Just wondering if anybody else's child has ever been prescribed Lialda for CD .. My son was diagnosed at 6 yrs old and was immediately started on prednisone and pentasa then weened from pred and they added in 6mp every thing went well and the doctor took him off of pentasa since he was having trouble taking it due to not finding things he would eat to mix it into, and all his numbers were really good and he has been doing well since then except although he has FINALLY hit a growth spurt in height his weight gain has stalled (he was 36 lbs at dx and now has not gone over 50 lbs in months) he is defiantly getting taller went from a size 3 t in pants to a 7 slim he is incredibly active plays sports , runs, scooters like a champ but he just burns through his calories ontop of the fact that Crohns does that for him anyway he is a picky eater and just can't stomach ensure because of the vitamin after taste... but the doctor suggested putting him on lialda to help him maybe have a better chance of absorbing some more nutrients by taking any extra stress off his system... When I was calling the pharma company about their prescription discount card I was told jack wasn't eligible because he wasn't 18 and even though it is a med intended for people with CD/UC that it wasn't something that was normally prescribed to kids.... And now that I have been looking online I am not reading anything about kids being on it.... Any one have any experience with it he has been taking it with no problem the last couple days but I was just wondering long term ... Thanks in advance
Lialda prescribed for my 8 year old
- Thread starter Jaxmom
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Can you try another type of formula?
boost kids
pediasure
peptide
petamen jr.
I know my kiddos wait stalled fro a while at dx but adding pepatmen jr has changed that.
some kids put an mg-tube in at night -run a pump of formula all night to avoid the taste
and pull the tube in the morning.
this makes a big difference in growth since IBD kiddos 1.5 times the calories of a normal kid just to keep up.
My child was at the 755 for both height and weight at age 5.
down to the 25% for height /weight by age 7.
peptamen jr plus lots of bid meds and now he is back to the 75% for weight and 66% for height.
definitely something to look into.
also bid kids can be taught to swallow pills.
Ds learned how to swallow pentad at age 7 and never looked back.
good luck
boost kids
pediasure
peptide
petamen jr.
I know my kiddos wait stalled fro a while at dx but adding pepatmen jr has changed that.
some kids put an mg-tube in at night -run a pump of formula all night to avoid the taste
and pull the tube in the morning.
this makes a big difference in growth since IBD kiddos 1.5 times the calories of a normal kid just to keep up.
My child was at the 755 for both height and weight at age 5.
down to the 25% for height /weight by age 7.
peptamen jr plus lots of bid meds and now he is back to the 75% for weight and 66% for height.
definitely something to look into.
also bid kids can be taught to swallow pills.
Ds learned how to swallow pentad at age 7 and never looked back.
good luck
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- Dec 4, 2011
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- 312
My son really does not like ensure. He is ok with the chocolate kids boost blended with mint chip icecream. He really gained weight and started to grow with these when he was doing 3 a day.
Sorry, no knowledge of lialda here.
Sorry, no knowledge of lialda here.
crohnsinct
Well-known member
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- Mar 10, 2012
- Messages
- 6,348
:bigwave: Hi Jaxmom. Not a lot of advice on Lialda but thought I would say hello since we are from the same state. Tried to send you a p.m. but system wouldn't let me. Who do you guys see? We use CT Children's Medical Center.
Hey Jaxmom - so sorry to be slow on the draw in responding.
Our history has been my son was on Pentasa from diagnoses (he was diagnosed in April 2010 at age 13). About a year ago he was not staying on top of his meds (even though I was on top of him!). He would remember to take his morning pills but not his evening or vice versa; hence his doctor recommended we try switching to Lialda. She stated that it was the same medicine as Pentasa, however instead of taking 7 pills a day (4 in the morning, 3 in the evening) he would only need to take 3 pills per day. The thought was that there would be less pills to take hence he wouldn't miss doses. WRONG. He still missed pills, but instead of missing an morning or evening dose he was missing a full day of meds. The turn around was fast - I don't think he was on it the meds for more than 2 weeks when he said he wasn't feeling great, he had his first cramp in over a year and he was exhausted.
We had agreed with the doctor that IF for any reason Alex didn't feel the same he could return to the Pentasa without having to return to the office. So he did. Touch wood and thank God, he went back to feeling great and has gotten MUCH better on taking his pills (even says thank you when I remind him or ask him if he has done so)
Our insurance didn't blink regarding the Lialda. Because our Pentasa prescription hadn't expired and we had the new prescription for Lialda, they actually filled both. I stocked piled both meds for emergency (hard to get a 90 day supply of meds just in case...)
As for growth - Alex was always small... he was only in the 10% at birth weighing in at a whopping 5'10" lbs. and stayed small *forever*. It wasn't until he hit 15 that he took his first big growth. He's now close to 5'11" but still slim at 145 lbs.
The biggest issue he has with nutrient absorption is Vitamin D - even though he had been on Vitamin D supplements (50,000 mgs once a week) and was outside *all-the-time*. However, in his last bone scan and last labs everything was in the normal zone. (yeah!!)
Not sure if that is what all you were looking for as far as info - but that is our story.
God bless!
Our history has been my son was on Pentasa from diagnoses (he was diagnosed in April 2010 at age 13). About a year ago he was not staying on top of his meds (even though I was on top of him!). He would remember to take his morning pills but not his evening or vice versa; hence his doctor recommended we try switching to Lialda. She stated that it was the same medicine as Pentasa, however instead of taking 7 pills a day (4 in the morning, 3 in the evening) he would only need to take 3 pills per day. The thought was that there would be less pills to take hence he wouldn't miss doses. WRONG. He still missed pills, but instead of missing an morning or evening dose he was missing a full day of meds. The turn around was fast - I don't think he was on it the meds for more than 2 weeks when he said he wasn't feeling great, he had his first cramp in over a year and he was exhausted.
We had agreed with the doctor that IF for any reason Alex didn't feel the same he could return to the Pentasa without having to return to the office. So he did. Touch wood and thank God, he went back to feeling great and has gotten MUCH better on taking his pills (even says thank you when I remind him or ask him if he has done so)
Our insurance didn't blink regarding the Lialda. Because our Pentasa prescription hadn't expired and we had the new prescription for Lialda, they actually filled both. I stocked piled both meds for emergency (hard to get a 90 day supply of meds just in case...)
As for growth - Alex was always small... he was only in the 10% at birth weighing in at a whopping 5'10" lbs. and stayed small *forever*. It wasn't until he hit 15 that he took his first big growth. He's now close to 5'11" but still slim at 145 lbs.
The biggest issue he has with nutrient absorption is Vitamin D - even though he had been on Vitamin D supplements (50,000 mgs once a week) and was outside *all-the-time*. However, in his last bone scan and last labs everything was in the normal zone. (yeah!!)
Not sure if that is what all you were looking for as far as info - but that is our story.
God bless!
