Scopes outcome for H

[Pilgrim]

She was a little trooper of course.

To recap she had scopes ordered after symptoms good, labs good, but fcal showed high result (over 3000).

We did get some symptoms creep in while we were waiting on scopes. Just abdo pain after eating but bm's good.

Unfortunately, scopes showed ongoing inflammation in her colon and terminal ileum. He said a lot of it looked like top layer only (more UC like).

We have to wait 5 weeks for the biopsy results. She already had granulomas in her dx scope 2 years ago so I think her Crohn's diagnosis is solid, but it was interesting the way he was questioning.

We choose between: a. Upping Humira to adult dose. b.staying at ped dose weekly and adding MTX or c. switching to Remi and Mtx combo.

I asked for levels and antibodies testing which is in the works.

 

[Maya142]

Wow, 5 weeks for the biopsy results? Ours are in within a week and I feel like that is a long time when you are waiting .

Way to go H, she is always a trooper!! Sorry to hear the scopes didn't look good . Doing Humira levels and antibodies makes a lot of sense before making that decision.

Do those tests also take a long time? I would be worried about leaving the inflammation if they're also going to take 5 weeks or more. Was there any talk of steroids or EEN to get the inflammation under control?

Sending hugs :ghug:!!

 

[pdx]

Sorry to hear about the scope results, and I hope that whatever treatment change you eventually choose works well, and quickly! :ghug:

 

[Pilgrim]

Maya, yes it is a very long time to wait on biopsies. This is a regular situation at this hospital. Two years ago we waited 11 weeks for results. It's ridiculous.

Actually, regarding levels and antibodies testing I want to give my heartfelt thanks to this forum. I have learned so much here and people have been so forthcoming with stories and information. I had to ask for levels and antibodies testing and I was told they never had done it for Humira. Fortunately, my GI was right on it and they called Humira and arranged it, took her sample in hospital. If I hadn't asked I would have to guess before making a med decision. What do people do who can't advocate? This forum has been the difference in getting proper treatment and this isn't the first time.
No changes until we get results so I will bump up her EN on my own while we wait.

 

[Tesscorm]

I'm sorry the results weren't better. And, sorry that it will take so long for the biopsy results! Waiting is horrible at any time but even harder when you already know there's a problem! Lots of hugs (and patience) while you're waiting.

And, yes, good idea checking levels! If there's a possibility that a dosage change or the addition of mtx with humira might be the answer, I would want to try that before giving up on it completely. (Especially, if I remember correctly, it would be quite a distance for you to travel for remi!)

And... couldn't agree with you more on the help/support from this forum! It was invaluable to me when S was diagnosed... S has been good for a long time and, maybe he would've been with or without the knowledge I gained here but, maybe the little tweaks I made to his care and my constant questions/badgering kept his GIs on top of their game?? IDK but I'll always be grateful for the help and advice I found here!

 

[crohnsinct]

I asked for levels and antibodies testing which is in the works.

I am so proud! :medal1: Our little Pilgrim is so grown up!

How close are you to the next Humira dose? This will influence the levels that return.

This is just so weird because our GI just popped into infusion to shoot the breeze and he was saying in Canada levels are routinely done and paid for and that the USA is the only backwards country when it come to levels and paying.

Ugh! I digress....

So sorry about the continued inflammation but I guess if you have to have it top layer is good news as is less symptoms etc.

I really hope the lab surprises you and gets those results faster so you can get on with the business of wrangling that darned inflammation!

 

[my little penguin]

Big hugs
That is such a long time to wait for biopsy results
We have had them in a day but as long as a week

 

[Pilgrim]

So that is why they called to find out when her next dose will be Tesscorm, makes sense now! Part of me just wanted to jump right over to Remicade just so she could experience getting spoiled,(although the nurses who do her injection do spoil her albeit only for a few minutes. ) But Humira is a known quantity for us and we'd like to play it out if we can keep it working.
I really don't want to add mtx before summer here and have her working through those side effects.
I don't know, CIC, maybe they get regular paid for testing at Sick Kids in Toronto but funding seems to differ from province to province and also per hospital. I'm just glad I've made the transition to well spoken nag so we get what we need! There's a new project called "Pace" (if I remember correctly ) up here which is supposed to link up IBD centers across the country to unify guidelines for treatment and offer better access to other GIs. Maybe that will help. They just announced it on the Crohn's and Colitis Canada site.
I assume the star you gave me entitled me to an extra glass of wine last night.
MLP, the time to get biopsy results is ridiculous. It really affects getting treatment into place.

 

[Farmwife]

I'm just trying to get updated on everyone one.
I'm sorry about the inflammation.
How had school been going for her?

 

[pdx]

I really don't want to add mtx before summer here and have her working through those side effects.

I just wanted to reassure you that many kids have very minor (or no) side effects from methotrexate.

 

[my little penguin]

Second you may not see side effects
With injections alone ds had side effects
With pills added to humira only mouth ulcers that went away with higher folic acid
Good luck

 

[Maya142]

That's definitely true. And even if she does have side effects, there are ways to deal with them - upping folic acid, Zofran for nausea, switching from pills to shots (or vice-versa), giving MTX at night, so she can sleep through the side effects.

My older daughter has been on MTX for years. She has mild nausea with it but no other issues.

 

[DanceMom]

A's only side effect with Mtx (injections) was hair loss.

 

[Pilgrim]

I'm just trying to get updated on everyone one.
I'm sorry about the inflammation.
How had school been going for her?

:hug: Farmwife!!!! I haven't seen you here for awhile. Can you update one of your little Farmgirl threads and let us know how everything is going?

I count school as a good success this year. I think in the end she has missed on the average one day a week. Doesn't sound great, but I was pleasantly surprised. I have gone in to the classroom or picked her up after school and she has looked truly exhausted. But she made it through the day and was happy to have gone. A lot of the time she was ok energy wise at the end of the day.

Our biggest school problem was and is, oddly, two separate and prolonged episodes of frequent urination. The first time I had her checked by a GP and there was no UTI. The second time I didn't bother because it seemed like the same issue. It goes on for WEEKS. Every 20 minutes to an hour in the bathroom to pee. She has to plan around it at school. I wonder if it is associated with her bowel inflammation. I have no idea.

We had one problem with a teacher not allowing her to drink her Ensure because "she had to finish her other food first" (like it was dessert, lol!). That was ignorant. And another teacher told her to put her medic alert bracelet in her backpack. Both substitutes.

She is worried about 1st grade because the bathrooms are not located in the classroom. But we'll cross that bridge next year.

Compared to a lot of the kids here, I think she didn't have a tough year. How did it go for Farmgirl?

 

[Pilgrim]

Thank you to all who chimed in about Methotrexate. I'll try to have an open mind about the nausea. What about the sun exposure issue?

H already told me she would prefer the injections to the pills if we add Methotrexate. She just can't swallow them. We worked so hard to teach her with the tiny zinc pills but she vomits.

 

[Maya142]

My older daughter has actually been ok on MTX - she wears sunscreen every day and no real issues.

My younger one has actually had worse sun issues with Imuran - she burns even with sunscreen.

For both of them, we have just been told that they absolutely have to wear sunscreen daily. They didn't like it at first, but now it's a habit and they never think about it.

My younger daughter recently had a mole removed on her scalp that had doubled in size over the last 3 years. It had not become cancerous, but they were worried it would. It has taken forever to heal and definitely reminded both girls that they need to be careful in the sun.

The MTX shots are NOT like Humira. It's a teeny tiny needle. My girls both gave themselves the shot eventually. In the beginning we used ice, but both girls said the shot hurt so little that there was no need to use it! The medication does not burn like Humira.

 

[Pilgrim]

H said she would have a Flu shot everyday instead of Humira if she could.

So, they can go out in shorts and a t-shirt and be ok as long as there is sunscreen? How about swimming at a lake or beach?

Summer is so short here. For me it's a huge quality of life issue not to be able to enjoy it.

 

[Maya142]

My girls definitely go out in shorts and a t shirt - no issues. Both my girls like to bike during the summer, and both played on their high school soccer teams (long practices outside) while on MTX.

We took the girls to the beach recently. My younger daughter agreed to wear a hat and rashguard and so she was pretty covered and didn't burn (besides her nose!).

The older one said no way and wore a skimpy swim suit but still did not burn .

We take a lot of sunscreen with us but don't do anything else differently!

Of course, it depends on the kid - I expect that there are some kids who are very sensitive to the sun while on MTX. That just hasn't been our experience so far (thankfully).

My girls thought the MTX shots hurt least in the belly. They used to use their thighs. My older one uses Buzzy now and says she doesn't even feel the needle.

 

[CrohnsKidMom]

I'll chime in, Pilgrim, and give you our MTX experience... my son was on MTX injections for two years, then switched to a lower, oral dose when he started Remicade last summer. The injections did make him quite nauseous and gave him a metallic taste in his mouth. But he doesn't seem to have any side effects from the lower oral dose. My son is sensitive to the sun, but he is fair anyway. He does wear shorts and t-shirts, but I give him a good coating of sunscreen before he heads to school and he does fine. You just have to be diligent in reapplying if you are spending substantial amount of time outside.

 

[my little penguin]

Ds is sensitive to the sun
Big floppy hats when outside work plus sunscreen
And long sleeve rash guard shirts /board shorts /swim hood and zinc oxide on the face ( the zinc oxide is colored so we use it as face paint to make Spider-Man etc...
The little kids in the beach eat it up and ds is famous


But ds has had issues since he was first dx and started 6-mp plus applies a lot of steriod creams to the face for dermo stuff which basically makes you very sun sensitive

 

[sleepallday]

I don't have children but just wanted to chime in and say that it's so nice to see such a supportive group of parents looking out for each other. You all seem like such lovely people.

Sending well wishes to you and your families. xx

 

[pdx]

We don't do daily sunscreen on school days, since middle school recess is only 20 minutes. On outside summer days, we use sunscreen (and rashguards for swimming), and we haven't had sunburn problems. I do generally try to have both my kids avoid being outside from 10-2 when possible.

My daughter also has the frequent urination issue, and we haven't been able to figure out its cause. She has a 504 plan that lets her leave class to use the bathroom any time, without needing to ask, so it's not a problem for her at school.

 

[DanceMom]

We live in FL, so sun exposure is inevitable. I apply sunscreen every hour when at the pool or beach and we never had any issues. No sunscreen for PE or recess but I would send her with sunscreen for outdoor field trips like theme parks. A does not burn easily though.

 

[Pilgrim]

We don't do daily sunscreen on school days, since middle school recess is only 20 minutes. On outside summer days, we use sunscreen (and rashguards for swimming), and we haven't had sunburn problems. I do generally try to have both my kids avoid being outside from 10-2 when possible.

My daughter also has the frequent urination issue, and we haven't been able to figure out its cause. She has a 504 plan that lets her leave class to use the bathroom any time, without needing to ask, so it's not a problem for her at school.

Did you go through any diagnostic channels for the urine thing? Does she leak? H changes her undies about 6 times a day. I don't notice anything obvious but they REALLY bother her. We don't have 504 plans up here but this year the teachers were great with just a note of explanation about Crohn's.

 

[pdx]

Did you go through any diagnostic channels for the urine thing? Does she leak? H changes her undies about 6 times a day. I don't notice anything obvious but they REALLY bother her. We don't have 504 plans up here but this year the teachers were great with just a note of explanation about Crohn's.

We had her tested for UTI's a couple of times, but she didn't have one. We haven't done any other testing, because it hasn't really been a problem--no pain or leaking. My daughter has a lot of physical sensitivities, so I think it may just be that she is really sensitive to the feeling of "having to go," even when her bladder isn't very full. At bedtime, she'll go 3 or 4 times during the hour before she falls asleep, but then she'll sleep through the whole night without waking up to use the bathroom.