# GI Check-Up



## DanceMom (Sep 11, 2013)

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.


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## crohnsinct (Sep 11, 2013)

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!


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## Jennifer (Sep 12, 2013)

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?)?


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## Dexky (Sep 12, 2013)

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!


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## Farmwife (Sep 12, 2013)

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.


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## crohnsinct (Sep 12, 2013)

Also O has psoriasis there.  Doesn't have the characteristic scales...just red raw and itchy.


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## DanceMom (Sep 12, 2013)

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?


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## ChampsMom (Sep 12, 2013)

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


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## CarolinAlaska (Sep 12, 2013)

Nystatin cream for yeast works great but needs a prescription.


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## Farmwife (Sep 12, 2013)

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.


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## Dexky (Sep 13, 2013)

DanceMom said:


> 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?


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## DanceMom (Sep 13, 2013)

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.


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## crohnsinct (Sep 13, 2013)

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.


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## Farmwife (Sep 13, 2013)

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


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## DustyKat (Sep 13, 2013)

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


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## DanceMom (Sep 13, 2013)

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.


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## DanceMom (Sep 13, 2013)

All labs are back now...

GGT is upper normal limits
MCV is slightly elevated
RDW is slightly elevated

Any thoughts??


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## Sascot (Sep 13, 2013)

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"?


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## DanceMom (Sep 13, 2013)

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.


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## DustyKat (Sep 13, 2013)

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

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

Dusty. xxx


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## my little penguin (Sep 13, 2013)

hope the numbers go down-
if not you get a plan quickly.


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## CarolinAlaska (Sep 14, 2013)

Sorry to hear the bad news about the labs.  I hope they normalized quickly.


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## ChampsMom (Sep 14, 2013)

I hope she feels better....


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## Gmama (Sep 15, 2013)

Big hugs to you & A Dancemom! Hope A is feeling better soon! The trial & error of this disease makes me nuts:ybatty:


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## DanceMom (Sep 15, 2013)

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.......


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## my little penguin (Sep 15, 2013)

Hugs

Weaning from pred was a big migraine trigger for DS.
I was so glad when that was over.


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## Dexky (Sep 16, 2013)

Has the strep and pin worms been ruled out?


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## DanceMom (Sep 16, 2013)

Strep has not come back yet. Hopefully today.


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## Johnnysmom (Sep 16, 2013)

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)))))


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## DanceMom (Sep 16, 2013)

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.


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## DanceMom (Sep 17, 2013)

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.


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## Tesscorm (Sep 17, 2013)

Oh my!!! :ack:  Hope it goes smoothly!


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## Sascot (Sep 17, 2013)

Sounds like fun! Good luck with that


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## crohnsinct (Sep 17, 2013)

Oh no!  BTDT!!!  Good luck!


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## Niks (Sep 17, 2013)

Good luck!!!  xx


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## DanceMom (Sep 17, 2013)

Mission complete! No pinworms!


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## Dexky (Sep 18, 2013)

...so back on Flagyl??


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## crohnsinct (Sep 18, 2013)

Phew!  Have them check for yeast and psoriasis.


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## DanceMom (Sep 18, 2013)

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?


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## Mehita (Sep 18, 2013)

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).


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## DanceMom (Sep 18, 2013)

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.


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## DanceMom (Sep 19, 2013)

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!


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## Mehita (Sep 19, 2013)

Do you have an outlet, DanceMom? Exercise? Crafts? Something to get your mind off things for an hour?


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## DanceMom (Sep 19, 2013)

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.


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## Tesscorm (Sep 19, 2013)

Wine, chocolates, firefighters...


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## CarolinAlaska (Sep 19, 2013)

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.


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## DustyKat (Sep 20, 2013)

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

Dusty. xxx


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## DanceMom (Sep 21, 2013)

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!


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## Patricia56 (Sep 21, 2013)

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.


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## Patricia56 (Sep 21, 2013)

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.


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## Patricia56 (Sep 21, 2013)

> 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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## DanceMom (Sep 21, 2013)

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.


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## my little penguin (Sep 21, 2013)

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


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## DanceMom (Sep 21, 2013)

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.


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## Patricia56 (Sep 21, 2013)

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.


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## DustyKat (Sep 21, 2013)

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


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## DanceMom (Sep 21, 2013)

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......


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## Dexky (Sep 22, 2013)

When was she last scoped?


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## DanceMom (Sep 22, 2013)

January 17th


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## DanceMom (Sep 22, 2013)

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


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## Maya142 (Sep 22, 2013)

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!


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## Patricia56 (Sep 23, 2013)

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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## DanceMom (Sep 23, 2013)

Labs are done....so now we wait.  This is the worst part! lol


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## DanceMom (Sep 24, 2013)

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.....


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## DanceMom (Sep 24, 2013)

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.....


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## Patricia56 (Sep 24, 2013)

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.


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## Mehita (Sep 24, 2013)

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.


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## DustyKat (Sep 24, 2013)

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


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## my little penguin (Sep 24, 2013)

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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## DanceMom (Sep 26, 2013)

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!


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## DustyKat (Sep 26, 2013)

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


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## DanceMom (Sep 28, 2013)

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!


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## Niks (Sep 28, 2013)

Glad you had a great time. . Sounds like you all need a holiday to recover from your holiday!

:ghug:


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## DanceMom (Sep 30, 2013)

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!!


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## Johnnysmom (Sep 30, 2013)

Prayers and Hugs this passes quickly and A manages to avoid getting sick!!


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## DanceMom (Oct 1, 2013)

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


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## positivemum (Oct 1, 2013)

So glad you got the pass at Disney as it was a lifesaver for us too when we went in May this year


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## DanceMom (Oct 1, 2013)

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?


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## Mehita (Oct 1, 2013)

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.


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## DanceMom (Oct 1, 2013)

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.


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## Patricia56 (Oct 1, 2013)

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!


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## DanceMom (Oct 2, 2013)

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


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## Patricia56 (Oct 2, 2013)

Who does?  Hope all is well.


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## DanceMom (Oct 3, 2013)

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!


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## DanceMom (Oct 4, 2013)

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!


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## CarolinAlaska (Oct 4, 2013)

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.


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## Johnnysmom (Oct 4, 2013)

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!


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## DanceMom (Oct 5, 2013)

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.


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## my little penguin (Oct 5, 2013)

Hope the scope gives you a clear path


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## DustyKat (Oct 5, 2013)

Thinking of you DanceMom and sending loads of squishy hugs your way. :ghug: 

Dusty. xxx


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## Niks (Oct 5, 2013)

Hugs Dancemom.  Hoping things improve really quickly  xxx


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## Tesscorm (Oct 5, 2013)

Thinking of you :ghug:


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## Dexky (Oct 6, 2013)

When are the scopes? I hope they get a treatment plan in place quickly!


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## DanceMom (Oct 6, 2013)

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.


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## Dexky (Oct 6, 2013)

If the scopes are telling, they should take action immediately.  Good luck!


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## kimmidwife (Oct 7, 2013)

Good luck with the scopes!!!!


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## DanceMom (Oct 8, 2013)

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!


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## Niks (Oct 9, 2013)

Good luck with clearout!!  xxx


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## upsetmom (Oct 9, 2013)

Good luck!


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## DanceMom (Oct 9, 2013)

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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## DanceMom (Oct 10, 2013)

Scopes went well. Some redness was seen in stomach and colon and one "spot" in stomach.  There was also an anal fissure which explains her pain/burning.  She's bleeding quite a bit from her bottom so keeping an eye on that. They will discuss her slides at a conference tomorrow and we should hear something next week.


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## DanceMom (Oct 10, 2013)

Hmmmm.....how much bleeding is expected after a colonoscopy?


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## my little penguin (Oct 10, 2013)

Depends on number of biopsy sites.
DS had some but we talked to the GI just in case the amount was more than they expected .


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## DanceMom (Oct 10, 2013)

We didn't know she was bleeding until the GI was already with another case. The nurse saw it and told us to call if it didn't stop. He wasn't sure what was considered normal though. She had blood in the bed and every time she passes stool it looks like bloody clumps.  When she wipes thick blood continues to come out. It even leaks out when she isn't passing gas or having a BM. She screams out in pain though and it breaks my heart. Could all this be from the fissure?


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## crohnsinct (Oct 10, 2013)

O.K. THAT sounds troubling to me and I would certainly call.  Best case it is nothing and you just made them pick up a phone.  Quick before they go on service!


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## DanceMom (Oct 10, 2013)

Bleeding is slowing. .... she's still in a lot of pain though. I think some of the pain is gas. BTW, what is the standard treatment for a fissure?  The doctor mentioned Flagyl but ended up not prescribing anything.


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## upsetmom (Oct 10, 2013)

DanceMom that doesn't sound right. After my daughters colonoscopy she bled a little bit but not that much.

 I hope you managed to speak with the GI.


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## Niks (Oct 10, 2013)

Yes, really hope you got hold of GI and bleeding has stopped. Hugs xx :ghug:


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## kimmidwife (Oct 10, 2013)

Dance mom,
How is she doing? Fissures can be so painful. I would call tomorrow and ask about that prescription for something to help. You shouldn't have to wait on that.


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## DustyKat (Oct 11, 2013)

^^^^ Ditto to what Kim said. They have identified a fissure so should have instigated treatment there and then. Awfully painful things, bless her. :ghug: 

If there is inflammation present then Flagyl may be used to help reduce any infection/inflammation present plus creams. If it is a fissure alone then usually creams are used without antibiotics. Often a good combination is a Lidnocaine gel to help relieve pain and something like Rectogesic which is a nitrate based cream that relaxes the muscles and improves blood flow to the area. They are used in an alternating pattern. 

I hope your lass is soon feeling better mum. :heart: 

Dusty. xxx


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## DanceMom (Oct 11, 2013)

A's bleeding has really slowed (it isn't leaking out anymore) but her stools are still very bloody (mostly all red).  She's in tremendous pain from that stupid fissure.  My guess is that she had a very small one that was causing her discomfort, but the procedure tore it even more so now she's in excruciating pain.  I emailed the GI but I know he has the conference today.  The nurse did check my message (love that feature of the online account!) so hopefully she'll track him down and give some recommendations for the weekend.

The GI did mention that he felt A's case was not textbook and is even questioning her diagnosis.  These biopsies are very important and I hope we don't end up back at square one!  This gives me so much anxiety.....


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## DanceMom (Oct 11, 2013)

GI just emailed. Didn't mention pathology, but does want to start Flagyl and Cortifoam.  Anyone had success with this combo before?


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## DustyKat (Oct 11, 2013)

Oh my, I hope the biopsies give you solid answers! :ghug: 

We have not had issues with fissures but I hope the combo of drugs works well for your lass, bless her. :heart: Good luck! 

Dusty. xxx


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## Sascot (Oct 11, 2013)

Sorry to hear things are not going so well. Hope you get answers soon. No experience with the cortifoam, hope it helps quickly!


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## Farmwife (Oct 11, 2013)

Hugs

Did he say what other disease was he thinking?


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## DanceMom (Oct 11, 2013)

Long story short....biopsies came back normal and GI is unsure of how to proceed.  A is only the second atypical IBD case he's ever had.  He does still think she has CD but he is confused as to why the biopsies don't agree.

So....we are being referred to ophthalmologist, rheumatologist, and another GI in Atlanta for a second opinion.  Our GI is just looking for more "proof" and a little assistance.


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## DustyKat (Oct 12, 2013)

:ghug:

So the biopsies were completely normal or were there changes but no evidence of Crohn's? 

Good to hear that the your Gi is not content to let sleeping dogs lie and is referring you on. Sending you loads of luck that your answers are just around the corner. 

Dusty. xxx


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## DanceMom (Oct 12, 2013)

From what I understand they were normal. The changes that were seen last time were not seen this time. I'll get the full report at her next appointment.


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## DanceMom (Oct 12, 2013)

First dose of Cortifoam done. ....I need a drink after that! She's choosing not to speak to me right now. Poor thing. I did get to see the fissure though and I can see why she's in so much pain. I'd imagined it to resemble a papercut but it was much wider than that. Ouch!

Out of curiosity. .... anyone else ever have normal biopsies after diagnosis?


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## my little penguin (Oct 12, 2013)

DS did on his last scope for the most part only mild chronic duodenitis .
Nothing else - but he is on humira so,.......
We follow up with GI soon


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## DanceMom (Oct 12, 2013)

I can't help but wonder if the Prednisone is masking something.  GI said it could mask acute changes but not chronic ones. My girl just doesn't fit any mold.


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## Maya142 (Oct 12, 2013)

Poor little A. My daughter is 16 and hated doing the hydrocortisone enemas and it must be so much worse for younger kids. You both will be in my thoughts!


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## DustyKat (Oct 12, 2013)

If there were acute changes only when diagnosed, meaning inflammation had not been present for a sufficient amount of time for chronic changes like scarring to take place, then Prednisone certainly has the ability to produce healing that will eliminate previous evidence. 

*Hugs* to you and your lass mum, I so hope the enemas work and feel for you both for having to go through it. :ghug: 

Dusty. xxx


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## DanceMom (Oct 14, 2013)

Just wanted to update quickly and say how much I LOVE our GI!  First of all, he spent about 30 minutes on the phone with me Friday afternoon, and then sent a nice follow-up email on Sunday to further explain things and check on my girl.  

Ophthalmology already contacted me today and set her appointment for the 22nd (same day we go for the GI follow-up).  Should hear from Rheumatology too as he wants us to see them this week.  Also have to have labs and a chest x-ray done before that appointment.  

Anyway, A is feeling pretty crummy with awful diarrhea but I can't be sure it isn't a mild stomach bug.  I haven't been feeling too great either.  Hoping to get some solid answers in the upcoming weeks.  Hanging in there!


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## Tesscorm (Oct 14, 2013)

Poor thing, I do hope she starts to feel better soon. 

Just on the biopsies, it seems that biopsy results are considered to be fairly conclusive and this really confuses me???  From what I understand, inflammation caused by crohns is patchy and may also be microscopic (so invisible to the eye), so I would think that there is a fairly good chance that a biopsy sample could very easily miss a patch of inflammation and result in a 'no inflammation' report.  In my mind, biopsies with a positive indication of crohns is a useful report but a report saying 'no inflammation' isn't worth very much (ie high potential for a false negative)???  Am I correct here?

DanceMom - If my thinking is correct, did your GI mention a possibility of the biopsy missing areas of inflammation?


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## DanceMom (Oct 14, 2013)

He didn't really say he "missed it" but perhaps he did.  Strange thing is his initial report noted focal erythema in both the stomach and colon but I suppose the biopsies didn't match.  I'll get the full report on Tuesday.  He did say that GI manifestations sometimes lag behind skin and blood manifestations so it is possible that the chronic changes in her GI system haven't occurred yet.  That's wonderful news but it makes a diagnosis and treatment much more complicated.

We see the Rheumo Friday, and the Ophthalmologist and GI on Tuesday.  Still trying to schedule the second opinion in Atlanta.  All of this scheduling and planning gives me a headache! lol


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## Maya142 (Oct 14, 2013)

How is A feeling? Is she getting used to cortifoam? Still thinking of you guys!


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## DanceMom (Oct 14, 2013)

She's not feeling so great but she managed to go to school and dance.  Her teacher allowed her to stay in from PE so she could be near a bathroom (love her teacher!).  She hates the Cortifoam but she's much more cooperative with it now.  She says it burns but I wonder if it is just an uncomfortable feeling that she doesn't like.  Not sure.  She did say she'd prefer a "Cortimist". lol


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## Maya142 (Oct 14, 2013)

Lol that is hilarious! She should tell the GI. Hope things improve soon!


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## Dexky (Oct 15, 2013)

It helps so much when they can laugh about some of it!!


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## DanceMom (Oct 16, 2013)

Having some insurance issues.....

Our insurance claims that the doctor we want to see regarding the second opinion is not in our network of providers.  Therefore, they won't cover A's medical costs if we choose to see him.  When I called the doctor's office they claimed to have verified our benefits and stated that her care would be covered by insurance.

Has anyone else had a similar experience with insurance coverage?  This second opinion is really important but there is no way we can pay for it on our own.


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## Dexky (Oct 16, 2013)

My insurance switches to a network plan on Jan. 1st.  Fortunately, our GI and Hepa are in the network.  Definitely something we'll have to consider from now on though.  Good luck!


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## kimmidwife (Oct 16, 2013)

Be careful! I would trust what your insurance says. We have had this happen once luckily in the end our pediatrician wrote a letter stating we needed to see this specific doctor and they finally covered it but it was not fun getting to that point.


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## crohnsinct (Oct 17, 2013)

Yes^^ as a health benefits administrator in a previous life...go with what insurance company says.  Docs offices make mistakes all the time. There should be an online listing of all the docs in your plan and it should be easy to look up.  Are you going out of state?  They could be in your company's network but not in your particular geographical network, in which case, you just need your GI to call and get the approval to cover in network. That one should be easy because there is already a negotiated rate.  If they really are totally out of network, have your GI call and ask for an appeal.  You would be surprised at how many appeals are granted.  Many times the docs just take care of them without us knowing...usually meds and procedures though.  Lastly, once you tell your doc this, he/she may say, "oh o.k. well then use this person they are just as good" so maybe have the listed printed out for them to look at.  If there really aren't any they want to use on the list then they should help you with the appeal.   Good Luck!


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## Mehita (Oct 17, 2013)

You might also be able to call the new place and ask if they can lower their fee any. You'd be surprised how much is negotiable. Just tell them your really, really need their opinion, but your insurance isn't cooperating, can they help you out? It's worth asking. Or maybe even just have them do a records review?


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## DanceMom (Oct 18, 2013)

We saw the Rheumatologist today.  He did a pretty thorough examination, took her history, and ordered a ton of blood tests and a urine test.  I've never even heard of most of these tests so it will be interesting to see if they find anything.  We'll have them done Tuesday but we don't see him again for another 6 weeks.

She has one EN spot on her arm that he examined and agreed that it is panniculitis of some sort but couldn't be sure it was EN.  He is going to have her slides reviewed by a pathologist at our hospital (the dermatologist we see is not at the Children's Hospital) to be sure it is EN.  If this pathologist disagrees he'd like another biopsy done.  I'm not sure if I want to go that route.  A has been so compliant with everything we've asked her to do but she is so self-conscious about her biopsy scar that I hate to do that to her again.  I feel like she's becoming a pin cushion!

Apparently our GI asked him if he thought A could have an immune deficiency of some sort but he doesn't think so.  He didn't give much of an opinion today but I didn't really expect him to.

Meanwhile....the diarrhea continues...5-8 times a day now.  She's eating about 1/3 of what she usually does and she's extremely irritable and easily fatigued.  I can always tell how she feels based on what her tumbling is like.  Tonight it was terrible and she asked to leave gym early (which she's NEVER done before!).

More appointments Tuesday....


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## DanceMom (Oct 19, 2013)

Just have to say.....our Take Steps team had a booth at our downtown market today and the support from the community was amazing! So many donations, kind words, and support! A's teacher came (love that lady to pieces! ) and made A feel like the most important person on the planet. So many people told her how strong she was and that they'd pray for her. An exhausting but uplifting day!!


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## DanceMom (Oct 22, 2013)

A had her labs and ophthalmology appointment today so now we get a 2 week break before heading to Atlanta!  She is such a trooper when it comes to labs.  She doesn't even flinch!  She was quite excited that she broke the record for the most tubes filled by a kid in one sitting!  12 tubes total (thanks to GI and Rheumo)!  They asked for some interesting things....

Then we headed to her eye appointment.  She is a little farsighted but there was no inflammation present.  She told us to come back in a year, or sooner if we had problems.


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## kimmidwife (Oct 23, 2013)

Glad she was such a trooper with the blood. Looking forward to hearing what you find out in Atlanta. Who are you seeing there?


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## DanceMom (Oct 23, 2013)

We have been referred to Dr. Kugathasan in Atlanta.  Apparently our GI has been consulting him regarding A's care and he wants us to make the trip so she can have an official second opinion.  As far as I know it will just be an hour long consultation, no other tests involved.

For those of you who have gone for a second opinion - can you please share your experience and what your appointment was like?  I'm not quite sure what to expect.


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## my little penguin (Oct 23, 2013)

WE have had two for ds.
Both appts were about 1/2 hour long.
SOme had us meet other staff while we were there ( such as pain management ).
Generally they had reviewed everything in his file/ notes tests etc...
The nurse talked to us many times before the visit and any extra tests the 2nd opinion doc wanted  were done prior to the visit to save time.
They then gave us their take on things as well as med recommendations.

Both of our 2nd opinions agreed on previous dx
One changed meds
Other left it the same and gave other extra med options.

Good Luck


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## DanceMom (Oct 24, 2013)

School nurse just called.  A is crying that her stomach hurts and says she can't make it through the day.  She never wants to miss school so I know she feels awful.  I feel very helpless as we wait for the next few appointments!

She's starting to have stomachaches again, she's having explosive diarrhea 4-6 times a day, she has a very poor appetite and is starting to lose weight, she has a huge EN knot on her arm.....


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## DanceMom (Oct 24, 2013)

Fever of 101.6..... thinking she may have a virus.  My poor girl.


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## DanceMom (Oct 26, 2013)

Some of A's labs are starting to come back.  GGT was good and so was CBC.  Her WBC was on the low side of normal but I think that is due to the Flagyl.  I'm confused about her Hepatic Function Panel though so maybe someone can provide some insight.  A last had an HFP on 10/02.  At that time her Globulin was 1.8 (2.0-3.8), AST was 28 (12-32), and her ALT was 73 (8-24).  Her most recent HFP was on 10/22.  Now her Globulin is 1.7, AST is 41, and her ALT is 38.  So the ALT is decreasing, which is great, but the AST is increasing and is now abnormal.  Not sure what to think about that.  She hasn't taken 6-mp in a month so I expected those numbers to continue to decrease.

GI also ordered Pneumococcal AB, 23 serotypes.  Anyone know what this is for?  Nothing was flagged so assuming all is good there.

Still waiting on tons more results.....

A still has a low-grade fever...99.4 last I checked.  She's also starting to look puny again.  Never thought I'd miss those steroid cheeks but I'm starting to!


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## DanceMom (Oct 26, 2013)

Her Tetanus just came back flagged as low. Does this mean the immunization wasn't effective and she needs a booster? Why do you think he tested this?


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## Sascot (Oct 26, 2013)

Sorry I've no answers to your questions.  Just wanted to send some healing thoughts - hope they get some answers soon so she can start to feel better again


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## CarolinAlaska (Oct 27, 2013)

DanceMom said:


> Some of A's labs are starting to come back.  GGT was good and so was CBC.  Her WBC was on the low side of normal but I think that is due to the Flagyl.  I'm confused about her Hepatic Function Panel though so maybe someone can provide some insight.  A last had an HFP on 10/02.  At that time her Globulin was 1.8 (2.0-3.8), AST was 28 (12-32), and her ALT was 73 (8-24).  Her most recent HFP was on 10/22.  Now her Globulin is 1.7, AST is 41, and her ALT is 38.  So the ALT is decreasing, which is great, but the AST is increasing and is now abnormal.  Not sure what to think about that.  She hasn't taken 6-mp in a month so I expected those numbers to continue to decrease.
> 
> GI also ordered Pneumococcal AB, 23 serotypes.  Anyone know what this is for?  Nothing was flagged so assuming all is good there.
> 
> ...


Are you sure the pneumococcal was a lab test?  There is a pneumococcal vaccine with 23 serotypes...

I think the AST/ALT can be elevated by general illness/flare of IBD, doesn't seem remarkably high.  Low globulin has to do with general nutrition - low protein possibly due to all the diarrhea?


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## CarolinAlaska (Oct 27, 2013)

DanceMom said:


> Her Tetanus just came back flagged as low. Does this mean the immunization wasn't effective and she needs a booster? Why do you think he tested this?


Wierd.  I've not heard of testing for that.


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## DanceMom (Oct 27, 2013)

Her complement c3 has come back low but her complement total was normal.  Wondering what this is an indication of.....


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## DanceMom (Oct 29, 2013)

GI just called and said he definitely isn't sure of A's Crohn's diagnosis because her biopsies do not point directly to Crohn's.  I feel like we are sliding backward again!  He wants her to have some new testing and mentioned a WBC scan.  Anyone ever had this before?  Not sure what else we are in for....


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## my little penguin (Oct 29, 2013)

> OBJECTIVE: To evaluate different methods of examination of the bowel in suspected inflammatory bowel disease. DESIGN: Prospective investigation of all children over a three year period with suspected inflammatory bowel disease. A technetium-99m-HMPAO labelled white cell scan (Tc-WCS), barium follow through examination (Ba-FT), and colonoscopy plus biopsy were undertaken. SETTING: Great Ormond Street Hospital for Children, London. SUBJECTS: 39 children (20 male and 19 female), median age 12.1 years (range 3.9-15.1 years). MAIN OUTCOME MEASURES: There was total agreement in 21/39 cases, positive in 16, and negative in five. Of 31 histologically proved cases, positive results were obtained in 28 Tc-WCSs (sensitivity 90%), 10 of 24 Ba-FTs (sensitivity 42%), and 27 colonoscopies (sensitivity 87%). CONCLUSION: The Tc-WCS is sensitive, specific, and non-invasive and should be a first line investigation. Ba-FT with a high radiation burden and relatively low sensitivity requires its role to be redefined. Colonoscopy, with endoscopic biopsy, has a high pick-up rate where facilities and expertise exist.



From
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1511611/


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## DanceMom (Oct 29, 2013)

A just finished a 14 day course of Flagyl and is also on Pentasa.  I'm not sure if she has inflammation at this time but something must be causing the diarrhea.  Her complement c3 was low, so according to what I've read if she does have IBD it isn't active at this time.  

Her puzzle is in a million pieces and nothing seems to fit together.....very frustrated....


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## DanceMom (Oct 30, 2013)

Okay....I have to share this because I know many of you will appreciate!

A was recently on Flagyl and I always snickered at how she mispronounced it as "Fragile".  What made it even more funny was that the Rheumatologist pronounced it the same way, lol.  So....this gave me an idea for A's adjective costume she has to wear to school tomorrow.  All third graders have to choose an adjective, design a costume that portrays that adjective, and have an adjective parade through the school.  Well A is going as "FRAGILE"!  She will be bubble-wrapped (yes! I've always wanted to do this to her!) and have a sign that says "Fragile! This end up!"


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## Mehita (Oct 30, 2013)

Love it!


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## Niks (Oct 30, 2013)

Love the 'fragile' fancy dress!!  Fab.

Nothing piecing together!   Know that feeling..  :ghug::ghug::ghug:


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## kimmidwife (Oct 30, 2013)

About the tetanus if her titers were low then she probably needs a booster. Not sure why he checked but it is good he did. When she is feeling better it probably would be good to get her a booster. I am curious as to why he is now second guessing the Crohn's diagnosis. Not sure about the WBC scan though. When do you go for the second opinion?


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## DanceMom (Oct 30, 2013)

I don't think he has ever been 100% confident she has Crohn's.  She certainly isn't a textbook case.  Her biopsies show either non-specific inflammation or are completely normal, and CRP and Fecal Calp are always normal as well.  I swear, her inflammation plays hide-and-seek!  She has constant diarrhea (which is now completely liquid), bloody stools, erythema nodosum, and a fissure that is starting to reappear for some reason.  Just not 100% sure that reason is Crohn's.  I know they are looking into some other autoimmune disorders as well.

We leave for the second opinion in Atlanta next Tuesday and will be seen on Wednesday and Thursday.  I'm ready to just get this over with.


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## kimmidwife (Oct 30, 2013)

Dance mom,
I am really eager to hear about your second opinion as it looks like we may be heading that way ourselves. What made you guys pick Atlanta for that second opinion vs CHOPs, Cincinnati! or Boston. I am looking at these trying to figure things out. Where in Atlanta are you going?


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## DanceMom (Oct 30, 2013)

Our GI set up the second opinion for us.  We are going to see Dr. Kugathasan at Children's Physician Group/Egleston.  Our GI has sent another "non-textbook" patient there and Dr.K was able to confirm his diagnosis and determine the best treatment plan for him.  The drive won't be too bad and they accept our insurance so it just seemed to make sense for us.

Why are you looking for a second opinion?


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## kimmidwife (Oct 31, 2013)

I am unsure about this gastroparesis diagnosis. She also has had continued pain in spite of the Crohn's being in remission. I just wonder if there is something we are missing.


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## DanceMom (Oct 31, 2013)

A usually has pain too with no obvious cause.  I know the GI thinks she has IBS as well and I don't necessarily disagree with him.  I think there is more to it than just IBS though so I've never settled for that explanation alone.


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## DanceMom (Oct 31, 2013)

Dr. K just called.  Looks like we will definitely be having the white cell scan and another pill cam.  He said he believes her Crohn's is in the small bowel so another set of scopes would be pointless.  Hopefully she can hang onto this pill cam for longer than 3 hours and 15 minutes! lol


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## Farmwife (Oct 31, 2013)

Just checking in.

I'm sorry A is still struggling. I hope the pill camera shows something the would help explain her pain.


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## DanceMom (Oct 31, 2013)

Trick-or-treating tonight was a disaster.  Her wrist has been bothering her and I ended up carrying her candy bag.  Her bottom started burning/itching and she just wanted to go take a shower.  She somehow got terrible heartburn and we kept having to stop until the pain would ease up.  And the whole time she was worried she'd need to use the bathroom and wouldn't make it to one in time.  Whatever disease she has SUCKS!


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## Mehita (Nov 1, 2013)

Aw, so sorry, DanceMom. The last three Halloween's have been disasters for us. The one year he did feel good and go trick or treating we really did it up for him to make it special so he wouldn't be so bitter towards the holiday. Maybe consider that for next year. Now all he talks about is the good year and has either blocked out or doesn't remember the bad ones.


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## DustyKat (Nov 2, 2013)

Oh my goodness DanceMom, I am so very sorry to hear of all that A is going through and then a sad Halloween to top it off. Poor love. :ghug: 

Hoping, wishing and praying that the second opinion gives you rock solid answers and an action plan that gives A long and lasting relief. :goodluck: 

Thinking of you both. :heart:

Dusty. xxx


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## DanceMom (Nov 2, 2013)

Ugh! She has a fever again! It is 100.7 this morning. Looks like we are in for a miserable weekend.


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## Sascot (Nov 2, 2013)

Sorry to hear she isn't doing well. Sending healing thoughts


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## Gmama (Nov 3, 2013)

Hi DanceMom,
How is your sweet girl doing? Hope her temp is down and she's doing better than last week!


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## DanceMom (Nov 3, 2013)

It was definitely a rough weekend.  A stayed in bed most of the day Saturday.  I finally coaxed her out around 8 to sit on the couch and watch a family movie.  Today she got up and did some things because she thought she was feeling a little better.  Then her stomach started hurting again and back to the bed she went.  Her temp is down to 99.2 so I'm hoping she is well enough to go to school tomorrow.


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## DustyKat (Nov 4, 2013)

Thinking of you DanceMom and hoping that A is feeling better today. :ghug: 

Dusty. xxx


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## DanceMom (Nov 11, 2013)

Our local Rheumatology nurse just called and said A needs a booster for tetanus and pneumovax.  Apparently her labs indicated that her levels were low.  Guess we'll make an appointment with the Pedi and add the flu shot in there as well.  She's not going to be very pleased with this news.


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## DanceMom (Nov 12, 2013)

A's joint pains are getting worse and I think it is due to the EN.  Yesterday she had trouble running her laps at PE (and she loves to run) and this morning 3 new EN spots appeared on that knee.  She's also down to 49 lbs despite having a pretty good appetite.  She was 53 lbs one month ago at the time of her scopes.  And every day is a battle with headaches, stomach aches, and a sore throat.  I'm just venting.  Her next GI appointment isn't until the 4th of December and I can only imagine how she'll feel by then.


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## Mehita (Nov 12, 2013)

Remind me again what she's on currently? Do you have to wait until the 4th? Can't they see her sooner? 

Our GI office gives priority to kids who are flaring or in pain. Sometimes same day appts even. 

Poor thing.


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## DanceMom (Nov 12, 2013)

She's only on Pentasa right now (6-mp caused liver toxicity).  Our GI is waiting to hear back from the IBD team in Atlanta before making any medication changes.  Apparently her diagnosis is still up in the air.  Nothing like being told that your child needs to get more sick so things are more clear cut....


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## my little penguin (Nov 12, 2013)

So sorry to hear-
 I have btdt before on kiddo not sick enough.
ugh
hope the times goes by quickly.
I would still update the GI on her status at least once a week ( or more) so they can pull her in if need be while they are making decisions.
I have done this with Ds when things were all over the map.


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## Farmwife (Nov 12, 2013)

btdt too.
I always fear when I heard "not sick enough", my goodness how sick do you want her.
Now we're in the worlds of "which one does she have now".:ybatty: 
Is it just EGID's and not IBD, is it IBD now and no longer EGID's 
or is Grace a new breed of bowel diseases altogether.

Hugs, you better be sticking around. 
If they haven't kicked me off you should be safe.:lol:


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## DanceMom (Nov 15, 2013)

A got her vaccines today (pneumovax, td, influenza).  That was about 3 hours ago and her temp is already 99.5.  Hope it doesn't get any higher.  She says her arms feel like they're swollen but I'm assuming they're just uncomfortable?  The arm that she got the td and pneumovax in is hot to the touch but isn't noticably swollen or anything.  Hoping she wakes up in the morning and feels much better.


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## DanceMom (Nov 16, 2013)

Well, her arm did end up swelling and is still very painful for her.  I guess that is fairly typical.  She's still running a 99.5 temp even with Tylenol.  I'm beginning to wonder if the temp is from the vaccines or part of these periodic fevers she's been getting the last few weeks.  Those never respond to Tylenol either.

Her dance teacher told me today that A doesn't look well and she can tell she's lost weight.  Made me sad to know that others can notice.  She's lost about 6 lbs. in the last 6 weeks.  That's a lot to lose on a 47 in frame!  

Meanwhile we're still waiting to hear back on our second opinion.....


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## Momto2girls (Nov 16, 2013)

I am so with you. Apparently my child isn't sick enough either and also has nonspecific inflammation. I think that's why I am so reluctant to scope her again. What if it is the same?! Hang in there .... I'm so sorry she has been miserable lately!


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