Dr took daughter off meds following stricture surgery - is this normal?

[cherryblossoms]

Hi, I'm new here. Just looking for some advice and opinions, I'm not quite comfortable with the care my daughter is receiving. I'll try to condense this, if any questions please ask.

She's 4 years old. Was born at 27 weeks gestation, developed NEC, had surgery to remove over half her intestines resulting in the diagnosis of Short Bowel Syndrome. Tolerated feeds and has never required any sort of J tube feeding, although she has been on Elecare Jr. and now Pediasure Peptide once weaned off formula. She has also been in feeding therapy for the past year to try to get her volumes up.

She was diagnosed with IBD around age 2 following a colonoscopy and started on Pentasa. SHe didn't tolerate that well and was switched to Apriso ER which she was on up until July when she was hospitalized and the stricture was found.

The GI who was on rotation for her inpatient seemed surprised that she wasn't being treated more aggressively for her IBD and that she was only being given the Apriso. Suggested Remicade following surgery and said she would speak with her main GI doc.

However, the GI who has been following her for the past two years actually took her OFF the Apriso and didn't put her on any other medication. From what I understand, the reasoning was that he wasn't sure if her symptoms were more from her Short Bowel or IBD, and possibly side effects were making things worse.

My daughter has not been the same since her surgery. Before the stricture, she was incredibly active, taking dance two nights a week and taekwondo the other 3 nights a week. Now she's constantly fatigued and short walks tire her out. She's complaining of being sick, her throat hurting, her tummy hurting. She consistently has a low grade fever of 99.4 to 100.4. Her stools are not as loose as they were while she was on the Apriso, but she does have days where they're pretty bad.

We have labwork done every two months. Her blood CRP is never elevated, and typically doesn't become elevated until she reaches that critical point where she's dehydrated and has to be admitted to hospital. However her stool calprotectin levels have been rising. 3 months ago they were 180, 1 month ago they were 240. When she was admitted last year they were over 1000.

I feel like we're in limbo, waiting for her to get worse before anything is done. She's tired all the time, she feels horrible, she's grumpy because she doesn't feel well. Wondering if I should just accept that this is our quality of life, or if I should get a second opinion. THis just doesn't feel right to me.

Thanks for reading, please give me some feedback.

 

[Mehita]

If it doesn't feel right to you, then it's probably not. Listen to your momma gut. Can you get a second opinion? Maybe with the GI who was on rotation?

My son had a small bowel resection and was pulled off Pentasa after surgery. Big mistake. Three months later he had his worst flare ever. He's finally in remission now with the help of Remicade. I completely regret not starting Remicade right after surgery.

Keep us posted...

 

[my little penguin]

Typically pentasa or aspiro does not do much of anything for Ibd .
I would go with your gut and try for a second opinion with the inpatient Gi or at another hospital .
Good luck

 

[cherryblossoms]

Thanks, Mehita. She's since been close to having a few flares, but nothing that required hospitalization.

Penguin - I was reading the same thing, that they were both ineffective solo but in conjunction with Remicade had some effectiveness.

I guess I'm just wondering... why NOTHING? Seriously, right now she's on Prevacid, a multivitimin with iron, and zyrtec. But she's just not WELL. I guess I'd rather be proactive instead of reactionary about this. If she ends up needing more surgery from constant inflammmation and scar tissue being formed, she doesn't have that much bowel to lose.

Thanks for your responses so far!

 

[my little penguin]

Fwiw my kiddo has had three seperate second opinions from multiple pediatric Ibd centers .
Sometimes its good to get a fresh set of eyes to help you figure out if you need to switch docs or just change a med or two .

 

[cherryblossoms]

Thanks, that helps too. I don't want to offend or step on anyone's toes...the doc seeing her now is supposed to be one of the best in the area, but I'm not sure how current he stays with the studies. The inpatient GI who saw DD in hospital is in his same practice, but she's younger and was definitely current with newer treatment options. Our last visit, DD's current doc's nurse practitioner asked ME if i knew why he discontinued her meds and I just regurgitated what was told to me at the previous appt by her. Sigh.

 

[my little penguin]

Oh and most good docs ( gi included) are happy when you get a second opinOn.
Our doc has been very helpful consulting with the second opinOn doc gathering info etc..,
Discussing which place would benefit DS the most .

 

[xmdmom]

Hugs to you and your daughter. It sounds like she's had a rough time.
Something is certainly amiss. The low endurance, fatigue and low grade temp is not normal. Did these symptoms start right after surgery? When was the surgery and what exactly was done?

Has she had labs recently to check her hemoglobin, iron,and vitamin levels?
Anemia certainly can cause fatigue and low endurance.

 

[cherryblossoms]

xmdmom - Yes these symptoms started after surgery. She hasn't been the same since it. Before surgery she was very active and energetic, and happy! Days before her admission even. She was admitted because a flare got out of hand - the diarhea, high fever, then vomiting led to dehydration and abnormal heart rate. Docs weren't sure if it was from a virus or actual flare, it wasn't getting better and after about 4 days they did a colonoscopy and discovered the stricture.

Surgery was to repair the stricture - fortunately no bowel was resected, they were able to snip the scar tissue and release it enough to open the bowel enough. She passed stool about 4 days after that and we were sent home, however had to go back to the hospital within 24 hours due to more vomiting and nothing being able to stay down...Not sure if that's related or not. GI was sure there was still an obstruction, surgery was insistent that there was no obstruction. After over a week and a half of alternating NPO days and trying to test whether she could keep food down her system finally tolerated fluids and solids and we were released home.

She was admitted July 15th, surgery was July 22, released July 27. Then went back July 28 from the vomiting (what must have been an ilieus) and stayed through August 11.

We've been having labs done every two months. cbc w/diff, crp, esr, cmp, stool occult blood and calprotectin. Only things that aren't in normal range are the stool occult blood is always positive and the calprotectin is always high. Her iron is fine now - a year ago during her bad flares she had a LOT of blood in her stools and was anemic and had to take extra iron supplements...I think she had more energy back then than she does now honestly. Maybe it is a vitamin issue - she has no ilieum due to the resection from NEC. Not sure when they last checked that, I always have to remind them to do it and it's come back fine apparently.

Thanks for taking the time to read and reply!

 

[Jennifer]

Since she doesn't have an ileum anymore does she have B12 injections regularly? When was it tested last?

 

[cherryblossoms]

She's NEVER had a B12 injection or any other form of supplementation for it. They always say her levels come back fine... she's 4 now and I find that so hard to believe. It was tested last year sometime...I'll have to call the office and find out exactly when.

Also...I was just reading about EN. They started her on Pediasure Peptide three months ago, and that's made some difference. She's supposed to drink two bottles a day however, and that rarely happens. Our lives are on hold waiting for this child to drink the Pediasure Peptide - it took her 5 hours the other day just for one bottle. I've tried withholding all fun things until she drinks it and she DOES NOT CARE. Every day, twice a day, Pediasure time is an absolute battle nightmare. Got 1.5 bottles into her today and this evening was the first time she's said she's had no pain all day.

 

[crohnsinct]

For starters, it is rare that a child is taken off all medicine for Crohns and able to sail along smoothly and I would be suspect of that decision and want to hear from another doc that it was the right decision.

Since she was in the hospital so much did they test her for cdiff...she doesn't have all the usual symptoms but just maybe possibly something she caught while in the hospital????

B12 blood levels can come out normal but what you want to make sure they test is the Methylmalonic Acid. Read more about it here
http://www.crohnsforum.com/wiki/Vitamin-B12

 

[Jennifer]

When you call find out the exact number too. A lot of doctors will just say that the numbers are in the normal range but "normal" is different for almost every lab and plus if she's on the low end of "normal" then she can still have symptoms of a deficiency.

We have a section on the forum for EN here yet many of the parents in this section have dealt with EN and I've heard them talk about how difficult it is to get the kids to drink it down. Some have mentioned other brands and formulas and even mixing something into it to make it more palatable.

 

[cherryblossoms]

crohnsinct - they did test her for cdiff, I think two different times even. I know she was on contact precautions for a while until the results came back negative.

Thanks for the link to the information re: b12 and the Methylmalonic Acid. I'd read something about that - must have been a year ago when I requested the b12 test...mentioned it to the nurse practitioner and was met with some confusion, as I recall.

I have to be more agressive about my daughter's care. The more I'm thinking about this and remembering, the more aggravated I'm getting. I can get copies of her records, right? This is just so not fair to her to have such a low quality of life and be in such pain all the time.

 

[cherryblossoms]

Jennifer - her feeding therapist suggested making smoothies with it. Tomorrow I'm going to add some frozen strawberries and blend that up. And buy some bananas for the next one (we're out right now!). Hopefully the fresh fruits don't mess her system up too badly if I go that route. But if it gets her to drink it faster than 2 hours it has to be a good thing!

 

[crohnsinct]

Is she doing the pedisure peptide for supplemental nutrition or as Exclusive Enteral Nutrition for gut rest.

Certainly EEN has success with bringing down inflammation but it only works for as long as you are doing it. Once you reintroduce food it is only a matter of time before the inflammation returns. For this reason, docs will usually introduce a maintenance med at the same time a starting EEN as the maintenance meds usually need some time to get to therapeutic levels. THe EEN is used instead of a steroid to attack the inflammation and get some good quality nutrition into the patient.

If supplemental perhaps a change in formula would work. With her surgery I am not sure if she needs an elemental formula but there are quite a few different ones out there. Perhaps your GI/nutritionist can give you samples to see which she likes best. My daughter did 8 weeks EEN with Boost and Ensure and the taste wasn't that bad but I know they are the more difficult to digest. Would drinks like Carnation Instant Breakfast be an option? They are super yummy.

Some hints for getting formula down:

Serve very cold
Serve from a cup/can/etc with a very small opening to lessen the smell
Drink with a straw...helps shoot the formula back past the sensitive taste buds.

Maybe try rewarding for each shake that she drinks rather than take away things...yes that is bribery and we have all done it. She is young so maybe you will get off easy...teens like to be paid...my daughter got mani/pedis for each week she completed.

I am sure others will be on shortly with more advice. Hang in there you are doing a great job with a very difficult situation! :ghug:

 

[Tesscorm]

Here is a link for Boost recipes - the recipes use Boost shakes but you can try some of their ideas with Pediasure. :ghug:

http://www.boost.com/boost-in-your-life/boost-recipes

 

[Maya142]

We used bribery to get my daughter to drink 2 Peptamen jr a day. They don't taste good at all so to be honest I couldn't blame her when she said they tasted too gross to drink.
However, bribery worked wonders and she quickly got used to drinking them. Now she's so used to drinking them that she misses them if she forgets to drink, and no bribery is necessary!

 

[poppets mum]

If she can tolerate peanut butter with banana or on its own with pedia sure it really does taste yummy.

 

[DustyKat]

Without an ileum and a Crohn’s diagnosis as well, then over and above B12 MMA testing also have bloods drawn for:

Iron Stores
Folate
Vitamin D
Magnesium
Zinc

Since her Faecal Calprotectin is continuing to rise then something is definitely going on, not to mention her other symptoms. Since you are now 6 months post op and Apriso free what is the GI saying about the current situation?
It clearly isn’t the Apriso feeding into any problems.
Did the GI say how long they were prepared to wait and watch before making their decision as to what was going on?

The decision to continue with maintenance medication post op appears to be a highly individual one by the medical profession. For us all the GI’s we have ever dealt with have taken the more preventative approach, that being, it is better to go on the attack rather than sit back and play catch up. This is my personal view on the subject:
I think most would agree that Crohns is not curable at this point in time and therefore the aim is to gain remission and stay there for the optimum period of time. My children’s surgeries put them straight into remission and they have stayed there but I view Crohns as a disease that is lurking and waiting to strike when the time is right, so if I can regulate that response to some extent then that's what I will do. I see Imuran, the medication my children are on, as a preventative medication much like Pulmicort is for an asthmatic, it stabilises your underlying condition so hopefully you can avoid or at least lessen the occurrence of a full on asthmatic attack.
Another point I think worth mentioning is while ever they have Imuran in their system then should the need arise to increase the dose they do not have the waiting period for the medication to start taking effect.

I can certainly understand why the surgeon chose a strictureplasty over resection but since your daughter has not been the same since her surgery would it be wrong to think that perhaps the surgery was unsuccessful?

Good luck mum and welcome aboard. :ghug:

Dusty. xxx

 

[cherryblossoms]

Thanks to all the replies. Shortly after I posted this, a bad virus went through our household (DS picked it up from his father's house). DD had to be hospitalized for four nights because of dehydration and she just couldn't recover like the rest of us - I'm sure THAT sounds familiar.

While I was there, I did see the other GI doc from my practice that spoke to me about Remicade over the summer. We have an appointment for a consult with her tomorrow. She really listened to my concerns in the short time we spoke in the hospital, but not having DD's chart in front of her there wasn't much she could determine. Told me to have the office set aside a whole hour for our appointment so she could thoroughly go through DD's chart. We'll see what tomorrow brings. She was taken aback when I told her how DD's stool calprotectin is rising, yet she still isn't on any kind of medication. I'm hopeful, I'll report back with how it goes!

 

[Farmwife]

Hi and a late welcome.
My girl Grace is five and suffers with this disease also.
I hope your next appointment goes well. :ghug:

 

[fozheart]

This is probably off, but do you think it would be beneficial to see a specialist outside of the GI field? I only ask, because I would want to make sure that those fevers and fatigue are not due to something else! A different kind of specialist (like a pediatric hematologist), might look at her from a different angle and cover a few more bases.

 

[cherryblossoms]

Thanks, Farmwife! I'll check out the other group too

Foxheart - that is honestly something I hadn't considered at all...something to look into definitely, thank you! I grew up in Hampton, btw; moved to FL about 8 years ago tho!