# Appointment Update



## DanceMom (Apr 15, 2014)

I've decided to start a new thread since it is looking less likely that A has systemic vasculitis.  The Rheumo appointment we had today was very helpful (and 2 hours long!) and I think we have a tentative plan.

First, he looked at my photos (doesn't everyone have a poop gallery on their phone? lol) and symptom chart.  He was rather horrified at both because he thought she looked relatively well in appearance (though he noticed her hair loss right away).  Then he reviewed the labs she had done in March (ordered by GI) and gave her a thorough exam.

Basically, he feels she has an autoimmune disorder of some sort, likely Crohn's, and an immune deficiency as well.  He ordered some pretty specialized immune labs that will hopefully give us a better picture of what exactly is going on.  The GI is pushing for IVIG but we need to wait until at least June/July to have 1 final round of antibody testing prior to starting any therapy.  She has already lost immunity to several serotypes and we're expecting her to lose even more over time.  As for her joints, he suspects the mtx is keeping her from developing arthritis but did notice that her joints were hypermobile.  He gave a prescription for PT so I'll definitely check into that.

We also discussed Remicade and he's going to speak to the GI about it.  Only problem is that Remicade requires a diagnosis and we are still in limbo.  They have a week to get together and make decisions before I come charging in to our GI appointment! lol


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## Maya142 (Apr 15, 2014)

Glad to hear things are finally moving forward! Hopefully, this will all be a bad memory soon.
Would she do IVIG and Remicade or is it one or the other?


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## Sascot (Apr 16, 2014)

It does sound like he was very thorough which is great. Sounds like a but more waiting for treatment though, hope it doesn't take too long.


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## DanceMom (Apr 16, 2014)

Maya - I'm not really sure the answer to that.  The GI wants her to start IVIG now but I know we can't until all the testing is complete.  We need definite answers and it is a lengthy and expensive process.  I have to get prior authorizations from our insurance company before even doing these new labs he ordered.  There is also the possibility of A being accepted into a research program at All Children's Hospital.  Our Rheumo recently attended an Immune Disorder conference and met a pathologist there (working out of All Children's) who is studying "puzzling cases".  From what I understand she is isolating and studying 100 genes related to the immune system, possibly identifying new Immune Disorders along the way.  I'll admit, the immune system is very confusing and complicated to me and I may have some of my info on this a little "off".


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## Maya142 (Apr 16, 2014)

Don't know if A swims, but just being in the water helps my girls with joint pain. PT helps too when I can convince them they have to do it!


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## DanceMom (Apr 16, 2014)

Not a great day.  My youngest has some sort of virus - low grade fever, vomited once, headache and stomach ache.  Seriously hoping A doesn't catch this because we end up inpatient with every stomach virus she gets (3 in the last year).

A's fissure is hurting her and it looks worse to me.  What used to look more like a paper cut is now shaped more like an oval and bright red.  I'm assuming the diarrhea is making it worse (she's gone 7 times today).  Silly girl has made up a song about it and is considering naming it, lol.


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## kimmidwife (Apr 16, 2014)

I am glad to hear the rheumatologist is finally giving you guys some answers. He really sounds great. I hope they can start her on the remicade since it is supposed to help so well with fissures!


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## Mehita (Apr 17, 2014)

Can fissures turn into fistulas? Will she let you take photos to monitor how it changes?


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## DanceMom (Apr 17, 2014)

I think I will try to take photos Mehita.  I'm also going to have the GI take a look next week.

I've done a little research about the pneumococcal serotypes and where A stands with that.  When initially tested in October she was not protected against any of the 23 serotypes.  She then received a booster and was retested in December.  At that time she was protected against 83% of the serotypes so that was considered a good response.  She was tested again in March and is only protected against 74% of the serotypes.  Kids 5 and older are expected to be protected against at least 70% of the serotypes for several years after being immunized.  She has 2 more serotypes that are very close to being considered "not protected" and when we test again in a few months she will likely be under that expected 70%.  Apparently she is one of the weird few that initially have a good response to vaccines but then quickly lose protection.  I really want my youngest tested too because she suffers from asthma and chronic sinusitis but the Pedi looked at me like I had 2 heads when I asked to have her Immunoglobulins tested.


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## kimmidwife (Apr 17, 2014)

Mehita,
Fissures can turn into fistulas. That is why it is important to keep an eye on them.


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## Mehita (Apr 17, 2014)

Maybe the pedi was just so shocked you even know what immunoglobulins are.  I'm guessing most parents don't.

Need a laugh? My baby guinea pigs had labs run when they had an infection a few months ago. Same labs that DS has run. The vet was surprised with how much I knew... tho guinea pig normal ranges are very different. :rof:

What did the dr say about the serotypes? Does that point them in any direction now?


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## Farmwife (Apr 17, 2014)

Just getting caught up. Sounds like a good appointment. I hope this is the doctor who can really help.

How is she today?


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## Tesscorm (Apr 17, 2014)

Mehita said:


> The vet was surprised with how much I knew...


BTDT!!  :rof:  Our last dog once had colitis and our current dog had some GI problems a while back, now I forget exactly what, something with his pancreas but, in both cases, I knew ALL about the tests and even asked the vet about a couple he said he'd have to check with the GI vet specialist!! :ybatty:  Didn't get to that point but, when he mentioned the 'specialist', I was thinking 'noooo wayyy :ywow:, I can't seriously need a doggy GI'!! :lol:


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## DanceMom (Apr 17, 2014)

The Rheumo is expecting her to lose protection to more serotypes by summer but that still wouldn't tell exactly which immune deficiency she has. These 4 other labs he ordered will hopefully point us in the right direction though. 

A is having more stomach cramps today and had an embarrassing moment at dance, poor girl. Today was picture day and as she was bending over to change costumes she pooped on the floor, right in front of everyone. She just laughed it off and cleaned it up but I hate that it even happened to her. And now she's started this strange new symptom - uncontrollable trembling. I thought she was just cold at first but after warming her up she's still shaking. Anyone had this before?


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## Mehita (Apr 17, 2014)

Does she have a fever?


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## DanceMom (Apr 17, 2014)

No fever. She's in bed now so I'm hoping this is just some freak thing that is gone by morning.


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## Tesscorm (Apr 17, 2014)

Poor thing.  She is such a strong little girl but it isn't fair that she does have to deal with such moments! 

Re the trembling...  Stephen has complained that he's much more sensitive to cold since being diagnosed???  And, I have seen him tremble with cold when it's not really that cold out??  I've asked here, googled what I can, researched about body temperature/sensitivity, etc. and have never found any connection to crohns or anything else that seemed connected to him though.


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## Maya142 (Apr 17, 2014)

Oh poor A, I wish they could do something to help her NOW. She really has been through enough.
Is she allowed to take Imodium or something for the diarrhea?


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## DustyKat (Apr 18, 2014)

Oh my, how awful for A and for you for having to see her go through that, bless you both. :ghug: 

What an amazing lass she is DanceMom to have dealt with it so well. :heart:

Dusty. xxx


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## DanceMom (Apr 21, 2014)

Well, thankfully the shaking/trembling subsided by morning and she hasn't complained of it since!  She actually had a pretty good weekend, all things considered.  My one vent is that she stayed the night with my in-laws (to color eggs and attend an egg hunt at their church) and she forgot to take her morning and night meds.  I did remind her how important it is to take them but I can't help but be annoyed with my in-laws who not only didn't remind her to take them but never even let me know that she didn't.  A is 9 and always takes her own meds at home but our new policy is that when she stays away she must call before bedtime and after breakfast so we can check on her (and make sure she took her meds!).  My inlaws drive me batty sometimes!

GI appointment is tomorrow.  I hope he's ready for me! lol


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## DustyKat (Apr 21, 2014)

Thanks for the update DanceMom. :ghug:

It’s wonderful to hear that A had a good Easter weekend , as you say, all things considered. Bless her :heart: 

Sending loads of luck for the appointment! 

Dusty. xxx


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## AZMOM (Apr 21, 2014)

Great news, DanceMom.  And for the record.....my in-laws drive me batty ALL the time.  :ybatty: 

J.


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## Maya142 (Apr 21, 2014)

Glad she had a good weekend! Good luck with the appointment!


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## Tesscorm (Apr 21, 2014)

Glad the weekend went well!  Good luck at apptmt! :ghug:


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## DanceMom (Apr 22, 2014)

The GI nurse called and moved the appointment up by 40 minutes.  Her exact words, "We moved some people around so we could spend more time with you.  Wouldn't want to keep you all night!"  I'm hoping that's a good sign that this will be a productive appointment!


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## DanceMom (Apr 22, 2014)

Today's appointment was productive in the sense that we have a plan.  We have decided to take her off of the mtx and take a "wait and see" approach.  This breaks my heart because I know her health will decline but it seems to be the only way to get concrete answers.  The GI cannot be certain that she has IBD, and the possibility of an immune deficiency makes things even more complicated.  This just seems like the best approach for right now.

We will have baseline labs done next week and we'll continue with our symptom diary.  We are going to up the Elavil a little to try to keep her comfortable through all of this.  Over the summer we will check antibody levels as planned with Rheumo and do a Fecal Calp if symptoms persist (and I'm sure they will).

A is happy that she doesn't have to have any more shots but she is having a hard time understanding why we are going to intentionally let her get sick.  It is a decision that was hard to explain to her and one I wish I didn't have to make in the first place.  Things just need to play out for right now, as much as that sucks for everyone.  Our goal is to start our new therapy (IVIG or Remicade) by August.


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## DustyKat (Apr 23, 2014)

:ghug::ghug::ghug: I so wish there was an easier way for your lass, DanceMom.  

Sending you loads and loads of luck and healing thoughts for the journey ahead. :heart: 

In my thoughts. 

Dusty. xxx


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## Sascot (Apr 23, 2014)

Sorry you are having to wait and see again. I can understand them wanting to check things once she is off meds. Just frustrating for both of you. Hope she copes okay


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## Maya142 (Apr 23, 2014)

Sorry to hear you're still stuck waiting. Poor A! Will they be repeating scopes if she gets worse?


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## DanceMom (Apr 23, 2014)

There is not a plan to repeat scopes right now.  Her main area of disease is in the small intestine, not reachable by scope.  The only things we've found that give a picture of what is going on is fecal calp and pill cam.


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## DanceMom (Apr 28, 2014)

No major changes in the past week. Still having joint pains and bloody stools. Stomach aches are becoming more frequent but aren't severe. The leg tingling thing seems to be more persistent but at least it doesn't upset her anymore. For the last 2 days she says she constantly feels thirsty and she's chugging water like crazy. I'm wondering if she has dry mouth from the increase in Elavil. Is that a side effect? She had labs done today so if anything is too wacky I guess we'll find out soon.


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## DanceMom (Apr 29, 2014)

Lab results are starting to come in.  Other than low WBC (which she always has) everything looks good.  Still waiting on Vitamin D-3 but I expect that to be normal as well.


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## DustyKat (Apr 30, 2014)

Unfortunately a dry mouth is a very common side effect of these type of antidepressants.  

Wishing your lass answers and relief ASAP! :ghug: 

Dusty. xxx


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## DanceMom (Apr 30, 2014)

Vitamin D lab was fine.  So basically only thing off was low WBC which seems to be her norm.  Truly, fecal calp is the only test that gives an accurate picture so I didn't put much stock into these labs anyway.

Turned in the paperwork for PT so I should hear something back by the end of the week.  Hoping to get her evaluated within the next 2-3 weeks.  Now her wrist is bothering her again which is just frustrating.

We've also decided to stop the Prilosec.  In the past few days she's had heartburn and has been spitting up so I'm thinking that without the mtx the Prilosec isn't enough to make a difference anyway.  I know that this is only truly the beginning and that things are going to get much worse.  I'm just trying to take one day at a time and be happy for the good moments.


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## my little penguin (Apr 30, 2014)

Talk to the Gi but even heartburn the Prilosec was probably still neutralizing the acid so there would be less long term damage to her esphagus .


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## DanceMom (Apr 30, 2014)

Unfortunately we're waiting for long term or chronic damage.  That's the only way we'll ever get a diagnosis.  We already have proof of acute inflammation and ulcers and that got us nowhere.  We seriously have to sit back and watch her get sick enough so that we can figure out if she has PAN, Crohn's, or an immune deficiency.


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## my little penguin (Apr 30, 2014)

> One of the first signs of Blau is the presence of a rash in infancy or early childhood, often around 4 months of age. Arthritis is the most common finding in Blau patients, and starts within the first 10 years of life. The arthritis often causes cystic swelling of the wrists, ankles, elbow and fingers, with tenderness and erythema. A distinguishing feature in Blau patients is the presence of noncaseating granulomas present in skin, synovial (joint) or conjunctival (eye) biopsies. Patients can also have synovial cysts, and uveitis which can cause significant and permanent vision damage. Some patients also have inflammatory bowel disease symptoms. Crohns Disease, and inflammatory bowel disease, has been also found to have mutations in the NOD2/CARD 15 gene.
> 
> Blau can present as "typical" with the condition mostly affecting the skin, joints and eyes, or "atypical" where other organs in the body, including the kidney, liver and peripheral nerves are affected. Occasionally the lungs are affected as well.


Have you seen this ?


From:
http://www.nomidalliance.org/blau.php


And
http://escholarship.org/uc/item/1gz33233

Big hugs


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## DanceMom (May 1, 2014)

I actually did come across those articles in my manic search for answers, lol.  I believe I googled "Immune Deficiency Causing Crohn's" or something along those lines.  I don't think Blau Syndrome is a perfict fit for her case but it does raise an interesting and important point.  Crohn's is becoming increasingly common and the more I think about it the more rare my child seems.  I think it is absolutely possible that she has a more rare immune disorder that presents with Crohn's-like symptoms.  I also think it is possible that there may not yet be a name for the disorder that she has.  Thankfully we have great doctors and there is hope!


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## my little penguin (May 1, 2014)

http://www.stopcaidnow.org/

Top ped Rheumo at Cleveland clinic
Might be worth a call 

http://health.clevelandclinic.org/2012/10/blau-syndrome-a-mom-takes-charge/


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## DanceMom (May 4, 2014)

We've had an up and down sort of weekend.  One minute she seems perfectly fine, dancing her heart out on stage (and winning 1st overall!)....the next minute she has explosive diarrhea and doesn't make it to the bathroom in time.  Thank God she has good friends that aren't phased at all by this and rig her up a new outfit and makeshift "pad" so she can continue hanging out at the competition.  Last night she was crying and restless for over an hour with a headache and stomachache.....today she is laughing and playing in the pool.

Looking at her symptom chart she's had a stomachache and joint pains consistently for the past week so the Elavil isn't working so well anymore, even at the increased dose.  I'll give it another week, then email the GI to see if we can increase to 20mg.

I knew this was going to be frustrating and heartbreaking.  Right now I'm just thankful that she feels good at times and is still able to be happy and enjoy things.  This next week will be pretty busy as we wrap-up our Spring semester of church and A prepares for her final Regional competition next weekend.


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## Mehita (May 4, 2014)

Does she feel better after the bouts of diarrhea?


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## DanceMom (May 4, 2014)

She only had diarrhea once this weekend, about 20 minutes after dinner.  She said her stomach felt "grumbly" beforehand, but not really painful.  It was a few hours later that the intense pain came from out of nowhere.  She just cried, moaned, and writhed in pain and it was difficult for me to calm her down so that she could fall asleep.  She used to do this daily prior to starting medications so it doesn't surprise me that it is happening again.


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## DanceMom (May 5, 2014)

She is now lethargic with a fever. I think it is likely just a virus, but I know that "just a virus" has landed her inpatient 3 times in the last year. Ugh.


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## Imerald (May 6, 2014)

I hope you get your answers soon. I totally get the logic, too. After Ella's first colonoscopy the GI wanted to load her on meds, but still wanted to also do a upper GI and Endoscopy.  We refused the meds because we wanted to see what the tests showed without medication. 


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


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## DanceMom (May 6, 2014)

Took A to the Pedi today. No strep, just another virus. This is the third sore throat virus she's had in the last 6 weeks. Her fever broke mid-day so she feels a little better, but I'm starting to think there's definitely an immune issue going on.


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## AZMOM (May 6, 2014)

DustyKat said it best once.......our kids just can't be "sick".  We are always watching out of the corner of our eyes, right?  And we have GOOD REASON!

Hope she feels better tonight 

J.


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## DustyKat (May 8, 2014)

> DustyKat said it best once.......our kids just can't be "sick".


^^^FIGJAM! :lol: 

On a more serious note…I hope your lass is feeling better today DanceMom. :ghug:

Dusty. xxx


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## Mehita (May 8, 2014)

Figjam?

Never mind. I just Googled it. :lol:


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## Jmrogers4 (May 8, 2014)

Glad I wasn't the only one that had to google.  I was thinking they made jam out of figs but that didn't make much sense.  I probably could have asked my kids.


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## Farmwife (May 8, 2014)

So it's not fig jam?:rof:

But this is Dusty........do we want to know the meaning?:eek2:


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## Jmrogers4 (May 8, 2014)

You probably don't fw, might blister your ears


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## my little penguin (May 8, 2014)

Yeah not for you--- CIC and Tess maybe ....add a sailor some wine and it's all good


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## Farmwife (May 8, 2014)

Jmrogers4 said:


> You probably don't fw, might blister your ears


:tongue: 

I googled and............:facepalm:


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## Tesscorm (May 8, 2014)

LMFAO!!!  That is so funny!  Maybe I should make that into a bouncing screensaver at work! :lol:

Dusty - I think you should change your forum title to FIGJAM!  

(DanceMom - so sorry your thread has degenerated to this level! It takes so little for these ladies... :facepalm


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## DustyKat (May 9, 2014)

:lol: I have actually thought of that Tess! :ybiggrin:


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## Sascot (May 9, 2014)

Just googled it too, very good! I however have eaten actual fig jam in South Africa - it's quite nice .
Really hope A is feeling okay just now and getting over the virus.


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## Catherine (May 9, 2014)

Love fig jam!!!


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## DanceMom (May 9, 2014)

You guys totally derailed my thread :ymad:

Okay, so maybe I needed a little chuckle :tongue:

A is still complaining of a sore throat but says it is better than it was at the beginning of the week.  It doesn't slow down her appetite and she's been going to school, church, and dance without issue.  Other symptoms (joint pain, diarrhea, bloody stools, stomach aches) are still present but she's dealing okay.  This morning she did mention that her "private" hurt which is what she said the day before she came down with a horrible UTI.  Fingers crossed that isn't what is happening!  This weekend is her last regional dance competition and I want it to be as pleasant as possible!!


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## DustyKat (May 9, 2014)

Sending loads of love and hugs to you both DanceMom! :ghug: 

I so hope A doesn’t have a UTI, bless her, she never ceases to amaze me with her ability to push on through things. What an absolute champion she is and she must make your heart sing with pride mum. :hug: 

Good luck with the regionals! Go A!!!

Dusty. xxx


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## DanceMom (May 10, 2014)

Very quick update.....
A danced beautifully today! Second overall for her solo and trio! Still not sure if she's developing a UTI, but she has developed a very tight sounding cough. She's also been extremely lethargic. I honestly can't believe she danced as well as she did.


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## Farmwife (May 10, 2014)

I'm glad to did so well despite how she felt.

Has she told you the colour of her urine?


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## DustyKat (May 10, 2014)

Awww, she is such a sweetheart DanceMom and wicked tough to go with it! 

Well done A! :dusty::dusty::dusty::dusty::dusty::dusty::dusty:

Dusty. xxx


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## DanceMom (May 12, 2014)

A finished the competition well.  Her group placed 3rd overall and she was satisfied with that.  We actually ran into her GI at the competition so she was happy to see him!

Her UTI symptoms are gone.  Cough is the same.  Fissure is worse.  Strange thing is happening though....first tan, and now pink stool!  Not red, but pink!  She hasn't eaten/drank anything red in the last week or so.  Any idea what could be causing this?


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## CrohnsKidMom (May 12, 2014)

So glad she is doing well in dance, but sorry for the ongoing issues.  Poor gal, sounds like she is a real trooper though.   Sorry, no thoughts on the pink poop.  I hope you get some answers soon.  take care!


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## DanceMom (May 18, 2014)

A is doing fairly well, all things considered.  She had her first sleepover this weekend and has been working on her tumbling every chance she gets. Her stool is still pink which has me baffled.  Sometimes red blood is visible, other times not. For now we're just going with the flow and counting our blessings!


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## Mehita (May 19, 2014)

I ran across this the other day in researching something else... not likely to apply in your case, but thought I'd throw it out there. I don't know what half the stuff on the list is.

Red/Pink Stool could be due to:

Blood
Diazepam syrup
Ampicillin
Viprynium
Phenophthalein
Red Jell-O
Dioralyteoral rehydration solution


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## DanceMom (May 19, 2014)

The only medications she's taking are Elavil and Folic Acid. She did have watermelon yesterday (which usually comes out how it went in, lol) but other than that no red or pink foods. Could blood from the stomach or small bowel cause the stool to be pink? Maybe her ulcers are getting worse and the Elavil is masking the pain?


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## DustyKat (May 19, 2014)

Blood from the stomach, or very high up in the GI Tract, will make the stool turn black. As the focal point of the bleeding moves down through the bowel the colour will move progressively from black toward red until you reach the lower bowel where it is seen as bright or fresh blood. 

I’m not sure about the pink but you certainly couldn’t rule out that blood may be a cause. :ghug: 

Dusty. xxx


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## Farmwife (May 19, 2014)

I agree with Dusty.
Grace has/had bleeding from stomach and it came out tar thick black BUT
does A have rapid transit??? I thought she did.

Does anyone know if fast transit time would still leave the blood a lighter color?


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## DanceMom (May 19, 2014)

A's blood is almost always red or maroon and her disease is in her stomach and small intestine. She does have rapid transit although it is normalizing some since being on Elavil. Her colon is perfectly healthy. I got a good pic of the pink stool today so I think I'll see what the GI thinks. I'm sure he's missing me anyway! Lol


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## araceli (May 20, 2014)

I hope A feels better soon. A note on Elavil causing dry mouth... Hard candy works well. It lasted a while but my son does not have dry mouth any more, so maybe A's will go away too.


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## Tesscorm (May 20, 2014)

Was just thinking that you mentioned she'd eaten no red foods but what about medications? Are any of the meds red?  Maybe a dye?


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## DanceMom (May 20, 2014)

Elavil is blue and Folic Acid is a very pale yellow.  She's having 1-3 stools a day and for the last week and a half or so they've all been pink.  It must be blood.  She's feeling okay so I'm just going to let it alone and add it to my chart.  She hasn't lost weight and she seems pretty energetic.  The last 2 days she has complained of shortness of breath though.  She doesn't seem congested so I'm wondering if it could be related to reflux.  Anyone else's kid get short of breath?


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## Tesscorm (May 21, 2014)

How is her HGB?  I don't know about shortness of breath and reflux but do vividly remember being very short of breath at relatively minor exertion when my HGB was low.  And, if she is losing blood, it may be affecting her HGB by now.  :ghug:


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## DanceMom (May 21, 2014)

Her HGB has always been good in the past.  But you're right....if the pink is blood then she's probably losing more now than she ever has.  She does have asthma (but this doesn't seem like asthma to me) so I'm going to try giving her a breathing treatment tonight to see if that helps.  Thanks for the heads up about the HGB!  I'll research that tonight!


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## Maya142 (May 22, 2014)

If you do have bloodwork done, consider asking about ferritin. When M had iron deficiency anemia her hemoglobin was a little low (10.2 or so) but her ferritin was very low and she needed iron infusions. 

Right before we figured all this out she was exhausted all the time and was starting to get short of breath.


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## DanceMom (May 22, 2014)

Tried a breathing treatment last night and it didn't make much of a difference.  I don't think her shortness of breath is asthma related.  I checked on her while she was sleeping and she was breathing normally.  I have a feeling it is reflux/ulcer related.

She had her PT eval yesterday.  They recommended both land and water therapy.  I'm not sure how helpful it will be but we start Friday!  The therapist felt that her range of motion and strength were great and that there was likely some underlying inflammation causing pain.  We're also going to go back to icing the joints nightly.


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## Farmwife (May 22, 2014)

When Grace let's me do the icing it helps her a lot.
I hope the PT goes well.


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## my little penguin (May 22, 2014)

I am sorry she is struggling.
Asthma issues can not be easily determined .
Sleeping at night does not mean there is not an issue.
You need to let her pulmo or allergist who handles her asthma know about the shortness of breathe as well as the Gi .
There are more than a few tests that the doc will do to determine how serious of an issue it is.
If she is no longer on a control meds then that means you really need to tell the specialists that handle her asthma . Most asthma is not outgrown .
Mtx can also cause lung issues especially in kids with previous lung issues .
Again you need to talk to her talks .
Reflux causing shortness of breathe means acid is hitting her lungs so in any case 
Call the doctors .

I am not trying to be mean but breathing can down hill fast even without wheezing .
I have also had albuterol not help DS due to inflammation in his lungs .

I hope you contact her doctors soon.


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## DanceMom (May 22, 2014)

We have a peak flow meter at home.  A's numbers were only slightly below average (still in the green zone).  Typically when her asthma flares she gets a cough (usually productive and it is often bloody), her peak flow numbers decrease significantly, and she has a tightness in her chest.  This seems different.  She says she feels like she is not getting the full amount of air and every few breaths she is taking a much deeper breath (difficult to describe....).  She wasn't doing this in her sleep.

I've been told not to contact the GI or Rheumo for another 2 weeks (at least 6-8 weeks off mtx).  I always contact them with new or concerning symptoms, they run tests, things come back slightly abnormal but not definitive, and the cycle continues.  When we decided to take a "wait and see" approach I knew it would be difficult.  No one likes to see their kid sick and suffering.  But I'm going to do my best to wait a bit longer so that when we do test we actually get some answers (fingers crossed!).  If it does turn out to be an asthma issue we have the necessary medications at home.


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## DustyKat (May 23, 2014)

Just be aware that shortness of breath, when related to Hb, may not be apparent at rest. It will normally come to the fore on exertion but as it worsens it may be present at rest. Exertion can be as gentle as walking. 

Dusty. xxx


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## DanceMom (May 24, 2014)

A had her first PT session yesterday.  The therapist thinks her back pain may be related to her posture and weak core strength.  She said it can be common in dancers because dance tends to encourage the girls to stick out their chest and sway their back.  Makes sense.  They focused on core exercises for about 40 minutes and A could feel it afterward!  She's worked on some of the exercises at home today.  She's determined to feel better!

She's back to having daily low-grade fevers (99.5-100 right now).  For her, this is a symptom of a flare.  That Elavil must be some powerful stuff because typically she's feeling pretty awful by this point.  Instead she's going to gym and playing outside!  Hopefully her activity level continues!!


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## my little penguin (May 24, 2014)

http://dermnetnz.mobify.me/reactions/sweets.html


Have they ruled out sweets syndrome for her ???


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## DanceMom (May 25, 2014)

Sweets isn't a part of her differential diagnosis, but I suppose anything is possible. I am starting to notice that she's more irritable. So while she says she feels okay I'm not sure she really does. We're just encouraging her to drink lots of fluids, be as active as she feels like being, and get plenty of good sleep at night. Other than that it's a waiting game. We are scheduled to run the immunity labs at the beginning of July so I think I'll request a full set of labs then as well. She doesn't read well in labs, but at least it will comfort me knowing nothing is critically wrong. I worry daily, like she's a ticking bomb that could go off at any moment.


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## Mehita (May 26, 2014)

Unfortunately, even with a diagnosis, that ticking bomb feeling doesn't go away (at least with IBD). I hope and pray you guys get some answers and/or relief soon.:ghug:


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## DanceMom (May 26, 2014)

I think for me the feeling comes from lack of a maintenance medication.  Even though the mtx didn't seem to be 100% effective, I felt like it was some protection.  Now there's nothing...just Elavil to mask the symptoms a bit.

Tonight, for the first time in quite a while, she's been crying with stomach cramps.  Hoping she feels better in the morning!  There is a stomach bug going around and I'm hoping she didn't pick that up.  I'm also hoping that things aren't about to go downhill so quickly that the Elavil will no longer help.  Just trying to get through the next 2 weeks of school without any complications!


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## DanceMom (May 28, 2014)

VERY bad day here!  A has some pretty raging diarrhea and a very inflamed bottom.  She screamed so loudly in the grocery store bathroom that an employee came in to see what was going on.  (Awkward moment for everyone involved!)

I had her soak in the tub (while she cried) and then tried applying the butt paste we usually use.  She screamed again and literally did laps around the house screaming that she was on fire.  It was horrific.  Her small fissure is still visible but it seems that the pain may be from the redness around the area.  She's been red before but never in this much pain.  What the heck?!?  Any suggestions?


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## my little penguin (May 28, 2014)

DS 's only relief last year was butt creme /steriod creme and air to the area at night .
Hugs


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## DanceMom (May 28, 2014)

She complained yesterday evening that it was starting to hurt so I had her air the area while she was sleeping.  It was only a little red at that point.  This afternoon she said that sitting at school was very uncomfortable and squatting at PE was out of the question.  But once the diarrhea started.....oh my.....

I don't think she's going to let me try the butt paste again.  It was like a scene from a horror flick.  I guess we'll go with "airing it out" and hope for the best.  These poor kids!


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## my little penguin (May 28, 2014)

I forgot -DS used bactroban creme without any burn and it healed it faster than the butt paste-
Along with air of course

So if you have neosporin


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## Farmwife (May 28, 2014)

Could it be infected now? This has happened to Grace. It didn't look to different but it kept spreading.


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## AZMOM (May 28, 2014)

I know it's beyond basic but have you tried keeping her little bum coated with Aquaphor?  And of course, carrying the wipes to avoid paper?

I hate to hear she's hurting.  :-(

J


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## Maya142 (May 28, 2014)

Poor A and poor Mom! We've also had success with Aquaphor/ Desitin but sometimes M does complain that they sting. 

M's GI suggested a hydrocortisone cream when her bottom was very red but M hated that - said it burned. Sitting in warm water several times a day is the only thing that helped her. 

I really hope A feels better soon!


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## DustyKat (May 29, 2014)

Oh no, poor A.  :ghug: 

An antifungal or antibiotic cream is good if you think there is infection present. 

Can you get a lidnocaine based anal ointment that is suitable for children? A cream that is very good for adults is Rectogesic but I don’t know if there is an equivalent for kids so I would as the Pharmacist. The advantage of this type of ointment is that when a fissure is present it helps relax the muscles around the anus and so reduce the pain. 

With so much redness present you could alternate a cream like Rectogesic with something like Ungvita or PawPaw ointment. Zinc based creams are very good but can be difficult to clean off so not always the best choice when the area is inflamed and painful. 

Sitz baths are good, they will aid healing and cleanse. You can also dry the area with a hair dryer on the low setting and that also helps. 

Dusty. xxx


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## DanceMom (May 29, 2014)

I think we may have a much bigger problem....

A woke up this morning with a lot of thick green vaginal discharge.  A lot.  Unless that can be normal (can it?) I feel like there's more going on than just some redness.  The redness doesn't seem as bright today, but it does seem to be spreading.  Going to monitor her today and if there is more discharge I'll call the GI.  Maybe this explains the UTI symptoms that come and go?


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## Sascot (May 29, 2014)

Sounds like a bad infection or thrush. Sounds like she needs oral antibiotics, can't remember if she is on any. Sorry she us still not doing great


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## Farmwife (May 29, 2014)

When Grace had hers I called the Dermatologist. She seemed more knowledgeable about the different types of bacterial/fungal/infection type problems on Grace's bum-bum (I have to call it that or Grace gets upset).:lol:


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## DanceMom (May 29, 2014)

No more discharge (that she knows of) and her bottom is less red. She says the pain is still there, stomach pain too.....yet she insisted on coming to dance class.  I don't think this is a virus but I'm still hoping it is short- lived! I'm not sure how many more public screaming fits I can take..... (dinner didn't go so well).


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## DustyKat (May 29, 2014)

A vaginal discharge, like you have described, means that there is some sort of infective process going on as it is not a normal female discharge. 

What becomes tricky is what is causing what. Due to the female anatomy it is quite easy for us to get UTI’s, our urethra is short, about 4cm compared to a male’s 20cm, and so bacteria easily tracks up into the bladder. This could come from either a vaginal infection or faeces or wearing pads, which I think she has hasn’t she? 

A vaginal infection can be caused by faecal contamination (not hard when you have diarrhoea/accidents ), wearing pads and does doing dance mean she is wearing clothes that are nylon/lycra based, so not breathable in the gusset area? 

Either one of these types of infections can cause abdo pain and is it that that is also causing or exacerbating the perianal redness and soreness? 

Either way best get it checked out mum. :ghug: 

Dusty. xxx


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## DanceMom (May 29, 2014)

Success with the Butt Paste tonight!  She said it burned a little at first but we're hoping it will help to heal the area.

Not sure if there is a vaginal infection or not.  She doesn't have any pain or itching there and does not currently have any UTI symptoms.  She isn't wearing pads right now (she has before) but has had a few accidents.  She only wears leo/tights one day a week (for ballet).  The rest of the week she wears panties/shorts with a sports bra/top.  I don't think that is contributing to the issue.

Still having stomach pain and passing mucus/liquid every 20-30 minutes.  It isn't enough to really call it a BM.  More like what one would pass towards the end of a clean out.  Considering emailing the GI tomorrow.  Maybe a simple CBC to check for infection would be a good idea.  Still hoping for a complete turn-around by morning....


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## my little penguin (May 29, 2014)

I agree with Dusty
Regardless of her other Gi issues
You really need to let the ped check her out for the vaginal discharge even if it was just once .


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## DanceMom (May 30, 2014)

Okay....I emailed the GI.  I told A I may check her out of school for blood work and she had a fit.  She suddenly felt better, and I know she just doesn't want to miss the fun end of school year activities.  Poor thing.  I also emailed her teacher and asked her to keep an eye on her today.  Teacher said she was going to email me because A had been quiet lately and didn't seem well.  Also, another student reported that A had been screaming in the bathroom.  So I emailed the GI a quick update and he can decide what, if anything, needs to be done.  Hope I'm not jumping the gun.....


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## Tesscorm (May 30, 2014)

After all you've been through, don't think you could possibly be jumping the gun!

I hope things can be resolved without much more delay! :ghug:


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## DustyKat (May 30, 2014)

^^^^ Agree with Tess 100%…you aren’t jumping the gun! :ghug: 

Good luck mum, I hope all is sorted ASAP and A soon feels much better, bless her. :heart:

Dusty. xxx


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## DanceMom (Jun 1, 2014)

No word back from the GI....hopefully tomorrow.

A is essentially the same.  Her activity level has declined substantially and we've had to cancel some of our weekend plans.  We are considering modified school days for the upcoming week.  She asked her teacher if she could come home early on Friday and that NEVER happens!  Her BMs are urgent, bloody, and painful.  We had quite the disaster at a friend's birthday party yesterday evening, but as A says, "Things could always be worse."  Her temperature seems to range between 99.5-100.5, which is elevated for her (she's typically between 97.8-98.8).

And if my FIL tells me one more time that he can't help but wonder if A's health issues stem from her nervous nature (I wouldn't even consider her to be an anxious kid!)....you may be hearing about me on the news......


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## DustyKat (Jun 1, 2014)

I hope you hear from the GI soon DanceMom. :ghug: 

Oh my, I hope A is okay with things, bless her. :heart: 

Can’t family just be the most wonderful creatures at times…Not! :yfrown: 

In my thoughts, 

Dusty. xxx


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## Farmwife (Jun 1, 2014)

:hug: She's amazing. I hope you get answers soon. 

In my prayers.

Hugs


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## Maya142 (Jun 1, 2014)

A is so tough, she always amazes me! 
Hope you get some answers SOON:ghug:!


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## araceli (Jun 2, 2014)

Sending Hugs. Aloe vera (plant) worked good in my daughter's fissure.


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## CarolinAlaska (Jun 3, 2014)

I'm so sorry A has been suffering so.  Maybe the discharge came from the rash?  Broken/burned skin can ooze yellow serum...  Just a thought anyway.  I hope she is doing better now...


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## DanceMom (Jun 3, 2014)

No major changes with A.  Her bottom looks normal (not red) and she says it only hurts a little (probably that stupid fissure).  She's been hanging tough and staying at school all day and then dancing all evening.  Unfortunately she seems to have lost 2 pounds but I'm hopeful that she'll regain it soon.

GI emailed me back and wanted labs done today.  Something to compare to the labs she had when coming off the mtx 6 weeks ago.  She doesn't read well in labs so I expect them to be normal.  Also ordered fecal calp and alpha-1 antitrypsin which will give a better picture of what is going on.


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## DanceMom (Jun 4, 2014)

Most of the labs are back.  CRP looks great, as always.  Globulin is low again - 1.8 (2.0-3.8).  WBCs are the lowest they've ever been - 3.7 (4.5-13.5).  They're usually in the 3.8-4.2 range.  She's not on any immunosupressant medication (and hasn't been for 6 weeks), so any ideas why the WBC is so low?

Going to collect the stool samples tonight.  That's always fun....lol.


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## Farmwife (Jun 4, 2014)

Grace's WBC has always been low even before humira and mtx.
Hers is around 3.2. 
What  her lymphocytes at?

No doctor has seemed concerned other than to say she will have a hard time fighting infection.


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## DanceMom (Jun 4, 2014)

Lymphocytes and Neutrophils are both 1676 (low average).  Her stool test in February showed a moderate amount of WBC.  So it seems she is pooping them out?  Has Grace had her stool tested for WBC?


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## Farmwife (Jun 4, 2014)

Yes she always has some in the stool but not enough that docs get worried.
Plus Grace has seen a pediatric Urologist before who said,
 unless she's having multiple UTI's that having  a low'ish number of WBC's in the stool  is not a concern.

Her labs (blood) say her Lymphocytes are 1.0..................... Ref 2.0-8.0


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## DanceMom (Jun 4, 2014)

Perhaps Grace's doctors are not concerned because she already has a diagnosis.  Things are still up in the air for A.  On medication - globulin is usually normal and WBCs are around 4.0.  Off medication - globulin is always low and WBCs drop.

She'll have another CBC next week when we have the immune labs done.  We will probably get stool and immune results around the same time.  Hopefully we can get some answers!!


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## Farmwife (Jun 4, 2014)

I hope she gets answers. Hugs to you both.


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## DustyKat (Jun 6, 2014)

What do the docs say about the WBC? 

Dusty. xxx


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## DanceMom (Jun 6, 2014)

Dusty - They believe it is a sign of a deficient immune system.  That, coupled with the consistently low IgG is what prompted further immune testing.  We are scheduled to get those labs done next week.  If it turns out not to be an immune deficiency then I'm not sure what is causing the low WBCs.  For now, the Rheumo just puts "chronic leukopenia" on all of her paperwork.


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## DustyKat (Jun 6, 2014)

Out of all the causes that would be what I would think too, or with the weight loss is there some sort of malabsorption going on?? 

Dusty. xxx


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## DanceMom (Jun 6, 2014)

Just collected the last of the stool samples! Of course the lab is closed for the weekend so we now have a freezer full of poo! Lol This was some of the nastiest stuff I've ever bottled up. It had a very distinct smell, I just couldn't quite place it. And the consistency was that of melting ice cream. I thought I'd read someone here say that solid stool was better for a fecal calp but we are long past that point. Hopefully we still get accurate results! 

A looks run down. You can see it in her face and lack of energy. We have a busy weekend, but things should slow down next week and she can rest. Okay, off to PT!


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## DanceMom (Jun 11, 2014)

All stool samples have been turned in!  So far we know that she doesn't have c-diff (didn't think she did) but we're still waiting on the others to come in.  Overall, A seems to be doing better and I think the freedom of our summer schedule has been helpful.  She's getting more sleep and isn't exposed to all of those school germs.

Speaking of school, I received an email today stating that A was being placed on attendance probation next school year.  All 21 of her absences and 5 tardies were excused with a physician or lab note, so obviously I had quite a bit to say in my email to the AP.  I'm sure I'll get a generic half-hearted response.

We are getting her immunity labs done tomorrow and I have mixed emotions that I'm sure you can relate to.  While I'd love for these labs to lead to a diagnosis of some sort so we can stop the endless testing and begin treatment, it feels so wrong to *wish* for anything but perfect labs.  Just trying to take things one day at a time and appreciate that for today she feels well!


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## gotumtum (Jun 12, 2014)

Hi Dance Mom

I thought of a few things to add to your 'investigations list'

Pink stool could mean clay coloured + blood
Clay coloured stools can mean bile duct / gallbladder / liver probs

also here is a good link to a description of immune deficiency types

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/

Good luck with your little one - there is nothing worse than having a sick child


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## DustyKat (Jun 12, 2014)

*MEGA HUGS* to you DanceMom. When you are Limbo Land as you are…well…all we want for our kids is for them to be healthy and when we see the evidence everyday in front of our faces that they aren’t, then we all we want is answers. If there is one thing you can rejoice in DanceMom it is that you are normal! :lol: 

Ugh, just what you don’t need at the start of the school break! A tardy letter from the school! Idiots! :yfrown: 

Good luck with the tests mum. I hope they bring good solid answers for your lass. :ghug:

Dusty. xxx


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## DanceMom (Jun 12, 2014)

Today was not a great day.  We went to the Children's Hospital (not our hospital) to have the immune labs done.  It took over an hour of back-and-forth with the insurance company before they would agree to draw the blood.  The phlebotomist had trouble getting blood and this has been an issue lately.  She said she could feel scar tissue and recommended using the other arm from now on.  I was so paranoid that they wouldn't organize the labs properly and they wouldn't make it to Cincinnati Children's on time.  They reassured me that things were fine and sent us on our way.  Because we were near the coast we made a quick beach trip, had lunch, then headed home.  As we pulled into our neighborhood the lab called and said we needed to come back - they forgot to draw a vial of blood.  Ugh!  So we made the hour and 1/2 trip back in a hurry because FedEx was scheduled to come in 2 hours.  We had a different phlebotomist this time and used the opposite arm.  She also had trouble and said A had scar tissue.  What the heck?!?  Are her veins really shot??  So this time I refused to leave until the lab manager confirmed that they had everything they needed and I watched them package it up myself.  I'm sure they thought I was neurotic.  So now we wait....and hope and pray the vials make it across the country in time.  I think I've developed control issues, lol.

But seriously, could A really have scar tissue?  She's been a difficult stick for the last few months and is sore for days after a draw.  She now gets a pretty horrific bruise and swelling in the area where it was drawn.  She used to always be an easy stick, sometimes had a mild bruise, and only occasionally was sore for a few hours afterward.  Maybe we've just had some crappy phlebotomists lately??


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## Maya142 (Jun 12, 2014)

M has scar tissue too and sometimes it takes a couple sticks to get blood. M has figured out which veins work best and will usually point the phlebotomist to the one that usually works -- not sure what we'll do when she has scar tissue there! The nurses who do her Remicade infusion said scar tissue is quite normal in these kids -- who knows how many sticks they have over the years!

If it's painful for A now, could you use numbing cream or something?

Hope you get some good answers soon.


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## Tesscorm (Jun 12, 2014)

Also make sure she's well hydrated days she needs needles...  I'm sure I've read that being well hydrated 'plumps up' the veins and makes it easier to stick.  Maybe someone who knows for sure can confirm??


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## DanceMom (Jun 12, 2014)

We start loading up on fluids a few days before a scheduled blood draw.  She also wears long sleeves until they are ready to draw because we were told that would make her an easier stick.  We've even used heat packs before!  None of that seems to help though.  We've used Emla cream before but it doesn't eliminate the soreness that persists after the draw (probably because it bruises and swells anyway).  She sits like a champ while they are digging around, I just worry that we are damaging her veins and she's only 9!


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## DustyKat (Jun 13, 2014)

Hydration does help veins Tesscorm, as does warmth but for some people it just doesn’t seem to be enough.  I am one of those people, I just have next to no superficial veins. 

The phlebotomist makes a world of difference, the one I had yesterday was fab. The more they dig around the sorer it will be and the more likely they blow a vein and you end up with swelling and bruising. 

Matt has had copious amounts of blood draws but as far as I know they don’t have any issues drawing blood from him (mind you some of the phlebotomist’s are hopeless and this is with a kid that has veins popping out all over the place!) and scar tissue has never been mentioned, he normally comes home with only one bandaid. Unfortunately though, it is not uncommon for a vein to become scarred and collapse if it is used repeatedly and when veins are difficult to locate I wouldn’t be surprised if they are using the same one over and over again. :ghug:

What an absolute balls up with the tests! Little wonder you, me and no doubt the everyone else here is a control freak! 
You know what, I am so much of a control freak that if I am in town, about 30 minutes away, and get take away I check the bags before I leave! In my defence, you would be amazed how many times the order is missing something! :lol: 

I hope the tests all arrive at their destination mum and in the right condition! 

Dusty. xxx


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## kimmidwife (Jun 14, 2014)

Dance mom,
I hope you guys get the results quickly and finally have some answers. I know how frustrating the being in limbo is.


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## DanceMom (Jun 15, 2014)

Stool tests were all normal. I will never understand this. She's been feeling good (other than joint pain) for the last week or so, so I guess we'll just be thankful for that. We still have some immune labs to finish up the beginning of July. Other than that I think we'll just hang out and pretend things are normal.


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## araceli (Jun 16, 2014)

DanceMom. I really hope things get better soon.
They have hard time getting blood from my daughter so they do get it from her hand instead of her arm. It is more painful, I think, but she says it is the same. They always use a baby needle.


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## DanceMom (Jun 22, 2014)

Thought I'd give a little update.....

A had her dance rehearsals/recitals this weekend.  That means long days, staying up late, and a crowded backstage area with germs (2 pukers and 1 with explosive diarrhea...OMG...).  A has been very tired (understandably) and her joints have flared back up.  The diarrhea is also making a comeback.  She has 2 days to rest before heading to Nationals.  I'm hoping things settle down in that time. 

On a positive note, she was awarded a full tuition scholarship for next season!  The studio owner recognized her on stage for her hard work and dedication despite her illness, and said she was an inspiration and role model for the entire team.  Proud Mommy moment!!

Hoping to get the immune lab results this week.  I plan on emailing the Rheumo nurse tomorrow.  They have a tendency to sit on results and not share.


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## Farmwife (Jun 25, 2014)

Awwww, I'm so proud for her. CONGRUDUALATIONS!


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## Imerald (Jun 26, 2014)

That's great news and a help for sure. Congrats!!


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


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## DanceMom (Jun 26, 2014)

Our Rheumo nurse is a joke.  After my email on Monday I got no response (even though I could see that she received it).  I wrote back this morning requesting her lab results only to be told they weren't in.  When I wrote back saying that the lab paperwork stated they would be back in 9-10 days the results conveniently came in the mail 30 minutes later.  Whatever.  All are normal (according to her....) and the B-cell panel is still pending.  She's supposed to be mailing me orders for the pneumococcal lab which we'll have done next week.

A seems to be feeling okay other than joint pain and the weakness/burning in her arms and legs.  Her first National competition didn't go so well and she took the loss pretty hard.  We're leaving for her second National competition tomorrow and hopefully it goes better!


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## Maya142 (Jun 26, 2014)

What happens next if the lab results are normal?:hug:
For joint pain, is something like voltaren gel an option? M uses it on her joints when her IBD is flaring instead of taking NSAIDs.

Sending hugs and good luck! Hope you get some answers soon!


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## DanceMom (Jun 27, 2014)

The immunological labs she had done were rather complicated and I'm not sure the Rheumo expected them to be abnormal.  From what I could gather at the appointment, he wanted these done in case her pneumococcal turned out normal then maybe we'd have something else to go on for the immune deficiency route.  At this point it is looking like she could possibly have CVID, but if that's not the case maybe it is a more rare immune deficiency that could be detected by these labs.  I got the bill today and it is nearly $5000 for 4 immune labs and a CBC (should be covered by insurance).

For joint pain we ice the joint, use a cream like Icy Hot, wrap it for activity, and Tramadol if it becomes unbearable.  Our PT said she did not feel that therapy was helping A and felt that her pain wouldn't decrease until the underlying problem was detected and treated.  I'll discuss that with the Rheumo at our next appointment.  I'm not sure if the PT and Rheumo communicate because we used a local hospital for therapy.  At this point her joints are our biggest issue.


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## DanceMom (Jun 27, 2014)

* In re-reading the Rheumo nurse's email I got a huge kick out of what it said.  She let me know that A's "testes" were normal and not to worry!  Glad to know that my daughter's "testes" are okay! lol*


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## Imerald (Jun 27, 2014)

So maybe that's been the problem all along, the testes you were unaware that were ok.  There's always one that makes it a little more "fun". 


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


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## araceli (Jun 30, 2014)

:rof::rof::rof::rof::rof:


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## my little penguin (Jul 1, 2014)

http://www.hindawi.com/journals/ijr/2011/175973/

Found this and thought of A


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## DanceMom (Jul 2, 2014)

Finally got the Pneumococcal lab done today.  Had to battle with the Rheumo nurse all morning to get the order since she has to be told 3 times before she does something.  A was an easy stick and we're both very grateful for that!

Unfortunately she's been battling explosive diarrhea, stomach pain, and now a low-grade fever.  She just seems tired and run-down.  She's also complaining that her tongue and roof of her mouth hurt but they appear normal.

Quick question....do you notice that your kids require more sleep than their peers?  After spending the last week with the other dance families at Nationals I realize that A's friends don't sleep as much as she does.  She will easily sleep 12+ hours if I don't wake her and still be tired during the day.  I try to make sure she routinely gets 9-10 hours of sleep but her friends seem to function okay on 7-8.  My other daughter (she's 7) is our early-bird and she usually sleeps about 8-9.  Maybe I'm over-analyzing this, and I realize all kids are different, I just feel like she sleeps an awful lot and still seems tired.


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## Tesscorm (Jul 2, 2014)

Glad you got the test done!!

Fatigue is a common symptom...One of S's early symptoms was coming home after school and sleeping.  In hindsight, it's so obvious something was wrong but, at the time, was easy to explain away (teen boy, new demanding phys.ed. program, hockey play-offs, etc.)

It's also a sign of anemia (with or without crohns) - S was anemic by the time he was diagnosed (I was also anemic a while back and, also, found myself taking 'unusual' naps that I somehow justified??).  

But, with malabsorption issues, I imagine there are likely other deficiencies that could also cause fatigue.

Having said that, my kids are night and day when it comes to sleep habits, even now that S's crohns seems to be in remission.  So...  cud just be A's habits as well.  Try to think back to before she was showing any signs of sickness - do you remember if she tended to sleep more than others then?
:ghug:


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## Maya142 (Jul 2, 2014)

My daughter definitely needs more sleep - around 10 hours and most of her friends can get away with 7-8 (though I think 9 hours are recommended for teens). Given how awful she feels most of the time, I kind of expect her to need more sleep -- I imagine she gets exhausted just from pain/diarrhea etc.

Just for comparison, her older sister whose arthritis is well controlled, is like a completely normal college student -- up at all hours of the night and probably gets 6 hours of sleep during the semester.

Really sorry to hear A isn't doing well. Hoping you guys will get some answers SOON!


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## Farmwife (Jul 2, 2014)

Grace sleeps a lot during flares. I know she's feeling better when she doesn't need to nap.
How long till you get her lab results back?


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## DanceMom (Jul 2, 2014)

In the past this lab had taken anywhere from 3-7 days to come back.  Her Rheumo appointment is next Thursday so hopefully we'll have the results by then.  If she isn't protected for at least 70% of the serotypes that should be enough for the Rheumo to make a diagnosis (her IgG and WBC are also consistently low).  If she is protected for at least 70% of the serotypes then we may move forward with the CTA to test for vasculitis.  With the low fecal calp I think Crohn's is off the table for now.


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## Sascot (Jul 2, 2014)

Glad they got the blood okay. Tiredness is a big problem for us. Although my son doesn't sleep more but is a lot more tired than his friends and can't do as much activity


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## DanceMom (Jul 9, 2014)

Our Rheumo appointment is tomorrow and I'm very anxious about it.  My biggest concern is that after all this we still may not have answers.

A seems to be battling a cold but is otherwise okay.  She still complains about her back and she sleeps an awful lot.  I think the Elavil helps quite a bit because her stomach aches are minor and short-lived.  She still has a visible fissure but it doesn't bother her every day.  She's managing, but of course I'd like to see her full of energy and without any pain like she was when she was on Prednisone (my frenemy).

Now to keep my mind busy until our appointment.....lol


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## Maya142 (Jul 9, 2014)

Sending so much good luck! Hope you guys get some answers and treatment for A:hug:


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## araceli (Jul 10, 2014)

I hope your appointment goes great.


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## kimmidwife (Jul 10, 2014)

Hope you guys finally get some answers today!!!!


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