Plan of Attack Advice

[Mehita]

Unfortunately, we need to make a decision on how we are going to treat DS's current flare up within the next day or so. Any advice would be appreciated!

History: Flared in October 2011 due to a stricture. Did steroids with almost no side effects and a liquid diet and felt good. Started Pentasa in January 2012. Started showing symptoms again in early April 2012. Blood work showed slight inflammation so we increased his Pentasa by 25%. Since then symptoms have become worse.

Today: No lab results yet, but doctor thinks the inflammation might be in the lower colon and not related to the stricture and gave us the following options...

A) Steroids for two weeks, then taper. Continue current Pentasa or
B) Steroids for two weeks, then taper. Switch to 6MP (his TMPT was intermediate) or
c) Enteral nutrition for six weeks, continue Pentasa, but no steroids.

When we started discussing a liquid diet/enteral nutrition, DS broke down and started crying. The emotional and social impact of the liquid diet last fall was really, really hard for him so I worry about compliance.

Also a factor in our decision... there are only two weeks of school left with lots of fun activities, food and field trips. Steroids would get him through. Normally, I don't take school into consideration much, but with the timing of things, I'm trying to see the big picture from a 12 year old's perspective.

Do we go with Plan A, which could work, and enjoy life but risk steroids for the 2nd time in 8 months? Or Plan B and introduce something totally new with unexpected side effects and lots of doctor visits during a time when he won't want to miss school? Or Plan C, the safest, but with the highest emotional toll?

Any thoughts???

 

[Tesscorm]

Wow, those are tough choices for you and for Lukas! :ghug:

The EN is certainly the 'safest' but, I can certainly understand your concerns re his emotions and compliancy. Just some questions re his last experience with EN... was he allowed any food at all? And did he drink the shakes or was it through NG tube? I'm asking because when my son did the 6 weeks exclusive, he was allowed clear fluids which included broth, 7-up, apple/white grape juice (no fibre), kool-aid, gatorade, freezies, jello, popsicles (not chocolate), clear candies, gummies and I've read of one mom here who made cotton candy! These at least allowed my son to have the semblance of a meal with broth at lunch and dinner and then freezies/popsicles, etc. (But, I know not all GIs allow these clear fluids???). Also, my son ingested his formula through the NG tube - so, if the shakes are not something Lukas likes to drink, by having the tube, it eliminates the need to 'drink' (although learning to insert the tube, altho easy, may seem like a whole new challenge for him)

I'm sorry I can just offer some considerations re the EN option - I wish I had some advice as to which option would be best :confused2:

Good luck! :ghug:

 

[Jenn]

So frustrating and so hard to know. <hugs>

It's probably worth trying option A first, see how things go before ruling the Pentasa ineffective?

Totally hear you with the school factor and emotional factor. Would he be more compliant with EN if out of school? Seems worth trying the steroids til that point. Hard choices, but know you'll make the best one for your family with the info you have at hand.

Good luck!

 

[DustyKat]

The emotional aspect of things is a biggie to me and if EN isn't going to cut it at this point then i would go with the steroids. I assume it is a quick taper?

If he is open to EN when school finishes then when the Pred finishes I would move onto that and continue with the Pentasa. I would do it this way to maximise the chances of knocking the flare on the head. Whilst doing this I would have bloods done fortnightly so there are also clinical markers to track response.

My concern with option B is the time frame. 6MP will take at least 3 months to become fully therapeutic so a two week Pred course is too much of a short fall.

Good luck hun...:hug:

Dusty. xxx

 

[Mehita]

@Tesscorm ~ Last fall when he was on the liquid diet is was pretty loose. They even allowed scrambled eggs and mushy mac & cheese. His primary focus was to drink 3-4 Boost Plus or Ensure Plus bottles a day (@ 340 calories). He doesn't mind drinking the bottles and likes the taste. Psychologically, he just couldn't get over the not eating thing. He would get so sad and weepy. Some days he would "drink" his lunch in the nurse's office so he wouldn't have to see all his classmates eating. It was heartbreaking and the longest 3 weeks of our lives.

He seems pretty set against the NG tube. I don't think it's going to happen...

 

[my little penguin]

Really confused by your options
EN to be effective needs to be usually 6-8 weeks sole nutrition .
3-4 boost is really not enough calories. My then 7 yr was on 1750 calories a day .
Most Gi / papers suggest pred with 6-mp same time to reduce inflammation without wasting 6-mp time.

Even without all of that en has found to be less effective the second time it is used to introduce remission. First time 80% second time I "think" was about half that.

I would go with the 6-mp /pred and ask about length of pred. We did en +6-mp( no side effects) . Then later en+ pred + 6-mp
We had to stop 6-mp since ds's liver levels went up even with allopurinol.

We are staying on 6-mp / allopurinol/ en until he starts Remicade .

 

[Sascot]

What a hard decision! I know how you feel. As much as the EN would ideally be the best choice - I don't think my son could do it again, so personally I would choose the steroids with either the pentasa or the 6mp. They go through so much with all this, it does seem extra hard to take away any enjoyment they get - like end of year parties, etc. At this point, I would try whatever is likely to make him less upset. Good luck

 

[Mom2oneboy]

Hi Mehita,

I can totally understand your thoughts about wanting your son to be able to enjoy the last couple of weeks of school. We have been holding our breath around here that nothing would happen to prevent our son from participating in all the special events of his 5th grade year. His last year of elementary! Luckily we only have 3 more days of school! He currently does EN and is doing well so we delayed him starting Methotrexate until after school is out. So, with that said, I would do the steroids over the EN to get him through school and no advice on where to go afer that

 

[crohnsinct]

Hi Mehita -

Hard choices and no one knows your son like you do.

That said our doc says that for EN to work the initial period has to be a longer duration 6-12 weeks and our doc tells us no food although there are a few here who have had some food. If your son is that upset about EN again then I would say it isn't an option. Especially if doc decides to do it longer and remove the food option. We have to treat the whole child not just the child with Crohns.

I like to try everything possible to keep meds the same and keep the others in my pocket for a later day. I would try the Pred 2 weeks + taper combined with the Pentasa. Then after school is out and you have more info reevaluate. Maybe he would be more open to EN at that time...more prepared???

Good luck!

 

[Mehita]

We're going with Plan A - two weeks of steroids, taper, and give Pentasa another chance. We need to live for today and what's important to us today is getting through the last two weeks of school.

Thank you for all of your input and support! When L was constipated earlier this week, we were pretty excited when things cleared up. My best friend didn't understand the fuss and I realized, she will never understand. She will never have to make decisions about whether to give her kids chemo drugs, never have to monitor their fiber intake, doesn't know what the Bristol Poop Chart is, and won't cry herself to sleep worrying whether tomorrow will be a good day or a bad day. I know you guys understand and it makes things a little more tolerable. Thank you!

 

[Farmwife]

I'm glad you settled on a plan of action.:thumleft:

I know what you mean. I love my family and friends. I wouldn't trade them for the world!
However, crohn's is just something people don't fully understand.
I didn't either until I researched it more.
It's nice to have a group of people who have every day struggles and joys just like you.:ghug:

Farmwife

 

[Sascot]

Sounds like a good plan. Hope it works well and allows him to enjoy the last couple weeks of school!

 

[crohnsinct]

Congrats on making the decision and keeping our fingers crossed that this is all he will need to get him back on track and has a fabulous last two weeks of school!

Keep us posted.

 

[izzi'smom]

Glad that you were able to make a choice...they are tough! FIngers crossed that it works...

 

[Tesscorm]

Tough choices but it's a relief when you do settle on a course of action! I hope all goes well for your son!!!