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GI Check-Up

A had her 3-month check-up this afternoon and it was a bit of a whirlwind appointment for some reason. Overall, she's been managing okay. Her main complaints have been her intense headaches and her sore/itchy bottom.

We were given 3 options for the headaches - see a Neurologist, try Elavil (which requires an EKG first), wait and see if they go away on their own. We opted for the wait and see approach.

He looked at her bottom (which was very red) and wasn't quite sure what the problem was. It could be red due to inflammation related to IBD or because she scratches it. He swabbed her for strep but said it could also be pinworms. We're waiting on the swab results and if they are negative he'll treat for pinworms. If that doesn't help she'll try a round of Flagyl. Nothing is ever black and white for her.

He wants to see her again in 2 months. At that time we'll discuss the possibility of scopes and moving to Remicade. I'm not excited. She isn't doing terribly but he wants to be aggressive and I understand that. Trying not to worry about the what-ifs for now.

As A was brushing her teeth tonight she came out and told me that the roof of her mouth has been bleeding the last few times she's brushed her teeth. I look and she has two small sores next to each other. She says they only hurt when she touches them with her tongue or toothbrush. She's never had mouth sores before and I'm not sure if it is Crohn's related or not. Hoping she just ate something hot that scalded her mouth.

Labs tomorrow morning and hopefully they're good. I can't take any bad news because my head is still spinning from the mention of Remicade.
 

crohnsinct

Well-known member
The bottom issues can also be yeast. Especially being a dancer. Don't ask how I know!

I sure hope those mouth sores aren't anything and that you can stay safely tucked away in your bubble!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Have you tried diaper rash creams or any other creams for the itching? It may help with that at least and help reduce the scratching (which only causes more itching from what I remember as a kid). Did the doctor do a full rectal exam or just look at it? Internal hemorrhoids can cause itching as well.

I used to get canker sores/aphthous ulcers a lot as a kid. Salt rinses or for me I just put salt directly on them (I think it was my dad's idea originally but hey, it worked better for me). Here's info on them if you need it: http://www.mayoclinic.com/health/canker-sore/DS00354

Could the headaches be related to dehydration or a vitamin deficiency (has she had blood work recently to check for any vitamin deficiencies?)?
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm sure it's possible, but usually aphthous ulcers are found on the tongue, gums and inner lips. My son's were always on his tongue. Has she had her vit B levels tested. We, and others here, have got relief from mouth sores with added vit B supplements.

I'm no doctor, but I don't think I'd jump from either strep or pin worms w/o a little more investigation!
 
We're treating Grace for a yeast infection in that area but I'm still not sure what it is.

Let us know what you find out.
 
Jennifer - We've tried diaper rash cream on the area but it doesn't seem to make a difference. Occasionally the redness/itching/burning will resolve on its own only to come back again a few days later. Very frustrating.

Crohnsinct - I have thought about the tights issue. She is now only wearing them for ballet (1 hr/1x wk) and washes after each wear. For other classes she wears underwear/shorts.

Dexky - I know the roof of the mouth is an odd place for an ulcer but A is an odd child, lol. Still hoping it is something else. And I'm not sure what you mean about "jumping from strep to pinworms without a little more investigation." What would you suggest?
 
If it is a yeast thing you can also use over the counter Lotrimin or a store brand. Our pediatrician had me do that for diaper rash with my son. It is cheaper, works faster and does a better job at keeping it gone. (Just a thought...)

Hope her mouth feels better soon :(
 
Grace's GP just prescribed Nystatin for her.
I hope it works.
these poor kids have enough going on without these type of things.

I'll let you know.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
And I'm not sure what you mean about "jumping from strep to pinworms without a little more investigation." What would you suggest?
The doc made it sound like those were the only two possibilities and would be treating her for pinworms if she was negative for strep. Maybe I read it wrong?
 
We are hoping it is strep or pinworms and not perianal disease. He said pinworms are common in kids and it would be an easy fix. If it turns out that the inflammation is IBD related we will try another round of Flagyl since it worked well for her last time.
 

crohnsinct

Well-known member
Yep! Nystatin works lickety split...if it doesn't then you know something other than yeast is going on...that's what made them look at O a second time, biopsy and what do you know....psoriasis.
 
Yup, Grace's redness is clearing up already. It was yeast.:dance: THANK GOD.

We sure are a strange bunch.:rof:

I hope it's an easy fix for her. HUGS
 

DustyKat

Super Moderator
I hope the problems that A is experiencing are easily fixed DanceMom, bless her. :ghug:

Unfortunately, for Sarah severe headaches were a sign of active disease. :(

Dusty. xxx
 
Oh Holy liver numbers....lol

Those are always the first labs back and they make me the most nervous. Bilirubin is only slightly elevated, Alk Phos is very low but holding steady at least, AST is high for the first time (but barely so), and ALT is now 86 (norm is 8-24). Not sure if these numbers will concern the GI or not.
 
Not sure about the other bloods, but ALT is the one we always keep an eye on the most. When my son reached about 90 they got concerned. Will they let you know if they are concerned or is "no phonecall - good news"?
 
GI called. He is slightly concerned about her numbers but is hoping her body turns things around. We will test again in 10 days. If her numbers are any higher it is on to scopes and Remicade.

Meanwhile, she is in bed with a headache/stomachache. This disease is awful.
 

DustyKat

Super Moderator
{{{Hugs}}} to you DanceMom...:ghug:

Thinking of you and hoping more than anything that A is soon on the mend. :heart:

Dusty. xxx
 
Friday was a rough night. A's headache was so bad she wouldn't eat, drink, or even speak. She also felt nauseous and just downright miserable. Yesterday was better. No headache, but she spent a good portion of the day in the bathroom. Today she seems more like herself. I'm wondering if this is due to the prednisone taper. Friday is our step-down day. I guess time will tell.

On a positive note - her mouth seems to be fine so I'm guessing it wasn't an ulcer.

Still holding my breath.......
 
Prednisone worked well for us, it put my DS into remission.

But it did cause headaches and bumps in the road while tapering.

It got much better as time went on and stopped completely about a week after we were done with the Prednisone.

((((Hugs)))))
 
Strep is negative. GI is thinking about testing for pinworms because he doesn't want to add any unnecessary meds right now since we are watching her liver numbers so carefully. Getting tired of holding my breath, lol.
 
I have big plans for tonight! They include a popsicle stick, tape, and a flashlight! Any guesses? lol

This will probably be followed by my funeral because A is going to kill me when she wakes up and discovers what I'm doing.
 
Well, he wants us to try the Preparation-H anti-itch cream so I put that on her before school. We'll see. I'll email him tonight to update and if it doesn't work then he's going to push labs up so we can develop a plan sooner. I'm learning that things are ever-changing with this disease!

Also, I'm noticing that this past week A has woken up with a stomachache and only eats a little breakfast (very unlike her). Typically she feels better an hour or so after getting to school. I think this correlates with taking the Prednisone in the morning and it needing time to kick in. Fridays (step-down days) she feels bad the whole day and progressively worse by night. Sadly, I think she has become steroid dependent and I'm unsure of how she'll do once off of them. Anyone else's kiddo struggle like this and then do okay once the taper was complete?
 
Maybe you just need to taper more slowly? Stretch it out over ten days instead of seven? DS is tapering now too and was at five days. We needed to extend it to every seven days.

FWIW, I can never get DS to eat breakfast even on good days. He says his stomach is still sleeping.

DS tapers okay, but in the last two years never gone longer than four months w/o another round of steroids. He's okay for that short period before it all starts up again (this was all prior to being on Aza).
 
We are doing 5mg per week. GI wants her off ASAP because she has been on them since mid-May (so a little over 4 months). She did fairly well until we got to 15 mg, probably because prior to that the lowest she'd been at was 20 mg.

A typically eats 3 good meals and 1-2 snacks a day, when she's feeling well. Her not wanting to eat is a definite sign that something isn't right.
 
Well, the anti-itch cream does help some. Not sure what the actual problem is but at least she's getting some relief.

She woke up with a headache this morning, as usual. I'm really afraid to see how tomorrow is when we move down to 10 mg of Prednisone. I really think her body relies on it to feel good at this point and she just isn't adjusting well to the taper.

Labs are scheduled for Monday morning so we'll get those results by mid-day Tuesday. I'm ridiculously anxious about this whole thing!
 
I wish I had time for an outlet! lol After work it is either taking one child to dance or the other child to t-ball. Church on Wednesdays. My hubby works nights so it is up to me to do dinner, dishes, homework, nightly reading, etc. I suppose my "outlet" is watching trashy TV shows but lately I've been too tired at night to do that.

I think I'll breathe a little easier after Tuesday. Either way, good liver numbers or bad, we'll have a plan. Knowing what we're up against will give me some sort of comfort.
 

CarolinAlaska

Holding It Together
Have you tried the nystatin cream yet?

I read at bedtime - only time I get for me most of the time - even if I can't even read a full chapter before I zonk out.
 

DustyKat

Super Moderator
Thinking of you both DanceMom and sending loads of luck and well wishes for Tuesday. :heart:

Dusty. xxx
 
We survived Friday step-down day! She complained of a terrible sore throat and dull headache but Tylenol made her more comfortable. For some reason her throat seems to hurt her when she's flaring andI haven't quite figured that out yet. Visually it looks fine. She says her bottom feels better so I'm hoping it stays that way!

On another note, we are going to Disney next Friday and I'm thinking of getting her the Guest Assistance Card. Has anyone else done this? Last year when we went she ended up in the stroller, curled in a ball and crying, so I'm trying to avoid that. The excitement of theme parks seems to worsen her symptoms, always has. Hopefully Disney will be accommodating!
 
It's possible she's doing poorly below 20 mg because that's what our body naturally produces in the mornings and hers has been relying on pred for along time and may be failing to produce the required amount now.

the answer to that, according to our ped endocrinologist, was to slow the taper way down, using a split dose (am and pm). If it's her adrenals not working well you risk problems because of that. Our ped endocrinologist said bad words under his breath about gi's and prednisone. Our experience was that they consistently want to taper too quickly.

You would of course need to check with your doc but you could try splitting the dose in half (8 am and 7 pm) then reduce the evening dose by half (8 am and 4 pm) then reduce the morning (4 am and 4 pm) then evening by half (4 am and 2 pm) then drop the evening dose altogether (4 am and 0 pm) then reduce the am dose in 1 mg doses. No faster than once a week. It takes longer but reduces the severity of sde effects and helps the adrenal glands start working again in a gradual way.

And yes tapering off causes body aches, headaches, mood swings, and generally feeling rotten. That's because the body is missing the boost it gets from the pred and lets you know it doesn't like it, especially if the adrenal glands are not working well yet.

As I said, I would talk with her doc. You could also ask for a referral to an endocrinologist, especially if she is having morning headaches which are typical of adrenal insufficiency.
 
I forgot - any return of symptoms meant going back to the previous dose for 2 weeks and then going down more slowly. If you had dropped by 4 mg then you would do 2 mg instead.

To be steroid dependent means that her CD symptoms return when she goes down in pred or goes off it. I wasn't sure from your earlier post if that was clear.
 
Oh Holy liver numbers....lol

Those are always the first labs back and they make me the most nervous. Bilirubin is only slightly elevated, Alk Phos is very low but holding steady at least, AST is high for the first time (but barely so), and ALT is now 86 (norm is 8-24). Not sure if these numbers will concern the GI or not.
You want Alk Phos to be elevated in kids as that is associated with growth. Since she's been on pred the low Alk Phos number fits with the fact that she's not growting.

AST - numbers that are close to normal within a couple points should be viewed as being within the margin of error for the test. So that's why docs don't get excited by them.

The ALT is concerning and I expect the GI will want to recheck that in a week or two. It is the most sensitive of the liver tests - the canary in the coal mine - so you definitely want to see that go down.

All labs are back now...

GGT is upper normal limits
MCV is slightly elevated
RDW is slightly elevated
GGT - as long as within normal limits you can stop worrying.
MCV, RDW - MCV and RDW are related and various combinations of results suggest different kinds of anemia and a few other illnesses. Elevated MCV means the red blood cells are slightly larger than normal. Elevated RDW suggests there are an unusually high number of red blood cells of different sizes.

IF the numbers are only slightly elevated and her H&H are normal then I would not worry. Also, if there is no note of anisocytosis (or any other -tosis) then the variation is not that much.
 
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A has 2 GIs consulting on her treatment course and they both want her off the Prednisone ASAP. They are concerned that her symptoms are due to the Crohn's and do not believe it is due to the taper at all. I'm not sure what to believe. I think they feel the way they do because she had symptoms return so drastically at 20 mg and that's when the dose was doubled. As soon as we started to taper symptoms started returning. The sooner she gets off the steroids the sooner we can figure out what's going on. I wish labs or fecal cal were good indicators of A's disease but they aren't.

And as I typed all that she had an accident (diarrhea). That's the second one today.
 

my little penguin

Moderator
Staff member
What is the treatment plan Mtx or remicade/humira ?

Either one will still need pred to keep her stable until the drug kicks in.

Never easy
 
If things don't go well with 6-mp then the plan (as it stands now) is Remicade. The GI wants to do scopes to assess the disease prior to starting the Remicade. I'm still hoping her labs will look better and the 6-mp will start doing it's job. I'm fully aware that the plan has the potential to change along the way. That's what keeps me on edge.
 
Ah I missed any reference to D, just saw the stuff about terrible headaches.

Could she be having symptoms of both CD and adrenal insufficiency?

I am so sorry she is going through this and hope she gets better SOON.
 

DustyKat

Super Moderator
Sorry if I missed this DanceMom, but since the GI's think it is Crohn's related has any sort of imaging been suggested to check progress?

It can be useful full stop but also when on steroids because if they are successful in reducing inflammation it can give a clearer indication of what exactly may be happening with the bowel re: stricturing/complications if present.

Thinking of you both mum. :heart:

Dusty. xxx
 
Lately she's had x-rays (in ER) but that's all. She had an MRE the beginning of the year which was minimally helpful (showed some inflammation/thickening in the TI). Neither GI has mentioned repeating the MRE. Something to think about though......
 
Patricia - What you said about the Alk Phos has really been bothering me. A really wants to grow so she feels like she fits in with her classmates/teammates. She's grown less than an inch since December and is in the 3rd percentile for her age. What you're saying is that as long as her Alk Phos is low we can expect her growth to be delayed? Is this likely due to the Prednisone?

Dec 12th - 46.5 in
Feb 26th - 47 in
April 17th - 47.2 in
June 11th - 47.3 in
Sep 11th - 47.4 in
 

Maya142

Moderator
Staff member
Could your daughter start drinking Peptamen or something similar? My daughter who is 16 grew half an inch this year after she began supplementing with Peptamen jr. We thought she was done growing so it was a nice surprise!
 
I'm under the impression that the alk phos reading is just a handy way of saying - look this kid is growing! Elevated alk phos is associated with growth. As far as I know (not a doctor) alk phos doesn't cause poor growth it's just a rough indicator of growth. I know the rise and fall of alk phos definitely fit my son's growth.

I expect alk phos levels are associated with a lot of other things I don't know about. I just know my son's doctors always told me that the elevated alk phos was because he was growing. He never had very low levels as I recall.

So here's my understanding regarding growth (just a mom not a ped endocrinologist OK?):

1. You need to view growth over a long time span, preferably 2 years.
2. That said, a total failure to grow in a year is unusual.
3. Kids typically grow the most during spring and summer.
4. Average growth for children is 2 inches/year
5. Pre-teens begin to grow more rapidly (as a general rule) with girls having peak rate of growth earlier than boys. Most girls have gotten most of their height by age 14. Most boys have gotten most of their height by age 16
6. From a CDer perspective, three things influence growth:
*inflammation
*nutrition
*use of corticosteriods
7. When inflammation is not under control a teen with CD is unlikely to grow and may even have delayed puberty
8. When nutrition is not adequate either due to inflammation/scar tissue or to inadequate intake to make up for previous malnutrition then growth may be slower or delayed
9. When steroids are used - both Entocort and Prednisone - growth stops until the steroid is stopped. (As a general rule)
10. When all three are present then your child is probably not going to grow
11. For reasons that are not well understood boys with CD tend to be shorter than their expected height and have delayed growth even when in remission
12. Age is not necessarily the best measure of potential for growth. Bone age xrays (which should be interpreted by a pediatric endocrinologist) may show that bone growth is delayed leaving room for catchup growth once the child is in remission. Serial bone age xrays are most helpful in analyzing growth patterns. Usually one every six months to once a year.
13. Catch up growth often requires liquid formula supplementation as it usually takes 2x the number of calories the child would need if he/she were normal or expected weight/height. So if your child weighs 100# and the normal average weight for a child that age was 120# then you need to feed your child the amount of food they would eat if they were 120# times two. Or so we were told by the IBD dietician.
14. Weight usually comes before height once the child is in remission and off steroids.

Questions?
 
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GI emailed this morning and we have to stop 6-mp immediately. I'm pretty bummed. We will retest in 2 weeks and if liver numbers are down then scope the next. So hopefully scopes in 3 weeks. Not sure how the recent Prednisone will affect that but I don't like the idea of her being on only Pentasa for a great length of time. Based on the scopes he will choose the appropriate medication for her. At her last appointment he said Remicade would be next on the list but maybe he has something else in mind now. Not sure. The waiting is what I hate.....
 
Here are her actual results.....

Bili, total 1.8 (.2-.8)
Alk Phos 77 (184-415)
AST 92 (12-32)
ALT 327 (8-24)

This seems REALLY bad to me. Is she at any risk for true liver damage? Will other medications, specifically Remicade, affect her liver in this way? Why can't she seem to tolerate the 6-mp?

I'm just in a bit of a shock her numbers were this high.....
 
The ALT is pretty high but not as high as it could be (as in >2,000).

Remember, the liver is a remarkable organ. It can heal itself with time, should there be any damage - which might not be the case because she's been monitored closely and taken off the drug promptly.

Some people just can't metabolize 6-MP normally and more of it gets metabolized into a damaging metabolite than into the desired one. It has to do with the enzyme pathways and it's just a matter of genetics with 6-MP.

I haven't heard that Remicade poses a problem with the liver but I am not up on the latest research on it. Probably MLP will come along and give you some answers about that.
 
Sorry to hear about the labs, but very glad your GI is on top of things and pulled her off. I'd be a little nervous with just Pentasa too.
 

DustyKat

Super Moderator
Oh DanceMom...:hug::hug::hug:

Ditto to what Patricia said. Thiopurines just aren't the drugs for some :( but that doesn't mean that the biologics won't be just fab for your lass. :)

Sending you mega loads of luck and well wishes that A does well in this transition period mum. Maybe dropping off the 6mp may ease some her symptoms? I hope so!

Dusty. xxx
 

my little penguin

Moderator
Staff member
FWIW DS had similar ALT numbers for 6-mp.
He has not issues with Remicade or humira at all in terms of ALT/AST.
His body just didn't like 6-mp for whatever reason.

Good luck on your scope.
 
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A is hanging in there! She thought she saw some blood this morning but fingers crossed it was undigested food! I have noticed her making more urgent trips to the bathroom but that does happen from time to time and then passes. Overall she feels "pretty good" and has carried on with her normal activities this week. We do Disney tomorrow so hopefully things continue to go well!
 

DustyKat

Super Moderator
Thanks for the update DanceMom! :)

Wishing and hoping more than anything that A stays feeling pretty good and you all have a brilliant time at Disney!!! :dusty:

Happy Disney!
Dusty. xxx
 
Disney was awesome! We did get the GAC and it was a lifesaver! The only issue we had was the rude girl that didn't seem to want to give us one. All other cast members were very accommodating and we zipped to the front of most lines. A rode in the stroller all night and was exhausted. She just wasn't her happy energetic self. We ended up in the bathroom more times than I can count, with either explosive diarrhea or "false alarms". We refused to let it ruin the magic though. A has become my sarcastic and witty little 8 yr old so she just laughs most things off. Hoping next year's trip doesn't require a stroller and so many bathroom trips though!
 
Glad you had a great time. :). Sounds like you all need a holiday to recover from your holiday!

:ghug:
 
Oh no! My youngest daughter is sick with a fever, body aches, headache, and stuffy nose! Keeping her and A separate and hoping for the best!!
 
Scopes scheduled for next Thursday with a follow-up appt on the 22nd. Hoping she maintains until then! Labs tomorrow to check liver numbers but he wants to scope regardless. We seem to have an early outbreak of the flu here so hopefully I can keep her healthy. My other daughter is much better so she definitely didn't have the flu. Now to occupy my mind until the 22nd....lol
 
Just got lab orders and saw that the associated diagnosis is "hepatitis". Yikes! Also noticed a new test - prothrombin time. Anyone had this one before?
 
Are they just checking her for Hep antibodies maybe? When we thought DS was heading down the Remicade road, that was one of the prelim tests.
 
I have no idea. Usually the labs say- Associated Diagnosis: Crohn's Disease. This set said "hepatitis". All I was told was that he wanted to scope next week regardless of her liver numbers. Not sure why, but next week is convenient for us so we are going with it.
 
Hepatitis simply means inflamed liver. It's a rather general term for the liver is sick. No worry - just the coding he's using to cover the reason for repeat labs.

PT is a measure of how quickly her blood clots. This may be a standard test your doc does before scopes, just to be on the safe side. Or he may have a reason to suspect her clotting rate is not normal. CDers are prone to blood clots - as if you didn't have enough to worry about!
 
I know Patricia. But to see "hepatitis" in print is a little shocking, that's all. The first few times I saw "Crohn's Disease" I cringed too. Something about seeing it written makes it more real.

Labs are done, just waiting on results. You all know I don't wait very well! lol
 
Good news! Liver numbers are much improved and the doctor is pleased (as am I)! Globulin is low again, as are lymphocytes. MCV and RDW are still elevated. So things aren't perfect just yet but we are headed in the right direction!
 
Just wanted to add that we finished Prednisone this morning! Felt like this day would never come! lol

Overall, A is doing pretty well. I expect the scopes and prep to be a breeze and they probably won't find much on the biopsies. Just taking things day by day and thankful that today is a good one!
 

CarolinAlaska

Holding It Together
Congrats on getting off the pred. We have about 8 days left (hopefully) and Jae will be off of it... Congrats on the good results. Regarding the prothrombin time - sometimes liver inflammation will increase the risk of bleeding - the PT will show whether that is the case... I think it was just a precautionary/screening lab.
 
Great news Dancemom!!

So happy to hear your girl is doing better. It is certainly a process with lots of ups and downs, but it sounds like you are on your way there!
 
I should know that things won't always be so cheery. Today has been an awful day. A is hateful and angry and miserable to be around. I'm assuming this is from the lack of prednisone. It is just so unlike her. And by chance I happened to walk in and see her BM and it broke my heart. It was green, slimy, and covered in bloody clumps. Her response - "Ya, that's what they look like now. My stomach doesn't hurt though so it's all good." I just need to pout a little bit because my bubble was burst so quickly and then I'll be able to carry on and smile. Our Take Steps fundraising has kept us very busy and Monday we have a fundraising night at Chick-fil-a. I'll be ready to smile by then.
 
Scopes are Thursday with a follow-up appointment on the 22nd. I am going to email a lovely photo this evening to let them know the latest. I'd like that appointment pushed up if possible because I know how quickly things can go downhill. Pentasa just isn't enough.
 
I emailed the nurse a lovely pic of A's bloody stool. I know that's how they like to start their Monday mornings! lol She emailed back that she was sorry to see that A wasn't doing well but assured me that after the scopes we would put a plan in place. That was comforting...I still need to be reassured from time to time.

A starts her clean out in the morning and I'm praying it goes well. She'll be with my Mom because I can't really afford to take another day off of work right now. Just too much going on. I did make her a humorous little checklist to mark off each drink she finishes and reminders to email her worried mom to give updates. I know she'll appreciate my "turd tally" box where she can keep track of how many times she's gone to the bathroom. And my awesome bathroom graphics will hopefully make her smile when she's feeling crummy. You have to keep a sense of humor through this whole "crappy" process!
 
Clean-out is a success! This is the first time she didn't vomit and her stool was clear the 2nd time she went. Not quite sure why but we'll take it!
 
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