# Our Vasculitis Journey



## DanceMom

We saw the Rheumo today and the appointment went fairly well (meaning I was satisfied with most of the answers I got).  As for the cutaneous vasculitis, most of the spots on her legs were clearing but he took a picture to monitor progression and to show the GI.  He also believes the spot on her back is vasculitis, not a bruise.  Apparently both are non-blanching but since she has known vasculitis and no known trauma to the back he figured it was vasculitis.  I was not impressed that it now affects more than just her arms and legs.

I was interested in knowing the exact type of vasculitis she has but he said without physical evidence via biopsy that wasn't possible.  So for now it is simply labeled "systemic vasculitis" and we're hoping the mtx prevents further problems.  If after 6 months she's still experiencing symptoms then we'll discuss biopsies.

We did discuss her labs and the downward trend of wbc and rbc.  He really didn't think it was a problem at all so time will tell on that one.  We also discussed her growth (or lack of really) and realized that she's gained 2kg and grown 2cm in the past year.  So she now is considered to have a "growth disorder" as well.  She'll be 9 in a few days and still hasn't reached 48 inches!  Because she had good range of motion he figures she does not have arthritis, just joint pain likely caused by the vasculitis.

And most importantly she had her first mtx shot.  According to A I did "a good job but there is room for improvement!"  Silly girl!  No side effects so far but I'm not sure how long that would take.  

She'll have labs in 2 months (which I thought was a long time but I know what to look for regarding liver toxicity) and a stool test now.  The stool test is a new one for us - alpha-1 antitrypsin.  He wants to see if she is losing protein through her stool.  We'll try to get that done this week.

We see both the GI and Rheumo in February so hopefully things will be uneventful until then!  I know that the mtx takes 6-8 weeks to work but her GI symptoms are minimal for the time being so we opted against steroids.  Should things change we can change plans.


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## DanceMom

So far no real side effects aside from a sore leg at injection site. Maybe I do need to improve on my skills? Lol Anyone else's kiddo get sore after the shot?

And she can't seem to shake this blasted fever. It started Sunday night but was gone by Monday morning only to come back Tuesday night. Still has it though she feels okay. I sometimes wonder if she remembers what it means to feel good!


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## Maya142

No soreness here. You could try icing her arm or leg before the shot? We did that the first few times but after that my daughter decided it wasn't necessary.
Poor A, hope she feels better soon!


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## Farmwife

Hugs
The first shot for Grace hurt her leg for a few hours, second shot didn't hurts as much and the third didn't hurt as all.
By the third shot it was easier to give. That help her pain.
She is do for her fourth today. We'll see if there's pain afterwards this time.


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## DanceMom

Tomorrow is A's birthday and she's also due for her shot.  I really feel like we made the right decision in going with the mtx and I'm praying it doesn't affect her liver.  In the past week she's had only 2 days without fever and the diarrhea and stooling accidents have come back.  Yesterday I noticed a huge lump (presumably vasculitis) on the top of her arm with swelling.  This is the largest lump yet, about 2 inches in diameter, and made her entire arm sore.  This disease is ridiculous.

Hoping we get the results of her stool test very soon....


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## Sascot

Happy birthday for tomorrow! Hope the shot goes well and works quickly


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## crohnsinct

HAPPY BIRTHDAY A!  Hope she has a fantabulous day! 

What dose is her Mtx?  I ask because liver issues are my primary concern here as well.  Mostly because we have a history of liver issues on both sides of the family but O's doc said on the doses they use for IBD not usually high enough to cause a problem...it sometimes does but not as a general rule.  Here's hoping.


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## Farmwife

:bdayparty:  A


How ofter is A having her blood tested? Grace every two months but I'm not sure I want to wait that long.


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## DanceMom

She takes .5 ml (12.5 mg) injections weekly.  She already failed 6-mp due to liver toxicity and was only on it for a few months.  She didn't have any liver issues prior to 6-mp and I'm hoping that mtx won't affect her in that way.  She isn't scheduled for labs until mid-February.  Our GI tested after 2 weeks and then we continued every 2-3 weeks because her numbers continued to rise.  The Rhuematologist does things differently I guess and he wants to wait 2 months.  I liked testing after 2 weeks but I do know what signs to look for regarding the liver (severe headaches, burning/itching skin, etc.).


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## CrohnsKidMom

My 9 yo son takes 0.6ml (15mg) MTX weekly.  He was having biweekly bloodwork for the first 3 mos or so, but now goes bimonthly.  His liver enzymes remain slightly higher than normal, but the GI says he is not at all concerned.  Easy for him to say!  Thanks for mentioning the signs of liver toxicity, DanceMom.  I'll watch for this in my son.  Hope the MTX works for your daughter, and Happy Birthday to her!  Farmwife, hope the MTX works well for Grace too.  Take care!


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## DanceMom

Our GI said he was not even slightly concerned about the liver enzymes until they got to 3x the normal limits.  At that point we retested in 10 days and they were over 10x the normal limit.  For a week or so prior to testing I noticed that A was very fatigued, had severe headaches, became nauseated very easily, and had itchy/burning skin with no visible abnormalities.  I'm sure each child may react differently but those were her symptoms and they started to resolve a few days after stopping the medication.  

CrohnsKidMom - How much does your son weigh?  A will be 9 tomorrow and weighs 50 lbs.  I think her 6-mp dose was on the low side (and still affected her liver) so I'm wondering how this mtx dose compares.


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## DustyKat

It is already tomorrow here! ...

*Happy Birthday A!*







I hope your day is a brilliant one. :heart: 

Good luck with the Metho, I hope all goes wonderfully well and the liver thinks it is just the best thing ever! :goodluck: 

Dusty. xxx


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## CrohnsKidMom

DanceMom, My son is 76 lbs. He put on 20 lbs while on prednisone from last Apr to Aug.  Fortunately, he is starting to grown in height.

I'm not sure how they work the dosing, but it seems like plenty for her weight.


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## upsetmom

HAPPY BIRTHDAY A


:bdayparty:


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## Maya142

Happy Birthday A! :birthday2:
Our rheumatologist did blood work every two weeks when M was on methotrexate. She was on a higher dose (1 ml) but she was much bigger than A (about 90 pounds)! It took quite a while for methotrexate to work (about 8 weeks) for us, I hope it kicks in quickly for A!


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## Tesscorm

:bdayparty:

Wishing A has a Wonderful Birthday!!!

(And hoping the MTX does the trick for her!)


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## DanceMom

Alarming new symptom - extreme arm and leg pain! She knows joint and muscle pains very well from being a dancer. But she says this is different, like a burning and tingling. Does this sound like a mtx thing? It started before she even had her shot tonight. Maybe a vasculitis thing? I'll call the rheumo in the morning if it's still going on but I was hoping maybe someone here had this before.


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## my little penguin

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/neurology/peripheral-neuropathy/

This may help you some
Wait for your doc since it can be drug or vasculitis induced or something entirely different.


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## Farmwife

It's hard to say for Grace. She's to young to say burning or tingling. However she does have horrible pains in he legs that are separate for the normal joint pains. It doesn't happen everyday. Just the legs not the arms. I've always felt it might be swelling in her spine.
Has meds helped at all? How about heat or cold packs?

I hope she feels better soon.


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## CrohnsKidMom

My son gets pains in his arms and legs several times a week, but they don't last.  It usually happens in the evening, and are gone by the next morning.  He has complained of a tingling sensation before, but it's been rare, and it began before he started MTX and seemed to be more related to his initial flare.  Hope this resolves for your daughter soon!


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## polly13

Belated happy birthday a - am of no help with new symptoms as Lucy has not experienced them.  Hopefully the will resolve soon.  Re bloodwork Lucy started mtx (orally 2.5mg) weekly and initially had weekly bloods (6weeks) then went to bi weekly, then monthly and now we are doing them bout every six weeks- she is on mtx 7 months now.


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## DanceMom

She is only slightly better this morning.  Said her arms only hurt a little now but her legs weren't much better.  She was having trouble walking but insisted on going to school.  We tried a hot shower and ibuprofen but they did not ease the pain.  She wouldn't allow me to try an ice pack because she said she couldn't stand the thought of cold on it.  I emailed the doc and am waiting on a response.


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## Sascot

Hope the pain settles down on its own. Hope they phone you back quickly.


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## Jmrogers4

Hugs! Hope you get an answer and A some relief quickly


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## DanceMom

The darn Rheumo never called.  His office is ridiculously difficult to communicate with.  Fortunately A's arms/legs have gradually gotten better as the day has gone on.  And we're counting our blessings that the mtx has not given her any side effects thus far!!


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## DanceMom

The nurse emailed today.  She said if I don't hear from the doc by Monday to call and let her know.  Monday?!?  Meanwhile my child is freaked out that her legs are burning and it is making it difficult for her to walk, let alone dance and tumble!  

And still no results for the stool test.  I'm struggling to keep calm.


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## Farmwife

Um....no. can you call her GP and maybe light a fire. Maybe another doc calling well help.
I mean all your asking for its a simply answer. Even if it's wait and see some more, it will still be an answer. Has she seen a Nero yet? Maybe one of those can help too.


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## crohnsinct

DanceMom said:


> The nurse emailed today.  She said if I don't hear from the doc by Monday to call and let her know.  Monday?!?  Meanwhile my child is freaked out that her legs are burning and it is making it difficult for her to walk, let alone dance and tumble!
> 
> And still no results for the stool test.  I'm struggling to keep calm.


O.K. if she said I told the doc and the doc said to wait until Monday, maybe just maybe I would wait....cut me some slack people I said maybe!

But what does if the doc doesn't call by Monday mean?  Did he get the message...was it the whole message or just that you called?  Does he know what kind of pain she is in? Is he incredibly busy and just not able to make time for you....then refer me out!  Sorry time to call nurse and get more details on what the doc was told and what he actually said.


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## Mehita

Maybe rephrasing the question to "Do I need to take her to the ER?" might get a quicker response?


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## my little penguin

Yeah that ^^^^
The one time DS had "numb" tingling arms and legs 
Gi had us call Neuro who had us see the ped that day and was on the phone with them to make sure things were ok.

Bug hugs


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## DanceMom

Last time I spoke with the Rheumo I asked him how he preferred me contact him with concerns - email or phone call.  He said he prefers I email and he will usually return with a phone call (like a week later!).  So I emailed yesterday morning and the nurse's exact response today was:

"I sent your concerns to Dr. B.  Let me know if you do not hear from him by Monday."

They always make me feel like I'm overreacting and these kinds of things just happen.  I'm not sure how serious this tingling/burning sensation is but it is new and it freaks both of us out.  I guess my plan will be to wait and hope I hear from the doctor tonight (he tends to call in late afternoon or early evening).  If he doesn't call and she's still feeling this way in the morning I'll call the Pedi and get her thoughts on it.  I'm not even sure if she's been filled in on the whole "vasculitis" issue or what her experiences with that are.  The Pedi's nurses are dingbats so I'll have to be pushy to get the actual doctor on the phone.  I can easily take her in for an office visit or make a trip to the ER after work tomorrow.

I just want things to be simple for once!


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## crohnsinct

Well sorry that is just a plain old silly way to work things.  If you don't hear from us...geez!  It takes 20 seconds for them to shoot you an email saying...not worried let's wait and see.  Gosh...I have bothered our GI with waaaaay less things and I always get a response same day.  No nice late night phone call chats but at least I hear his words.  

Yeah, I would take her to the ped in the a.m. if this keeps up.  Bet he would answer if a ped called with concerns!


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## Malgrave

DanceMom, this may interest you:

http://www.uab.edu/news/latest/item/3703-uab-part-of-study-of-new-drug-for-vasculitis


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## DanceMom

Still having the burning/tingling in her legs and a huge new outbreak of nodules on her skin. Her legs are covered, as are her arms. At least 25. She has a new one on her lower back and one on her chest as well. Trying to avoid prednisone but this is getting ridiculous!


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## Catherine

I second going the pedi and having them call the specialist for a treatment plan.


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## kimmidwife

Happy Belated birthday!Sorry we missed it. I am sorry to hear that she is having this pain. It definitely sounds like something the doctor needs to respond to urgently. Like the others said saying to the nurse do I need to take her to the ER now might help light a fire under him to give you an answer. Otherwise can you just call his office and say look this is going on we need an urgent appt with the doc tomorrow and get them to squeeze her in to be seen? We have done that with our docs in the past and they have always squeezed us in.


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## my little penguin

We have done that as well
I only ask when it's absolutely necessary so they know if I am asking he needs seen.


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## Mehita

Has dermatomyositis been ruled out for A? 

http://www.rheumatology.org/Practic...es_And_Conditions/Dermatomyositis_(Juvenile)/


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## DanceMom

The Rheumo called me this morning and did apologize and admitted that he forgot.  He's human so I'll forgive him, lol.

He said that her symptoms sound very much like a vasculitis of the medium blood vessels but of course he can't be sure without additional testing.  He wants to schedule an incisional biopsy to verify that we actually are dealing with vasculitis.  He tried to get me to do this before but I'm sick of her being cut on.  At this point we need definite answers so I feel it is something we have to do.  I want it done without sedation so if anyone has experience with that please share!  She's going to be determined to dance regardless of stitches, lol.

He's also considering an EKG and a nerve conduction study but that may change depending on the incisional biopsy results.  He's supposed to consult with neurology and cardiology today, see her first thing Monday morning (and hopefully schedule the biopsy with a surgeon for Monday) and we'll go from there.

Should she develop a fever, have swelling, or be unable to walk I am to call his cell phone and he will admit her to begin testing immediately.  I'm just a complete wreck.  What started out as chronic diarrhea, bloody stools, failure to thrive, and erythema nodosum has now turned into some rare vasculitide that could attack every single part of her body!  And we aren't even 100% sure that this is the correct diagnosis either!!

Thank you all for being there for me, offering support, information, and advice.  It is difficult to say if IBD is an underlying factor in all of this but this forum is my lifesaver in these stressful times.  You guys are awesome!


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## crohnsinct

Forgot?!  Exactly! Crap happens and this is why you have to hear from their mouth what they are saying...otherwise how do you know you didn't go into the black hole.  

I am glad he is on it but so sorry for this ride you are on.  But try to not go too far down the highway just yet.  Make a U turn and come back.  Maybe get off at the nearest rest stop for a bit.  Are there rest stops with wine? 

I really hope all those awful things don't happen over the weekend and Monday comes fast and brings some solid answers and a really good plan.


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## Sascot

So sorry to hear that. He may have forgotten but sounds quite efficient now. Hope you don't have to go in sooner than Monday. They should be able to do the biopsy with a local anaesthetic. Hope they can help soon.


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## DustyKat

So good to hear the doc finally got back to you. :ghug: 

Most biopsies can be performed using local anaesthetic only. Do you mind if I ask why you wouldn’t want to use sedation? 

Dusty. xxx


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## Catherine

DanceMom,  you are the proud owner of the GI mobile number.  You need find out when you are allow to use this number.

I also have the GI number, which can I have ER ring the GI on.  I am also allowed to SMS the GI that blood tests have been done.


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## DanceMom

She had a punch biopsy in the dermatology office and she did fine. The nurse practitioner did a great job of distracting her and blocking her view of what was happening. I wasn't sure how different an incisional biopsy would be. Our hospital doesn't have a dermatologist so this biopsy will be done by a surgeon.

 I try to avoid anesthesia whenever possible. A had a reaction after her first scopes when she was 5. She suffered from extreme memory loss and displayed very bizarre behaviors. She thought I'd just bought my car and I'd had it for months. She kept trying to urinate in her toybox and when we tried to redirect her to the toilet she'd stand on it. She would repeat the same questions and phrases constantly. She forgot her dances, forgot how to read. You get the picture. This lasted for months. She's had anesthesia several times since without issue but I hold my breath every time. The anesthesiologist believes her reaction was not to the anesthesia but to some other med given at that time. Regardless, I just want to avoid the risk. I talked to A about it and she's fine with the procedure just mad about the scar it will leave. Sounds vain but the dermatologist told her it wouldn't leave a scar and it left a dark purple one. She feels like she was lied to..


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## Maya142

Poor A, that does sound very scary. I hope the biopsy goes well. Can they do it somewhere that's easily covered up so that she doesn't have to worry about the scar?
Will be thinking of you both:ghug:


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## DanceMom

They have to biopsy one of her lumps and I guess the Rheumo will decide which one would provide the best results. The larger ones that look the deepest are on her shins. I think she's tired of looking like she's been to battle. She's 9 now and her appearance is becoming more important to her.


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## Maya142

My sister has a scar on her leg which always really bothered her. She started using Mederma (which is over the counter) and it has become a lot lighter.
I don't know if A could use something like that, but it might be worth asking her dermatologist/rheumatologist?


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## Farmwife

My hubby lost a chunk out of his nose.  So he has a scar. The plastic surgeon said to use sunscreen for at least a year on the spot to keep it from turning purple.


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## my little penguin

DS had an incision biopsy under anesthesia . IT is in area that does not get sun but still turned purple.
but boys love scars.


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## DustyKat

Good grief DanceMom! Little wonder you are loathe to have anaesthetised. :ghug: 

We have found that Bio Oil works really well on scar tissue.  

Sending loads of luck and well wishes for the procedure. :heart:

Dusty. xxx


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## DanceMom

Rheumo called this afternoon to check on A. She's mostly the same - burning/tingling legs. She said it feels very much like getting into stinging nettles. If you've ever gotten into them before they are awful! Her legs definitely get worse with any physical activity. 

The Rheumo set up a Neurologist appointment first thing Monday with the division chief. Hopefully he'll have an idea what is going on. Then we see Rheumo. He couldn't schedule the biopsy for Monday so not sure when that'll get done. I guess I'll just go with the flow come Monday. 

Shortly after getting off the phone with the doctor A had a BM that she said was full of blood. Typically she calls me but we were at the mall and she'd gone into the bathroom alone. We haven't seen blood in well over a month. I'm getting very nervous because things seem to be escalating quickly.


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## Farmwife

Would she go to the hospital? I now she probably would not want that but then again we don't want any of this.

Hugs


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## DanceMom

We want to keep her home if at all possible but if she develops a fever she'll be directly admitted. If the blood happens again and I see it I'll take a picture and call the doctor immediately. We had some errands we needed to run today but we're going to take it easy tomorrow. The blood was just very unexpected.


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## Farmwife

Hold in there mom. Where all praying/hoping/wishing that things will get turned around quick for A.


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## Sascot

Thinking of you, hope it goes well at the appointment tomorrow


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## DanceMom

Another piece to the puzzle - just got her stool results back. Her alpha1-antitrypsin is high. Normal is less than 55. Hers is 80. So if I understand correctly this means she's losing proteins through her stool. Anyone know what's done for this? Interesting to me that the Rheumo ordered this test and not the GI.


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## kimmidwife

Don't know what is done for this but it is good your rheumo seems on top of things. Nice you have a good doctor.


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## araceli

I really hope things better soon. Sending hugs.


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## SupportiveMom

Pleas forgive me if you have answered this DanceMom. I did my best to read through the thread to understand more before asking this question. 

How did your doc come upon the diagnosis of Vasculitis? I ask this as I am still searching for some type of remission or relief for my daughter. She has good days, but knowing her good days are well beyond the scope of acceptable it has entered my mind maybe we are treating the wrong thing, or she has multiple issues on top of the Crohn's we aren't treating.


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## DanceMom

SupportiveMom - A has been getting these lumps on her body, mostly arms and legs, for the last 7 years or so.  They start out as small red bumps that resemble bug bites but turn into dark lumps that look similar to bruises.  They look identical to erythema nodosum and that seemed to fit with her Crohn's diagnosis.  Our GI wanted a biopsy so the dermatologist did a punch biopsy of one of the nodules.  That pathologist read it as erythema nodosum.  However, our Rheumatologist was not convinced and ordered the slides to be reviewed by a second pathologist.  This pathologist concluded that it was actually vasculitis and the Rheumatologist agreed.  Unfortunately the punch biopsy could only detect small vessel vasculitis and now an incisional biopsy is needed to see if it could actually be medium vessel vasculitis.  I wish that had been done in the first place!

A's Crohn's diagnosis was never 100% clear but it seemed like the best fit at the time (and still could be a very real possibility).  Vasculitis can be secondary to Crohn's or other autoimmune conditions like Lupus, or can be a primary disease like ANCA-associated Vasculitis.  We haven't narrowed down the exact type of Vasculitis A has but we're working on it.  It seems to be a slow and complicated process and vasculitis tends to manifest differently over time.

Do you believe your daughter has Vasculitis?


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## SupportiveMom

Man these journeys we are all going through do a tug on your heart strings! 

I don't know if my daughter has anything else but Crohn's and a bizzare sense of humor. I just know I haven't seen much of  change in her in the last year & a half and am now wondering if we are treating everything, the right thing or the thing she has the best way possible for my kid. Considering she seems resistant to medication, has lots of allergies, and is still not much better I am looking at alternatives in hopes to get her on the right track. I will look into this more and bring it up with her GI this month when we see her. Please keep updating how A does.


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## DanceMom

Has she seen a Rheumatologist?  We have found ours to be most helpful and had our GI not insisted we see him I don't know where we'd be right now.  He has run numerous tests that the GI did not and it has helped us to get a more clear picture of all of A's issues.  She's definitely not a textbook kind of kid and we are blessed to have a team of doctors (GI, Rheumatologist, Ophthalmologist, Neurologist) that are all working together to help her.


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## SupportiveMom

Infectious Disease Doctor we see is also a Rheumatologist. Didn't even think of her. We were seeing her because of the rash she developed from Methotrexate & the catch up on vaccines she missed being in the hospital that she didn't/couldn't take when they administered them in school. This is why we need support groups, I would have never thought of asking these questions!


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## DanceMom

Our Rheumatologist is also an Immunologist so I think that insight has been helpful too.  He ran some labs and discovered that A has low IgG and then ran an Alpha-1 Antitrypsin stool test which showed that she's losing protein through her stool.  I'll have to ask him tomorrow if this is related to the vasculitis or something else entirely and what he plans to do about it.  Our GI actually suspected she had an immune deficiency and the Rheumo only ran the tests to appease him (ha!).  A team approach is 100% necessary with these complex kiddos.  A's doctors are in constant communication about her care and that has made such a difference.


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## kimmidwife

Having the right team really makes all the difference!!!!


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## DustyKat

DanceMom said:


> Another piece to the puzzle - just got her stool results back. Her alpha1-antitrypsin is high. Normal is less than 55. Hers is 80. So if I understand correctly this means she's losing proteins through her stool. Anyone know what's done for this? Interesting to me that the Rheumo ordered this test and not the GI.


This is an older article I have saved DanceMom: 



> Abstract
> Intestinal protein loss was measured by means of faecal alpha 1-antitrypsin clearance (alpha 1 ATC) in patients with various gastrointestinal diseases. In healthy controls and in patients with various gastrointestinal diseases there is a remarkable intraindividual fluctuation of the faecal protein loss from day to day. Alpha 1 AT clearance calculated from a three-day stool collection is usually sufficient to indicate enteric protein loss in Crohn's disease, ulcerative colitis, celiac sprue, and Whipple's disease. However, in two patients with intermittent diarrhea coinciding with edema and hypalbuminemia excessive enteric protein loss was observed on one day during a two week stool sampling period only. In one of these patients suction biopsies showed histologically intestinal lymphangiectasia of a 10 cm segment of the upper jejunum. The alpha 1 ATC is a suitable and cheap method to determine enteric protein loss without the use of radioactive tracers and therefore can be used in clinics without departments of nuclear medicine. In contrast to the conventional Gordon test the use of the endogenous marker alpha 1 AT facilitates the determination of faecal protein loss over long time periods, which might be of value in the diagnosis of intermittent occurring enteric protein loss. Furthermore, the endogenous marker alpha 1 AT is of use in following the course of illness and in monitoring the efficacy of therapy in patients with enteric protein loss.
> 
> http://www.ncbi.nlm.nih.gov/pubmed/2475983


I am not sure what the remedy is other GI disorders but protein loss in Crohn’s, which is quite common when flaring, is to bring the inflammation under control and thus treat the cause of the loss. Then try to rectify any existing deficiency through diet and if severe TPN. 

Dusty. xxx


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## DanceMom

Finally home from today's appointments!  First we saw the Neurologist and he's lucky he's still alive.  He did a very "thorough exam" and then proceeded to tell me that I needed to consider that this was psychological, that there was nothing that could be done for her.  I had to chuckle at him and told him not to blame a 9 year old because he wasn't able to diagnose her in 15 minutes.  Complete waste of time.  I could have tickled the child with cotton at home and let him know if she could feel it!

Then we saw the Rheumo who was much more compassionate.  He said he believes that what she's feeling is claudication caused by vasculitis - specifically Polyarteritis Nodosa or Takayasu's Arteritis.  She had an EKG today, which was normal, but the Cardiologist explained that it usually is in children with these types of vasculitis.  The next step is an MRA which I'll schedule tomorrow, hopefully for next week.  Hopefully this test will make a diagnosis more clear and the incisional biopsy won't be necessary.

He also diagnosed her with protein losing enteropathy.  He's left a message with the GI about this latest finding and they will discuss how they want to treat it and get back with me.

I'm rather numb at the moment but I'm sure the tears will come later.  Off to dance class now so that we can pretend life is normal.


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## Maya142

Your poor girl DanceMom. What a ridiculous doctor! I'm sure he thinks the bloody diarrhea is psychological too. 
I hope the MRA (is that like an MRI?) goes well and you get some real answers.:ghug:


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## PsychoJane

I'll jump in and just say that, even though things remained unsure back in the days, I probably had PAN vasculitis (Polyarteritis Nodosa). I mean, I've been stamped with that diagnosis as a teenage, following an episode I had while my crohn was flaring with extreme intensity. 

Juggling with medications in attempt to stabilize my case and excessive inflammation through my digestive system, I had that series of strange reactions (bruise like spot on my leg, headache, seizure, etc). I had series of test like angiographies amongst many others to try and diagnose my case. Biopsies were never conclusive but angio was showing anomalies of vessel in my kidney, mesentery and brain.

I believe that if it was indeed a vasculitis, it was possibly induced by the medication cocktail they had recently introduced and the global irregularities of my immune system and blood parameters at that time. 

I was then treated with a "chemo" course. Chemo is a bit heavy has cyclophosphamide concentrations are way small compare to the usage in oncology but anyway. In my case, it never came back. Hopefully for your daughter it can possibly resolve like my case did. It's already quite different since you say it's been there for a long time but it's worth hoping medication will help a lot. I believe the cyclophosphamide has probably helped my crohn  greatly too as I was in remission for 10 years after that.


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## DustyKat

Squishy hugs to you DanceMom. :ghug: 

Dusty. xxx


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## DanceMom

It has been a rough morning.  The numbness is wearing off.  My husband had an anxiety attack when I told him everything last night.  He realized he'd been in serious denial and now must face our new reality.

GI called first thing this morning and he's very concerned about her stool results (alpha-1 antitrypsin).  He wants her to have a Fecal Calprotection test but is trying to get insurance approval first (ours always fights it and I always end up paying out of pocket).  Her results have always come back normal in the past but he wants to try this before scoping again.  I have no idea what he's looking for, other than the obvious, and I don't even want to know right now.  If she has any more blood I'm to call him immediately and he said he would set up a scope ASAP.

Really hard to focus at work with all this going on!


----------



## Tesscorm

I'm so sorry that you are dealing with so much. :ghug:  It's no wonder you can't focus on work right now...  when S was diagnosed, I remember going to work and being in a complete daze and thinking it was all so inconsequential in comparison to what else I had going on (mind you, I still feel the same way! )

It certainly is a lot to take in all at once, however, all these tests, appointments, diagnoses or misdiagnoses are all moving you ahead towards treatment for A!  I do hope some definitive answers come soon for you though, it's so hard to just be waiting and waiting for solid and conclusive answers and diagnoses. 

Thinking of you!! :ghug: :ghug:


----------



## DustyKat

If the vasculitis is an EIM of IBD then like many of the EIM's they often appear well before the physical and clinical signs of the primary disease, which only serves to muddy the waters.  A clear or indeterminate scope 2 years, 1 year or 6 months ago may produce far different results today. 

Good luck mum, you are all in my thoughts. :ghug:

Dusty. xxx


----------



## my little penguin

Yeah that ^^^
DS had vasculitus in 2012 after dx but when his system was a mess in all fronts. Every time we decreased his pred it came back .
Hope things calm down today .


----------



## kimmidwife

Good luck! I hope you finally get some definitive answers. Tell your husband we all totally understand about the denial. It is not easy!


----------



## DanceMom

MLP - How did the vasculitis present in your son?  Was it only cutaneous or more systemic?

A woke up feeling really crummy this morning.  She said her legs felt worse and she had a stomach ache.  She tried to get ready for school anyway but ended up vomiting.  I emailed the GI and still waiting on a response.


----------



## DanceMom

GI nurse called.  They want to see her this afternoon.  I'm a little surprised they want to see her when I was expecting them to say just try the Zofran.  This is never-ending.....


----------



## DanceMom

Met with the GI, Rheumo, and General Surgeon all at once today which was nice because they collaborated and we have a tentative plan. They all thought her tummy felt "full" so she had an x-ray (no results yet).  She has labs and fecal calp scheduled for tomorrow, CT Angiography for Monday, and a biopsy whenever another large nodule pops up. For now we're giving Zofran and waiting.


----------



## Sascot

Good to know all the docs are collaborating. Hope the tests go okay. Sorry she is still not doing well


----------



## Farmwife

Sorry I wrote a reply yesterday but it didn't post.
Glad a plan for now is in place. How is she doing today?


----------



## DanceMom

Just got labs done and hoping to complete the fecal calp today as well.  She just took some Zofran and went back to bed.  No vomiting but she says her tummy hurts and she feels nauseous.  She did eat a lemon bar before the labs (because I made her!) so at least she has something in her tummy.  Hoping we get word about the x-ray soon.....


----------



## DustyKat

Thinking of you DanceMom and hoping A is feeling better? :ghug: 

Dusty. xxx


----------



## kimmidwife

Hope she is feeling better! So glad to hear all the docs are collaborating. That is nice to hear!


----------



## DanceMom

A is feeling much better than she was earlier this week. She said her stomach still feels crampy at times and I'm thinking she may be a tad constipated (which is unusual for her). No test results yet. .....


----------



## kimmidwife

Hopefully you get some results quickly!


----------



## DanceMom

Confused. Just checked her online account and saw that the doctor changed the orders from a CTA back to MRI and MRA. No idea why. Can't get it done tomorrow though because no insurance approval yet. Several new nodules today though so calling the surgeon in the morning to see if he can fit her in.


----------



## Catherine

Our GI does not like to do CT scans on girls, he does not like to radiate the ovaries unless it is an emergency situation.


----------



## DustyKat

Where on the body is the scan being done? 

As Catherine has said, an MRI scanning is preferred over CT scanning particularly for children because CT’s use radiation to produce images whereas MRI’s use radio waves via magnets. 

Also having IBD is a consideration as the abdomen is the area of the body that absorbs the most radiation. Given that IBD is for life many doctors these days look to reduce the amount of imaging done via technology that uses radiation. 

Good luck! I hope they are able to fit her in. :ghug: 

Dusty. xxx


----------



## DanceMom

He first ordered the MRI/MRA of abdomen, pelvis, feet and legs then changed it to CTA. He said the CTA would provide better images and she wouldn't have to be in the machine for as long. He expects the MRI to take 3-4 hours. Another doctor must have convinced him that the CTA was not the best way to go.

Calling the surgeon now. ....


----------



## DustyKat

Unfortunately the trade off for no radiation is the time factor. A CT of the abdomen takes about 3 minutes. an MRI takes 30-45 minutes. Add the other areas required and it doesn’t take long to reach 3-4 hours.  

It is also true that CT’s and MRI’s each have advantages over the other when it comes to imaging and detecting anomalies. One is good at picking up one thing and the other something else. MRI’s being newer technology have had problems with imaging quality at times but I imagine as time passes this will continue to be refined and improved. 

So the problem you may run into with requiring extensive scanning is, will A be able to lay still for that long. Any degree of movement will likely degrade the image quality and the more movement the worse it will be. 

Has A had CT scans before? If not do you weigh up your options? 

MRI - no radiation (the biggie here), extensive scanning time, are the images of the quality that is needed to detect the issue they are looking for. 

CT - radiation, significantly faster image time, less chance of movement occurring, ?superior images. 

The abdomen will be the area of greatest radiation pick up but is a one off worth potentially receiving the answers you are looking for? 

Are the risks potentially any greater than those we face everyday with IBD in regard to medication? I think not and in my opinion they are much less so when CT is used sparingly.

Good luck mum, you are in my thoughts. :heart: 

Dusty. xxx


----------



## Maya142

3-4 hours is such a long time. Is A going to be sedated? My daughter had MRIs of her hips and knees and that took about 2 hours and it was really hard for her to stay still that long.
They had to redo some parts because she moved slightly.
Good luck, thinking of you both!


----------



## DanceMom

The biopsy is over and A did great! The surgeon was amazed that she never even flinched and even watched most of it. He told her he was reluctant to do it without sedation but that he was very impressed with her. So proud of her! 

She had a bloody stool this morning but seems to be feeling okay. I'll email the GI if it happens again. For now I'm going to pretend that all is well and go watch a movie with my brave little sweetheart!


----------



## kimmidwife

Good job!!!! Happy to hear she did so well!!!


----------



## DustyKat

Oh well done A! What an absolute champion! :dusty::dusty::dusty:

I hope you get solid answers for your lass very soon mum and she long and lasting relief. Good luck! 

Dusty. xxx


----------



## DanceMom

So much for pretending that "all is well".  We spent a good portion of the movie in the bathroom.  I don't even know what disease to curse because we don't even have an exact diagnosis yet!!  Guess I'll email the GI.  Maybe he can pull her lab results and figure something out.....


----------



## Sascot

Sorry to hear that!


----------



## DanceMom

More blood....more vomiting.....

I've been emailing back and forth with the nurse this morning so hopefully we'll figure something out soon.  Calprotectin still isn't back.

Is it okay to be giving Zofran 1-3x a day, everyday?  Can it be a long-term med?


----------



## araceli

Sorry things are not going good yet. I really hope you get answers soon. Do you know how long it takes for Calprotectin to be back?


----------



## DustyKat

Mega hugs to you and lass DanceMom. :ghug: 

Have you had any answers re the Zofran? 

I know it often given as a twice daily and I think with paediatrics the reduced tablet dose means it can be taken up to three times but hopefully this has already been clarified for you. 

I don’t know about the long term use and what studies would have been done. In view of the fact that is was initially a drug used with chemotherapy treatment and post op the use would have had a limited time frame with a very specific use and expected outcome. Now that it has moved away from that it is no doubt being used long term for various conditions. 

I hope you have had answers by now and things are settling for A. :ghug: 

Dusty. xxx


----------



## DanceMom

Calprotectin usually takes a week or so (I think).  Hoping we'll have the results tomorrow.  Picked up our sh*t kits (haha....yes hubby and I actually call them that) for the c-diff and parasite testing.  Sometimes I wonder why we even bother.  They're always negative.  Poor girl has had explosive diarrhea 5 times today already, vomited twice.  I'm just getting tired of twiddling our thumbs while she declines.

*Update* - Right after I posted GI emailed and has ordered fasting labs for tomorrow morning.  Not sure which ones; she's never had to fast before.  Also ordered Flagyl, Neurontin, Prevacid, and Ultram.  Hoping it helps!


----------



## Maya142

My daughter occasionally takes Ultram for pain. It makes her sleepy and she finds it hard to concentrate and do homework after taking it, but it helped her both with joint pain and with abdominal pain. 
Hope it helps A and you get answers soon!


----------



## DanceMom

I'm so angry right now I'm fighting back tears.  First of all, no one has even looked at my daughter's lab results from last week.  Both the Rheumo and GI nurse are arguing about who ordered the labs and both say they can't find them in the system.  

And then I get the pathology report from her leg biopsy which reads: RIGHT THIGH SKIN AND SUBCUTANEOUS TISSUE, BIOPSY:
Mildly edematous skin and subcutaneous tissue with recent hemorrhage
and mild superficial dermal infiltrate of mononuclear cells with rare
neutrophils and eosinophils (see note).
NOTE: The primary histological findings in this biopsy include a
subtle superficial perivascular dermal infiltrate that includes rare
granulocytes, as well as mild dermal edema in association with
evidence of recent hemorrhage in the subcutaneous tissue. These
findings have many similarities with the patient's previous skin
biopsy (see pathology report NS13-945), although the findings in the
present biopsy are significantly less impressive than in the previous.
The histological findings described above are not definitively
diagnostic for a vasculitis, panniculitis, or a mass lesion.
Nevertheless, the constellation of findings are somewhat suggestive of
urticaria or hypersensitivity reaction, and in conjuction with the
clinical history and findings, raise the possibility of an urticarial
vasculitis or a related disease. Of note, urticarial vasculitis may
precede the development of a variety of systemic disorders, including
-but not limited to- PAN and inflammatory bowel disease, both of which
have been questioned clinically.

So she's been cut open twice and they still don't know what these lumps are all over her body!  This is why I was hesitant to do a second biopsy in the first place!!  Her lesions look nothing like hives so I don't buy the "urticarial vasculitis" crap.  I'm so fed up with doctors not being able to tell me what's wrong with my child!!!


----------



## SupportiveMom

Big hugs! This has got to be so difficult... sending you all the support... you are being such a good advocate for your girl.


----------



## Farmwife

I told you I needed time away...........................:yfaint:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3277093/
The kind of hives they are suggesting it's not the normal kind.
Look at the link and also make note of the GI involvement.
Maybe???


----------



## DanceMom

It looks nothing like the pictures in that link. It looks exactly like erythema nodosum and PAN. I spoke with the Rheumo nurse and she said the doctor would call me later. Not holding my breath......


----------



## DustyKat

:ghug:

God I hope the doc doesn’t keep you waiting too long DanceMom.  

Through all this are you leaning a particular way, disease wise mum? 

In my thoughts. :heart:

Dusty. xxx


----------



## Maya142

Really sorry to hear all of this, thinking of both of you:ghug:

Have you considered getting a second opinion from a rheumatologist? 
I hope they find A's results soon, it's totally ridiculous that they don't know who ordered the tests!


----------



## my little penguin

Can you have the biopsy slides sent out ( both sets ) plus her scope slides to one of the big three for review ?
This way no trip - just review 
Not sure on top pediatric Rheumo hospitals 
But since there are so few ped Rheumo to begin with and sometimes pathologist reports are different based on the shear number and experience of the pathologist with the particular disease .
Have you contacted nih ?
Maybe send blood sample and biopsy slides there ???

Big hugs your way so very frustrating


----------



## DanceMom

Got last week's labs back (at 2 AM this morning! lol).  All looked good except low WBC again.  Globulin was just barely in the normal range but that's an improvement.  Yesterday's labs are trickling in.  Still low WBC, but CRP and Prothrombin time are normal.  No stool tests back yet.

Glad I didn't hold my breath for a doc to call about the pathology report.  The GI nurse did write to let me know it was back and to find out if I'd spoke with anyone about it yet.  The GI department is awesome and I love them to pieces.

If anyone ever calls me maybe I can try to get a better understanding of the pathology report and what it actually means.  I'll definitely inquire about a second opinion.

A started Flagyl, Neurontin, and Prilosec today so hopefully we'll see some improvement pretty soon.  I'll update should I get a phone call.....


----------



## Maya142

Just wanted to say in terms of pediatric rheumatologists we have been to Boston Children's, Children's Hospital of Philadelphia and the Hospital for Special Surgery (in NYC) for second (and third, fourth, fifth) opinions. I was very impressed with both Children's Hospitals - I don't know how they rank for ped rheumatology but the doctors there were fabulous. I know that's quite a trip for you, but if you are thinking of traveling, it might be something to research. I believe Boston Children's at least (and possibly CHOP, can't remember) has a good immunology program which might help with A, since she's so complicated.


----------



## DanceMom

Still no phone call.  Whatever.  The biopsy site seems to be healing nicely and that's the most important thing right now.  I'm going to disregard the 6 new lumps that appeared on her arms and 2 lumps that appeared on her back overnight.  I've lost hope that we'll ever know what they are.

Some more labs came in.  Cortisol was normal but IgG is still low.  I'm guessing that's related to the protein losing enteropathy but no one seems to be overly concerned about that for the moment.  Still no stool test results.  

A is having about 6 BMs a day now, not all diarrhea but most contain visible blood.  Besides the blood, can having 6 BMs a day be normal?  I'm mostly worried about her losing weight but maybe I'm overreacting and it is normal in some people?

She says she feels okay but she is very tired and emotional.  Very much like when she first started Prednisone.  Could this be from the Mtx?  Maybe she isn't being completely truthful about how she feels?  She did tell my Mom that she didn't want to tell me that she'd vomited because she was afraid she'd have to go back to the hospital.....


----------



## Farmwife

I'm so sorry. I wish I could find wise our more poetic words but I can't.
Hang in there mom. Your going great.


----------



## araceli

DanceMom... I am so sorry you are going thru this. I can relate with you with one of my kids. I change Doctors, I have question my self, I got mad with Docs, you name it. No, you are not over reacting. all your worries are valid and understandable. I have learned the following, Doctors have 200 patients, I only have mine. I get the results from the lab and called the Dr.  every day until they tell me they got them. Some of our kids don't follow the normal" rules of the diseases. One of my kids Dr told me they still don't know about all the diseases out there, so the only thing he can do for my son is to keep looking and try to give him a better quality of life mean time. Do I like this? NO. I am pretty sure you, like everybody else are doing everything we can to find out what's wrong with our kids, and be able to fix it. Don't feel bad. We may want to have a magic wand and fix everything, but is not always possible. Try to take the biopsies report to a pathologist who has experiences in vasculitis in kids. I know is not an easy task. I really hope you, me and all of us in the same boat, find answers soon.


----------



## Mehita

How's she doing today?


----------



## DanceMom

Mehita - Thank you for asking about A!  Her BMs seem to have slowed down some, only 3 yesterday.  Still visible blood.  She says she feels fine but I'm pretty sure that she's being less than truthful.  She doesn't want to miss anything at school, church, or dance so she pretends all is well.  I admire her determination I suppose.

Her fecal calprotectin results just came back - 461.4 (norm is < 162.9).  She had this test last year and her result was 20, even with symptoms.  So I know that 461 may not seem huge compared to some of your children but for her I think it is pretty significant.  I haven't heard from the GI yet to get his take on it but I'm sure he'll call or email soon.

I realize that I haven't been dealing with all of this very well.  I feel on the verge of a breakdown most of the time and that's not okay.  The message at church yesterday really spoke to me and I know that I have to give it to God at this point.  For those of you that pray, please pray for A's doctors - that they will work together to find answers for her.  This has gone on entirely too long.....


----------



## Jmrogers4

I think FC is a huge indicator when you have baseline of what is normal for them.  Jack's was not exceedingly high either 393 or something close and normal was 90, it led to some further testing for us and found out he has inflammation in the small bowel.  We still questioned whether it was high enough to do anything about.  Well after 2 Remicade infusions the turn around is unbelievable so maybe it was even worse than what we thought kwim.
Prayers to you both that you get things figured out and she doesn't have to hide symptoms because they wont be there and she can just keep dancing


----------



## Mehita

I hope you hear something soon. These kids push through so much. And are they "fine" because they're no worse than yesterday? KWIM? 

Like JM said, I would think a higher fecal cal than baseline will trigger some responses from the doctors. What else does a high fecal cal indicate? Crohn's, Celiac... what else?

I'm not familiar with mtx. How long is it supposed to take to kick in?


----------



## Farmwife

DanceMom our GI said it's not about a certain number with a fc count, it's moderating the tread and going from there. Grace's GI has her do a fc every three months depending on our insurance. 

Grace is going on her seventh mtx shot and its not working for her.


----------



## Maya142

M's highest fecal cal was also in the 400 hundred range. I didn't think her (first) scopes would show anything, as I was told that with Crohn's it can be in 1000+ range, but her scopes showed granulomas and inflammation and that's how we ended up with a Crohn's diagnosis.
Don't give up hope! Like others have said, hopefully your GI will look at the trend and will be able to find some answers for A.


----------



## DanceMom

The GI called.  He said the FC was considered "mildly elevated" and could be from a number of things.  He does think it warrants further investigation so another pill cam is scheduled for this Thursday and scopes for next Thursday (pending insurance approval).  A is going to be livid because next weekend is her first competition of the season.  She can only have clear liquids both Tuesday and Wednesday because they want to do a 2-day prep because of how she's already feeling.  How we can start a prep when she'll be in an MRI machine is yet to be determined....lol.

Hopefully these upcoming tests will provide definite answers.  If Crohn's is found GI said he will probably want Remicade.  If vasculitis is found Rheumo will have another medication in mind (not sure which one).  Either way she will probably end up on Prednisone as a quick fix because it worked so well last time.  I will ask about EEN if A is interested.  Not sure if that is helpful for vasculitis though.


----------



## crohnsinct

Hoping like anything these tests give you solid answers and a clear treatment option.


----------



## Mehita

I hope you get answers soon. You've got one tough girlie there who is going to move mountains some day.


----------



## DanceMom

Pill cam has been swallowed!  She ended up vomiting less than an hour later but the pill cam did not come up.  Guess it had already made its way to the small bowel?  Think the images will detect the vomiting or what caused it?  This has been an ongoing issue for the last few weeks.....


----------



## Sascot

Hope it provides some answers and comes out no problem


----------



## Farmwife

I hope a clear reason shows up this time.
You both have been through so much.
Hugs A for us and tell her theirs a forum thinking of her.


----------



## DanceMom

She's had 5 BMs and still no camera. I expect it any time now. She's very upset though and says her mouth tastes like poop. Brushing her teeth didn't help.


----------



## Farmwife

How fast did it past last time?


----------



## DanceMom

First time 3hr 15min, 2nd time was 21hrs I believe. The second time she wasn't having any GI symptoms though. It has been 12hrs and counting. ....


----------



## Farmwife

I hope it passes soon.


----------



## my little penguin

Took DS almost 50 plus hours to pass his .

Good luck on the results 
Did she have her scope yet ?
Or is that Friday ?


----------



## DanceMom

MLP- Was he having BMs during that time? I think that the other 2 times hers passed on the second BM. I'm not concerned. We just have to be 100% sure it passes before the MRI.

Her scopes are next Thursday.


----------



## kimmidwife

Caitlyn's passed after the third or fourth BM. Hope you finally get some answers!!!


----------



## DanceMom

Up to 6 BMs now, no camera.  Maybe she was FOS and it is slowly making its way down?

Bad news - my little one has a tummy bug!  Up all night with cramps and diarrhea.  She is now quarantined to her bedroom/bathroom so that hopefully A won't get it!


----------



## DanceMom

7 BMs and still no camera.  So now we are headed to a Chinese New Year party with a hat and popsicle sticks.  I wish this stupid thing would come out already!

On a positive note, my little one is feeling better.


----------



## DanceMom

She finally passed it! It came out with a very large bloody BM.  Now we can resume life as normal, lol.


----------



## kimmidwife

Glad to hear! Hope you get the results quick!


----------



## Sascot

What a relief! Glad it's passed.


----------



## crohnsinct

DanceMom said:


> Now we can resume life as normal


You mean playing with poop isn't normal?


----------



## DanceMom

MRI/MRA is complete! Well, minus the MRA of the abdomen that the insurance didn't approve. ....

A did well. They had issues getting a vein and quickly called in someone who was good with tricky veins. This has never been an issue before but I think she may be a tad dehydrated. We're having a difficult time getting her to drink, even though that's all she's been allowed today. Two days of clear liquids and prep before her scope on Thursday. I was glad we didn't sedate her for the MRI. She watched her movie and did fine. I'm hoping the GI will give us some feedback on Thursday.


----------



## DustyKat

Good luck DanceMom…:ghug:…I hope you get some news today. :heart:

Dusty. xxx


----------



## my little penguin

Good luck today .


----------



## kimmidwife

Glad the MRI went well. Was thinking of you last week when we had to be in Orlando for my other daughters appt at the new Walt Disney world pavilion at Florida hospital. It was freezing I couldn't believe how cold it was up there. We have to go back next month for a follow up I hope it will be a lot warmer!


----------



## araceli

I hope you get good news.


----------



## DanceMom

Scopes are over and we are home resting. The GI met with us at length after the procedure and explained some things. First of all, he reviewed the pill cam images earlier in the week but wanted to study them more in depth this afternoon. He saw an ulcer in her stomach and multiple patches of ulcers in her small intestine. He noted that they were not crater like or bloody in appearance but he wasn't pleased they were there now because they definitely weren't there in November. Unfortunately the part of the small intestine where they are located couldn't be reached with the scope. Doesn't that just figure? Her colon appeared normal. MRI results were not in yet but he was going to try to rush those along. He is going to consult with CHOP and possibly some others and he and the Rheumo will make some definite decisions next week. GI is thinking Remicade may be more helpful for her but wants more opinions on that. Oh, and she still has a fissure though it doesn't seem to be bothering her.

Don't want to jump the gun but it looks like we may be talking Crohn's again. I'll take that over systemic vasculitis any day!  I'm hoping the MRI makes things a little more clear. 

Funny story. ...A was ridiculously loopy in recovery. She thought the GI was Olaf (from Frozen) and he totally played along. As he was discussing the fissure she thought he said "fisherman"and became quite concerned that there was a fisherman inside her. He reassured her it was small and that he wasn't fishing at the moment. Then, she refused to answer any of the nurses questions because she thought they were spies. They weren't quite as amused as the GI, lol.  She was hilarious! 

Oh, and A has her first dance competition of the season this weekend. She is so excited! With all she's been through lately I'm so proud she's continued to work so hard. She's my hero!


----------



## DustyKat

So good to hear that A has come through okay…spies, fisherman and all! :lol: What a champion!  

I so hope you get the solid answers you need DanceMom. It goes without saying that you would wish you didn’t find yourself needing to find answers but the battle will swing in your favour when you know who your enemy is. :ghug:

Sending mega loads of luck and well wishes that A has a fab competition! It surely isn’t hard to see why she is your hero! Onwards and Upwards A! :goodluck: 

Dusty. xxx


----------



## Maya142

A is hilarious and such a trooper!What a brave girl you have!
 Glad things went well. We've been to CHOP and were very impressed so hopefully they will have some answers for you.


----------



## crohnsinct

Well thank goodness the anesthesia went better than last time!  Praying for some good solid answers for you guys and a clear plan.  Good luck at the competition!


----------



## kimmidwife

Glad things went well and it finally sounds like you are getting some answers!!!!


----------



## DanceMom

I've had some time to sit and think and I have a few questions for you all.  Please share your knowledge and experiences!!

1. Besides dehydration, are there any other reasons that A's veins would suddenly become difficult to access?  She's always been an easy stick until this week.

2. For those of you whose kiddos had abnormal pill cam images or scopes (visually) what was seen?  I was told A had small patches of white ulcers but apparently that doesn't necessarily indicate Crohn's.

3. I'm glad that her fissure isn't bothering her, but shouldn't the Mtx be healing it?  What are the dangers of an untreated (or undertreated) fissure?


----------



## DustyKat

1. I think in A’s case it was likely dehydration, that is usually the biggest culprit when no other obvious causes are apparent, as in, chemotherapy, certain drugs, multiple and long term need to access, shock, drug addict. Another thing that can play a part is the temperature, if you are cold it is harder to access veins. 

2. For Matt it was the typical apthous ulcer and inflammation seen during scope. Ultrasound showed thickening at the TI. CTE showed enhancement at the TI that was consistent with inflammation. 

3. How long has A been on Methotrexate? 
As you can imagine a fissure can take some time to heal due to their very location and the action of opening your bowels. Any degree of constipation and/or diarrhoea continues to put pressure on the area and so either opens the tear or prevents it from healing quickly. 
If the Methotrexate is working the above may be why it is taking some time. Are you using anything else topically to treat it? 
If the Methotrexate isn’t working then continued inflammation and tearing could expose the wound to further breakdown and it may have the potential to turn into a fistula but that would not be a usual outcome. An untreated/undertreated fissure generally means chronic pain and persistent symptoms. 

Dusty. xxx


----------



## Sascot

Sounds like you are getting somewhere at last. Veins are tricky things, Maybe she was cold. I know my son struggled with bloods when he felt cold to the touch. Now he keeps his jumper on until just before!
Visually my son had multiple small white ulcers in his stomach and bowel (can't remember exactly where). That was all that they saw.
Hope the MRI results are quick to come back


----------



## Tesscorm

I'm glad the scope went well and she really is quite the trooper!!    I hope you do get some firm answers soon!

Just re the fissure, S had some problems with this early on, he found using penaten and epsom sitz baths helped.


----------



## my little penguin

lots of long soaking tub baths for DS.
Hope you get results soon.


----------



## Mehita

Just yesterday, DS's veins kept disappearing when they were trying to put his Remicade IV in. It took us a minute to realize he was holding his breath which apparently makes your veins go poof.


----------



## DanceMom

Thank you for the replies!  Pretty sure being cold wasn't the reason they had trouble getting a vein.  She was under a warmed blanket both times.  Definitely wasn't holding her breath because she had laughing gas.  Must be dehydrated.  I've been pushing fluids all weekend but unfortunately the diarrhea seems to be getting worse.

Her bottom has been irritated since the scope but she says the Butt Paste helps.  I just don't think the mtx is helping at all.  Definitely some decisions to be made soon.

On a very positive note A did amazing at her competition today.  Her group dance even won 1st overall, beating out some very tough studios.  She was thrilled!  Her next competition is in two weeks so I'm hoping things have turned around a bit by then.  She deserves a break.


----------



## my little penguin

Please ask your gi about this possibility

http://emedicine.medscape.com/article/179571-overview


http://mobile.journals.lww.com/jpgn...ewer.aspx?year=2009&issue=02000&article=00001


http://mobile.journals.lww.com/jpgn...ewer.aspx?year=2010&issue=10000&article=00013


Many hugs to your little one


----------



## my little penguin

http://www.littleleakers.com/Intestinallymphangiectasia.html

From parents


----------



## DustyKat

Well done A and team! :dusty::dusty::dusty: 

Sending you love and healing thoughts that A is soon feeling better, bless her, she is such a fighter. :ghug:

Dusty. xxx


----------



## DanceMom

MLP the GI mentioned that briefly but felt that the protein losing enteropathy was not severe enough. Also the lack of edema. Then again she doesn't fit into any box very neatly. ....


----------



## DanceMom

Got the MRI/MRA results.....I'm confused.

First of all, it doesn't mention anything about the stomach, small bowel, or colon.  Other things are listed as normal - liver, spleen, pancreas, etc.  It does say that she had a small amount of non-specific free pelvic fluid.  Her previous MRE did not show this.  Maybe normal?

Then, it states "Intermittently noticed median arcuate ligament type of anatomy. May well be within normal limits. Please correlate clinically."  Okay.....

And this, "May-Thurner type anatomy with partial effacement of the central left common
iliac vein by the right common iliac artery without thrombus, probably within
normal limits."

So the MRI doesn't seem to have picked up on any small bowel inflammation yet ulcers were seen on the pill cam.  What the heck?!?  Just when I think we're getting somewhere.....


----------



## DustyKat

I am just about to head to work DanceMom but wanted to quickly comment on the free fluid…

Sarah had free pelvic fluid. I asked why it was there and it was put down to a likely burst ovarian follicle. It wasn’t, it was actually pus in her case. 

Matt also had free fluid, not pelvic, his was located higher in his abdomen. They could not explain it as it is rare in males. A follow up ultrasound a couple of days later showed it was resolving but he also received his probable Crohn’s diagnosis at this time too. 

Dusty. xxx


----------



## Gmama

Dance mom! God bless A for not only being able to dance, but to actually be able to compete! She is amazing! Big hugs & congrats!!


----------



## my little penguin

http://www.dirjournal.org/pdf/pdf_DIR_135.pdf

that may help


----------



## DanceMom

A continues to have burning/numbness in her legs but it isn't just the left leg. I'm still not sure what's causing the leg issues but I'm hoping it isn't anything major.


----------



## DanceMom

GI nurse just emailed to tell me the MRI/MRA results are still pending.  Somehow they are posted to our online account....?  Maybe I'll hear more about that later.

A finished her Flagyl last week and the bloody diarrhea is back full force.  Flagyl seems to help her (she doesn't have c diff) but can it be taken long term?  I fear that she's going to be dehydrated again if this doesn't slow down.  She went 6 times yesterday, each time was explosive and watery.  I'm pushing fluids but the more she takes in the more that comes right back out.  Any suggestions?


----------



## Sascot

I think Flagyl can be taken fairly long term so long as there are no side effects. My son was on it for about 5 months with no problems.
Sorry to hear the diarrhea is back, the fluid intake is really important, it's just a pity it comes back out. Hope you get the official report soon


----------



## DustyKat

Oh DanceMom :ghug: I hope the diarrhoea settles and you soon have answers. 

Matt was on Flagyl for 6 months with no issues. 

:hang: 

Dusty. xxx


----------



## DanceMom

Just got back from the walk-in clinic. A had a UA with TNTC WBC and RBC. They sent off for a culture but I'm sure she has a UTI.  Poor thing! She has a low grade fever and has to wear a pad because she's leaking blood. Starting Septra this afternoon.


----------



## DustyKat

Oh no DanceMom, your poor girl! :ghug: 

I hope the meds are sensitive to the infection and A is soon feeling better. Sending squishy hugs her way. :heart: 

Dusty. xxx


----------



## DanceMom

I called the on-call GI to make sure he agreed with the treatment plan. He said Septra should not be taken with mtx. He's sending us to the ER for further testing to decide the best medication for her.


----------



## DustyKat

Thank goodness you called! 

Good luck Mum, I hope they can find something suitable and you are soon home again. :ghug: 

Dusty. xxx


----------



## DanceMom

We were at the ER for about 5 hours.  They ran some labs which were definitely off (high WBC, high MCHC, high MPV, high bilirubin, high TCO2).  Her UA showed high RBC and WBC.  They were able to spin the urine and thought they detected bacteria.  They gave IV antibiotics and fluids and then observed her to make sure she didn't have an allergic reaction.  We have to go get labs done this morning to make sure her numbers are headed in the right direction.  She's still in a lot of pain and her urine is still brown.  I guess these things take time to clear up.


----------



## kimmidwife

Sending hugs! I hope she improves fast!


----------



## DustyKat

Good Luck DanceMom. :ghug: I hope A’s labs show that things are headed in the right direction. Bless her :heart: 

Dusty. xxx


----------



## DanceMom

As if things weren't bad enough she now has extreme stomach pain and has been vomiting since 3AM.  Giving it 30 more minutes and trying one more time to keep something down before contacting the GI.  This is just so unfair.


----------



## Jmrogers4

Sending loads of hugs, hope the vomiting has stopped


----------



## DanceMom

Projectile vomiting now.  Headed to ER in a few.


----------



## Jmrogers4

Sending loads of healing thoughts and things get under control quickly.  Good luck


----------



## Maya142

Hope she starts feeling better soon. Your poor girl!:ghug:


----------



## Sascot

So sorry to hear this. Thinking of you, hope she gets better soon


----------



## DanceMom

Still in the ER on her third bag of fluids. Vomiting has stopped for now but still awful diarrhea. Just had Tylenol for a fever. I guess they are thinking it is a virus. Go figure.


----------



## DanceMom

She's been admitted. This diarrhea is awful - every 15 minutes or so. Morphine is keeping her comfortable. Hopefully our GI will come by tomorrow because our follow-up was scheduled for tomorrow afternoon.


----------



## Maya142

Any chance she could have cdiff? My daughter had really bad diarrhea like that when she had cdiff.


----------



## DustyKat

Thinking of you both DanceMom and sending hugs and healing thoughts your way. :ghug:

Dusty. xxx


----------



## xmdmom

Hope this gets figured out really quickly and she is feeling better soon!


----------



## kimmidwife

Sending lots of hugs! Hopefully they figure it out quickly!


----------



## DanceMom

A is doing much better. Still having watery diarrhea every hour or so but they have been pushing her to constantly drink fluids. The plan is to discharge her in a few hours so she can keep her GI appointment downstairs.


----------



## xmdmom

Glad she is feeling better but not clear why she'd need to be discharged to get to the apt.
Did they figure out a cause?


----------



## DanceMom

This is our follow-up from all the testing in the last few weeks. We were hoping to get a definite diagnosis one way or the other. The on-call GI rounded but wouldn't give us much info. 

She's started feeling poorly again and refusing to drink. Going to try some Tylenol.


----------



## crohnsinct

Really?  They don't want to just keep her admitted?  Our Gi is downstairs at our hospital also and either he come sup or the kids are wheeled down.  Either way no discharge until they are absolutely sure the child can go home. Good luck!


----------



## xmdmom

Being in the hospital is no fun but getting discharged and then having to come back is worse.  Did they figure out why she had blood and wbc in her urine? Was it a UTI?   What do they think the diarrhea is from? as above, wondering about cdiff, which can come on quickly after antibiotics.

Sending Hugs!


----------



## DanceMom

She had a definite UTI and they believe that now she has a virus. Discharge is on hold for now. She's decided to eat some crackers but still won't drink. Hopefully her GI will come up later to talk about things and where we go from here.


----------



## xmdmom

In healthy children who have vomiting/diarrhea, viral gastroenteritis is most common. But given your daughter's history, I'd want them to consider other possibilities (med reaction, cdiff) if it's not clearing up quickly.   Any close contacts with a gi bug?  DId you ask if they could bring her down to the apt as an inpatient?


----------



## DanceMom

They are running stool cultures but they aren't back yet. I'm not sure I buy the virus theory because no one we know has a stomach bug. But they say because she's immune suppressed she's more susceptible to these things. I still think all of this is tied to some chronic illness which is still a mystery at this point. As the appointment time draws nearer I'll ask if he's coming up or if we can go down.


----------



## xmdmom

I believe the cdiff test is a rapid PCR test- and must be requested specifically-- not just stool culture but of course your GI will know.


----------



## DanceMom

I'm not sure what exactly they ordered. Just got a notification that the provider cancelled her appointment. Hopefully he'll still come by. I feel like we're starting to go in circles......


----------



## crohnsinct

If they are trying to rule out c. diff. you will most likely be quarantined until the results come back and definitely will not be welcome in a G.I. office.  

I tend to agree with your take on things but she did go to the ER and who knows what potential bug she picked up there. 

Big hugs from CT:ghug:


----------



## Maya142

We got cdiff results the same day - a couple hours later in fact. Doesn't hurt to ask for it if they haven't done it.
Good luck!


----------



## Gmama

I always feel like things should go faster when you are in the hospital, but it's so frustrating to sit & wait for something to happen! Hang in there! Praying for quick results for you and your sweet girl!


----------



## kimmidwife

Maya,
That is quick our hospital always took at least 24 hours to give us  Cdiff results. I hope she is feeling better. Any news?


----------



## DanceMom

Well she started sobbing uncontrollably from the abdominal pain and then vomited. Ugh. They gave her morphine and zofran so we're back to square one. They put her on bowel rest as well. GI is not coming to see her today. I'm taking deep breaths on that one.....


----------



## kimmidwife

So sorry to hear. Sending prayers and hugs your way!


----------



## DanceMom

On-call GI came by. They still think this is just a virus that hit her hard due to being immune suppressed and battling a UTI.  He met with her GI yesterday and they are in agreement that they are 95% sure she has Crohn's but because of the possibility this could be PAN they want to go ahead with a CTA.  Apparently the MRA she had only detects large vessel vasculitis, not small or medium. I've agreed to one last test.  If this proves to be Crohn's then we are likely on to Remicade. They feel her mtx dose is sufficient and we should have seen improvements by now.

A has agreed to drink fluids in small amounts so as not to get dehydrated again. The diarrhea has let up slightly but once they turn these fluids off she will have to take small sips every few minutes to keep up. So plan is to go home soon and schedule CTA for next week. Oh, and she is determined that she's competing on Saturday. I'll post a link and times for those that would like to watch online. This girl is amazing (In my biased opinion! Lol).


----------



## Sascot

Poor thing! How frustrating the GI didn't come by. Hope she manages to dance at the weekend!


----------



## DanceMom

We are home now!  A is tired but was feeling much better and wanted to try a few bites of applesauce. About 20 minutes later she was doubled over in pain again. So back to clears I suppose. She refuses Gatorade, mostly wants Sprite. She took a few sips of the Dole juice I had but then said she'd had enough of that. Doesn't want chicken broth or jello.  Any ideas?


----------



## my little penguin

Pedialyte singles or pedialyte Popsicle
Slushies - use a blender ice chip siand poor gatorade over it 
Koolaid pops 
Italian ice
Ensure clear ??


----------



## DanceMom

She hates the taste of Pedialyte. We have 2 different flavors of Italian ice so maybe she'll try that later. She's typically not a picky eater but is being very selective right now. This is a child that has me bring her snacks on the toilet when she has bad diarrhea. She will vomit and then immediately ask what can she have to eat. But this time is different for some reason and I'm not sure why. How long is it okay to be on clears? My only instructions were to go from clears to a bland diet and let her decide when she's ready for that.


----------



## my little penguin

Just an fyi there is "clear" pedialyte which can be mixed in things 
it helps

http://www.healthychildren.org/Engl...ng-Dehydration-with-Electrolyte-Solution.aspx


Try to boil a chicken at salt and a fresh veggies ( onions carrots celery - whole pieces) then she can have bland chicken stock in a cup and you have chicken for later when she is up to it.

Also you can make homemade pedialyte

the point is if she is vomiting and having diarrhea things can get off balance quickly.

http://www.100daysofrealfood.com/2013/01/31/homemade-pedialyte/
http://babyparenting.about.com/od/recipesandcooking/r/electrolytedrnk.htm
http://dailymom.com/nurture/3-natural-substitutes-for-pedialyte/

you get the idea


----------



## DanceMom

Thank you! I will definitely make the homemade Pedialyte tomorrow. She associates chicken broth with clean outs so I know she won't go for that. But maybe choosing a flavor of KoolAid will encourage her to drink. This diarrhea is atrocious so she has to drink a lot to keep from getting dehydrated again. Frustrating!


----------



## Tesscorm

Try veggie or beef broth...  a bit different from chicken.  Also, and this sounds a bit silly but, when S was on exclusive EN, he could only have clear liquids - broth being one of them.  To vary it up, he would sometimes ask to have his broth in a mug rather than a bowl. :yfaint:    Sounds like nothing at all but, I guess when your options are so limited for variety, the 'mug' was a change.  If she never drinks broth in a mug, it might be a novelty for her???


----------



## kimmidwife

Very glad to hear she is home. Ice pops of all different kind were what Caitlyn liked. We went out and bought a bunch of different ones to give her variety.


----------



## DanceMom

Well, we made it through the weekend and A danced beautifully.  Her fatigue was noticable but expected.  

She has not had a BM since leaving the hospital on Thursday.  She's still eating a pretty bland diet and not as much as she typically would....but no BMs.  She's beginning to feel bloated and I'm afraid her appetite isn't returning to normal because of this.  She's drinking plenty.  I don't want to give Miralax because she's prone to diarrhea.  Any suggestions?

Oh, and her stool test came back showing "moderate WBCs".  What is this an indication of?  We were told her episode was viral in nature so would that cause WBCs in the stool?  Her cultures were all negative.


----------



## kimmidwife

Here is a link to what WBCs in your stool might mean:

http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=stool_wbc

Basically it says they may be seen in infection or in IBD.


----------



## DanceMom

Also, "Reducing Substances - Stool" came back as Grade 1.  Anyone else ever had this test done?  From what I gather it indicates malabsorption issues.  

Just a little irritated that no doctor cares to call and explain these things to me....


----------



## xmdmom

I think 1+ reducing substances can occur due to viral gastroenteritis.  It means some sugar was not absorbed.  The scale is usually 0 trace 1,2,3,4+ so 1 is on the low side.  It could also be seen in lactose intolerance or other malabsorption of sugars (these occur transiently in gastroenteritis).

In terms of stool leucocytes, viral gastro doesn't usually have wbc in the stool. Moderate WBC suggests a bacterial gastroenteritis or inflammation in the intestine, especial colon (I think,but am not sure).  Did your daughter have inflammation in her colon on endoscopy?

"Stool Analysis and Cultures
The presence of a large number of leukocytes in the stool indicates an inflammatory process characteristic of certain invasive organisms such as Shigella, Campylobacter, and certain strains of E. coli (EIEC, EHEC). The absence of fecal leukocytes is typical of colitides caused by enterotoxins secreted by viruses (V. cholerae, rotavirus, Giardia lamblia), parasites (Entamoeba histolytica), certain strains of E. coli (ETEC, APEC, EAEC), and food poisoning bacteria (Staph aureus, Clostridium perfringens, Bacillus cereus). Several organisms produce variable findings on microscopic stool examination including Salmonella, Yersinia, and Clostridium difficile. Although fecal microscopic examination is neither infallible nor even helpful in all cases, it is inexpensive and yields immediate information that can often guide therapy. http://www.fascrs.org/physicians/education/core_subjects/2000/colitides/"


and this


"the presence of fecal leukocytes (or more recently abnormal fecal concentrations of calprotectin or lactoferrin) is an excellent way to confirm intestinal inflammation or inflammation in general"  http://gi.org/guideline/management-of-crohn’s-disease-in-adults/


----------



## DanceMom

Had our follow-up today.  A diagnosis is still unclear....of course.  Scope biopsy findings were non-specific which was not very helpful.  The team wants her to have an angiogram but I've declined for now.  She's been through enough.

The plan for now is to have leg biopsy slides reviewed at CHOP (to see if we're really dealing with vasculitis or not), start Elavil to try to control symptoms, and have full labs done.  If IgG is still low and the viruses/infections continue we may consider IVIG therapy.  We're also watching the growth closely to make sure nutritional therapy isn't necessary.

This whole process is so frustrating.  Mostly I'm frustrated that my girl still isn't well and no one can tell me exactly why.


----------



## my little penguin

Its hard when everyone is still confused.
Are you continuing on Mtx or adding remicade ?
Or just elavil by itself ???

I wish things were easier


----------



## DanceMom

Continuing with the mtx for at least 2 more months.  I'm doubtful, but agreed to give it a little longer.  From their perspective her disease is mild (very small fissure, small white ulcers in stomach and small bowel only, no anemia) and escalation of therapy isn't warranted at this time.  From my perspective the ulcers appeared after starting mtx so I'm not sure what use it is.  I'm tempted to drop it entirely but I won't.  The GI feels that it is halting disease progression and therefore we should continue.  Time will tell I suppose.


----------



## DanceMom

A had 3 good days with no symptoms (other than fatigue)!  The diarrhea started again yesterday but I'm still hopeful.  Perhaps more good days are in our future!

Besides the fatigue, A is also experiencing hair loss.  Her hair has always been thin and fine (so is mine) but she is noticeably losing it rapidly.  We first noticed this when she was hospitalized 2 weeks ago.  Her hair was covering everything - her clothes, the bed, the floor, etc.  When I brush it it comes out by the handful.  I have a few theories as to what could be causing it.  I know that anesthesia can cause hair loss and she did have scopes on the 6th.  Would it still be causing her to lose so much weeks later?  And I know mtx can cause hair loss so it could be from that.  Or....I'm wondering if this could be a vitamin deficiency issue.  She will have labs next week so her levels will be checked then.  Anyone else's kiddos lose so much hair?


----------



## DanceMom

double post :yrolleyes:


----------



## Farmwife

No, but we were warned it could happen with mtx.

Ok, I'm also wondering about the vitamin thing.
When was the last check up on her vitamins?


----------



## DanceMom

She's only been checked for Vitamin D-25, last May.  At that time her level was 21 (30-100).  We were told to start a children's multi-vitamin and we did.

I don't think her GI is big on checking vitamin levels.  I think he only ordered them this time because I mentioned that her fatigue is getting worse and she is struggling to get through the school day without falling asleep.  I'm having to pull her out of her dance classes early because I can tell she's tiring and I don't want her to get injured.

We're doing full labs next week.  He wants to be sure she is completely over her stomach virus before testing.


----------



## Maya142

We were also told that mtx could cause hair loss. M did lose quite a bit of hair but she has pretty thick hair so she didn't mind. 
Glad A had a good weekend!


----------



## DanceMom

I should also add that her remaining hair seems very dry and brittle, not healthy like it used to.  I don't use heat on her hair and rarely even use hairspray.  She uses conditioner daily and leave-in conditioner several times a week.  I'm going to try to get her in for a cut this week because it looks so shabby.


----------



## Farmwife

I haven't notice the hair problems with Grace yet.

I also have Grace's Vit. B12, Zinc and Mag .checked along with vit D every three months.


----------



## araceli

My kids were low on vitamin D 21 and 17. They were put on a 5000ui daily and checked again after six months. They improved. 38 and 32. Still taking it. Both of my kids loose a lot of hair, I blame it on remicade for one and gapapentin for the other.


----------



## DanceMom

EKG scheduled for Friday!  Hopefully we get the all clear to start Elavil on Saturday.  We're now back to stomach cramps, diarrhea, EN (or vasculitis, or whatever....), and the awful fatigue.  I'm counting on Elavil to make a difference!  Anyone had success with this medication?


----------



## Maya142

My older daughter used Elavil. It helped her in terms of pain and sleep (not a lot, but some) but it caused constipation. That might be a good thing for A though!


----------



## my little penguin

DS tried elavil
Sadly it did not do a whole lot but he wasn't on remicade at that point just 
6-mp or maybe Mtx ... It's been a while


----------



## my little penguin

Oh and elavil is just used for pain or abdominal migraines not crohn's


----------



## DanceMom

GI thinks her symptoms may be functional.  He thinks the Elavil will calm the diarrhea and stomach cramps.  Personally, I think even tiny ulcers can cause big symptoms but I'm not the one with the medical degree.  Regardless, we're going to give this a try and hope for the best.  We've already tried Neurontin, Levsin, and Bentyl with no luck but maybe this is her "magic pill".


----------



## my little penguin

Good luck 
We also tried all of the above without much success - 
We were also given the its functional speech .
But  once that thought was pushed aside - many drugs later we found
Mainly whatever "thing" DS has responded best to biologics but not so much to immunosuppressants .

No one can tell us why ... Totally confused the Gi but
We have enough proof to at least check the crohn's box for now.

I really hope its the magic pill
I know for some non crohn's kids it really does work


----------



## xmdmom

Dance mom-- yes, I don't know if the size of ulcer correlates well with the symptoms and I believe that symptoms can occur due to submucosal inflammation, with ok looking mucosa-- does anyone know if this is right?  In addition, scopes and pill cam miss some ulcers I'm sure.


----------



## kimmidwife

Dance mom,
Did you let the doctor know about the hair loss? I definitly would let them know to be on the safe side. Caitlyn took amitriptalline for a long time which is similar to Ellavil. It helped with pain until it stopped working.


----------



## araceli

My son is taking elavil (amytriptyline) 25mg. Neurologist prescribed for pain. It is used for anxiety and to sleep. GI told me that he uses elavil in patients with crohn's for pain but at larges doses. My son is having some weird side effects but I am pretty sure they are related to gabapentin.


----------



## DanceMom

I got A's pathology report from her recent scopes.  Maybe you all can help to shed some light on what some of this means.

Possible Antral Ulcer Biopsy: focal mucosal disruption with crush artifact
Terminal Ileum Biopsy: focal mild active ileitis; granulomas or chronic changes not identified

Diagnosis Comment: Rare neutrophils are noted within crypts in the colon but are not diagnostic for any clinical entity.

Everything else was "normal".  The ulcers seen on the pill cam could not be reached by scope.  

I did email the GI nurse about the hair loss.  She said she'd forward it to the GI.


----------



## Catherine

Mild Inflammation of the terminal ileum.


----------



## xmdmom

With ileitis, how can gi say it's functional?


----------



## DanceMom

A is complicated.  Her symptoms are more severe than her tests show and her tests don't even match each other.  For example, her MRI/MRA was essentially normal yet her pill cam (5 days prior) showed ulcers in her stomach and small intestine.  Her CRP and ESR are within normal limits but fecal calp is elevated.  I think everyone is left scratching their heads.  Basically, on paper she doesn't look as sick as she really seems.

Personally, I think A is very sensitive.  She has danced for 7 of her 9 years.  She is very in tune with her body and when something isn't "right" she is immediately aware of it.  If that is considered "functional", then so be it.  I don't think her sensitivity causes her symptoms, just makes her more aware of them.  I don't know if that's something Elavil can fix but we are willing to try.  I'm also hoping that her next set of labs will provide some more answers.  Looking at her she seems very undernourished to me and it breaks my heart.

Is there anyone else in this same boat that wants to help me paddle?  Anyone else's kid have relentless symptoms but only "mild inflammation"?  Anyone else have a child that doesn't respond as expected to medications?  I'm paddling in circles and getting dizzy!!


----------



## Farmwife

DanceMom said:


> Is there anyone else in this same boat that wants to help me paddle?  Anyone else's kid have relentless symptoms but only "mild inflammation"?  Anyone else have a child that doesn't respond as expected to medications?  I'm paddling in circles and getting dizzy!!



:bigwave: I've been dizzy for months, on the verge ofuke_r:


Grace first biopsies' also said.................
  focal mild active ileitis; granulomas not identified

But hers was chronic. 

By the second hers was now active focal ileitis. It was no more mild. :yfaint:
But yet it was still microscopic. I've always felt her damage/disease is in the small intestine. 

However she's never had a pill camera done.
The second opinion (Mayo) said she would absolutely demand a PC for Grace.

I won't bore you with her EGID's, JIA, Asthma.

Oh now we're thinking of asking for them to take a bone marrow sample.:yfaint:


----------



## DanceMom

I'm just so frustrated and don't see an end in sight.  Her hair is coming out in handfuls and she's starting to get upset by it.  She's so tired all the time which makes her emotional.  She has no energy and can barely make it through one of her dances, let alone tumble (which has always been her favorite part of dance).  She's covered in awful looking black and blue knots.  She's in pain.  Everyone is asking me if she's sick and commenting that she looks like she's lost weight.  And now there's blood in her stools again!

Maybe today is just an exceptionally bad day.  Maybe tomorrow I'll wake up with a more positive outlook.  This whole thing just exhausts me....


----------



## Maya142

If they don't want to change her meds yet, could they at least up the methotrexate? I know if she's losing hair she won't want to.

You asked earlier if any of our kids had mild inflammation and relentless symptoms -- M had microscopic inflammation in her TI and colon and no ulcers or anything like that. She was pretty miserable until we got her on the right dose of mtx + Remicade (now Humira + sulfasalzine). We wouldn't have even gone on a biologic if she only had Crohn's - her GI was happy to keep her just on mtx (but she was on a different biologic for arthritis and then we switched to Remicade because it treated both, because it made sense since she had to be a biologic for her joints anyway). 
Very glad we did because all her tests are clear now (scopes and pillcam) and she's beginning to feel really good.
Hope A starts feeling better soon. 
I've heard Biotin (OTC) can make hair grow. Could you ask her GI if she could take that?


----------



## DanceMom

Thanks for your reply Maya!  It is so nice to be able to come here and talk with people that can actually relate!

I asked about upping the mtx dose but the GI feels that her dose is enough for her size.  She weighs 49 lbs and is on 12.5 mg injections.  He's mentioned Remicade in the past but apparently the "team" doesn't feel like that's necessary.  The only option we were given at this point is Elavil in addition to the mtx.  If that doesn't help maybe we'll be given some alternatives.

I will look into the biotin.  Thank you!


----------



## xmdmom

Have they said it's Crohn's again? I'm confused because ileitis and ulcers seems characteristic of Crohn's yet you wrote they said the scope biopsies were non-specific.


----------



## DanceMom

Nope, we still don't have a diagnosis.  Because her biopsies didn't show granulomas or chronic changes they won't officially consider her to have Crohn's.  The inflammation is considered non-specific and I wasn't given a reason for the ulcers.  Honestly, I was so in shock that the biopsies weren't more helpful that I couldn't even ask intelligent questions.


----------



## Maya142

I'm also confused, I can't believe they don't think her symptoms warrant Remicade. I've heard many parents on the forum say that growth failure is a sign of moderate disease. You often mention that she has blood in her stool and she has so many other symptoms, your poor little girl deserves a break, she has been such a trooper!
Wouldn't it make sense to get the disease under control before she has more issues. I've heard more and more that the "top-down" approach is very successful.
M was 75 pounds at 10 (if I'm remembering correctly), 49 pounds does seem very small. Could they at least add Entocort or something until Methotrexate works?


----------



## Maya142

Could you take her to one of the top children's hospitals (CHOP, Boston Children's?). I know you've already gotten a second opinion but A does seem especially complicated. We loved CHOP!


----------



## DanceMom

Our GI trained at CHOP and we've discussed getting a third opinion there.  It was his idea actually.  He's supposed to be communicating with our insurance company and getting the process started.  We won't be travelling there, just a records review.

A is tiny.  She did finally grow an inch recently so she's now 49 inches and 49 lbs.  My husband and I are not small people! lol  He's 6'3 and I'm 5'9.


----------



## my little penguin

So many many hugs
We also got the he needs remicade changed to a team answer blah blah try Mtx...
Thankfully our Rheumo steped in.
DS only had microscopic changes but they were chronic and he aslo had multiple granulomas which is the only thing that send him to the crohn's box every time when any second opinOn sees the granulomas .
But what I don't get is only 30% ever have granulomas for crohn's .

I am wishing you a speedy dx.
Did they ever rule out vasculitis ?


----------



## DanceMom

Large vessel vasculitis has been ruled out by the MRA (it isn't sensitive for small or medium vessel vasculitis).  I've declined the CTA for now.  I'll reconsider at our next follow-up if we're still in the same situation.  I just couldn't commit to another procedure right now.  In the last month she's had an MRI/MRA, pill cam, scopes, 2 ER visits, and been inpatient for 3 days.  Not to mention the EKG she's having tomorrow.  In my heart I just don't think it is PAN.  I hope I'm not wrong.


----------



## Maya142

I think rheumatologists now tend to use biologics as a second-line treatment for Juvenile idiopathic arthritis (after NSAIDs) so they don't see going to them as such a big step. There was never any talk of "saving" them for when my girls were worse. It's interesting to see the differences - I was an arthritis Mom for so long!

Anyway, on a totally different note - would A consider a pixie cut for her hair? My friend's daughter has cancer and now her hair is growing back and she has the cutest pixie cut.
Really really hope they can diagnose A soon!


----------



## PsychoJane

I can understand why you are recluctant for the angiogram considering all the journey she is going through.Though, it was the only exam that was conclusive (and maybe the brain MRI) to show the vasculitis in my case. No other exam would show clear results at the exception of the angiogram which allowed to see I had vascular impairement at brain, mesentery and kidney levels.  They did biopsies of skin, kidney and digestive tissues which all weren't conclusive.

I'm not a fan of radiation and the procedure does involve a few risks but if the answers are not surfacing it might be interesting to get it done. I don't remember the procedure as being hard to go through, maybe just annoying. I my case... the room was cold and the table was not comfortable...


----------



## DanceMom

EKG went well and she is starting the Elavil tonight. Also went and got a few inches cut off her hair and it looks much better. Trying to take things one day at a time. Today we are smiling. It truly has been a good day.


----------



## DustyKat

{HUGS} to you and your lass DanceMom. :ghug: 

With confirmed inflammation in the terminal ileum ensure you have levels done for:

Iron Stores
Folate
B12
Vit D
Magnesium 
Zinc

Hair loss may well be a combination of things. Matt did suffer with hair loss and it did change colour too but I don’t know if that is attributable to the thinning of his hair and the resulting illusion of change. The obvious thing to blame was Imuran but I personally think that was only one piece of the puzzle. I personally felt his overall health, poor at the time, and his resultant malnutrition and subsequent deficiencies was just as much to blame if not more so. Once he gained remission his hair grew back with a vengeance! 

Granulomas - Unfortunately these are the clincher for a diagnosis, you won’t get a yes from pathology without them, UNLESS you have a GI that is confident in what they are seeing. The irony is only about 50% of those with Crohn’s will having corresponding granuloma’s. Matt did not have them. This is an old thread I started about ‘labelling’ patients:

http://www.crohnsforum.com/showthread.php?t=18683

Good luck mum and hoping so very, very much that you have solid answers. :heart: 

Dusty. xxx


----------



## DanceMom

Some of A's lab results are in and so far everything looks good.  I'm really bummed that her vitamin levels were within normal limits.  I was hoping for an easy fix to the hair loss and fatigue issue.  Still waiting for the immune labs.....


----------



## Mehita

Have you been keeping track of her labs in a spreadsheet or anything? The labs might be normal, but maybe trending in the wrong direction over time.


----------



## DanceMom

Vitamin D went from 21 (last year) to 35.  That's the only one that she's had done before.  Folic acid (>24), B12 (middle range of normal), and iron (upper end of normal) were all fine.

So now I'm assuming the hair loss is caused by the mtx which just really sucks.  But I'm not even sure what to blame the fatigue on.  I just really like it when things are black and white!


----------



## Maya142

Hair loss is pretty common with mtx. Is she taking folic acid? We were told that would counteract the side effects of mtx (not that it did much for the nausea/dizziness). When M had a lot of mouth sores from the mtx her folic acid dose was increased. It might be worth asking about that?
The fatigue could just be from the disease. The doctors never took much notice when we complained of fatigue but now that M is on the right combination of meds, the fatigue is gone, so it was obviously related.


----------



## my little penguin

Also did they do iron studies vs just an iron level?
DS has next to no iron stores ( ferritin) but his iron value is normal .
There is another mineral - I need to go ask that can cause hair loss in kids .


----------



## my little penguin

> rare to be deficient in biotin. Symptoms include hair loss, dry scaly skin, cracking in the corners of the mouth (called cheilitis), swollen and painful tongue that is magenta in color (glossitis), dry eyes, loss of appetite, fatigue, insomnia, and depression. People who have been on parenteral nutrition -- nutrition given through an IV -- for a long period of time, those taking antiseizure medication or antibiotics long-term, and people with conditions like Crohn’s disease that make it hard to absorb nutrients are more likely to be deficient in biotin.
> 
> Source: Vitamin H (Biotin) | University of Maryland Medical Center http://umm.edu/health/medical/altmed/supplement/vitamin-h-biotin#ixzz2vsml8pxm
> University of Maryland Medical Center
> Follow us: @UMMC on Twitter | MedCenter on Facebook


Did they check biotin levels ?


----------



## DanceMom

Maya - She does take folic acid daily.  Normal is >7 and she was >24.

MLP - They only checked iron levels.  Her next appointment is in about 6 weeks.  If we are still dealing with these issues I'll ask about checking for other vitamin deficiencies.  The hair loss seems to be slowing down for now so perhaps it was related to the anesthesia.

A has had a few great days and I'm hoping that is thanks to the Elavil.  I'm hoping our world doesn't come crashing down soon!  Still waiting on the rest of her lab results....hopefully all will be well and we can move on with our lives!


----------



## DanceMom

Right after I typed my last post her Immunoglobulins lab results came back.  IgG is still low, lowest ever actually.  Tetanus antibodies were still good.  Waiting on Pneumovax antibody results.  

I wish I better understood how the immune system works.  Her IgG is consistently low but she does not have chronic infections or frequent colds/viruses.  When she does get sick it hits her hard, but she isn't sick more than other kids her age.  I'm just wondering how much the low IgG is playing into her symptoms.  Could it be causing her fatigue?  Could it cause ulcers in her gut and inflammatory skin lesions?  Could it cause bloody diarrhea or fissures?


----------



## my little penguin

Does she see an immunologist /allergist ?
To address the possible imunodefeciency


----------



## DanceMom

Her Rheumo is also an Immunologist.  Her IgG has been low all 3 times it was tested.  Initially she did not show sufficient antibodies for tetanus or pneumovax.  She had boosters and was tested 6 weeks later.  At that time (in December) her tetanus level was 6.79 (considered protective at >.15).  Three months later her level is now 4.35.  Only a matter of time before the antibodies are insufficient again, I'm assuming.  The Rheumo said we'd test at the 6 month mark but the GI wanted to test sooner given the UTI and stomach virus that hit her so hard.  

Still waiting on the pneumovax....


----------



## DustyKat

:ghug: 

So depending on the antibody results, and say they are insufficient, are they looking at Ig therapy in view of the fact that A is atypical in some respects, that being not having more infections than normal? 

As to A’s symptoms, I don’t know the answer to that. I can pick out symptoms that may relate to one IgG subclass deficiency and one from another but nothing that fits neatly.  And I suppose you can’t rule out that having a possible immunodeficiency may not predispose you another autoimmune disorder. 

Ugh, how frustrating for you DanceMom. :hug: My thoughts are with you. 

Dusty. xxx


----------



## DanceMom

I just have to brag for a moment! A competed her solo last night in the 9-12 year old division. Typically she competes 8 and under (most competitions use your age as of January 1st but this one used actual age).  She looked so tiny up there but danced beautifully. She won 3rd overall, the highest she's placed all season! She felt great and looked healthy. Her color looked better and her face even looked more full. Two days without diarrhea can make a big difference! Hoping this continues!


----------



## CarolinAlaska

Congrats to A!  So glad for her, and for you.  Sorry this has been such a confusing journey.  I wish they could find out what it is that is wrong and find an effective treatment!


----------



## DanceMom

Dusty - At our last GI appointment he said he wanted to re-test IgG levels and if they were still low (which they are) and she continued to not be well (diarrhea, headaches, infections, etc.) that IVIG therapy would be an option.  However, if her pneumovax levels come back as protective I'm assuming that could change.  I've learned that nothing is set in stone!

A has had a sore throat and chest pains since yesterday.  I'm hoping it's nothing....


----------



## DanceMom

Just wanted to give an update...

The Elavil seems to be helping with the diarrhea!  Prior to starting A was having diarrhea 3-4 times daily.  Now she has 1-2 BMs a day, most appear normal.  She's been on it for less than 2 weeks so that's a good start.  Even the fatigue seems better.

Wish I could say that she felt great but that's not the case.  However, I'm hoping it is just a virus throwing things off a bit.  She's had a sore throat since Saturday so if it continues I'll take her to the Pedi.  Waiting for a response from the GI to see if there are any medications she should not have while on mtx.

And her Pneumococcal lab came back though I'm not sure what to make of it.  Some things I've read say anything over 1.3 is protective.  In that case she is not protected in 6 of 23 serotypes.  Other things I've read give specific norm values for each serotype.  In that case she's not protected in 11 of 23 serotypes.  Anyone had this test done before that can explain the expected results?


----------



## DanceMom

I have another question....

While putting away laundry this afternoon A came out of her room crying, saying her knee suddenly started hurting.  She was limping, barely putting weight on that knee, and continues to do so.  She says she didn't injure it in any way and so I'm confused regarding how suddenly the pain came about.  Typically when she complains about her joints it is more of an achy, mild pain and seems to come after exercise or activity.  Do your kids ever have joint pains that come on abruptly and are more than just an ache?


----------



## Farmwife

DanceMom said:


> I have another question....
> 
> While putting away laundry this afternoon A came out of her room crying, saying her knee suddenly started hurting.  She was limping, barely putting weight on that knee, and continues to do so.  She says she didn't injure it in any way and so I'm confused regarding how suddenly the pain came about.  Typically when she complains about her joints it is more of an achy, mild pain and seems to come after exercise or activity.  Do your kids ever have joint pains that come on abruptly and are more than just an ache?


YES, as we speak Grace is on the couch with a swollen knee and one finger. No reason to it.
Maya142 hopefully will be along with her daughter's experiences with JRA.
Has the rheumatologist brought JRA up as a possibility?


----------



## Maya142

Yes, this is exactly what happened when M was first diagnosed. She had been complaining about her knee on and off but I assumed she just hurt it while playing. One day she couldn't walk on it, the next day it was red and swollen and it remained that way for months (until she was put on nsaids and then finally given a cortisone shot). Her older sister had just been diagnosed with juvenile arthritis so we knew it was a possibility with M.


----------



## Maya142

Keep an eye out for redness, stiffness and swelling! Looking back, M had been stiff in the mornings for quite a while but thought that was "normal".
I really hope A starts feeling better soon, and her knee is ok, she really deserves a break!


----------



## DanceMom

We've discussed it, but A has never had swelling, redness, or limited range of motion.  We were told she had arthralgia and that made sense.  This seems different though.  Her pain is more intense and came on so suddenly.  She's in her church class now (she insisted on hobbling in) but when we get home I'll check for any outward signs like redness and swelling.


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## Maya142

Ice or heat might ease the pain. Also, if she's allowed nsaids, those really helped when M was just diagnosed.


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## DanceMom

She has Tramadol so I can give that if need be.  I really hope this is just one of those weird things that happens and goes away as quickly as it came.  

Thank you ladies for your quick replies!  Now can you help me with the Pneumococcal lab results I posted about earlier? lol


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## Farmwife

DanceMom said:


> She has Tramadol so I can give that if need be.  I really hope this is just one of those weird things that happens and goes away as quickly as it came.
> 
> Thank you ladies for your quick replies!  Now can you help me with the Pneumococcal lab results I posted about earlier? lol


Nope on the lad results. Sorry


----------



## Maya142

Sorry, no experience with that! M actually needs to get that vaccine. 
My daughters use Tramadol a lot (though less frequently now that they're both feeling better). It causes constipation - just a warning!


----------



## my little penguin

DS does not have jra but but does have pain out of the blue.
He just started with morning stiffness the past few months so we are watching it closely and adding other measures per the Rheumo


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## DanceMom

We came home and iced it but it didn't seem to help. It might be a tad swollen but nothing major. I'm not sure if her range of motion is truly limited or if she just won't bend it due to the pain.  She competes again on Saturday so she is quite distraught over this whole situation.


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## Maya142

I know I already said this, but if there is inflammation, an NSAID could really help! It might be worth checking with her GI if she could try one.
My daughter played soccer with a knee brace for a month before she was diagnosed. In hindsight, it probably wasn't our best idea but I really did think it was just a minor injury! She said it really helped and when she got back to soccer after being diagnosed (and treated) she still wore the brace for a while until her knee felt 100% better.
Anyway, if it's just the one competition, a brace might help.


----------



## my little penguin

DS also has been prescribed braces (splints) these help with the stiffness


----------



## Farmwife

Grace has two ankle braces, one hand braces and countless Ace bandages.
Also sometimes Grace wants her knees wrapped up during sleep. That way there supported under the blankets and it stops them from shifting and causing pain.


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## Maya142

We did get one that was prescribed but it was too big and bulky - M hated it! The one we got was over the counter at CVS or Rite Aid. I'm not sure they have kids sizes though? We also got one that she liked from a medical supply store - perhaps they might have kids sizes?


----------



## DanceMom

We have a wrist and ankle brace (from CVS) that she sometimes uses when tumbling. Just gives her more support when she is achy. I may have to look into a knee brace. She won't be allowed to compete in it but it might be good for practice and school. Still hoping things will be better in the morning.


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## Maya142

What about an Ace bandage? If she's wearing tights, that wouldn't show too much?
Sorry, not really familiar with the dance world!


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## Catherine

Did the knee collapse?  It feels like knee won't hold you up.  It is extremely painfully.  It can happen without warning.


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## DanceMom

Knee is still just as painful this morning so I gave her some Tramadol and she went on to school.  It didn't appear swollen but does look slightly discolored.  It is always something....


----------



## Sascot

Poor girl! Hope it resolves on its own soon. Can she use an anti-inflammatory gel? Our docs don't mind us using one as not a lot gets absorbed into the rest of the body. Hope she manages to dance at the weekend


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## ellie

I'd second the anti- inflammatory gel suggestion.. And also some topical steroid cream on the painful joint for a few days if there's no contraindications from your medicos. They'll probably say "that won't help", but in the interests of avoiding the systemic side effects it could be worth a try.  
(I've been managing my troublesome IBD joints for a few years now with topical creams/gels, and simple analgesia.. Paracetamol, not NSAIDS or narcotic family usually)


 HD


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## Jmrogers4

Poor Girl, I agree with the braces.  Jack rarely has ankle pain anymore except when he is playing baseball and he has to wear ankle braces or the pain gets pretty bad.


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## DanceMom

I'll run by CVS today and look for a knee brace and anti-inflammatory gel.  Do you mean something like Icy Hot or Tiger Balm?


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## Farmwife

DanceMom said:


> I'll run by CVS today and look for a knee brace and anti-inflammatory gel.  Do you mean something like Icy Hot or Tiger Balm?


Tesscorm son uses tiger balm I believe. Grace uses icy hot. CarolineAlaska daughter uses natural products for rubs. I think that's how you spell her name. She'll be paged to this thread I think. Or you could start a thread about joint pain relief and remedies.:smile:


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## DanceMom

Ooh!  I love the sound of something natural!  I feel like I'm already shoving enough medicine into her tiny little body....


----------



## CarolinAlaska

DanceMom said:


> I have another question....
> 
> While putting away laundry this afternoon A came out of her room crying, saying her knee suddenly started hurting.  She was limping, barely putting weight on that knee, and continues to do so.  She says she didn't injure it in any way and so I'm confused regarding how suddenly the pain came about.  Typically when she complains about her joints it is more of an achy, mild pain and seems to come after exercise or activity.  Do your kids ever have joint pains that come on abruptly and are more than just an ache?


Yes, that is how Jae's joint aches usually are; although more frequent when she exercises.

We use essential oils which have been enough so far.

By the way, think of my name as Carol in Alaska... that is how I came up with it...


----------



## DanceMom

Where do you get your oils from?  I've always thought they were nonsense but I think I'm becoming more of a hippy as I age, lol.  My newest venture is oil-pulling and I'm already seeing benefits from that.  I think we grow up believing that medicine is the only thing that will make us feel better but I'm slowly learning that isn't always the case.


----------



## Jmrogers4

We use DoTerra, but there are lots of brands.  We use the peppermint and their deep blue rub which is mixed for joint pain.  It seems to help Jack for what it is worth


----------



## Tesscorm

Yes, before S was diagnosed he had lots of back pain - he used Tiger Balm before and after hockey games/practices and whenever his back was hurting.  He swore it helped quite a bit...  must have helped because he went through the trouble of making sure he had an extra container of Tiger Balm and always kept it in his hockey bag (quite the feat for a 16 year old boy who often got to the arena to play but had no skates or shirt or stick or etc. in the bag! :lol  Not sure if it would be considered 'natural'???

His GI also gave him the okay to use Voltaren anti-inflammatory gel on a shoulder injury - but told to use 'sparingly' as it is still absorbed.


----------



## CarolinAlaska

We use DoTerra also.  I have signed up as a "consultant" but only so that I can make my own personal orders each month.  I have used other brands of other oils also for this or that.  We still are just doing a lot of research, trial and error personally.  I think she has found Lemongrass to be the most helpful for her finger and knee pain, but I can't remember what all else we've tried.


----------



## DanceMom

Terrible morning.  A spent 15 minutes crying on the bathroom floor because of her knee and now shoulder pain.  On top of that she still has a sore throat (since Saturday).  The only thing that got her off the floor was the need to run to the toilet to pass some incredibly bloody stool - both black and red.  Am I being unrealistic to think that she can be symptom free?  We're going to the Pedi this afternoon to check on the sore throat so I'll update tonight.  I'm just frustrated.


----------



## Farmwife

Description of systemic JRA

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.

The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.

Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.


Does this sound like A? I forget if I've asked you this.:yfaint:


----------



## DanceMom

Saw the Pedi. She did a strep test which was negative. She thinks it is probably a virus or reflux. Said A is already on a good dose of Prilosec but we could add Maalox if we wanted. She felt her joints and did not think they felt stiff. A is still limping and favoring one arm but I guess there is no real inflammation there. If Elavil is supposed to help with pain it's doing a pretty terrible job. She's soaking in Epsom salts now but I don't think it is going to make an earth shattering difference.


----------



## DustyKat

Oh my.  :ghug: 

It sounds like it is time for someone to go with their gut, step up to the plate and diagnose your girl. I would be the first to say not to treat something that you are unsure of but by the same token all this dancing around the edges and not wanting to label is just resulting in a life of misery for A and for you having to stand by and watch it. :ghug: 

If the GI is 95% sure then I know there would be a lot of people that would like be 95% sure of anything including me. The stomach ulcers (dark/black blood) the small bowel ulcers (red blood). Elevated faecal Calprotectin. We all know that it is not normal to bleed from the bowel and there are only a half dozen or so things that cause it. 
The oesophagus isn’t involved so rule that out.
If we take cancer out of the equation all together then we are left with a handful of things:
Stomach - Gastritis, IBD, ulcers.
Small bowel - Infection, IBD.
Large bowel - Infection, IBD, polyps, diverticular disease, blood vessel abnormalities, ischaemia. 
Lower large bowel - IBD, haemorrhoids, fissures. 

Given the other issues present then that has to be taken into consideration and given their extra intestinal inflammatory type presentation then autoimmune must surely be the highest on the radar. I am not saying it is IBD but given the level of gastrointestinal involvement, including clinical, then Crohn’s would have to be the frontrunner in my book. 

Dusty. xxx


----------



## Maya142

Does the pain in her joints get better with movement? If it's some kind of inflammatory arthritis, often the pain gets better with movement. My girls have a really hard time sitting through class and movies and sleeping. That said, if it's a knee or a hip, walking is hard too.
Really hope A feels better soon!


----------



## DanceMom

A is still battling the knee pain but was able to dance yesterday. She placed 5th overall and was quite pleased with herself. It does seem that activity helps to ease the pain which is what makes this different from the achy joints she's had in the past. Still no swelling but I imagine if this continues the swelling will come. We're using tramadol occasionally (when she is dancing mostly) but are mostly relying on Epsom salt soaks, Icy Hot, and icing the knee to get through the day. It is just sad for a 9 year old to go through all of this and I'm becoming increasingly frustrated. It may be time to agree to the CTA and that's something I've been praying about. If it is negative then maybe the doctors can agree that she doesn't have PAN and we can explore other treatment options. I haven't given up on the Elavil just yet because it does seem to help with the diarrhea. But it does nothing for pain or bloody stools and I can only hope that in time it will.


----------



## kimmidwife

The Elavil can take some time to work. For some people it takes longer then others. I am glad it is helping the diarrhea.


----------



## Maya142

How's A feeling today DanceMom? Does she see her rheumatologist any time soon?


----------



## DanceMom

She's been on the Elavil for 2 1/2 weeks now.  Either it is changing her personality or she feels so terribly that she's like a zombie, even refusing to play.  I took her to the park today hoping she'd want to run and play but she just sat next to me on the bench.  She isn't herself and I don't like it.  I've emailed the GI about it because this can't continue.  I didn't bother contacting the Rheumo because he never answers emails or returns phone calls.  In fact, he still hasn't contacted me about the pathology report from the biopsy she had done mid-January.

Even if the Elavil eventually helps with the pain, it isn't going to stop the cause of the bloody stools or heal the fissure that seems to be getting worse.  This is just so frustrating....


----------



## Farmwife

Your right. Even if it helps in one area, it's not worth it in others.
We might be facing this with Grace, just difference in drugs.

That's ridicules about the rheumatologist.:ymad: is he your only choice? Make sure to inform her GI that you've tried to get in touch with the rheumatologist but to no avail. Maybe he can lite a fire.


Hugs to you both.


----------



## Maya142

Poor, poor A!
I agree with Farmwife, if you can find a different pediatric rheumatologist, it might be worth getting an appointment. Even if your current rheumatologist is good, he's no help if he doesn't get back to you! Getting her GI or even her pediatrician to call her rheumatologist is also a great idea, I've done that in the past and usually doctors are much more responsive to other doctors.
Will be thinking of you guys, hope the GI gets back to you soon.:ghug:


----------



## DanceMom

I think our Rheumo is incredibly knowledgable and I actually like him a lot, as does A.  I think the problem is that he has a crappy team behind him.  His nurses are lazy about checking/responding to emails (one accidentally emailed me about my daughter's spina bifida diagnosis!) and it takes them FOREVER to get insurance approval on anything (which is why the MRA of the abdomen never happened).  I've made complaints with the hospital and don't plan on seeing him again unless the GI asks us to.  They do talk to each other regularly about A and make decisions together.  I believe we do have one other Pedi Rheumo, the wife of the Neuro I despise so much. lol


----------



## DanceMom

A's knee is the same but she's dealing okay.  We are on Spring Break (and no dance this week) so we're taking it easy.  Unfortunately the stools are becoming increasingly bloody so I emailed a pic to the GI.  I'm sure they love opening my mail! lol  I think the Elavil is helping with diarrhea and also stomach aches (yay for that!) but I also think it is more like a band-aid than a real "fix".  Something is still going on in there....


----------



## DanceMom

GI finally emailed back. Basically said that her knee pain and bloody stools isn't concerning but we could do a CBC if I wanted. No, what I actually want is for my 9 year old to stop bleeding and to be able to walk without pain. I wouldn't think that's too much to ask. The advice I was given was to give it another week and then contact the Rheumo. Since it takes him a minimum of a week to get back to me we are looking at at least 2 more weeks of this crap. Frustrated is an understatement.


----------



## Catherine

Sorry the response was not helpfully.  I would get the blood test done.


----------



## my little penguin

I would call the rhuemo now since its joint pain /swelling is the rheum's area even if its just an update. that way if the doc wants her seen or something else done it can be done sooner rather than later.


----------



## DanceMom

I'm not sure what the point of a CBC is?  Her CBC results are routinely abnormal (always has a low WBC, other things are up and down with no rhyme or reason) and no one bats an eye.  And now that she's become a difficult stick for some reason (we've tried extra fluids and heat packs on the arms...doesn't help) I don't want labs done if the results won't influence anything anyway.  I think this has become a game of "Pass the Patient" and it all-around sucks.


----------



## my little penguin

Is there a diagnostic ped at your hospital?
They tend to handle kids who don't fit and take the lead on how to proceed ( or so i have been told)


----------



## Catherine

She is bleeding.  The blood test will show anemia if present.  If she has anemia they need to treat it.  Anemia can cause tireness.


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## my little penguin

> Symptoms common to many types of anemia include the following:
> 
> Easy fatigue and loss of energy
> Unusually rapid heart beat, particularly with exercise
> Shortness of breath and headache, particularly with exercise
> Difficulty concentrating
> Dizziness
> Pale skin
> Leg cramps
> Insomnia



from:

http://www.webmd.com/a-to-z-guides/understanding-anemia-symptoms


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## Maya142

Sometimes you have to pester doctors -  A shouldn't have to live like this! Can you get her pediatrician to call her rheumatologist? Or can you call her rheumatologist's office and ask to actually speak to the doctor?
I know how difficult it can be sometimes to get doctors to actually listen:ghug:


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## my little penguin

I have done the tearful message asking to speak directly to the doc saying I had very specific questions....,
Granted I only did this twice in four years but sometimes you need answers .


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## DanceMom

She's never been anemic and doesn't really show any signs of being anemic now.  Even if she were, adding an iron supplement isn't going to stop the bleeding or heal her knee. I'm not going to put A through 30 minutes of agony (which is how long it took to get a vein last time) only to be told - see, I told you that blood in the stool isn't really a problem. 

I'll give it a week like the GI suggested. It angers me to do so but maybe miracles will happen in the next week. The Rheumo is in clinic today, and always runs behind, so no chance of talking to him this week anyway. So for now I'll give Tramadol and Miralax (because even one pill constipates her) and call it a day.


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## Farmwife

:hug: Hang in there. We're all here for you both.


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## araceli

I am so sorry you and A still have no answers. I don't understand how the GI can think that bloody stools and any kind of joint pain is not concerning. Sending hugs and support.


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## Sascot

Thinking of you, hope she does improve so she doesn't need bloods done. It is so horrible watching them struggle to get a vein.


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## Imerald

I'm sorry DanceMom.  poor A must be miserable. (And you too) I hope she finds some relief soon. 


Mom to Ella, dx'd with UC on 11/13 at 2.5y/o


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## kimmidwife

Really hope you get some answers soon! This undiagnosed state is soooo tough! Sending hugs for both of you!


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## DustyKat

:ghug::ghug::ghug: and more hugs! 

How is A going DanceMom? Have things settled at all? 

Thinking of you both. :heart:

Dusty. xxx


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## DanceMom

Things are pretty much the same - knee pain, diarrhea, bloody stools, EN has come back.  She does get headaches/stomachaches but she feels that they aren't as severe as in the past so that must be due to the Elavil.  So my non-professional opinion is that the disease is not under control but the Elavil helps to keep her comfortable (although it does nothing for joint pain).  I'll email the Rheumo on Monday, per GI orders.


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## Farmwife

I forget.....is she still on mtx? Have they upped her dose?


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## DanceMom

We're still doing mtx.  She had her shot last night actually.  The GI felt that the dose was adequate for her size so there was no talk of him upping it (although the Rheumy said we'd give it 3-4 months and then make changes based on how she was doing).  I've learned that our "plan" is ever-changing and not to count on anything the doctors say actually happening.  

This has really been a rough few weeks but I'm assuming the GI wants to give the Elavil more time to work before changing any other meds or doing any additional testing.  If she were only having pain I'd love that plan.  But Elavil isn't going to stop the bloody stools, it won't heal the EN, it has never helped her joint pain, and it is no longer helping with the diarrhea.  So the additional week before contacting the Rheumy will give us more data (because I have my lovely checklist that is a great visual to see just how crappy she's doing) and will hopefully help them understand that this can't continue.  That's what is getting me through this week anyway.


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## DustyKat

My heart goes out to you DanceMom. :Karl: Yours must be breaking. 

Sending healing thoughts your way. :ghug:

Dusty. xxx


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## DanceMom

For those of you who have kiddos with joint issues...

A's knee hurts her all the time, but definitely worse in the morning and with more vigorous exercise (like running or tumbling).  The pain increases when she tries to straighten it, and when sitting with both legs out in front of her the right knee just doesn't seem to straighten all the way (like it is really tight).  Does this sound about right?


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## Maya142

That's exactly what happened to M when she was first diagnosed with juvenile arthritis. Her knee wouldn't straighten and was swollen. I'm not sure about the exercise part because once it became really swollen I didn't let her play soccer or anything (I thought it was an injury!).

M's knee became better after it was aspirated and she was given a cortisone shot in it. We also started on NSAIDs at that time (not sure that's an option for A?). Once more joints became involved we went to biologics.

It seems like A really needs to see her rheumatologist. I hope they get back to you SOON, this is ridiculous!


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## my little penguin

DS is different 
His is primarily morning stiffness which goes away after a few hours if he wears hands splints at night - if not it can last till mid afternoon .
Then it gets worse again but evening or if he is staying in one position for too long ( holding a pencil etc...)
Exercise - hand putty etc help his hands feel better .

Has she seen an orthopedists since her muscles can't straighten out ?


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## Farmwife

Grace is stiff in the morning but horrible pain in the evening. Also Grace seems to have muscle issues but has been able to straighten. She however has been able to do PT for the last year and a half. Her rheumatologist wants her to keep up PT so she doesn't lose mobility.

Do you know how her rheumatologist dx's JRA? I've read that some want the child to have these issues for six months before declaring JRA.


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## Maya142

M also has "morning stiffness" that lasts hours and she also has really bad evenings/nights. Sitting in one position/not moving is especially hard for her. PT has helped somewhat but she has still lost a lot of mobility in her lower back.
Our rheumatologist says 6-8 weeks I think before diagnosing juvenile arthritis. Of course, the diagnosis depends on other things too.


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## araceli

My son is same as MLP, Maya's and Farmwife kids. Morning stiffness, pain improves with movement. Also on PT for the past 3 months.


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## my little penguin

DS also  does "pt" aka swimming multiple days a week


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## DanceMom

Well, A has another competition this weekend so we're hoping for the best.  We've packed the Icy Hot and the Ultram and she knows she needs to do some extra stretches before taking the stage.

As far as her knee not straightening all the way....I've been thinking about it and I'm wondering if it is because of the way she's been walking.  She walks with a sort of limp, especially in the mornings, and it hurts her to extend her leg all the way out.  I'm thinking  that because of the limp she's allowed the muscles in her leg to tighten.  Her pain would possibly improve with movement - if she'd move it properly without limping.


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## DustyKat

Sending A mega loads of squishy hugs and luck for the competition! Regardless of the outcome I know she will try her heart out, bless her. :heart: Just makes me want to cry knowing what she has to deal with  , must be unbearable for you mum. :ghug: 

I was wondering if her hamstring may be playing a part in her not being able to fully straighten her leg and hoping it would be that ‘simple’. 

Good luck in all things DanceMom. 

Dusty. xxx


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## DanceMom

Just have to give a quick update! A just danced her trio and she rocked it! Her tumbling was the best she's ever done on stage! Lol She said her knee was killing her but she knew she could tough it out for 2 minutes. I'm so proud of her! Awards in a few hours!


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## Sascot

Well done to her! Such a brave girl.


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## DustyKat

:ywow::ywow::ywow::ywow::ywow::ywow: That is brilliant! 

Mega well done’s to A. What an absolute champion she is. :medal1:

:mademyday:

Dusty. xxx


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## Farmwife

Well done A.:medal1:


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## kimmidwife

Well done!!!! Tell her we are all cheering for her!


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## Maya142

Way to go A! She really is such a tough little girl, DustyKat nailed it when she called A a champion!


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## DanceMom

The competition is finally over (this was an exhausting weekend). A danced her solo today and she was amazing. She won Stage Presence award and 1st place overall. She's ecstatic and I'm ridiculously proud of her. Her knee pain hasn't let up and now she has another sore throat so I'm assuming it's another cold/virus. I'll be sitting down to email the Rheumo tonight!


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## kimmidwife

1st place that is amazing!!!!!! Tell her we are all so proud of her! Hope she feels better soon.


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## DustyKat

OMG!!! That is phenomenal!!! :dusty::dusty::dusty:

What an amazing young lady you are A and such a wonderful role model to those around you. Well done! :award2:

:mademyday: 

Dusty. xxx


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## araceli

:medal1::medal1::medal1:Congratulations.


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## Tesscorm

Wow, that is amazing!!!  You must be so incredibly proud of her!! 

:dusty: :medal1: :dusty:


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## DanceMom

Thank you all for the kind and encouraging words!  I am incredibly proud of her and I know she will cherish that moment of hearing her name announced as "champion" for a long, long time.

I did email the Rheumy yesterday but no response yet.  The Pediatrician feels A has another virus causing the sore throat and ear pain.  She said her ear is not infected but the Eustachian tube is inflamed.  She gave her Nasonex and said to use Tylenol for pain.  So far no relief but we're trying to be patient.


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## my little penguin

Nasonex takes at least two weeks to start working and peeks at 6 weeks.
Does she see an allergist ???
Since I assume pollen is very high in your area right now.
Some don't test positive for allergies but still react for a few seasons before the tests are positve .

Hugs


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## DanceMom

A has had many allergy tests in the past but did not have environmental allergies other than mold. I'm almost positive this is a virus because my husband has a sore throat and nasal congestion as well. A few years ago A had an ear infection that didn't respond to antibiotics and we used Nasonex to reduce the swelling. She felt relief after 2-3 days of using it. It doesn't always take 2 weeks for results and we're hoping for faster relief this time around as well. Between her knee, this virus, and now her fissure getting worse she's becoming pretty frustrated and irritable. It would be nice if the Rheumo would at least respond to my email.


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## DustyKat

How is A doing DanceMom? Have you heard back from the Rheumo? 

Dusty. xxx


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## DanceMom

A is basically the same. Her knee does seem to be getting better but now she tells me her back has been hurting all week and feels as if it needs to pop. If it isn't one thing it's another. Her ear pain is easing up some but her throat is still sore. The BMs are becoming more obvious with blood so that does concern me. But still no response from the Rheumo. At this point we may as well just wait until her GI appointment that's in a week and a half.


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## DustyKat

{Hugs} to you and your girl, DanceMom. :ghug: 

:hang: mum. You are doing a brilliant job keeping on top of things. 

In my thoughts. :heart: 

Dusty. xxx


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## DanceMom

The Rheumo nurse finally emailed.  That only took 5 days....

They want to see her on Monday.  I'm hoping they will either increase the mtx or start a new med entirely.  I'm not looking for another bandaid like Elavil (although I think the Elavil is worthwhile right now because it is keeping her from being so easily dehydrated).  So we will have a restful weekend (other than a family funeral to attend tomorrow) and hopefully have a new plan going into a new week.


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## Maya142

That's GREAT news! At least they're seeing her! I hope they pay attention to all her joint pain. Where does her back hurt?
In terms of joint pain, we started on NSAIDs and then went straight to biologics and then added mtx. But I think they would have to officially diagnose her with some sort of arthritis before adding biologics.
I hope the GI appointment goes well too. 
So glad to hear that something is happening with A. She's been through enough!


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## DanceMom

The appointment has been changed to Tuesday but that's fine.  One more day won't matter much.  I've been told not to give NSAIDs due to GI issues but I'm not opposed to biologics at this point.  A med change is always scary but I know my baby can't go on like this for much longer.

Maya - I'm not sure of an exact location for back pain.  I'll try to get more specifics from her tonight.  I was shocked to hear it was bothering her because she had never mentioned it before.


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## Maya142

In M's case her GI and rheumatologist decided the arthritis was more severe than the Crohn's so NSAIDs were ok. So it's really individual but given that A's already bleeding, probably not the best for her!
Remember to ask about enthesitis-related arthritis/spondyloarthropathy -- it often goes with Crohn's (though I know that diagnosis is not 100% certain).
Really hope they're able to help A! Will be thinking of you guys.


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## DanceMom

Headed to our Rheumo appointment in a few!  Hoping to get some answers and a plan to go forward with.  Poor girl had 9 BMs yesterday, all diarrhea.  Prior to that she'd gone almost 2 weeks without diarrhea so we're definitely moving in the wrong direction.  I can only hope we are taken seriously and I don't get the "I see so many kids that are much sicker than she is" speech.

I asked A to be more specific about her back pain and she said the pain is very minimal but the stiffness is much worse (probably classified as moderate).  She's always trying to twist and bend because she says it feels like it needs to pop.  And now yesterday her pinky finger started hurting for no apparent reason.  It is always something.

Also, after dancing/exercising she says her legs feel wobbly/shaky and it takes them hours to feel normal again.  I have no idea what is causing this (it is a new symptom) but I hope the Rheumo can explain it.

Okay, enough rambling from me.....lol


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## DustyKat

Sending you loads of luck with the appointment DanceMom! :goodluck: 



> I can only hope we are taken seriously and I don't get the "I see so many kids that are much sicker than she is" speech.


Good grief, I hope they don’t say that to you! That is awful, it’s not like you want your precious daughter to be there! Idiots!  

Thinking of you both! :heart:

Dusty. xxx


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