Crohn's Disease Forum » Parents of Kids with IBD » Lucy having some issues.


12-07-2018, 09:14 AM   #1
polly13
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Lucy having some issues.

Hi everybody

I know I havn't been on in a good while and I suppose like many when things are good, you forget that Crohns disease is in your life and you get lulled into a false sense of security and then the rug is pulled from underneath and all hell breaks loose with this insidious disease. This is what happened to Lucy last June...

It started with a high temperature and sore throat, I took her to the out of hours GP Service, who assured me (following questioning and probing) that she had tonsillitis and needed an antibiotic - proceeded to start the antibiotic as it was a holiday weekend and I felt myself that the doctor was correct.... and meanwhile a week later there was no improvement so my husband took her to our regular GP (who was on leave and had a locum covering) locum said no tonsilitis and prescribed prednisone .... Alarm bells and got on to our GI nurse who saw her that day and swabbed throat for virus and bacterial infections. Meanwhile Lucy couldn't take her Humira. Never really got to the bottom of the throat issue, but she was having temps (very high in excess of 39 pretty much daily, was in constant touch with GI centre.
The upshot was that Lucy didn't get her Humira for 6 weeks and her methotrexate for 8 weeks. Meanwhile she was getting very ill, lots of trips to the bathroom, bloody stools, losing weight, extremely sore mouth and lots of belly ache and extremely fatigued. When she finally got back on her Humira she did improve but not fully. We saw her GI 8 weeks ago, her regular bloods were fine ( they had improved consistently from the time she went back on her Humira) and while her humira levels were fine her antibodies were high. So
- Loading Dose of Humira and regular dose thereafter
- EEN 8 weeks (which finishes today)
- Double Methotrexate from 2.5mg to 5.0mg.

Back to GI on Tuesday for consultation and probably Humira levels again - she is an awful lot better and continous bathroom use has stopped, stools while not fully formed are more normal (so she tells me! - she wont let me look) Her regular bloods are fine, her energy levels are much better and probably at normal level............... but she still looks awful, she hasn't put on any weight and looks to have lost about 1.5 kilos (this is after loosing 3.5 kilos during the summer) and I am worried.

Im extremely concerned that Humira has stopped working and know the options are limited - don't think Stelara is approved or Crohns in Children here ( I know they are using it in older kids but she is still only 10), Remicade caused allergic reactions and it didn't work so thats most likely not an option to try again. Feel like a rookie Mom again because she has been so well for so long and am look for advice as to what I should be asking him on Tuesday and also what did you move to if remicade and Humira ceased to be an option for your little on.

Also I have another huge issue with her insofar she wont tell me or let me see her stools, I had seen evidence of blood when she forgot to flush but aside from that I am getting nowhere near having a visual on the poos. She absolutely hated EEN and says she is never doing it again etc. etc. and I am worried that she is potentially hiding the truth from me as she is afraid she will have to do another 8 weeks (dietician assures me she wont!) How have you managed this issue as your kids have got older?

Many thanks
Polly
12-07-2018, 11:39 AM   #2
pdx
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Sorry that things have been so rough for so long. I agree that you should get Humira levels again--if the antibody levels have decreased, then it's possible that Humira may keep working for her. My daughter developed Remicade antibodies a couple of years ago (after dropping methotrexate for 6 months), but after we added methotrexate back in, she hasn't had Remicade antibodies now for 2 years.

I think you also might have room to increase the methotrexate. My daughter is currently taking 15mg, and I think that's a fairly common dosage.

As for getting a look at her poo, some parents on the forum have had luck asking their kids to text them a photo--gives the kids a bit more privacy, so you're not all standing in the bathroom discussing.

Really hope that this all ends with Lucy able to continue on Humira.
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
12-08-2018, 01:45 PM   #3
Maya142
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Lucy's only 10 right? What is her reason for not letting you see the stool? Is she embarrassed? Would taking a picture and showing it to you later help? Does she understand how important it is for you to know how her stools look? I would assure her that the dietician will not make her do EEN for a second time if there is still blood (but make sure that is true before saying it).

Another option - show her the Bristol stool chart and have her write down every BM in a notebook. That can be kept in the bathroom. Also have her record if there is blood.

You can even use apps - we used GI Buddy for a while. My daughter had to record every BM and say the consistency, whether there was blood and/or mucus and how much urgency she had.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-18-2018, 05:08 AM   #4
polly13
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Thanks all - we met the GI last Tuesday and as I suspected not overly happy with her. She had also lost more weight while on the EEN as I had suspected. He also felt there were minor changes in her bum (Lucy's initial presentation was severe perianal disease) so that is a red flag. Re did the Humira Levels and Anitbodies (we will have to wait about 2-3 weeks for the results of those tests to come back) He also did Remicade anitbodies just to see what they are like. He will scope first week in January at which point he will have all blood work back to make a proper decision on how to proceed. He spoke to me about he possibility of moving to stelara or maybe giving remicade another go. She is still a bit miserable but for now I dont think she is getting any worse. Roll on January and hopefully this will get sorted.
12-18-2018, 12:27 PM   #5
my little penguin
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Glad she is getting scopes and the doc is forming a plan
Did she have an allergic reaction to remicade prior ?
We were told once he had an allergic reaction to remicade he could never have it again
He had NO antibodies to remicade by the way

Stelara has been ok so far
Just took a very long time to work
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12-18-2018, 12:33 PM   #6
Maya142
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My kiddo did not have allergic reactions to Remicade and actually tried it 3 separate times without a reaction. She did not have antibodies whenever we did levels tests.

Lucy's case may be different though, if she's already reacted to it. Typically, once you have a reaction it is either stopped or they try the infusion again, pre-treating with Solumedrol and Benadryl. If the child reacts again, then Remicade is stopped.

Really glad they are doing scopes so soon!! Hang in there!
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