Finally a diagnosis and trt plan

[firemama]

I posted a couple weeks ago asking for advice regarding - what to ask GI doc when going in for a consult for my 7 yr old DD. Turns out that at that appt, he was not ready to diagnose, but wanted to do another colonoscopy/endoscopy since the MRE results were not quite conclusive enough and not what he had expected to see. We had the scopes done last Friday and he called me on Sat afternoon with the path results. So my little E was confirmed for Crohn's and acid reflux.

Dr. prescribed 20 mg/day of prednisone and 20 mg/day of prilosec. He requested both to be in liquid or soluble tablet form. The prednisone was able to be formulated into a liquid, but not for the prilosec. How do younger kids take that if they have not learned to swallow capsules? Do you open the capsule and mix into something like applesauce or ice cream? And are those typical doses for a 41 lb child?

She is feeling better and went to school for a 1/2 day today (first day back in 2 weeks). She would have been happy to stay the whole day, but I don't want to exhaust her and have to keep her home again. So we are hopeful we are on an upward trend right now!

- thanks for listening

 

[crohnsinct]

Sorry to hear about the diagnosis but hopefully now that you have a plan you will be able to get your girl on her way to feeling well.

At dx, my daughter ws also not swallowing pills so it was liquid prednisone and a sulutab PPI. We were dx'd Prevacid. While insurance covered the solutab PPI it was still almost $100 per month. My daughter was 11 going on twelve but at the beginning we still indulged her in the solutabs. When she was inpatient, the nurses just opened the prevacid capsules and mixed it with yogurt or applesauce. Not sure if this will work with Prilosec. You can ask the pharmacist.

Fair warning...prednisone and many PPI's do a number on bone density so you may want to ask your GI about supplementing calcium. Hopefully the prednisone won't be long term and you will be able to taper once the maintenance drug can take over.

 

[Maya142]

Sorry to hear she was diagnosed, but I guess it's good to know, right?
There are many parents on here with younger children, I'm sure they will chime in soon. I've heard someone mention they taught their child to swallow pills by practicing with mini m&m's. I'll tag my little penguin and Farmwife.

I'm glad she's feeling better -- Prednisone usually works fairly quickly. Since she's missed some school, you might want to think about a 504 plan for the future (in our experience, missing school in elementary school was no big deal, but in middle and high school - very big deal!) CCFA has a great template.

Hang in there and good luck!

 

[Farmwife]

Im glad you got the dx and treatment is beginning.
I taught Grace to swallow pills at 5 by doing what I call the Prednisone method.
She had to swallow her pred pill. I told her she could bite it but it would taste horrible.
Well for a week or so she would take a bite of applesauce and chew the pill and swallow (still was horrible).
Then after a week I notice she would only bit it in half and swallow.
At the end of three weeks she was a pro.
YES she didn't want to take it but I made her.
I NEVER yelled or made her feel bad for chewing it.
I told her to take her time and work at it.
I would say things like, I'm sorry it taste bad but once you can swallow it whole it will be better.
:kiss:I tried to encourage every chance I could.:kiss:

Oh yes, their was also a bribe if she could do it. Shameful I know.

 

[my little penguin]

Oralflo cup can be used
We did tic tacs and grains of rice
Working up to m&ms at age 7.
Took two weeks plus a toy but worth it
He can now swallow 5 pills at once if needed
He thinks he is a pro

 

[DanceMom]

We practiced with candy, even jelly beans to practice for pill cam. Both of my girls learned to swallow pills very early on because they hate the taste of most liquid medicine. The key is making each experience fun and non-stressful. I'm never above bribes either Farmwife! lol

 

[crohnsinct]

We tried the mini M&M's and graduating up but it was a no go for O. It does work for others tho. T

he nurses in the hospital had a trick that they swore works for most kids. Have the child eat a piece of bread...when it is well chewed and they are just about to swallow, throw the pill in and it goes right down with the bread. Made sense to me but somehow when they tried it with O the bread went down but the pill was still in her moth. I swear I couldn't do that if I tried!

Over the next year she got the little pills down and then larger etc. Just takes time and patience.

 

[firemama]

thanks all! Evelyn did a great job swallowing her prilosec capsule this morning. We talked about how the outside of the capsule has no taste, or we could open and put the medicine in apple sauce (but she could probably still taste it and it does not have flavoring like the chewable vitamins). She wanted to give it a try and the capsule was gone!

It is amazing how her whole outlook is better after just getting a name to what she was going through and some new medicine. Thanks also for the link to the 504 template. It will be very helpful. Her school has been great about accommodations like carrying a water bottle and her absences. But they do want to have some formal paperwork in place, understandably. They have not had students with Crohn's before so we are all learning.

Farmwife - those are not bribes as there is nothing illegal or nefarious intended. those are rewards - and I use them too. makes getting through all the tests and procedures much less stressful.:ycool:

 

[Sascot]

Sorry to hear about her diagnosis. At least they can start treating it properly now. Hope the meds help