Weight percentile, being a teenager, and family stress

[my little penguin]

How long has she been on humira?
DS it took 6-8 months to really work so much so we were thinking of dropping it in August past year.
Adding Imuran or Mtx does increase the effectiveness of humira as does increasing dosing .
Can you bug sick kids to get her in sooner ??

 

[Tesscorm]

Only hv a minute but wanted to suggest something (if u hvnt already tried this??)... If u can't get sick kids to move up apptmt, if/when u feel she needs to go to ER again, take her to sick kids ER - she'll see their GI then. It's what our ped suggested bfr S was diagnosed and what we did. That is how S was diagnosed and ended up being an outpatient with their GI until his transfer to adult GI. Even if you font want to move her ftom your reg GI, you may end up with your second opinion sooner.

 

[SupportiveMom]

D has been n Humira 6 months as of the 22nd. It will now be hard to know if it ever works because she is on prednisone which masks everything. I will wait for the blood results to make a better decision. I do know I don't want her on Humira, Methorexate & Imuran + prednisoone. That is overkill.

Tess, Honestly I want to avoid the hospital. The last 2x she has been in the hospital she has picked up c diff. If she has to go to the ER at this stage it is because something unpredictable happened.

I have done that trick before going to ER @ SickKids. It is the only reason we got seen by a peds GI in 4 months instead of 6. They have seen us for a preliminary already. Our follow up is what is taking so long, almost 5 months since we went in the 1st time. I am glad for the 2nd opinion but if I had to deal with this as a sole source of treatment I would go mad. I see our GI now every month, and in the last 6 weeks have spoken to her directly every week.

 

[SupportiveMom]

Latest news - Humira levels are right in the blood. After a 30 minute discussion via phone we are deciding to drop the Methotrexate & add Imuran to the Humira (keeping the dosage at bimonthly). While the one less needle a week is fantastic, I am no more hopeful for this treatment than any other we have tried. Ugh... at least after this change we will have tried every drug available for pediatric Crohn's so we don't have to do the wait game...

Either way we are now stuck on prednisone longer as a 'bridge' to changing meds. oh what fun...

 

[Maya142]

Hope this combination works for you! We just added Imuran to Remicade (just started yesterday!).

 

[SupportiveMom]

Maya I hope it works well for you. Let me know if any side effects pop up.

 

[SupportiveMom]

Yesterday we were at SickKids for most of the day. Seems we are now changing her diagnosis, AGAIN to Indeterminate Colitis. I know this is part of the purpose of getting a new team of doctors & second opinions but this was not what I was expecting from the visit. It has let me feeling more anxious and uneasy.

Because she responds to meds like she has UC, but her 1st MRE & scopes showed Crohn's they are now unsure. The slides from the previous MRE's are being pulled in storage (glad we got them done at SickKids!) and our new doc says he probably wants a new scope even though the last one was done in January 2014.

The plans are this:
Promethus test for determining UC or CD (not 100% reliable)
Scope
Added Mezavant
Imuran levels tests & possible adjustments to prescription

get off of Prednisone if possible

If UC -
Jpouch surgery
potential drop/change in meds

If CD -
probable colectomy, possible Jpouch surgery (less likely)
keep readjusting meds

D is the best she has ever been after she added Imuran, going 4-7x a day, It doesn't appear to be blood & no more waking up at night (though I think she tweaked her schedule to stay up past midnight when she would normally go and then goes to sleep, not sure on this). Pain is better. She is up to 110 lbs! The thing that is concerning me is her CRP jumped high at the blood tests 2 weeks ago (don't now levels as our regular GI is on vacation) & her iron is very low. New blood work was taken yesterday so there will be some comparison.

I am freaked out about potential surgery. I knew this was a possibility and why we were being moved over to SickKids and getting a 2nd opinion, but hearing it from another doc made me scared. How do I accept this? Is accepting surgery giving up on any chance things could get better?

I am the one in the house that knows all this stuff. Everyone looks to me for answers so trying to make a decision on this with my husband isn't much help. He typically defers the decision to me. Leaving the appointment D gave me her thoughts on this new revelation, but they were mostly how things would look on the outside that people might see (which I would expect to be a concern from a kid, especially a teenage girl). Now waiting for our next appointment the end of this month....

 

[Clash]

I'm choosingg to face C's possible surgery as a tool that may give C the ability to gain weight on his own and possible vertical growth. That is not to say I'm not nervous, I truly am. Our surgery won't involve the creation of a jpouch since he has CD and his CD doesn't involve issues with the colon(excepting the cecum).

I truly hope the tests go well for her and the final decision gives her a full life with long remission! I'm sending hugs your way!

 

[SupportiveMom]

Clash what type of surgery is he facing?

D is now gaining & growing finally. I do like the thought of surgery helping her to maybe reach her potential.

 

[Clash]

I'm just assuming since the consult is next week but I think they'll be suggesting and ileocecal resection.

 

[SupportiveMom]

How are you going to decide to go forward or not? I wish this was just a decision about my own health. Then only I would live with the consequences of the decision.

 

[Maya142]

Didn't D have disease in her esophagus and terminal ileum? Just wondering how that could be UC and not Crohn's?
Sending HUGS:hug:

 

[SupportiveMom]

Yup that is what I know, esophagus, terminal illium throughout her colon. I don't know how that equals UC.

The 1st scope was when she was inflamed everywhere as she went 7 months without a diagnosis losing weight etc. The 1st MRE was after she started Remicade and looked better than the scope but still was elsewhere. I think the doc is hoping it wasn't actually CD but the lack of treatment. Her last scope in January shows no inflamation anywhere except her Colon.

She responds better to UC meds than CD meds for those that it is more prescribed for one or the other.

I can't imagine coming back with a UC diagnosis.

 

[SupportiveMom]

We had our appointment 2 days ago at the hospital to confirm what has been the obvious, D has crohns. I know she was being thorough when suggesting maybe not crohns at our 1st visit. She has it in her small bowel, or at least did in Nov. Of 2012. He last MRE didn't show it and she is guessing it healed at that time. As they say... pathology doesn't lie.

This makes surgery more problematic. We have been given 2 last options before surgery: Stelara (which is still under trial here) & some type of 4 antibiotic cocktail (docs words not mine!) That contains Flagyl, Amoxicillian, and 2 others. We started the approval for Stelara yesterday in hopes to do the 1st dosage next week. The cocktail is a last resort due to d's allergy to penicillin. They will find a replacement for it but it loses its effectiveness somewhat with the replacement. Stelara should show a change in 2 weeks (by 2nd dosage). If not we will give it a month and then move to antibiotics.

In the next 6 weeks we are scheduling a pill cam to check out the small bowel and see what areas we would cut if surgery happens. She also will get another colonoscopy & maybe MRE. That will make her 3rd in 2 years. We will have a surgery consult mid october to explain everything. Doc said it is highly likely she will have a permanent ostomy.

We both cried when the doc said that. I never wished more that she has UC so she could have a j pouch instead. I know this crushed her. She never shows her mid drift except for swimming but she got really down about it. Another tough fall & winter is ahead I think. One positive, we drop 1 med, mezevant, which did nothing but bring in some headaches I think. Still waiting on confirmation on if we do Humira & Stelara or we also drop Humira.