will get easier for your daughter. I also don't tell my son everything about Crohn's, just what he wants to know, or what I feel he can handle. He heard someone call it a disease and he said, "What?! I have a disease?! Am I going to die?!". I just refer to it as a disorder, something outside normal, but we can deal with it. Seems to soften the blow somewhat. Take care! I hope your girl responds well to treatment.