Miralax Prep and Hives

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Jmrogers4

Jmrogers4

Joined
Jun 5, 2012
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It started off pretty well this morning but about 1/2 hour in, Jack started breaking out with hives on his face and hands :ywow: Anyone else ever experience anything like this? Called the GI that put me on hold while they got him, first time that has ever happened usually its a the nurse will get back to you. Just gave him 25mg of Benedryl per GI's instruction and bought magnesium citrate to finish off this morning prep and will do the magnesium citrate again this afternoon.
 
The prep is bad enough without having to worry about itchy hives too!!!! :ymad: hope the Benadryl works quickly and the preps goes easily!! :ghug:
 
The safety of miralax is under question at the moment (and I'm not writing to alarm you as I'm sure infrequent usage for things like prep won't cause any damage) but it's not as safe as it's made out to be. We use pico salex for prep. My daughter's had horrible urticaria since going on cipro. Even after stopping the drug they've not gone away and it's been a month. We're now looking into what else might have triggered this (virus, allergies) but I wish I had not given her that medication. Her situation is unusual though and I'm sure your son will be fine with the benedryl. Here's some info on miralax - there's quite a lot coming out about it now and I believe the FDA is reviewing it's safety.

http://www.nytimes.com/2012/05/26/u...pproved-for-children.html?pagewanted=all&_r=0
 
That's a shame. Bad enough having to clear out without extra issues. Hope the other prep works fine - good luck for the scope!
 
Ds had hives with his first prep from the dulcolax but only a few so no a deal breaker.
Good luck
 
They seem to have abated with the Benedryl. We are just getting ready to start phase 2 with the 2nd 32 ounces of mix so hopefully no more hives show up.
 
Just pointing out the obvious... Call me captain obvious... lol

Mag citrate can really lower potassium quickly so I would be hitting him with bananas and yogurt and mashed potatoes after all is said and done. I assume they will check this level before he leaves, but better safe than sorry. Better to mention it than to not. Hop all is going well.
 
Thanks I didn't know that actually :ybiggrin:

Now for the results.... Everything looks great, looks like healthy colon, large intestine, TI and even past the TI, esophagus, stomach. Compared to to scopes 3 years ago doesn't even look like a kid with Crohn's. So now what? Waiting for biopsies 48-72 hours to look for underlying inflammation, look at blood that was drawn today. If inflammation present move on to remicade, if not present from biopsies - pill cam to check for inflammation in small intestine we couldn't see. Either way it looks like we will be starting periactin (I think that is what it is called) to see if we can stimulate appetite.

He was a little shocked at scopes since they looked so good he was impressed with the LDN as the other patients of his that are on it were not doing as well and he was expecting to see active disease. Said he thinks Jack is going to be one of those cases where nothing is going to be as expected. (Really? are any of them as expected?)

So more waiting.....
 
Glad to hear the great news! I hope the capsule endoscopy goes well. That is where Jaedyn's inflammation was.
 
That is such great news to hear!! I'm glad you have the colonoscopy behind you guys and hoping for continued good results!!
 
That sounds awesome Jacqui! I may have missed it somewhere but how have his bloods been lately? I assume inflammation markers have been high.
 
Nope Dexky no inflammation markers just no weight gain/ slow height growth he is 5' and 77lbs has gained a total of 5-8lbs in 3 years he was 82lbs for about a month. His GI was thinking that even though calprotectin was normal, labs were normal that we were missing some inflammation. I guess we still may be, he took biopsies so we are awaiting results on those and he they drew blood for labs. If it all comes back normal he wants to do a pill cam to check on the small intestine we can't see, he seems convinced that there is inflammation somewhere. After seeing the pictures from scopes I'm not so sure and would really like to talk about what if it all comes back normal and was told that they will give him appetite enhancers I think he is kinda at a little bit of a loss as he was sure he was going to see active disease and we were going to start remicade
 
Jaedyn's labs showed nothing, scopes showed very little, MRE showed nothing, video endoscopy showed lots of inflammation. Her biggest problem was also poor weight gain and no appetite with some abdominal pain after meals.
 
Jaedyn's labs showed nothing, scopes showed very little, MRE showed nothing, video endoscopy showed lots of inflammation. Her biggest problem was also poor weight gain and no appetite with some abdominal pain after meals. I guess I'm saying this to say, that you shouldn't jump to conclusions until all the testing is done.
 
That's really fantastic news. Glad the scopes went well and nothing showed up!! :ybiggrin:
 
CarolinAlaska said:
Jaedyn's labs showed nothing, scopes showed very little, MRE showed nothing, video endoscopy showed lots of inflammation. Her biggest problem was also poor weight gain and no appetite with some abdominal pain after meals. I guess I'm saying this to say, that you shouldn't jump to conclusions until all the testing is done.
Click to expand...

Yeah^^^^ that. I feel like I'm walking a tight rope. I'm so thankful that scopes looked great but it would have been an easy answer if they were not, so I'm feeling like a bad mother and why isn't he doing better and feel close to tears even though I shouldn't be because really the scopes looked incredible.
 
Hugs...
Btdt with good looking scopes and symptoms
Hope the pill cam has some answers .
Wish we had just paid for ours since insurance dragged its feet :(
You do the best you can with what you know at the time.

Hope you get the biopsies back soon
 
Are you kidding me???? HIVES from miralax.:ywow:
:soledance:You need to tell your boy, he really is an overachiever.:D

I'm glad the LDN is doing it's thing but I do know you have to find out where it's coming from!
:heart:HUGS:heart:
 
Okay biopsies and blood are back :ywow: GI called me at 5:30 as I was picking up Jack's LDN prescription from the pharmacy near the hospital/their offices. Wasn't even expecting a call today they had told me 48-72 hours.

He had me come over to the office since I was only a block away. Biopsies show reactive lymphoid aggregates (whatever that means) he felt it did not justify a switch to remicade but wants to add pentasa as he still believes there is some minor inflammation going on in small intestine.

In addition he wants him on periactin to stimulate appetite and drinking 6-8 Peptides a day (gave me a bunch of samples) as opposed to the Boost as he felt he would be able to process proteins in this easier. Jack is on board and we told him it didn't matter what they tasted like he had to drink them and we came up with a plan for time frame of drinking and he will be filling his thermos with them throughout the day as we can keep extras in the nurse's fridge.

He basically had a conference with the other Ped GI's in the office about the best way forward and brought me in with all of them. We looked at his growth charts over last 3 years and he had an okay growth from 10-11 basically first year of diagnosis but has been flat since and not much since.

So we are to do all this for 2 months and then check in and see where we are at. I feel a little better because at least we have a plan now
 
Glad you have a plan
Are you still doing a pill cam ?
Just asking since violet comes to mind and the thought of it being minor
Since he is still not absorbing.
Hugs
 
Pill cam on hold as they are certain there is some inflammation in small intestine so if we still have no growth/weight gain after the peptide and pentasa then pill cam is back on the table.
The plan is to get a majority of his calories from the Peptide but still allow meals if he will eat them.
It was very interesting being there with 3 different doctors talking about best options to take. After what seems like every time we've been in there I've been saying shouldn't he be gaining more weight/growing more that they are finally taking it serious instead of just saying it will happen.
 
you may want to look at this thermo-
it has a place for a straw which is very important with peptide or peptamen ( same thing - yuck)
and a lid to hide the smell from the other kids
trust me on this

make sure they send the script through your dme
two months of formula is pricey.

if he is not eating as much - liquid fills you up fast - ask about adding more shakes-
ds drank 7-8 a day at age 7 when he was EEN so.....
now drinks 3-4 a day plus food.
good luck

remember - straw pinch nose sip
repeat
 
Sounds like a great plan! And reassuring knowing that you have the opinions/consensus of three doctors... you know it's gotta be a good plan! ;)

I hope the drinks go okay... that he doesn't find them too hard to take! :ghug:
 
my little penguin said:
make sure they send the script through your dme
two months of formula is pricey.
Click to expand...
I remembered you saying that to someone else or maybe it was a taxman post but I remember saying that so specifically asked about getting a prescription and he said yes he would.
They are currently in the fridge getting cold wanted him to try one tonight but I don't think they are cold enough. One of the other docs said make sure they are cold and then reiterated it again when he was walking out the door.
 
bottom of the fridge cold
The go office has to send the script and letter of medical necessity to the durable medical equipement supplier - They submit paper work to your insurance
most plans do not cover formula per say but do cover infusion therapy and medical supplies for infusion therapy.
EN is infusion therapy minus the tube.
They may only cover x% but definitely worht it since you are looking at 2.5 cases a week at $169 a case
so $1700 a month
$3400 for two months.
this is why it is very important to make sure they submit the paper work.
most children's hospitals have a DME that they work with routinely and will drop ship over night to your front door quickly.

If not direct from abbott is cheaper out of pocket but they can take up to two weeks to get to you and you have to pay for rush shipping.
So you may have to add a week or more to wait it out for supplies and paper work.
 
No, we have not ever tried NG tube. He managed to drink 7 Peptides yesterday and was complaining about his stomach hurting. He said not bad hurting but a little uncomfortable. I asked if it hurt like it was too full and he thought that was it. I told him it may hurt a little as his stomach gets used to being full but I will have to keep an eye and see if that is what it is?.
Sent over the Medical necessity letter/form on Abbott site to Jack's GI to fill out and see if we can't get insurance to reimburse any amount. Talked to his GI last night and he said exclusively Peptide for first month than we would talk and see about Boost.
Jack certainly likes the Boost much better.
 
Glad to hear he got the 7 peptides down. Is he saying there is a huge taste difference? We have got to do something, with this virus, C has lost weight which worries me as he was having a hard time gaining weight before the virus(he isn't losing just sits at the same weight). Now with the few pounds lost from this viral thing I'm worried he will just sit at this amount.

Are there any tricks or tips you are employing to help him get them down? I remember his intial reaction to Boost was much like C. C has overcome the gag/rinse after every sip but I'm thinking the more broken down formula would be better for him.

I hope it continues well for Jack and he sees weight gain for his efforts quickly as I'm sure that will help it all along.
 
Well you know since I'm making him drink it I had to try of course and in my opinion the Peptide is super sweet and like drinking melted ice cream (and not the good brand) or runny pudding with extra sugar and the taste just kind of stays in your mouth. We've only tried the vanilla and strawberry flavors as Jack doesn't like chocolate so maybe that one tastes better?
I blended it with a couple of strawberries and some banana last night and he said it wasn't bad, it certainly came out of the blender like a thick milkshake, put it in one of those plastic cups with the lid and straw and handed it to him while he was playing xbox so he wasn't really concentrating on drinking it just kept sipping along. He also takes a solid colored Thermos (thermos brand water bottle rated to keep cold for 12 hours) and puts the drinks in there and just sips throughout the day. Again he is in class and is distracted so not concentrating on how it tastes.
I think the viral or whatever it was that Jack caught a couple of weeks ago was what really pushed him over the edge and his doctors especially since they were worried it was mono and he had no reserves to fight it. He is still really worn out and fatigued.
 
Hmmm...Jack and C are similar he doesn't like chocolate flavors either.

Thanks for the tips I think I'm going to just keep pushing the weight issue at the appointments. I know this virus is the cause of the weight loss as he isn't eating well at all but still like you said it may push it over the edge as far as energy and whatnot.

Thank Jmrogers4, I'll keep the blending with fruit tip in mind!
 
Hey Clash - and keep in mind C has not yet achieved even a remote remission. I think once his inflammation gets knocked down and he is on his way you will see both growth and weight. Remember it took O a good long 6 months to put her weight on and to grow. Go away inflammation!!!!!!!

But yeah, the shakes couldn't hurt in the meanwhile.
 
CIC, hey in my bubble over here!! I hope we make it to the mark this time. It is so frustrating to have absolutely no symptoms at all, eats well and often, 0 pain, normal bms, no gurgling, fatigue, joint pain then BAM four to five days before infusion, things start creeping up!! It is so odd, on any day before those five days there is no way to tell that this child had IBD!!! Ughh

I hope the shakes are going well, Jmrogers4!! Keep us updated!
 
We are up 1lb. Yahoo! Although I let him stay the night at a friends last night for a birthday party so he only drank 4 shakes yesterday and by the time he got home this afternoon I have only been able to get 4 drinks into him but he is doing so much better no complaints doesn't even mind the taste anymore. Although when I asked what they ate he said he had 4 pancakes and sausages for breakfast 2 slices of pizza at lunch a sausage/egg/cheese breakfast sandwich and 2 slices of french toast when he got home and he just finished off 2 mandarin oranges. I think the periactin may be working I don't know that I have ever seen him eat that much.
 
JM so glad for you both for the pound !

That sounds like JJ since he has started drinking the Boost. Now, mind you he only drinks 1 per day, and that is for breakfast. However, since starting them, he is eating almost daily like a "normal teenage boy" !
Before this, he was only eating dinner every day; no breakfast, no lunch. Now he is drinking the Boost for breakfast, takes a packed lunch to school, eats a large "snack" after school, AND is eating dinner as well!
Yes, he has days still that his appetite is kind of small, but that's ok ~ I'll take what I can get :)

So happy to hear things are starting to improve for you!
 
It's such a small thing that most of us don't think about we eat when we're hungry, we eat when we are not hungry. That to see those days when they are actually eating makes you so happy.
We are 6 drinks already today so should be no problem to drink 2 more tonight
 

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