Has anyone else's child been on Delzicol? If so maybe you could answer some questions for me:)

[Chase's Mommy12]

My 2 year old son was put on delzicol in march along with predisone and zantac since he is too young to swallow a pill his GI told me to crush it and mix it with liquid and administer it in a syringe but on the bottle it says not to crush, chew, or break I looked it up and it says doing so can keep it from being released properly in the colon. I asked the nurse practioner about it since he didnt see the GI his last appointment and she said not to worry about it. He has been off the predisone and zantac for about a month and now I think (but im not sure) that he is experiencing another flare up his tummy looks slightly bloated at times (more so recently) and has been saying his belly hurts but Im not sure if he is telling the truth because his belly only hurts at night when he is getting ready for bed he is a very energetic child so maybe he is ignoring the pain during the day because he is distracted or he is being smart and trying to get out of bed time. Im really not sure since I am new to all this I don't want to be a crazy lady that is calling the doctor all the time and he has an appointment next week so im trying to wait it out but I also don't want to brush this off and something really be going on..... this is all so new and confusing

 

[my little penguin]

It used to be called asacol .
DS was on it .
It's very mild and typically is not enough for crohn's patients .
Have you tried EEN ?
Formula only as a treatment .
Helps induce remission similar to pred but without the side effects.
We use it as an extra therapy as en ( formula plus food).

DS took asacol as an add on to a lot of drugs.

Pentasa is a similar drug but the capsules can be opened and spilled on applesauce .

Good luck .

 

[DanceMom]

No advice about the medicine, but I see that we are practically neighbors! Small world!

 

[Chase's Mommy12]

It used to be called asacol .
DS was on it .
It's very mild and typically is not enough for crohn's patients .
Have you tried EEN ?
Formula only as a treatment .
Helps induce remission similar to pred but without the side effects.
We use it as an extra therapy as en ( formula plus food).

DS took asacol as an add on to a lot of drugs.

Pentasa is a similar drug but the capsules can be opened and spilled on applesauce .

Good luck .

What is EEN? Im hoping next week at his GI appointment to talk about changing his medication.

 

[araceli]

My Daughter was on it for a year. Belly pain may be a side effect but make sure to call the Doctor. Don't be afraid of calling every time you are in doubt, remember you are the best advocate for your kid. EEN is liquid nutrition, I have no experience with it so I will let others explain it to you better. Sending hugs and support.

 

[Jmrogers4]

saying his belly hurts but Im not sure if he is telling the truth because his belly only hurts at night when he is getting ready for bed he is a very energetic child so maybe he is ignoring the pain during the day because he is distracted or he is being smart and trying to get out of bed time.

My son's only complained of his stomach hurting in the morning right before diagnosis and is fairly common for them not to notice as they become used to the pain and it unfortunately is their normal so it is not until they have settled down or are quiet that it becomes apparent to them. A heating pad or something warm on the tummy helps. I've seen stuffed animal type things that have an opening with for a hot water bottle or warmer you can heat up in the microwave.

EEN is Exclusive Enteral Nutrition and is a liquid diet of special nutrition drinks like formula or pediasure. Studies show it can be as effective as prednisone in fighting inflammation We have a whole thread on it: http://www.crohnsforum.com/showthread.php?p=694576#post694576. It has been very effective for some my son included and is usually a first line in many other countries.

As MLP says Asacol/Pentasa and that class of drugs are generally not that effective alone against Crohn's and at least in our case have only been used to try and boost another treatment to try and make it more effective.

 

[Chase's Mommy12]

He was supposed to be on pentasa they sent him home with that on a friday night from the hospital but his insurance wouldn't approve it so i had to call their answering service and a nurse pract. put him on this while they tried to get the other approved that was in march they have never mentioned if they are still working to get it approved. They never mentioned that it wasn't very effective for treating crohn's Im gonna be going beack through these post and making a list of things to talk about next week with his GI. Also have they had anyone elses kids taken off dairy and have you been able to reintroduce it?

 

[CrohnsKidMom]

Welcome to the forum, Chase's Mommy. So sorry to hear of your little guy's dx. Sorry, I can't give you any info on the drugs you mentioned, but I wanted to offer you support. My son was 8 at dx, and we went the Prednisone route, tried Imuran, and now Methotrexate. EEN was highly recommended by our GI and I may have gone that route if my son was younger. Our GI said Pentasa is more effective in UC or if the Crohn's is in the large intestine. My son's happens to be mainly in his small intestine. My son couldn't handle lactose while he was flaring, so we used lactose-free milk and dairy products, as well as a low residue diet (soft cooked veggies, no seeds, low fiber). I would ask to speak to a dietician from your GI office for some advise on diet. I hope you get a good treatment plan going and your little guy starts feeling better soon.

 

[Chase's Mommy12]

He had swelling in both the large and small intestine at different times but when put on the delzlicol it was after being in the hospital with the end of his small intestine swollen almost closed they had him on a low residue diet but his last appointment he had lost weight so he is now on a high calorie diet. I have him on lactose free milk now as i have tried to give him milk and it has made him sick but he can tolerate cheese and other dairy products.

 

[Maya142]

Hi and welcome!
I'm so sorry to hear about your little boy! My daughter was diagnosed 16 and has been on a number of meds including Remicade, Imuran and Pentasa. Insurance also put up a fight for Pentasa, but our nurse was able to get them to cover it eventually (after arguing with them)

My daughter is lactose intolerant and is able to tolerate some dairy products if they are lactose free (lactaid milk etc.). We've also tried cutting out dairy but it didn't really work since she's a teenager:lol:

I'm going to tag Farmwife, who has a little girl with IBD.

 

[Maya142]

If he can't tolerate dairy at all, have you tried almond milk? My daughter hates soy milk but says almond milk tastes good. They have several different flavors, she likes vanilla.

 

[Chase's Mommy12]

He likes the lactose free milk that I have been buying with a little bit of nestle to give it a chocolate flavor lol and he is still able to eat cheese but ice cream and milk have caused him problems.

 

[my little penguin]

The drugs can go step up or top down approach.
Top down has been shown to reduce the likelihood of surgery in the future.
These would be biologics ( remicade /humira ).
Step up uses the most benign drugs then goes from there.
5-ASA are the class of drugs for pentasa /asacol these are consider to be about as effective as aspirin for a brain tumor for crohn's- not going to hurt not going to help much either .
Next comes immunosuppressants ( 6-mp Imuran Aza etc)...
These come as pills but I think a few have these as suspensions.
They take 4-6 months to work and tend to be given at the start of pred since the inflammation needs to be down first .
Biologics are last ( remicade humira) these take about 6 weeks to work .

You may have an issue given his age most drugs are not approved for kiddos that young .
5-ASA will work if they are going to within a month .
DS found them to be useless .
They can be added to other meds to give them a boost.

EEN or en can be as simple as adding. Pediasure - polymeric formula , peptide /peptamen jr -semi elemental formula or neocate /elecare/eo28 splash -elemental formula.
They help with weight /growth and reduce inflammation but still need to be added to ther maintenance meds once food is added.

Each broken formula uses less of the intestine to absorb it
DS takes peptamen jr.

As far as stomach pain
Use the five pain face scale for little kids then record the numbers daily for the Gi as well as night sweats , mouth ulcers, joint pain, number of bm's etc...

Good luck

 

[Jmrogers4]

Could be a little sensitive to dairy. My non-ibd son and myself have lactose problems. We do the lactose free milk but can't do regular, ice cream or soft cheeses. The way it was explained to me was hard cheeses the lactose was already broken down so that may be way.

 

[Farmwife]

Hi and a warm welcome my dear Grace was dx at three but has had issues most her life.
My girl is mostly EEN but we're trying an item of food a day. Her stomach is still not behaving.
She's on humira and mtx and showing some signs of improvement.
I know how overwhelming this is at first and I can't even say you'll get use to this but you will find a new normal and your son will have better days.:hug:

Please ask any questions. All these parents have been in your shoes.

 

[Patricia56]

Hi Chase's Mommy12,

You are doing a great job so far. It is really hard the first year or so after diagnosis because there's so much to learn all while taking care of a sick kid and making difficult decisions.

Are you seeing a pediatric gastroenterologist (ped GI)? If not, then your first priority should be to get referred to one.

If you are seeing a ped GI then I suggest you ask for a 2nd opinion as I am not impressed with the care your child is getting, if I understand things correctly.

If I read your previous post correctly, your son was diagnosed in March while inpatient with a partial blockage at the ileo-cecal valve (medicalese for his intestines were swollen almost shut at the place where the small and large intestine join).

In May(?) he was placed on oral prednisone and asacol and Zantac.

You see the GI for a follow up next week. Is this the first appointment since he was in the hospital?

When the others are suggesting EEN they are talking about using a special prescription formula as the main treatment for his Crohn's. He would drink it or have the formula tube-fed. He wouldn't get to eat or drink other things except water, although some GI's do allow a few other foods/drinks like diet soda. Usually he would stay on that tretament for about 8 weeks then go back to regular food if his symptoms had resolved. If they had not then further treatment would be considered i ncluding extending the period on EEN.

Especially with very young children, this approach has a lot to recommend it. It is nutritionally sound, avoids medications like prednisone which stop him from growing and have many, many other bad side effects, and is effective. It is the first treatment used in most of the rest of the world (Europe, Japan, etc) to induce remission in children.

Many people have trouble with milk products when flaring. Lactose is a difficult molecule to digest along with gluten. So it may just be that he can't handle it right now and will be able to do so later.

I have to run but post some more about your son's symptoms at diagnosis, etc.

 

[Chase's Mommy12]

Patricia56 He was diagnosed after a colonoscopy that showed swelling in his large intestine and when his biopsy came back showing he had all the markers for crohn's they did nothing about that swelling even though they said it was pretty bad. shortly after that he began vomitting and his stomach was bloated thats when he was hospitaized and finally put on medication since then he has been back to the ped. GI but hasn't actually seen the GI instead was seen by the nurse pratcitioner and he goes back next week

 

[Patricia56]

If possible I suggest you seek a 2nd opinion on your child's treatment.

Have they ordered any labs to be done? If not, call your NP and tell her you want them to run labs so the results are back in time for the appointment with the GI.

At the appointment ask the GI to go over your child's labs, biopsy results, and the colonoscopy findings with you. Tell him you want to understand as much as you can and it would really help if he would explain things to you so you can make the best decisions possible.

If possible, get copies of all the labs, biopsy results, and clinical notes on the colonoscopy for your records.

You want the doctor to be able to tell you what he thinks is going on - if he's in remission, how does he know that? If he's not in remission, how does he know that? If he's not sure, what more information does he need and how will he get it?

What is the treatment plan? the docctor should be able to tell you his plan including what he's going to do as he goes along depending on the symptoms/results.

Remember BRAND

B - what are the Benefits of the treatment plan
R - what are the RIsks of the treatment plan
A - what are the Alternatives to the treatment plan
N - what if we do Nothing
D - Decide

If you are able you should keep a daily record of pain levels, BM's, anything else you think is important like bloating. Take it with you to GI appointment along with a written list of questions.

Write your list of questions/concerns in priority - most important first and least last. It's unlikely they'll get through the whole list so be sure the most important questions are first.

 

[kimmidwife]

Hi Chase's Mommy,
We too are in Florida and unfortunately also have had a tough time finding a really good peds GI here. I agree with Patricia about getting a second opinion. Please keep us posted how it is going.

 

[troutdogs]

My daughter takes delzicol, she is 14 and tolerates it very well. She likes the almond milk, but since starting the medication we have been able to reintroduce dairy with no problems. I would talk to your GI doctor and express your concerns.

 

[Chase's Mommy12]

Thank you all he hasn't been feeling well today and he has had 4 bms which is unusual for him usually he only goes 1 or 2 times a day and they have like a "sick smell" (does anyone else know what i mean by sick smell)

 

[my little penguin]

C diff ?
A lot of times hospital exposure can equal cdiff in Ibd kids .

 

[kimmidwife]

Chases mommy,
Like MLP (above me) said. An odd smelling stool can be a sign of C diff which these kids are at higher risk for. Call your doctor tomorrow and tell them you want him Checked for c diff. Tell them your concerns.

 

[Chase's Mommy12]

I plan on calling first thing in the morning i will keep yall updated in the mean time he is finally asleep so im gonna do the same thanks for all the help