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Crohn's Disease Forum » Parents of Kids with IBD » Med Adjustment for 5 year old H


07-12-2016, 12:01 PM   #1
Pilgrim
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Med Adjustment for 5 year old H

We finally discussed the path report and are going with a two month Budesonide course as well as upping to adult dose on Humira.
She's never done steroids. Any stories or advice? Pill form, not enema.
P.S. Thanks to all who urged me to get over the fear of administering her injection. We had a memorable camping holiday. No real problems with the injection.
07-12-2016, 12:15 PM   #2
Maya142
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Way to go!! Glad it went well!!

My daughter is also on Budesonide (Entocort in her case, 9mg). She has been on it two months already. She had NO side effects for the first two months but now has a slightly puffy face. No other side effects.

Budesonide is not as bad as Pred because it works in the gut and less of it is absorbed systemically. So hopefully she won't have any side effects at. My daughter was also on it when she was diagnosed, for three months, and had no side effects.

Because it's not systemic, it's also not a strong as Prednisone. It's helped my daughter, but she continues to have belly pain and occasional diarrhea. It's not like Prednisone, which is a "magic" drug for her in terms of efficacy.

Good luck!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-12-2016, 02:27 PM   #3
pdx
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My daughter also had no problems/side effects with budesonide. Hope that these med changes really help your daughter. I'm glad to hear that your vacation went well, and that you were able to do the Humira injection without too much trouble.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-12-2016, 08:24 PM   #4
Pilgrim
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Thanks for the encouragement! I'm excited that it's possible she might squeak by with no side effects.
But tonight is going poorly. I never thought it would be so hard to get her to swallow a pill. We also have a prescription for Omperazole. So this is three large pills per day with the Budesonide. She ruined the first pill and we threw out the carcass of it, there were lots of tears and frustration during the process, and I feel terrible because I was also frustrated.
So I'm regrouping and downloaded a sheet from CCFA about how to help her do it and will spend the next few days trying to work up to it. She had to wait this long for the med addition so I'm sure a few more days won't matter.
The amazing thing is that she went to bed with a smile on her face and said she is ready to try again tomorrow.
07-12-2016, 08:32 PM   #5
my little penguin
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We went through the tears with ds when he little
Tic tacs
Mini m&m
Rice
And jelly beans worked well as practice
Empty the Prevacid in applesauce and let her practice with the empty pill casing
You can also buy empty pill casing
Oroflo cup works as well if she needs to get it in faster
Placing pills in applesauce or pudding
Help some
It took ds two weeks at age 7
Now we have to tell him to slow down and not swallow too many pills at once
Beware once they can swallow pills getting them to take any liquid meds AGAIN is hard

Some meds are easier to titrate as liquid


Good luck on the humira at the higher dose
Hugs
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07-12-2016, 08:42 PM   #6
Maya142
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Poor kiddo! I'm glad she is up for trying again. I hope it goes better tomorrow.

Is she on Uceris or Entocort? I know the brand name Entocort capsules are not so big (or at least, they don't look so big to us) but they only come in 3 mg so she has to take 3 of them daily.

My kiddo likes to takes as many pills as possible at once - mostly to bother my husband who does not like to take pills. It will happen some day!! Hang in there.
07-12-2016, 10:47 PM   #7
CarolinAlaska
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I second using foods to practice on: raisins, peanut halves/quarters, chewable vitamin pieces...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
07-14-2016, 11:26 AM   #8
Farmwife
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It's amazing how kiddos take to leaning to swallow pills.
My son at 3 just did it, I mean just did it and has never had an issue. Unbelievable, I still have issues swallowing pills.
Now Grace took about 2 weeks also to learn.
She did the prednisone trick.
I told her to chew the pill of pred if she had to but learning to swallow would be better. Well after a week of the nasty taste she started getting the hang of it.
Btw, we tried the m&m method but she realized the longer she to try to swallow the more m&Ms she's got. Lol
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-14-2016, 04:31 PM   #9
Pilgrim
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That was happening here too. Now I make her spit the m&m into my hand if it doesn't work. She gets to eat 5 if she swallows one but still not having a lot of success. Oroflow cup should be in next week.
07-15-2016, 03:07 AM   #10
Sascot
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Both my kids learned by me almost throwing the capsule so far back in the mouth/throat that it just went down. Happened by accident the first time but seemed to work! They had a glass of water just ready to drink straight after
07-15-2016, 04:31 AM   #11
DanceMom
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My youngest learned to swallow pills around the age of 2. I put the pill in a spoonful of applesauce and had her swallow without chewing. A was a little older and we practiced with candy. She puts a little water in her mouth, puts the pill in the very back of her mouth, then just swallows. My mom still needs a mouthful of chewed food to swallow a pill. Be patient and she'll get it.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
07-15-2016, 06:55 AM   #12
Pilgrim
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I tried the applesauce. Put the pretend pill in the applesauce, spoon it into her mouth , have her swallow with water. Somehow, all of the applesauce disappears and the pretend pill remains.
I'm going to practice pill chucking - maybe that will work.
We got the pills down more or less yesterday, but not entirely in one piece and I felt like she was drowning. Absolutely soaked in water.
07-15-2016, 07:42 AM   #13
my little penguin
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Try chewing bread but not swallowing
Then put bread chewed pieces in woth pill and let her drink water to swallow the bread
07-15-2016, 07:44 AM   #14
DanceMom
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Sometimes the fact that someone is watching you with expectations is enough to make swallowing the pills difficult. I let A practice with candy in her room alone when she was practicing for her pill cam. Once she mastered it solo she could do it easily for an audience. She'll get it!
07-19-2016, 06:56 AM   #15
Pilgrim
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The winning suggestion was from Sascot! Pill throwing! We've had a few days of success with that. I just have her open up wide and I toss the pill right back there. We didn't even need water yesterday.
It's kind of hilarious!
07-19-2016, 12:51 PM   #16
Sascot
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Hilarious! Glad it worked!!
07-19-2016, 05:57 PM   #17
Farmwife
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Sascot. Have you put that in the tips and tricks thread?
07-19-2016, 05:58 PM   #18
Farmwife
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Sascot Pill chucking method-
That could be one name for it? Lol
07-19-2016, 08:31 PM   #19
Pilgrim
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I didn't quite roll my eyes when I saw the idea of tossing the pill at her throat....

But desperation breaks all prejudice!

Yes, Sascot it was truly a genius invention!
07-19-2016, 08:37 PM   #20
Maya142
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We did something similar (but weren't quite so desperate -- it was before my girls were diagnosed).

I had them put the pills as far back on their tongue as possible and then take a big gulp of water and swallow. Worked pretty well. M learned when she was 6 or 7 years old.

That might be your next step - when she is ready to move on from tossing the pill in!
07-21-2016, 03:35 PM   #21
Sascot
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At least I've invented one useful thing in life
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