Update-is this what I should expect as my new norm?

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firemama

Joined
Nov 16, 2014
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haven't posted in a while. background: E (now 8 yrs old) was diagnosed with Crohns in late November 2014. inflammation in colon and upper GI seen from endo/colonoscopy and Crohns confirmed with biopsies. in the hospital a week later for a kidney stone (which she passed - thankfully)

current meds/trts:
Pentasa 500 mg 2x/day
lactulose 2 tsp 2x/day
Prevacid 15 mg solutab 1x/day
prednisolone 20 mg 1x/day (was at 30 mg, now doing Dr ordered taper)
drinks 50 oz liquid/day
low residue diet

she still suffers from fatigue and not feeling well and misses 1-2 days of school/week and/or is usually late for 1-2 days. She will run fevers (100-102) with no other signs of a cold virus. She is not eating near as much as she was a month or so ago. She did gain 6 lbs initially on the prednisolone, but now is just maintaining weight. She has started complaining of joint pain.
Her stomach still hurts and sometimes feels 'hot'; pain is not too high on the pain scale. her most recent blood work was on 2-6:
hemoglobin 13.3; ESR: 45; CRP: 2.28 mg/dL; K: 3.1; alb 3.1

I have emailed these concerns to the GI and he still wants to continue the pred taper and no other changes in meds. Is this what is considered remission? Or should I expect things to get better from here? If this is what I should expect then I need to seriously consider whether I can continue working (am only part time now, and struggling to get work done) and figure out some ways to help my other daughter (10 yrs old) cope with what is now the norm in our family.

Part of me feels bad complaining because I see so many others have many more health challenges then my daughter does. Any advice?
 
No this not full remission. Can you get a second opinion?

Yes should expect things to get better but she will probably need a higher level of drug.
 
Yes, my husband and I have talked about getting a second opinion. Trying to decide if we should meet with a different GI in the same group who sees more kids with IBD , or go to a different hospital couple of hrs away. If we go elsewhere, would she need to redo all the tests (colonoscopy, MRE, etc.)?
 
Do you have normal range listed for ESR and CRP. For us normal ESR is 0-15 and CRP is <1 so both of those would be considered quite high and indicate inflammation. Pentasa generally doesn't do much especially for kids as their Crohn's tends to be much more aggressive.
I second second opinion as that sounds no where near remission. My son is in remission and has no symptoms.
 
Agree that this should not be considered the new normal.

I would try to get an audience with the GI. Email correspondence tends to be quick and uses a lot of shorthand. It might help to have an opportunity to ask the doc why the steroid taper and express your concerns that she might get worse. He/she may have a good reason for doing it this way and may have a very good plan up their sleeve. Maybe he/she wants to try to taper the steroid because of concerns over the length of time she has been on them...maybe they want to taper the steroid to see exactly what they are dealing with and so they can treat more appropriately...although that doesn't seem right either...does it? Maybe they are planning to act quickly should things go off the rails.

From what I have heard, Pentasa is a lower level drug and isn't usually successful or if it is, not for very long. My younger daughter has mild disease and her GI wouldn't even consider it. He went straight to Methotrexate. So I wouldn't be surprised if there is an escalation of meds somewhere along the way.

If you are transferring care totally and things aren't going well, some GI's will prefer to do their own scopes and testing but just for a second opinion, I wouldn't think you would need to redo everything. Just have the records sent. Even with a transfer of care, many GI's will try to use the scopes previously done if they weren't to long ago.

Good luck with your decisions and finding relief for your girl! Keep us posted!
 
lab report lists normal ESR as 0-20 and CRP as 0.05-1.0. so, yes, these are elevated. hemoglobin is essentially normal, potassium is a bit low (but better than it has been). Albumin is low as normal is 3.8-5.6. WBC were also high.
 
Agree with all above... Very often Pentasa is not strong enough to maintain remission. And, while some do have to taper pred slowly, and sometimes take a step up the dose again when symptoms come back, the fact that symptoms are reoccurring seems to indicate that pentasa is not enough. I'm assuming she started both pred and pentasa back in Nov/Dec?? If that is the case, I would imagine if Pentasa was working, she could taper pred successfully because pentasa would be controlling her crohns??

I would ask for a second opinion.

As far as testing... if it's for a second opinion only, and if testing was recent (ie MRE), then repeat testing may not be necessary. However, when my son transferred from his ped GI to an adult GI, his new GI ordered all new tests before changing his treatment plan.
 
Definitely a second opinion. Her inflammatory markers are high, why does her GI think that's ok?!
Hang in there. Once you actually get things under control things will be better. Sending hugs!
 
Same here
Second opinOn
Your child deserves to feel normal
There are meds to help with this
I thought that washow kids were with crohns when DS was on pentasa and later 6-mp
Once he started remicade I realized he could be normal and was glad I pushed for normal
 
Agree with the advice above. Those are not remission numbers.

Just wanted to chime in and offer a hug in regards to the family stress. It is such a huge adjustment and I do not know how it is possible to take care of a child with Crohn's and hold down a job. It seems like every day is unpredictable. I hope you will be able to manage to keep your job.
 
I agree with everyone- sounds like you need a second opinion. Probably time for a change in medication. Have you tried EN? It really did great for helping my son with weight, tummy pain and energy.
 
thanks for all the support! After reminding (again!) our current GI how much school she is still missing due to fevers and fatigue, he is in agreement that the Pentasa may not be doing enough and we should see the GI specializing in IBD. So I am now waiting to get an appt time.

will keep you posted. :heart:
 
My son was diagnosed in oct of 2014. He was considered mild/moderate. They put him on Pentasa and although his blood work was moving in the right direction, the weight gain wasn't there, so after about 3 months, we moved to remicade. Our GI said sometimes it takes a few months for the Pentasa to work so maybe your dr just wanted to give it a chance first. I'm glad we tried it, it gives me some peace of mind that we gave it a go.

What dr/hospital are you at? I see you're in wash DC. do you travel to CHOP? Or do you go more locally? We go to CHOP. I think some hospitals tend to treat one way while others go a different way.
 
Good to hear the GI is moving you onto someone with an interest in IBD. :)

Can’t agree enough with what has already been said. Pentasa as a monotherapy for Crohn’s is dubious at best. Your lass really does need to get off the steroids and onto a drug that is steroid sparing and effective.

Good luck with the appointment and I hope you don’t have to wait too long! :ghug:

Dusty. xxx
 
So we have an appt scheduled for Monday morning with the ped GI specializing in IBD! hoping for more answers and a strong path forward.

In the meantime, we had an appt with the kidney stone specialist - adding another medication to the list, potassium citrate due concern about amount of calcium in urine. my little one has not had a bone scan, how routine are those? I will be asking on Monday. and now on a low salt diet as well... ugh

she has been having a better week, for the most part. so far made it to school every day (although some days were late). fever and pain this afternoon, so will see how tomorrow goes.
 
Bone scans are pretty routine. My daughter has one every year and I'm glad she does -- last year her bone scan showed low bone density. Now we're trying to avoid steroids as much as possible. The scan is very easy, it just takes a few minutes.

Good luck with the appointment! Hope the doc has a lot of suggestions!
 
worried mama,

we are at a group in DC. I have looked at Childrens in Philly online if she does not start improving. another possibility would be DuPont/Nemours in Wilmington DE.
 
Good luck for the appointment. My son hasn't had bone scans probably because he was growing well when diagnosed. It's an easy enough test.
 
I have learned to trust my gut. If it doesn't feel right it probably isn't. It is ok to tell docs this isn't good enough for your kid. This new norm is not normal and shouldn't be accepted as your new life. Keep pushing the doctors until they get it. I have spent many days wondering if my advocating for my kid was bordering on making me a crazy mom in the doctors eyes. Would this type of health be ok if you were in this shape? I bet not, so keep pushing them. When your kid gets to remission it will be worth it.

I hope the new doc gives you the answers you need. If not, get a 3rd opinion. Someone will find the answers for your kid to feel better.
 
appt yesterday with the new GI doc. switching meds from Pentasa to Remicade and methotrexate. also adding folic acid. getting appt for bone scan. I don't have the values, but bloodwork from yesterday showed inflammatory markers still high and albumin, potassium, and phosphorus still low. after seeing bloodwork results, she said to go ahead and stop Pentasa as it is not doing much.

will finish prednisolone taper when start remicade.

working on insurance approvals, and then keeping fingers crossed she improves.

Question: she said to start the methorexate now. does it make a difference to give in morning or evening, or any reason to wait till weekend (I will ask her as well).
 
Do you have the shot form or oral of methotrexate? We found it was easier to give on Friday night so he would hopefully sleep through the nausea and have the weekend to recover from any possible fatigue.
Jack took oral but I hear the side effects are lessened with the shot.
Hope remicade works wonders and quickly it was a complete night and day difference for my son and he has been in remission for the past year.
 
It is so hard to hear the news that your kid needs a stronger drug. But also a relief and hope that this is NOT the new normal.
Keep advocating!
 
We also did the shot (or the pills when she was on them) on a Friday or Saturday night so she had a chance to rest the next day. Zofran can help with nausea, if MTX causes it. Also folic acid.
Good luck with the new meds! Hope they work like magic!
 
Most GI's tend to prescribe the shots since they are better absorbed. My daughter tried the pills first (her rheumatologist was prescribing at that point) but they caused a lot of nausea and she was soon switched to shots. Shots were better but she still had issues with nausea and dizziness. Most kids have no issues with MTX though, my daughter just has an extreme reaction unfortunately. MTX really did work well for her though, I wish she could have stayed on it.

If your GI does prescribe the shots, the needle is tiny and my daughters both said they barely hurt at all. They didn't even want to bother with icing the area before the shot (which they did do with Humira!).

Good luck!!
 
Ds tried shots was th Mtx by itself .
He got a lot of flu like symptoms
Then switched to remicade
Recently his Rheumo added Mtx pills to humira to help with his arthritis
No issues as long as he takes his folic acid
Good luck
 
When D was on Mtx before adding Humira she had the needle on Sunday about 1 hr before bed. When we added Humira to the mix we moved Mtx to middle of the week so she always was only 3-4 days between meds and tried to space them out as much as possible. I found about 1 hr before was enough to let her wind down so she could sleep. When she had it in the morning it would take a few hours for her to be able to start the day. Not ideal.
 
Glad you got in to see the IBD specialist. I wonder why the first doc did not send you there immediately.
When my daughter was on Methotrexate we also did it on Fridays so she would have time to recover from side effects. Good luck and keep us posted!
 
thanks for all the support! :hug: E did great for her 5 little methotrexate tablets on Friday night. no nausea problems that night or the weekend. She is scheduled for her first Remicade infusion on Thursday, so fingers crossed all will go well. She was not up for school a couple days last week and was home today - practically fell asleep playing a game on the computer she was so tired.

hoping Remicade will give her some energy and strength and will let us finish the prednisolone taper.
 

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