# Second Opinion!



## DanceMom (Nov 5, 2013)

We leave for Atlanta in a few hours!  A is pretty excited about our "girls only road trip" and I've promised to make it as fun as it can possibly be.  She has her white cell scan tomorrow morning at 7:30.  The nurse warned that the IV is very large and painful and said to be sure she is well hydrated.  I hope it goes well!  She has her GI consult tomorrow afternoon so I guess we'll know more after that.

Luckily she is feeling better than she was over the weekend and the diarrhea has really slowed down.  I'll keep everyone posted!


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## Clash (Nov 5, 2013)

Have a safe trip and I hope you find some answers and relief for your baby girl!!


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## Sascot (Nov 5, 2013)

Good luck, hope it goes well!


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## upsetmom (Nov 5, 2013)

Good luck!


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## Tesscorm (Nov 5, 2013)

Good luck!

Hope the iv isn't too painful!   Perhaps you can use some Emla cream to numb the area before the iv???


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## Jmrogers4 (Nov 5, 2013)

Have a safe and as fun as possible trip.  Good Luck!


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## lost hubby (Nov 5, 2013)

have fun


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## araceli (Nov 5, 2013)

Best wishes. Have a wonderful trip.


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## my little penguin (Nov 5, 2013)

Good luck and update us when you can


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## Maya142 (Nov 5, 2013)

Hope the iv isn't too bad! Good luck!


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## spingirl (Nov 5, 2013)

Good luck!


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## DanceMom (Nov 6, 2013)

Made it to Egleston! Wow this place is big! She had her emla cream and we are waiting to get the IV.  Hoping all goes well!


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## kimmidwife (Nov 6, 2013)

Thinking of you! Can't wait to hear everything,


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## Niks (Nov 6, 2013)

Good Luck!!  :goodluck:   xxx


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## DanceMom (Nov 6, 2013)

We are exhausted! The scan went well. She almost passed out after they took the blood but they were good with her and were quick to have her lie down and drink. We have to go back in the morning to finish them. I don't think they saw much.
Love the doctor! He was so kind to pick us up in Nuclear Medicine, walk us to clinic, then walk us back to Nuclear Medicine. He basically just told us he wants to check out the small bowel every way imaginable to get the best picture of what could be going on. He did say that he feels Pentasa is basically useless in small bowel disease. 
So tomorrow we finish the white cell scan, do pill cam, and meet with Rheumatology. Busy day!


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## momoftwinboys (Nov 6, 2013)

Thanks for the update. Wishing you guys well!


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## DanceMom (Nov 7, 2013)

Finishing her scan and waiting on insurance approval for the pill cam. Our insurance is ridiculous. Love the staff here though! They just gave us free tix to the Children's Museum!


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## DanceMom (Nov 7, 2013)

Just wanted to add - the tech just saw something on the scan! Right side I believe. So looks like several more pics to get good images. Maybe something is finally black & white! Literally!


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## kimmidwife (Nov 7, 2013)

Glad to hear they are so nice and being so very thorough. Can't wait to hear everything!


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## DanceMom (Nov 7, 2013)

We didn't get to do the pill cam today.  Insurance didn't approve the procedure until 1 PM and by then the computer was broken.  We are scheduled for tomorrow at 9:30 AM and hopefully things will be fixed by then.  Frustrating, but just making the best of it.

We did see the Rheumatologist and he was great.  He said he agrees with the Crohn's diagnosis but he knows that GI doctors like to have more solid proof.  He does not believe she has arthritis, just joint pains.  He did prescribe a medication to take as needed to help with pain.  

We see the GI again tomorrow morning, first thing.  I imagine we'll get the results of the white cell scan and maybe his preliminary thoughts regarding the IBD diagnosis.


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## DanceMom (Nov 8, 2013)

30 more minutes until we can turn this pill cam equipment in and head home. Surprised that she hasn't passed it yet honestly, but she hasn't eaten much since we've been here.

Met with one of the GIs this morning. He said her white cell scan was normal which basically means if she does have Crohn's it would be considered mild. He can't be sure she actually has Crohn's at this point but he said there is more evidence for it than against it. I suppose they will make their definite decision next week. He did say that most young kids with Crohn's are difficult to diagnose and the more obvious and severe cases are usually seen in the teenage years.  We just want definite answers and a plan but it looks like we will be waiting a bit longer for that.


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## ronroush7 (Nov 8, 2013)

The best to you all.   Keep us informed.


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## DanceMom (Nov 9, 2013)

Passed the pill cam this morning!  Now just waiting on the results. ....


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## spingirl (Nov 9, 2013)

Praying here in Boston for you!


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## kimmidwife (Nov 9, 2013)

Hope you get the results quickly!!!! Glad the pill cam is out with out any problems.


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## CarolinAlaska (Nov 10, 2013)

Sounds like she had a good workup.  What was the white cell screen about?  I've not heard of that...  It was the pill cam that clinched the diagnosis for Jae...  Waiting for it to be read took a long time, however.


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## DanceMom (Nov 10, 2013)

The white cell scan is used to detect inflammation anywhere in the body but mild inflammation usually isn't picked up. They take out 2 oz of blood, separate the white blood cells, inject them with a radioactive material, then put them back into your body. They should go to areas of inflammation/infection. On the first day of scans A's cells stayed in the liver/spleen which is normal. On day 2 they could be seen in her colon but they felt that it was normal excretion and not true inflammation.  It was an interesting test. The GI did say that it's a possibility that the Pentasa is treating her just enough to make it difficult for these tests to locate the disease. They may advise to stop all treatment and repeat tests over the summer.


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## CrohnsKidMom (Nov 10, 2013)

My son also had the white blood cell scan.  I think it was the first real test he had when they thought he had Crohn's.  They do it in nuclear medicine and it's sometimes called an indium scan.  My son's small intestines lit up like a light bulb on the screen.  It was a valuable test for us.


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## Niks (Nov 10, 2013)

Fingers crossed that you get some solid answers.  xxxx


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## araceli (Nov 11, 2013)

Hopefully you get answers soon.


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## kimmidwife (Nov 11, 2013)

Dance mom,
That is interesting. I never heard of it before. Thanks for telling us about it.


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## kimmidwife (Nov 11, 2013)

I am just reading a little about this WBC or indium scan. It sounds very interesting. I wonder why it is not being used more often?


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## DanceMom (Nov 22, 2013)

kimmidwife - The doctor explained to us that it is a very expensive and time consuming test so they only use it in difficult to diagnose cases.  He said they usually don't find much when they use it (because most of the cases tend to be mild in terms of inflammation, making them the difficult ones) but hope to get lucky every now and then.  It wasn't at all helpful for us but it was a neat experience and may prove useful in the future.

We still haven't heard back with a final response from our team in Atlanta.  I called on Tuesday and was told I'd hear from someone on Wednesday or Thursday to schedule a phone conference to discuss the findings.  It is Friday and no phone call.  I know they are a large and busy facility but we are used to our GI emailing and calling frequently and promptly.  

A was well the last 2 days but was feeling pretty awful this morning.  She actually had a tantrum (crying and kicking) when I made her get up for school this morning.  She has never done that and she loves school.  I'm pretty sure I saw tiny amounts of blood in her stool last night and one new EN spot this morning.  If this isn't IBD then someone sure as heck better figure out what it is and give her some treatment before I lose it!  She's gained 2 lbs and less than an inch in the last year and that just isn't acceptable.  Her teacher emailed a class pic today and besides one other child (who was a preemie twin and is still taller than A) she comes up to the shoulders of the next shortest child in the class.  A whole head shorter than everyone in the class except one other child!!  And I'm 5'9 and my husband is 6'3 so it isn't like it is just in her genes to be short!

Okay, vent done.....for now.  Hoping my baby feels better when I pick her up from school today.


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## DanceMom (Nov 22, 2013)

Shortly after my last update I got a call from the school nurse.  A was in the clinic crying. She had a fever and a headache/stomachache.  I hate seeing her so miserable. 

On the way to pick her up the nurse from Atlanta called. She said one GI finished his report and the other was almost done. She will email them to me and then schedule a phone conference so I can ask questions.  Hopefully I'll get their reports on Monday!


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## Mehita (Nov 22, 2013)

Breaks my heart that she's so miserable while you're waiting. Can't they help her now? Something? Anything?


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## my little penguin (Nov 22, 2013)

Hope they come up with a plan for her soon.
even if they don't know what to call it.


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## Brian'sMom (Nov 22, 2013)

I'm so happy they called you today. Its been a long wait. On page one, you mentioned the doctor said Pentasa might be working just enough to not see inflammation and maybe to stop medication and retest in the summer. Did I read that right? That doesn't sound like a good idea. To let inflammation brew to just 'see' it on a test?
We've never had a pill cam... when my son is flaring his terminal ileum swells up. I am so interested in hearing what your results are. I pray for answers for you and a good solid plan to get your sweet girl in remission.


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## my little penguin (Nov 22, 2013)

^^ yeah that
on ds 's most recent scope
GI said it would be nice to go longer without humira to "see" 
all the areas affected but the risks were too high and being able to get the inflammation under control again could be a really issue
( DS had to stop the humira due to a possible allergic reaction - he is back on it now  )


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## DanceMom (Nov 22, 2013)

Personally I think it is torture to make a child suffer because you want concrete indisputable evidence that she has IBD.  We know that Prednisone worked for her and I'd gladly go back to that if I could. But our GI says we are in a holding pattern and won't make any decisions until we hear back on the second opinion. The whole thing disgusts me.  I'm beginning to feel like we were passed off then pushed aside. Maybe I'll feel differently in the morning but right now I'm dealing with a febrile child despite Tylenol who wants to eat but is afraid to because she says she feels like her insides are exploding when she does.


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## Maya142 (Nov 22, 2013)

Your poor poor girl. I would want to change GIs! I can't even imagine how much she is suffering. I hope you hear on Monday.


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## Mehita (Nov 22, 2013)

Don't hesitate to take her to the ER if you need to, DanceMom. If that fever gets too high or she's in a lot of pain. No child should be like that, especially when you know pred worked before. 

And really, what can starting her on pred harm? At least with the IBD meds you're looking at weeks to months before they kick in anyway and pred usually gets kids to a good place so the IBD meds can takeover. 

I think I'm too attached to your daughter!


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## my little penguin (Nov 22, 2013)

Ok just my mommy 2 cents...not a doc
A lot of things get better with pred that are not Ibd.
But pred can mask a lot of things making it harder to get the right dx.
Since she failed 6-mp the next level of drugs may do more harm than good if its not Ibd.
Not that biologics are bad but certain biologics ( ie enbrel ) work great for one condition but not for the next . Enbrel is not helpful in crohn's but works wonders for psorasis .

So knowing the why can be very important since it determines the what comes next and how do we treat it.

I ask not saying she be in pain .
Or they shouldn't be treating her .
I just think that might be some of the reasoning .
You might want to ask your Gi .

As far as other things
Did they rule out auto immune disorders ?
Celiac
Bechets 
Periodic fever disorder 

The list goes on and on
Make sure the GI tells you what it's not and why...
That can help moving forward .


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## my little penguin (Nov 22, 2013)

One more thing concerning her growth
Will she drink EEN?
I know one old forum member had her daughter on
En overnight 
Her dd grew normally even active disease due to the en + food


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## DanceMom (Nov 23, 2013)

I absolutely love our GI and I really liked the ones we met in Atlanta too. They are amazing doctors.  But it has taken over 2 weeks to get any kind of feedback about a diagnosis/treatment and meanwhile I have a very sick child with a fever of 102 who is rapidly losing weight and now has bloody diarrhea again.  I'm understandably frustrated. 

We see the Rheumy Tuesday and he's been given the task of ruling out other autoimmune conditions.  I'm interested in what he has to say for sure. She did have a few abnormal labs but I'm not sure how significant they are.

A won't drink Pediasure or Boost (we've tried) and when the GI mentioned giving up food for shakes she looked at him and in a very serious tone said, "I have done everything you doctors want me to do without complaining but I will not give up food."  It would be a fight for sure. Perhaps our GI whom she really likes and trusts could convince her but I don't know.


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## my little penguin (Nov 23, 2013)

when you say you tried shakes did you give her choice as in do you want corn or broccoli ?
or was it the doc says this is medicine you will have to take it -how it goes in ng tube  or mouth and what kind is your choice.
I don't mean to be mean but honesty no child willingly wants to go without food.
mine cried the entire time while drinking his first couple of shakes  even the kids boost/pedisure.
but we treated it like medicine period
he knew it was going in even if it took all day or by tube if needed.
without it he would be very short and underweight (25%)
because of it he is at the 71%

kids with chronic illness need to have choices about medical stuff 
we aim for time, what comes first etc...

when you treat it like food then it becomes an issue.
It is a medicine nothing more nothing less -you just happen to drink it.


I hope rhuemo can shed some light on what is going on with her .
the fevers and other stuff could be autoimmune???


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## DanceMom (Nov 23, 2013)

MLP - My daughter is almost 9. I'm not with her every second of every day. If she isn't on board with exclusive formula then I can't force her. I can hold her down for blood draws, sedate her for procedures, and haul her kicking and screaming to appointments. But if she doesn't want to drink the shakes and forego food I can't force her.  That really isn't up for debate here.


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## QueenGothel (Nov 23, 2013)

I am totally with MLP here on this one.  Even if you have to slowly introduce the shakes mixing them with ice cream to make them taste better and then slowly reducing the amount of ice cream this is what I did.  Now my DD drinks shakes and she loves them like it is dessert.  

There are kids in way worse situations and trust me when I say you would be thankful for EEN if you have went through the IBD wringer like many have.  By no means am I saying your DDs disease isn't scary because you never know when a terrible flare might come.  EEN doesn't work for many things like pred does.  

What you don't want is to over use pred when it is not needed. Trust me there is a window of time it will work and you don't want her to become refractory to it.  It no longer helps my DD and no drugs ever helped her.  There are way worse things out there beyond not eating food.  If the flare gets bad enough it can lead to no food and TPN and plenty of other things you never want to do as a parent... Suppositories, Enemas, and Surgery. I have live and barely survived the nightmare. 

Just don't say never to EEN it is one of the easier treatments to deal with.


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## Maya142 (Nov 23, 2013)

Could you do supplemental EN? My daughter and her GI have a deal - if she can't keep her weight up and drink 3 shakes a day she has to get an NG tube. She doesn't like Peptamen very much but got used to it, and definitely does not want an NG tube. Her GI is very strict about this - no arguing, because M can't afford to lose any weight.
Of course, it's helpful that she's a teenage girl and doesn't like when she loses weight and her clothes become too baggy...


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## ronroush7 (Nov 23, 2013)

Hope she is better soon.

 2


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## Farmwife (Nov 23, 2013)

Have you thought about smoothies?
Lots of yummy ways to make them and for my son I try to sneak in every calorie I can.

How is she now?


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## DanceMom (Nov 23, 2013)

Hmmmm....well I guess I should just be thankful my daughter isn't as sick as other kids and isn't in as bad of a situation. I should probably tell her that she's making a big deal out of nothing and that she should be thankful she doesn't need surgery because those kids have it so much worse.  While I'm telling her that I'll also tell her to be thankful she hasn't been through the IBD ringer because apparently it is a pissing contest and she's losing. 

Not only has EEN not been formally recommended to us but I don't have to debate or defend our choices when it comes to treatment.  My daughter has been through plenty and all with a smile on her face. That's pretty much all I have to say about that.


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## QueenGothel (Nov 23, 2013)

Actually she is winning.  I am not debating I am just trying to support you. Sorry if I offended you in any way.  It is not a pissing match, I just at one time said no to EEN as well and things spiraled and have not stopped since.  I am just trying to reel you into the reality that I have survived.


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## DanceMom (Nov 23, 2013)

Farmwife - A is a great eater and gets plenty of calories. Last night she was afraid to eat but that doesn't happen very often. This morning she's been up and eating toast but upon weighing realized she lost another pound. Very discouraging. Her temp is 101.5 with Tylenol and she's been laying in bed all day.  Wish I could say she feels so much better but thank you for asking.


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## my little penguin (Nov 23, 2013)

First i wanted to offer more hugs
I was NOT trying to create a debate or judge your decisions
I was TRYING to give you the same info I found here more than 2 years ( almost 3) ago.
That EN or even EEN is HARD period  but can be done with any child.
Either orally or NG tube
 I was under the impression at the time ( way back in the beginning) it would be easy
just tell your kid to drink it. ( that didn't happen)
I was also under the impression that I could 
just get the kiddo to eat enough calories and he would grow ( that didn't happen either).

When there is inflammation the body works hard to fight it.
This increases the amount of calories a kid needs to maintain their weight .
Processing food and breaking it down takes some energy as well.
This means that for most kids with IBD - they are not going to be able to physically eat enough calories even when things are looking good.

I have met many parents IRL and on forums whose children are 
thin and small due to inflammatory disease ( not just IBD),
most are upset about it even if their kiddo is doing better medically and on strong drugs
but doing EN is NOT easy and some have to make multiple attempts at it.

So no judgement - just wanted you to know others have been in your shoes here at one point or another and most were able to get to the point of getting their child to drink
but it was not something they did without a lot of hard work.


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## DanceMom (Nov 23, 2013)

I'm not opposed to EEN. I'm truly not. But if I can't convince A that it will help her and she should do it then it isn't going to happen. It isn't something I can hold her down and enforce if she doesn't agree to it. I'm sorry I snapped but protecting my baby is something I feel like I'm forced to do all the time now. 

Our local Rheumy requested A's biopsy slides for the EN on her leg so they could be reviewed by our hospital's pathologist. I just received that report. He agreed that it could be EN or could be small cell vasculitis. He recommended another biopsy be done.  He gets my middle finger. My daughter is not a science experiment! The Rheumy we saw in Atlanta said he didn't even need a biopsy to diagnose it as EN. It was "classic EN" as he put it.  This pathology review makes me question her biopsies from her scopes done at our hospital. 

And her temp is now 102.5 with Tylenol and an ice pack. We are trying Ibuprofen as a last resort. I know it isn't typically recommended but nothing else is working. She's drinking pretty good and eating some. She's only had diarrhea once so I'm not sure what's going on.


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## my little penguin (Nov 23, 2013)

Were her biopsy slides re- reviewed in Atlanta?
That is typical for a second opinion.
Does her ped or on call GI know her temp is that high with Tylenol?


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## QueenGothel (Nov 23, 2013)

I hope A feels better soon and this passes without needing a doctors intervention. Hang in there!


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## Sudsy (Nov 23, 2013)

102.5 with tylenol and an ice pack and bloody stools is, in my opinion (and I am a RN) time to call your doctor and get packed to go to the ER.  

I hope your daughter feels better soon.  Hang in there.


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## ronroush7 (Nov 23, 2013)

I agree with the above post.  Hope she is better soon.


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## kimmidwife (Nov 23, 2013)

Hope she feels better soon. Have you called the doctor? What are they saying?


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## DanceMom (Nov 24, 2013)

Her fever broke during the night. Hopefully today will be a better day.


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## ronroush7 (Nov 24, 2013)

That is great news.


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## momoftwinboys (Nov 24, 2013)

Happy to hear the fever broke. Here's to a better day!

Dancemom,  my son has never done EEN. He has supplemented with kids boost at different times. In our case we strongly suggested it but did not force it but gave him the info and choice with incentives. We had a talk about how crohns makes it hard for the body to get the nutrients and calories it needs.  Liquid nutrition was easier for the body to absorb. We talked about how much we hated crohns and when he did these types of supplemental nutrition drinks he was saying "F@(K YOU CROHNS" I am going to fight you. I am not advocating swearing to my child but desparate times call for desparate measures. He took up the challenge to supplement and we paid him per drink. He made more money for the boost and less for the carnation instant breakfast. He gained a little weight and as he felt better he was less inclined to drink them. 
Fast forward to march of this year ... I shared the successes of tesscorm's son as a hockey player gaining muscle mass and jack, jmrogers son had with growth and weight when he did his supplemental drinks and asked if he wanted to try. He suggested 3 boosts with mint chip icecream a day and asked me to contact the school so he could have one there.  We were all amazed at the transformation over that month. It was so noticeable, people were commenting how good he looked. People started having trouble telling him and his twin apart. He dropped down the shakes as he got to a good weight.  He averages 4 to 5 shakes a week and will request them when he is burning lots of calories like cross country or swim team. 
I admire MLP's no nonsense approach to the shakes and her son reaps the benefits. We all know our kids (and ourselves) and sometimes we have to tailor our approach given those involved and the circumstances. 
Like the other moms above,  I am only sharing our experience and the benefits we saw. I continued to talk to my son about successes that some were having and he ultimately made the decision for himself.  As crohns is such an individual journey in symptoms and treatments responses, there is no one size fits all. I have no doubt you and your daughter will figure out together what works for your family.  I am sharing our journey because it helped my son and we benefitted from others who shared theirs.


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## Sudsy (Nov 24, 2013)

Glad to hear that the fever broke.  Hopefully she is on the path to recovery!


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## CarolinAlaska (Nov 24, 2013)

How scary to have fever for so long and not know the source.  What all testing outside of GI did they do to workup the fever?  U/A?  CBC?  Rule out appendicitis?  Chest xray?  Blood cultures?  I pray she starts feeling better now and that the fever doesn't come back.  We've got to see your sweet girl happy and dancing again!


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## DanceMom (Nov 24, 2013)

Fever came back shortly after breakfast but has stayed low-grade. She's been up and playing all day but has been very cranky/emotional so I know she doesn't feel great. Her doctors are aware of the fevers and the nurse recorded one our last day in Atlanta. Hoping to get some more answers tomorrow.


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## ronroush7 (Nov 24, 2013)

I hope she is better soon.


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## DanceMom (Nov 25, 2013)

Finally got our second opinion recommendations. While he does think she has Crohn's it has yet to be proven objectively and therefore he recommends stopping the Pentasa and monitoring her with labs.  Guess our holidays will be miserable while we wait and watch our daughter get more sick and lose enough weight to be considered FTT again so that someone somewhere will do something to help her.  She's almost 9, is 47 in and 49 lbs so we shouldn't have too far to go.


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## Maya142 (Nov 25, 2013)

I'm so sorry to hear this DanceMom. Poor, poor A. I have no advice but hopefully someone who has been in the same situation will. It seems crazy to let a little girl get worse and worse. Hasn't she suffered enough?!


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## Farmwife (Nov 25, 2013)

Yes I've been there and now we're back there......kind of.

I'm actually going to make the call today to her current GI and talk about what the Mayo GI said.
Now I'm worried the GI will change his mind back to leaving her undiagnosed until which disease wins in this horrible game.

Make sure you get a plan from school. If the GI"s want to wait and see you don't want A to suffer at school without a plan for leniency in place.

Hugs


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## Jmrogers4 (Nov 25, 2013)

Glad the fever broke, I've debated weighing in on the EN as you know your child and what you both are willing to do.  I will say this,  Yes Jack has had success with it after many failures.  He just refused to do it and it was not until he was older 13 that we were finally able to reason and lay down the law and it was really his GI who convinced him and basically told him it was either he do this and had the choice of NG tube or drink it or they would put him in the hospital as he was at dangerous levels for other complications to his body due to his weight.  
I can't believe you have to watch your daughter get worse in order to help her get better.  It just makes me mad for you both.


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## my little penguin (Nov 25, 2013)

More hugs ...
I know this is hard for you .
A friend of mine went through something similar with her child.
It was very frustrating .
In the end her child did not have crohn's but had behcets .
So it was a good thing but it was miserable until they got to a true dx .

How did the Rheumo appt go?


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## DanceMom (Nov 25, 2013)

I think what frustrates me the most is that 3 GIs have said they think she has Crohn's but they don't have sufficient evidence.  Two of 4 scopes have shown inflammation, an MRI showed inflammation in the small bowel, a pill cam showed extremely rapid transit time and at least one ulcer, a biopsy has proven erythema nodosum, she has the genetic markers for Crohn's according to Prometheus Labs, we have pictures of bloody diarrhea for the past year, and she's been FTT for at least 80% of her life.  Something is obviously wrong.  Telling me what you think it is but then advising against treatment isn't exactly helpful to our situation.

We see the Rheumy first thing in the morning and I have a phone conference scheduled with the GI from Atlanta for tomorrow afternoon.  I really don't have anything to say to him but I'll be polite and let him say whatever he feels compelled to say.  

A's fever is gone for now and she's back to her happy self.  Her diarrhea is now yellow (as opposed to green like usual) so I'm not sure what that means but I'm sure it can be easily explained away.  All I can do is document everything and wait.  I have to wait long enough that there is indisputable evidence that she has IBD or some other autoimmune disorder, but not so long that she requires surgery or I'm deemed negligent for not getting her proper medical care.  I guess it is a game of timing but it is a game we're tired of playing.


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## Momto2girls (Nov 25, 2013)

I'm totally frustrated in the same way, too. And in the meantime I feel like I m crazy. Like I should just be glad she's not diagnosed with anything and go on our merry way. Though it seems with her list of issues it should for sure be a no brainer. I think GI stuff is the hardest stuff, honestly. And I honestly do not think they know enough about early Crohn's. It is so GAH -- I feel your pain.


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## DanceMom (Nov 25, 2013)

I've been reviewing her most recent labs to make a list of questions for the Rheumy.  A has low CD3 as well as low CD19.  I'm really having trouble researching this because everything reads a little too scientific for my understanding.  Is anyone able to explain this to me?  I'd like to go in fairly knowledgeable so I can ask the right questions and feel like the appointment was worthwhile.


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## Momto2girls (Nov 25, 2013)

I think those test results could be indicative of sarcoidosis? Erythema nodosum is a part of it, too. Other than that, I'm not sure besides general immune system dysfunction and possible infection?


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## Niks (Nov 25, 2013)

I feel your pain too.  I really hope you get some solid answers soon.  It is certainly not better not having a diagnosis..  Sending hugs  :ghug::ghug::ghug:  xx


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## DanceMom (Nov 25, 2013)

The Rheumy did mention sarcoidosis at her initial appointment.  But her ACE levels came back normal so I don't think that is it.  She does have asthma though and that seems to be flaring the last few weeks.  Her asthma has never responded well to medications and it does seem to correlate with her GI symptoms.  I've always felt that her asthma wasn't true asthma but instead a symptom of something else.


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## DanceMom (Nov 26, 2013)

Well, we had a great Rheumatology appointment.  Still no clear answers, but a great appointment nonetheless.  First he explained the differing opinions on the biopsy from her leg.  The pathologist at our hospital agrees that it does look like EN but there is also small cell vasculitis present.  So, she could have small cell vasculitis that resembles EN or she could have both EN and the vasculitis.  Very confusing.

The vasculitis thing brings up a whole array of disorders that she could potentially have and he's ordering more labs to check for those things.  He said we'd discuss potential biopsies once we saw the results of those labs.  I was good with not discussing that today!

He did review the last set of labs with me and said there is a possibility that she has some sort of immune deficiency.  He's repeating some of the previous labs to see if things are still low and also checking antibodies for the 2 boosters she just had.  That means we're waiting 3 weeks to complete any of these labs.

In the meantime I'm to continue charting her temp and symptoms and also research methotrexate.  He and the GI agreed that mtx would be a good choice for A if she was found to have Crohn's, vasculitis, or both.  He recommended the injectable form because it would be absorbed better and have less side effects.  I would love to hear from anyone with good or bad experiences with mtx, particularly injectable form!

Overall I'm feeling more hopeful after this appointment.  I don't feel like we're being hung out to dry and I agree that waiting things out a little bit and running more tests may be our best bet.  It seems that if the Rheumy doesn't think she has an immune deficiency or some vasculitis disorder then we're back to having just plain old IBD (that can't be proved! haha!).  Regardless, it looks like mtx is probably in the not so distant future.


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## my little penguin (Nov 26, 2013)

DS was on MTX last summer by injection.
He tried that right after 6-mp.
For him GI started him on pred at the same time as MTX so the MTX could build up in his system while he weaned from the pred.
MTX takes about 6- 8 weeks to work.
DS never was able to wean off the pred while on MTX.
Every time we tried and he got below 20 mg of pred he would get a vasculitis rash going up both legs from his feet.
needless to say that was when the rheum became involved and suggested remicade after an increase in MTX did not improve the situation.

MTX injections basically gave DS flu like symptoms for two days.
He would get the injection on friday afternoon ( which they will teach you how to give BTW  ).
Saturday morning he would barely move and get tried easily ( again his crohn's was not under control so might not have been the meds.). Headaches and nausea.
He also bruised very easily while on MTX ( as in shoe laces from a three legged race left a big bruise.)

Make sure doc gives you folic acid to take this helps combat the side effects. It can be raised if there are still side effects so don't be afraid to ask.

Also ask for the EMLA spray - much easier than the creme no waiting to inject.
Just wipe the spot clean spray and inject.
much easier for the kid.

Glad you had a good appt.


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## Farmwife (Nov 26, 2013)

Glad for the good appointment. This drug also might be in Grace's furture.
I hope all goes well.

HUGS


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## Maya142 (Nov 26, 2013)

MY daughter's experience was basically the same as MLP's son - we gave it on Friday, folic acid every day, and she would feel nauseous and tired the day after. In her case, mtx made all the difference - she was on Humira at the time, which wasn't really helping, and somehow once we added mtx, we saw a miraculous change. 
However, for my daughter the side effects became so severe after 5 months or so (in bed two days with severe nausea and dizziness, zofran didn't help), that we discontinued it. 
She was on it for a couple months this year (much lower dose) but the same thing started happening about 4 months after we started. Her rheumatologist said some kids just can't tolerate it. It did really help though with both Crohn's symptoms and joint pain when she was on it!
The injection itself was a not a big deal at all - small needle and my daughter said it didn't hurt or sting going in. She even learned to give it to herself.
Good luck! Hope it gives A the relief she deserves!


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## Sascot (Nov 27, 2013)

Hope you managed to get the fever under control. Hope things are getting better


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## Clash (Nov 27, 2013)

Hope her fever has gone down and it sounds like the rheumy appt went well. I hope you find answers soon. No help here on MTX shots, C has always done oral. Hugs.


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## kimmidwife (Nov 27, 2013)

Caitlyn was on MTX for 20 months. She did pretty well on it. Most doctors won't let kids stay on it longer then two years. The shots weren't bad a lot less painful then humira.


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## Gmama (Nov 28, 2013)

Don't know if this helps, LJ has not tried it but I am on MTX and it has been a wonder drug for me. I take the folic acid daily (like others have said) and the rhumo adjusted that dose based on my side effects. At first I did feel a bit nauseous and my hair was falling out more than normal but upping the folic acid helped with all of that. I get labs done every other month to keep a close watch on things & the only thing that I have a problem with is that my skin doesn't heal as fast as I think it should, but this may be part of getting older as well...40 something is different than 20 something!:lol:
I was having severe joint pain but never tested positive for any true condition & it wasn't until I found this rhumo that said although you do not have a true RA, that is the treatment you need. I thought that was interesting seeing that I had seen tons of dr's over a period of 6 years, having pain and lots of joint damage along the way.
Best wishes DanceMom! I know how frustrating this is and when it's your kid it's 100 times worse.


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## CrohnsKidMom (Nov 28, 2013)

Hi DanceMom, My son has been on MTX injections since Jun, after we found he could not tolerate Imuran.  He was doing his Pred taper at the time, and we found it took a good 8 wks for the MTX to kick in.  Bloodwork was done biweekly, but now just bimonthly.  It has worked well for my son.  He was tired the first few wks, but seems ok now and has not had any nausea.  Do get a prescription for an anti-nausea med just in case.  My son also takes folic acid every day except injection day.  I got a crash course in injections 101 from the GI nurse, and had a nurse friend supervise me the first time, but the injecting has gone well... although my son may tell a different story!  All the best to you!


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## DanceMom (Nov 29, 2013)

Thank you all for sharing your experiences with mtx. We meet with our GI on Wednesday so I'm anxious to hear his opinions. We are desperate for A to feel better and waiting is difficult. 

A hasn't had fever or diarrhea in a few days but has been extremely irritable. The perianal rash is back and seems to be spreading and today about 10 new EN popped up on her arms and legs. She hasn't gotten that many at once in months. Makes me wonder if the Pentasa was calming things a bit and now we are without that protection. Not that it was extremely helpful but it seemed to soothe things just a little.


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## Farmwife (Nov 30, 2013)

I'm so sorry you guys have to go through this. Believe me, I've been there with Grace. All though she never had en like your A.

Hugs to you and yours


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## DanceMom (Dec 1, 2013)

Checked the mail this evening and received a letter from the Rheumy we saw in Atlanta.  He stated that he felt that A did have IBD despite the clear white cell scan (he didn't have the pill cam results when he wrote the letter).  He felt that her symptoms and previous tests were enough to base a diagnosis on.  He said that her joint pains were an EIM of IBD and not chronic arthritis and also recommended a medication to use PRN.

I think that everyone is in agreement that it sounds like A has IBD.  I think the tricky part is proving that she has IBD because so many other conditions can present similarly.  I'm extremely anxious for her next set of labs (still have another 2 1/2 weeks) that will provide more info about a possible autoimmune disorder or immune deficiency.

She had a good day today.  No new EN and the perianal rash is a bit better.  Even her ankle felt better.  Unfortunately I woke up with a sore throat and headache so I'm hoping A doesn't end up catching what I have!  We have a busy week and I have no time to be sick!


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## Brian'sMom (Dec 1, 2013)

We did oral mtx and are now doing the injections. My son didn't have side effects with either one. No nausea and didn't seem tired. We've done Humira and now on Cimzia. The MTX is by far the easiest!! I'm the scaredy cat and I am doing the mtx injection!! The syringe is so little and my husbands hands are to big and he seems clumsy with this one. So he does the Cimzia. Its a thicker liquid. The mtx is watery, doesn't burn and the needle is so tiny. I dart in the needle and push the plunger all at once. My son has no problem with the rate. Its so quick and easy. So far we haven't seen good results (cramps still pretty bad) but I've heard on this forum that it takes awhile to kick in. We did shot 5 last night.
Hope this helps. Don't fret about this one...its not hard or painful


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## Mehita (Dec 2, 2013)

Brian'sMom - why did you switch from oral mtx to injections?


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## crohnsinct (Dec 2, 2013)

O is on low dose MTX in addition to her Remicade.  She takes 10mg weekly. Her inflammation numbers had crept up and she was having quite a bit of joint pain.  The GI says he added the MTX to help get the psoriasis under control but later added, "...and it will help with the joint pain and getting inflammation down".  He was right.  Took 12 weeks but joint pain gone and inflammation markers good ever since.  Psoriasis laughs at the mtx though.  He had suggested injections as the nausea etc are less that way but O wouldn't have it.  She takes Mtx on Mondays and feels fine.  No nausea, headache, fatigue or anything.  Just lost some hair but that could have been due to the psoriasis also so who knows.  

Good Luck!


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## Brian'sMom (Dec 2, 2013)

Mehita said:


> Brian'sMom - why did you switch from oral mtx to injections?


The mayo dr wanted injections. He said he thought it would absorb better and quicker. He likes its results better. All that being said....we did labs yesterday. SED 41 and CRP 4.5 Two weeks ago sed was 52 and Crp 2.4. Nurse said today it looks like tnf's arent working for us. I've been studying hard on stem cell transplant. Mayo doc mentioned removing terminal ileum if meds don't work...but how will that resolve the huge ulceration in his sigmoid colon and rectum? The terminial ileum has gone up and down....was ok just last march. The rectum area has been flaring for over a year.


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## my little penguin (Dec 2, 2013)

Brian'smom
what about what vtfamily son is on stelera?

not a tnf blocker so ???
Here__>
http://www.crohnsforum.com/showthread.php?t=48348
http://www.crohnsforum.com/wiki/Stelara-Ustekinumab


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## Brian'sMom (Dec 2, 2013)

I'll look into that. Thanks MLP


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## DanceMom (Dec 3, 2013)

Just a vent today....

Last night at dance two different moms commented to me how great A looks now that she has lost weight again.  I didn't really know what to say to that.  Yes, she's lost the moon face and round tummy the high doses of Prednisone gave her but her weight doesn't look as healthy as it did on the low doses of Prednisone.  Her face has that sunken in look now (I'm sure you know what I mean!) and her legs look like sticks.  It has been such a struggle for her to gain and maintain weight (and she isn't growing any taller either!) and I was taken aback to hear someone say she looked "so much better now."  Even her dance teacher commented that she didn't look well and looked too skinny again so I know I'm not going crazy.  Are parents just looking for something to say that they feel is positive or are people's views on body types and healthy weights that distorted?

A is 9 next month and fluctuates between 48 and 49 lbs.....


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## Maya142 (Dec 3, 2013)

I can't believe parents say that! Perhaps since she's a dancer they expect her to be extra skinny?
 My girls played soccer while growing up, and M (my younger daughter who was recently diagnosed with Crohn's) was always small and skinny, but no one thought it was a good thing, since she got knocked down and pushed around so much because of it!
How is A feeling?


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## crohnsinct (Dec 3, 2013)

I think it is a combination of them trying to find something positive but also distorted body image these days.  I was 115 pounds when I got pregnant with O.  I suffered horrible morning sickness and vomitted for 7 months straight with all of my pregnancies.  I ended up only gaining 7 pounds with her and she was an 8 pound baby.  So I was released from the hospital weighing 96 pounds and was 5' 6".  By the time I got back to work I was maybe 103 pounds and my clothes hung on me something awful.  I thought I looked like death but I got so many compliments on how great I looked.


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## kimmidwife (Dec 3, 2013)

That is really terrible! I agree that people do have distorted body images. I really hope they were just trying to be nice. Otherwise that is just really sad!


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## Mehita (Dec 3, 2013)

How tall is she, DanceMom? My 9 year old (boy) is 65 pounds and about 4'6" and he's skin and bone (but also very healthy). It gives me perspective how little A really is. Wow.


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## my little penguin (Dec 3, 2013)

Yeah that ^^^^
Wow my 9 year old is 4'8" and 80 lbs .

People used to tell DS all the time "boy look how much you've grown"
At the beginning of the school year.
This was when he hadn't grown at all
Just something you sometimes say to kids


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## DanceMom (Dec 3, 2013)

She's 3'11" and has been that for a year. Maybe grew a few centimeters. She was up to 56 lbs at her heaviest. She's ridiculously small and now my 6 year old daughter's friends are starting to become taller than her.  Her doctor has always been more concerned about her height than her weight. 

Overall she's doing okay right now. The diarrhea has really slowed and many times the stool is normal. Almost always green or yellow though. No new EN in a few days and the perianal rash has cleared. Still getting stomachaches and joint pains but nothing too severe. We see the GI tomorrow so I'm anxious to hear what he has to say.


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## DanceMom (Dec 3, 2013)

I noticed at dance tonight that A's cheeks looked a little rosy but I figured maybe she was hot (even though she usually doesn't get flushed when hot).  When we got home and I looked at her closer it looked like her cheeks and bridge of her nose had been sunburned and the skin feels scaly.  Pretty sure it wasn't like that yesterday.  She's not on any medication right now and hasn't had any new foods or soaps.  Anyone had this type of rash before?

(It isn't cold or windy here so I don't think it is from the weather.)


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## Clash (Dec 3, 2013)

I would update the doc about it first thing, there is the malar rash or butterfly rash that occurs on the face and across the bridge of the nose.


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## my little penguin (Dec 3, 2013)

Google roscea rash images


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## Maya142 (Dec 3, 2013)

Butterfly rash like in Lupus? My daughter had one while on Humira (that was drug-induced Lupus though).
Or could it be eczema? My (older) daughter has it on her cheeks.


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## Brian'sMom (Dec 3, 2013)

DanceMom said:


> Just a vent today....
> 
> Last night at dance two different moms commented to me how great A looks now that she has lost weight again.  I didn't really know what to say to that.  Yes, she's lost the moon face and round tummy the high doses of Prednisone gave her but her weight doesn't look as healthy as it did on the low doses of Prednisone.  Her face has that sunken in look now (I'm sure you know what I mean!) and her legs look like sticks.  It has been such a struggle for her to gain and maintain weight (and she isn't growing any taller either!) and I was taken aback to hear someone say she looked "so much better now."  Even her dance teacher commented that she didn't look well and looked too skinny again so I know I'm not going crazy.  Are parents just looking for something to say that they feel is positive or are people's views on body types and healthy weights that distorted?
> 
> A is 9 next month and fluctuates between 48 and 49 lbs.....




I sooo wish people wouldn't always "report what they see". I always think it's rude (or just bad manners) to comment on someone's body unless it's a simple; "You look great!"


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## DanceMom (Dec 3, 2013)

It looks most like the butterfly rash but can that just pop up suddenly?  There really aren't bumps, just scaly skin.  

Actually, I just remembered that last night when I put her to bed I noticed that one cheek had a bright red spot.  I asked her if she got hit in the face and she said no.  Today the rash isn't bright, more like a dull red but it has spread to the nose and other cheek.  I took a picture but it doesn't show well in the pic.


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## Farmwife (Dec 3, 2013)

Call your doc if it gets worse.
Can you look on the inside of her mouth?
Grace had something similar and when I look i*nside *she had open ulcers but it almost blended in until I looked closer.


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## Maya142 (Dec 3, 2013)

My daughter's butterfly rash came on very suddenly - she was playing soccer and when she came home she had that rash. I'd never seen it before and had no idea what it was, so I called her rheumatologist.


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## DanceMom (Dec 3, 2013)

She's in bed now but she didn't complain about her mouth bothering her.  We see the GI tomorrow but his response is usually "see the dermatologist".  This rash doesn't itch or bother her in any way and I'd say she's usually pretty sensitive about things like that.


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## Maya142 (Dec 3, 2013)

My daughter's rash didn't itch either. Since A is undiagnosed, it might be worth getting a picture of the rash (if you can get a good one) to show her rheumatologist, especially since (if I remember correctly), the doctors think she has some sort of autoimmune disorder.


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## DanceMom (Dec 4, 2013)

Interestingly enough....the rash looks better today.  I think this girl just likes keeping me on my toes.

We met with the GI today and have a tentative plan in place.  As far as a diagnosis goes he's leaving that in the Rheumy's hands for now.  They both agree she has an immune condition of some sort, but whether or not that is IBD is still up in the air.  Apparently these conditions can mimic each other and for whatever reason an accurate diagnosis has been next to impossible.  Luckily these conditions can be treated with the same medications so we're going with Methotrexate.

Our GI wants us to start with the injectable form because that is the most likely to be absorbed and the least likely to have side effects.  A isn't excited because she doesn't think I'm "qualified" to give shots, lol.  We are going to finish our immune work-up before starting though which could be weeks or months.  We're not in a huge rush because she's maintaining okay for now.  Both Rheumy and GI agree that it isn't wise to leave her unmedicated.  Her symptoms definitely affect her quality of life and we don't want any further problems.

We discussed her growth and my concerns with that.  He wasn't too concerned about her weight (10th %ile I believe) but said her height is something to be watched closely (3rd %ile).  If the mtx proves to be helpful but she still isn't growing he'd like to try EN via NG or g-tube.  He talked with A about it for awhile, even showed her a doll with a g-tube (which she called "creepy").  She's definitely not sold on the idea but hopefully it won't come to that.

So A may or may not have IBD but this place feels like home so I'll be hanging around!


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## my little penguin (Dec 4, 2013)

Glad you have a plan .
Hope you can start Mtx quickly and it works.


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## Brian'sMom (Dec 5, 2013)

When Brian was little his symptoms weren't much... He had diarrhea for 9 months after an illness and antibiotic. Then he was on mild sulfasalazine and flagyl...but it seemed to increase the diarrhea so I weaned him off the medication and did a gluten free diet and he got formed stools. Back then I thought ..formed, well then he's good and . I think now that he went into a bit of remission but probably had a constant underlying inflammation because his height and weight were definitely different than the other kids at school.  I chose to ignore it... "I'm small so that's why he is small" and he was only 6yrs old at the time. He went unmedicated too. In fourth grade the bottom fell out... it seemed like he went from mild to severe in a matter of months. I'm only saying this because its good you are agreeing that height and weight are an important symptom. Glad you have a plan. And we've found out the NG tube is actually a relief and comfort to us and my son. I don't have to nag him about eating anymore. I know he's getting the calories he needs all while sleeping. (And the EN formula has all kinds of vitamins and minerals so its like they're eating all the healthy things they probably wouldn't be at the 'dinner table'!)


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## Sascot (Dec 5, 2013)

Good luck for the Methotrexate , hope it works well for her


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## DanceMom (Dec 7, 2013)

Stupid diarrhea is back. It hadn't been an issue for the last week or two but of course it strikes at the most inconvenient of times - when A is representing her dance team in the Christmas parade after party gathering. I had to run (literally) her to the bathroom 3 times in a 3 hour period. She was so aggravated at the situation and told me she was ready to start the mtx as soon as possible. The joint pains aren't letting up either and she just wants to dance without all the problems.


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## DustyKat (Dec 7, 2013)

Oh no, poor love.  :ghug: 

I so hope the Methotrexate turns things around for her. :goodluck: 

Thinking of you both. :heart:

Dusty. xxx


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## Farmwife (Dec 7, 2013)

When do you think she's going to start it?

I hope things settle for her.

HUGS


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## kimmidwife (Dec 7, 2013)

Dance mom,
Has she ever seen an endocrinologist? With her lack of growth I think it would be worthwhile getting a consult. I know your doctor is not overly concerned about it at this point but like another thread mentioned it is important to check into growth issues as early as possible for more time to treat them prior to puberty.


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## DanceMom (Dec 8, 2013)

No, we haven't seen an endocrinologist though it was suggested by our first GI. I'm not sure I want to add another doctor into the mix right now. Maybe after her diagnosis is secure. 

The Rheumy called today but unfortunately I missed his call. His message said that he reviewed the pathology slides from her leg biopsy himself and wanted to discuss some things. I'm wondering if they did determine it was vasculitis. Hopefully I'll be able to speak with him tomorrow.

And her fever is back - 100.7. Says she feels okay though so hopefully this passes quickly.


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## my little penguin (Dec 8, 2013)

Sorry her fever is back 
I hate missing doc calls because that is when you really need to talk to them


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## DanceMom (Dec 8, 2013)

When I put her to bed I checked her legs....3 more EN spots. Perianal rash is back too. I'm starting to notice that these three things typically go hand in hand.


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## ronroush7 (Dec 8, 2013)

Thoughts and prayers


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## my little penguin (Dec 8, 2013)

That screams all sorta of autoimmune flags .
DS has vasculitis as an extra part of his disease - crohn's PLUS a whole lot more ( to be later defined  )


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## Sascot (Dec 9, 2013)

Sorry to hear that, thinking of you.


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## DanceMom (Dec 9, 2013)

She still has a fever...more EN spots (now on one arms as well as both legs)...perianal rash...and severe knee pain.  Her joint pains are typically mild but now she is all but refusing to walk because her knee is hurting her so badly.  We've iced, elevated, and given ibuprofen but it doesn't seem to be helping.  

And her newest symptom - black stool.  I'm assuming it is blood we're seeing but maybe not.  We've only seen bright or dark red blood before but now that her transit time seems to be more normal I suppose black blood is possible.

I emailed the rheumy to update him.  Hopefully I'll hear back from him tomorrow.


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## Farmwife (Dec 9, 2013)

Have you called the GI?
Black blood means higher up bleeding.

Has she started any new meds? How about iron pills?


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## DanceMom (Dec 9, 2013)

No call to the GI.  At the last appointment he let me know that the Rheumy was in charge now so I'm going through him first.  Hoping he'll want to do her labs this week instead of next.

She's not taking any medications now.  Just her kiddie multi-vitamin (that she's been on for months) and ibuprofen occasionally.  The Rheumy advised that ibuprofen was fine to give and the GI agreed.


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## Jmrogers4 (Dec 9, 2013)

Oh Dancemom I'm so sorry she if feeling so bad.  I hope the Rhuemy gets labs done sooner rather than later for her.


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## Sudsy (Dec 9, 2013)

Time to call rheumatologist on call???  It's not obnoxiously late and she is really having concerning symptoms....


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## DanceMom (Dec 9, 2013)

Fever broke with second dose of ibuprofen and she fell asleep soon afterward.  I think the fever made her more uncomfortable than she realized.  She had one more BM before bed and it was green with a small amount of red blood.  So we're back to our usual green and red stool....in the spirit of Christmas and all.

I'm hoping that she wakes in the morning and feels better.  If not she can stay home and rest while I wait to hear back from the Rheumy.  These EN are getting out of control and I'm wondering if the large one on the side of her knee is what's causing her knee pain.  She has 3 on one leg, 7 on the other, and 1 on her arm.  So frustrating!


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## Jmrogers4 (Dec 9, 2013)

DanceMom said:


> So we're back to our usual green and red stool....in the spirit of Christmas and all.


Leave it to us IBD moms to make a joke about green and red poop.  I was eating peanuts and spit them all over my computer.  Jack is busting up as well :rof:


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## DanceMom (Dec 11, 2013)

I've emailed and called but still no response from the Rheumo.  I'm trying not to be frustrated but I'd really like to know what he wanted to review regarding the pathology slides.

A is hanging in there.  Her knee is still bothering her but ibuprofen and exercise have helped some.  The fever is gone (for now) but the EN are taking over.  Her arms and legs look horrid.  Her GI symptoms are minimal which is an interesting change.


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## ronroush7 (Dec 11, 2013)

Sounds like you might need to look for another doctor.  Best yo you.

 2


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## DanceMom (Dec 11, 2013)

Definitely not changing doctors.  This Rheumy works very closely with A's GI and I think he may have us on track for good answers.  I'm just used to getting prompt responses so I'm a bit annoyed at the moment.  I think the GI has me spoiled. lol


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## ronroush7 (Dec 11, 2013)

Sorry.

 2


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## DanceMom (Dec 11, 2013)

No need to be sorry.  I'm just cranky.


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## my little penguin (Dec 11, 2013)

:ghug: Its hard when you want answers yesterday and the docs make you wait even longer.


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## kimmidwife (Dec 11, 2013)

Hope he gets back to you soon!!!!


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## Mehita (Dec 11, 2013)

Hang in there, DanceMom :ghug:


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## DanceMom (Dec 12, 2013)

Well, the nurse called to see what I wanted (I guess my email and phone message weren't clear enough? ) and said she'd leave a message for the doc. Still no call from him. Maybe tomorrow. 

A's ankles and knees hurt and I'm hesitant to keep giving ibuprofen. She's started having yellow diarrhea now, I guess so we can experience all colors of the rainbow. Fun times......


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## DanceMom (Dec 14, 2013)

I've pretty much given up on the Rheumy calling.  I guess I'll just wait until she has her labs done next week and start putting the pieces together myself.  Frustrating, but I guess knowing about the leg biopsy wouldn't really change our plan for the next few days anyway.

No new EN in a few days and no fever either.  Mostly just battling the joint pains - knees, ankles, wrists.  She's also complaining of a new spot on her foot.  I'm not sure if it would be considered her heel as it is up a little higher.  This is a stupid question, but is your heel only the bottom part or does it extend up the back of the foot?  Or is that considered the ankle? lol  Lord help us both!! lol


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## Johnnysmom (Dec 14, 2013)

Johnny had mysterious pains that seemed to move around from ankles, to wrists to feet, knees.  The Dr suggested it might be Chronic recurrent multifocal osteomyelitis.  It ended up going away when he went off the prednisone and got better so we never ended up getting the MRI.  If you look it up, it sounds like something most kids out grow.  It also could have been the joint pains associated with crohn's.  Our GI didn't think it was RA because Johnny's SED and CRP were normal and there was no redness or swelling.  And sometimes the pain was not in a joint.  It is best to talk to an Rheumatologist, but I agree they are very hard to get into!

I don't know if this helps or not but a lot of what you describe is very much like the endless weird, unexplainable stuff we experienced with Johnny.  It went away once his crohn's was under control. I hope you get some more answers soon.  It is a process, and very frustrating.  Sorry


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## my little penguin (Dec 14, 2013)

The more I read the heel can go back up the ankle.
I hate waiting we are in a watch and see mode here as well with joints.
The arthritis / joint stuff related to crohn's is better since it does less damage .
It tends to move from joint to joint and include muscles etc..,
DS has that for sure.
When it is in the same joints consistently without a break in between that is where we are so hence the watch and wait to see .

IMO rheumos are few so they tend to get large case loads .so as long as you have a plan keep calling but .... Realize it may take longer for a non urgent as in not going to change the treatment plan response kwim .

Good luck and keep us updated


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## Farmwife (Dec 14, 2013)

Grace has a spot on her heal also. :confused2oor girls.
Yes, MLP is right. I was told when the pains stay in the same joint it's more likely JRA.
To complicate things more, you can have BOTH.......IBD related arthritis and JRA.:yfaint:

I hope she improves. Is she able to keep up with her dance and school?


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## Maya142 (Dec 14, 2013)

If it's the back of her heel it could be enthesitis. Both my girls have heel pain, it's very common with the type of arthritis they have (spondyloarthropathy).
Hope she feels better soon!


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## Sascot (Dec 14, 2013)

Sorry to hear she is struggling and you still haven't heard back from the Rheumy.  Hope you can get some answers and help soon.


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## DustyKat (Dec 15, 2013)

The heel extends up the back of the foot to around the area you normally develop blisters with new shoes. Ouch! 

I so hope you soon have solid answers mum and your girl long overdue relief, bless her. :heart: 

Dusty. xxx


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## ronroush7 (Dec 15, 2013)

DustyKat said:


> The heel extends up the back of the foot to around the area you normally develop blisters with new shoes. Ouch!
> 
> I so hope you soon have solid answers mum and your girl long overdue relief, bless her. :heart:
> 
> Dusty. xxx


Amen

 2


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## CarolinAlaska (Dec 15, 2013)

I'm sorry you aren't getting answers or call backs.  When is your next appt with rheumy?


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## DanceMom (Dec 15, 2013)

Our next appointment isn't until the end of January. I'm hoping we don't have to wait that long to hear something! And it'd be nice to start the mtx before then too. I guess things will depend on her next set of labs. Praying for antibodies !


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## DanceMom (Dec 15, 2013)

Today my youngest is taking her turn at being sick. M has respiratory issues since birth but they've gotten better as she's gotten older and her airway grows. She's off all medications now but we do sinus rinses when she needs them. She woke up Friday morning and vomited lots of mucous so we started the rinses again. Yesterday she was fine. Today she has a horrible cough and is very short of breath. Possibly a fever (I'll check when she wakes from her nap). Hoping she doesn't spread this to A who has asthma as well!
To make things even worse my hubby thinks he has MRSA again. We should probably be quarantined! Lol


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## Farmwife (Dec 15, 2013)

Sorry to hear about the illness. I hope your other DD gets better soon
Is A on meds for her asthma year around? 
Grace is on 3 different kinds and it seems to help during illness.


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## DanceMom (Dec 15, 2013)

A used to be on Advair but she's maintaining without it okay for the time being. Her flare-ups seem to coincide with her GI symptoms and they don't respond well to medications. That's how she ended up on an adult dose of Advair. We give her Albuterol as needed but I'd do a daily inhaler again in a heartbeat if necessary. 

M has a more classic asthma and responded well to the very first inhaler we tried - QVar40. She was on it for years and just recently weaned.  Since weaning she's had a few colds and even croup but did okay. This is the first time I've been concerned about her in awhile. She definitely has some sort of virus (she does indeed have a fever) so I'm hoping we don't end up in the ER. She uses Xoponex as a rescue med and it isn't doing much right now.


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## Farmwife (Dec 15, 2013)

Grace does pulmacort (nebulizer) year around and during cold seasons she does it twice a day.
She and my son are also on Singular. That's the med that's made the biggest change allergy wise. Also their both on Certinez (Sp).  Of course Grace gets Albuterol when in a flare. And that's all just for Asthma!!! My goodness. lol


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## kimmidwife (Dec 15, 2013)

Singulair is a great maintenance drug for asthma. My son took it for allergies which he outgrew thank goodness. I hope your other daughter improves quickly and doesn't spread it.


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## my little penguin (Dec 15, 2013)

Singulair is used primarily for very mild intermittent asthma as monotherapy .
Typically Flovent or pulmocort is used for mild persistant asthma .
Singulair + ICS( Flovent or pulmocort )  or Advair is used for moderate to severe persistant asthma .
Similar to Ibd there is a step up program.

http://www.nhlbi.nih.gov/guidelines/asthma/asthsumm.pdf


Figure 12 page 41 ( PDF page 53 )list meds per condition .
DS takes meds year round to avoid flares during colds .
He was on high dose Advair . He is now on Flovent


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## DanceMom (Dec 15, 2013)

Both of my girls have been on Singulair at some point.  We discontinued it for A because it didn't seem to help.  We discontinued it for M when she outgrew her dairy allergy and QVar alone was enough.  A tried Flovent, QVar40, and QVar80 with Singulair without success.  The Advair was the only thing that helped.  Even Xoponex doesn't work for her and she needs Albuterol.  She's a tricky kid.

Fortunately M responds well to medications because she had an asthma attack this evening.  She's doing better now but I expect things to get worse again.  Looks like we may go back on the QVar to prevent this from happening again.  Ugh!


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## DanceMom (Dec 16, 2013)

Took M to the Pedi this morning. Her right lung is hyperinflated due to asthma. Bring on the Prednisone! Lol Luckily just a 3 day course so I think we'll survive. 

A has some large unexplained bruises (not EN) on her biceps and thighs. Anxious to get her labs done tomorrow!

Just want healthy kids for the holidays!


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## ronroush7 (Dec 16, 2013)

Prayers going your way.

 2


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## DustyKat (Dec 16, 2013)

Sending loads of luck and well wishes your way Dancemom that the holidays are indeed healthy ones. :ghug: 

Good luck with the labs!

Dusty. :heart:


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## DanceMom (Dec 20, 2013)

You know when you check your phone and see the the hospital has called twice, the latest being at 7:15 PM that something isn't right.  A had her team dance party last night and when I pulled my phone out and got the Rheumy's voicemail that he needed to talk to me and would be waiting at the hospital for me to return his call my heart sank.

Some of A's labs have come back.  She had extremely low levels of IgG and the Rheumy believes that her body may not be making antibodies.  We are still waiting on the antibody titers for pneumovax and tetanus to come back.  At this point she's been labeled as having "immune dysfunction" but after further testing that may change to "immune deficient".

She also has small cell vasculitis.  At this time we're unsure if that is caused by immune deficiency or a rheumatic disease.  IBD has not been completely ruled out either.  I'm super confused by this diagnosis and was told it is very rare in children (other than HSP and Kawasaki Disease which she does not have).  We can't treat the vasculitis until the immune testing is complete which the Rheumy admitted was risky.  He wants me to notify him immediately if she so much as catches a cold.

My head is spinning (and aching) right now and this is not at all what we were expecting.  My husband isn't dealing well and doesn't even want to talk about it.  Even the Rheumy didn't expect her IgG to be so low and had it not been for our GI he wouldn't have even tested it.  So we will definitely be starting mtx when testing is complete and possible therapy for immune deficiency as well.  You guys are like family now so I don't really want to leave this forum but it looks like we're probably not dealing with IBD.

To anyone with an undiagnosed child - please see a Rheumatologist/Immunologist ASAP!  I feel like we wasted 8 years seeing GI doctors.  Fortunately we found a great one who referred us or we would still be without answers.  So many things look like IBD and A had textbook symptoms.  

I'll update again when I know more.  Thank you all for your continued support!  We are taking A out for her 9th birthday tonight.  Having a nice dinner and then watching Cirque du Soleil La Nouba at Downtown Disney.  It's a surprise so she's going to be stoked! It will be nice to take my mind off of things for awhile.


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## Jmrogers4 (Dec 20, 2013)

Have fun tonight! and Happy Birthday A!
I don't know anything about immune dysfunction/deficient but I'm going to do some research as all these kids are like family. 
I hope for a solid treatment that allows her to dance the night away and feel great while doing it.
I don't think you need to leave us completely as you say we are like family and if you do I hope it is because you are all too busy enjoying life to take the time to come here.


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## Maya142 (Dec 20, 2013)

Really sorry to hear this but glad they're figuring things out. Keep us updated if you can, we'll be thinking of A!
Hope she enjoys her birthday!


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## Mehita (Dec 20, 2013)

My friend's son has this, or something very similar. He essentially doesn't have an immune system and is on antibiotics all the time, BUT he is living a normal life, growing, and happy. They just have to take precautions at home and school. It's a tough dx but manageable.

After you learn more, I can check to see if my friend is open to chatting with you. I know they are part of a support network and their son was dx'd very young so their experts now. Very sweet family.

HaPpY BiRTHdAy, A!!


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## DanceMom (Dec 20, 2013)

Been trying to research the small cell vasculitis today since we are confident that A does have that.  Seems like it can be caused by infections, IBD, and other autoimmune conditions.  Still waiting on her ANCA test to see if she has ANCA-Associated vasculitis.  The unknown is scary.  The idea of multiple diagnoses is scary.

I came across this article that I found very interesting. http://www.dailymail.co.uk/health/a...lood-vessel-disease-vasculitis-easy-miss.html
I think these diseases tend to be misdiagnosed, especially in kids, because they are rare and often present as other things (like Crohn's Disease).  I am just so thankful for a dedicated team of doctors that are doing their very best at figuring out the beautiful little puzzle that is A.

As for dance, A is doing a solo this year to "You are Good" by Nicole Nordeman.  It brings tears to my eyes every time she performs.  Such a perfect song for her.  When competition season starts (in February) I will post a link so those interested can watch her perform online.


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## Farmwife (Dec 20, 2013)

I looked up that story. Here's a clip............

*The condition often arises as a result of a secondary infection. Chronic inflammatory conditions such as rheumatoid arthritis, lupus and Crohn’s disease are often the underlying cause, but viral infections can also trigger vasculitis.

Read more: http://www.dailymail.co.uk/health/a...sease-vasculitis-easy-miss.html#ixzz2o2tPagyD 
Follow us: @MailOnline on Twitter | DailyMail on Facebook*

So do they think it's secondary? Have they considered JRA? If you want info on that I can get you some. Matter of fact theirs a JRA that has to do with the whole system.


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## DanceMom (Dec 20, 2013)

We aren't sure what is causing the vasculitis just yet.  The Rheumy mentioned a few things he is considering and hopefully the pending labs will shed more light on that.  She's had the cutaneous vasculitis (the reddish/purple lumps on her arms/legs) since she was about 2.  Nice to finally know exactly what it is.

In reading these online articles it seems that so many of these conditions overlap and things get really confusing quickly.  Okay, giving my reading a break for awhile so we can go and celebrate!  A doesn't officially turn 9 until January 7th but I think we all need some fun right now so we are partying it up a little early.


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## Farmwife (Dec 20, 2013)

Good, have a great time.

Hugs and Merry Christmas from Farmwife and little Farm Girl.


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## my little penguin (Dec 20, 2013)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585712/?report=classic


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## my little penguin (Dec 20, 2013)

Fwiw DS had vasculitis multiple times last summer ( believed to be secondary to Ibd).
It did not clear up with Mtx -kept getting worse once we tried to wean pred.
Remicade stopped it .

Good luck
Glad your Rheumo is on top if it.

Vasculitis was why DS went to see his Rheumo .


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## araceli (Dec 20, 2013)

So many things on your plate right know. I really don't know what to tell you. So many years we are looking for a DX that when we are close to one is scary. I hope everything turns to the best for you and your baby.


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## Catherine (Dec 21, 2013)

Sorry to hear of the new dx.

Paging Malgrave, I think they have some knowledge on the immune issues.

Thinking of you and yours:ghug::ghug:


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## Malgrave (Dec 21, 2013)

Thanks Catherine, here is a thread that could be useful for DanceMom:

http://www.crohnsforum.com/showthread.php?t=43355

I totally agree with DanceMom: All these little patients should see an immonologist ad well.


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## DanceMom (Dec 21, 2013)

I will definitely take the time to read through those links. I want to educate myself about the possibilities so that I feel prepared. My way of coping I guess. It is just a strange feeling to be convinced that your child has a disease (IBD) only to find out that they may have something entirely different and possibly even multiple different things. I feel like we're entering a whole new world that I know nothing about. 

We had a fabulous time celebrating last night! I know A wasn't feeling 100% though and walking around was difficult for her. But to hear her squeal and giggle at the show was just priceless.


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## Farmwife (Dec 21, 2013)

My heart goes out to you. 
Handling multiple diseases is hard both emotionally and mentally.
Believe it or not, I think leaning to deal with one dx helps you deal with the others.
It doesn't mean we like it.
The love of our kids keep us going.


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## Brian'sMom (Dec 22, 2013)

My brother is deficient in IgG. He is now 53 and living fine. He gets an infusion every month that puts IgG back into his blood. He's followed by an immunologist. It can run in families so this past summer I took DS to an immunologist to get him tested. (I had also read some of Malgrave's threads that immune deficiency can mimick ibd). The tests just confirmed that my son has crohns. I was actually hoping it was this instead of crohns because I see that my brother has lived pretty normal once he started treatment some 20 years ago.

I'm praying for you.


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## DanceMom (Dec 22, 2013)

A few more labs have come back now. On a positive note A's liver numbers are finally back in the normal range and so is her Alk Phos! Unfortunately, her globulin is still low and now her wbc are low too. She also has a low reticulocyte count. Not exactly sure what that means but I'm sure the doctor will clue me in soon. It seems like things are starting to unravel.......

And A's fever is back. She may have caught M's virus. Hoping she wakes up feeling better.


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## DanceMom (Dec 26, 2013)

We made it through Christmas without any major symptoms!  A does have some new lumps (apparently vasculitis) on her leg.  There are probably about 6-7, most of them being small.  This morning she's been complaining that she feels extremely hot and just doesn't feel well.  No fever and no specific symptoms (she just says "I feel sick").  I put an email in to the doctor so I'm hoping I get a response soon.  Anyone else ever experienced this overwhelming feeling of being hot?  She's taken all of her clothes off and is resting under a fan but says she feels like she is burning.


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## Mehita (Dec 26, 2013)

Do any of the things you've been looking into have hot flashes as symptoms?


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## DanceMom (Dec 26, 2013)

We aren't sure what is causing the vasculitis or what parts of her body it is affecting (other than the skin).  We are still waiting on the vaccine antibody labs to know if we're dealing with a true immune deficiency.  Researching "vasculitis" and "immune deficiency" gives some basic general information but since we don't have a specific diagnosis yet I don't have a lot to go on.

A frequently complains of being hot but not to the extent she's feeling today.  Usually she develops a fever soon after.  She's napping now (another sign that she doesn't feel well) so I'll see how she feels when she wakes.  If she's no better I'll call the Rheumy.  It is just so difficult to get a response from his office.....


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## Sascot (Dec 26, 2013)

Sorry to hear she isn't feeling great. Hope you get a call back soon. My son used to feel really hot on and off before diagnosis, strangely enough he didn't feel hot to touch.


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## DanceMom (Dec 27, 2013)

Lab results are still trickling in. Pneumococcal Serotypes look normal so that's great. She has low IgG but apparently can still make antibodies. Her ANA was negative so I'm assuming that rules out some autoimmune conditions. Still waiting on 2 more vaccine tests and ANCA.


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## DanceMom (Dec 27, 2013)

Doctor finally called! He feels that she made antibodies well and that the low IgG isn't an immediate problem. We will retest in 6 months. He wants to see her next week to reevaluate for arthritis and to reexamine her. At that time the nurse will teach me how to give mtx injections and we will also determine if steroids are necessary to induce remission. For now she is considered to have primary vasculitis but that diagnosis could change (so I won't get too comfortable with it, lol).


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## Farmwife (Dec 27, 2013)

Here's a web-site dissucing the different types of arthritis.
http://www.kidsgetarthritistoo.org/about-ja/the-basics/understanding-jia-2.php

Also I thought I read a paper that liked vasculitis to a certain JIA (also known as JRA).
When I have time I'll try to find it.


HUGS


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## Maya142 (Dec 27, 2013)

Good luck! The mtx shots aren't bad at all. Hope she starts feeling better soon.


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## my little penguin (Dec 27, 2013)

Good luck at your appt and a path forward
Mtx shots are unnerving to give at first but easy for the kiddo
If you don't make them decide the when
Just more shot done sorta thing


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## DanceMom (Dec 27, 2013)

Hospital pharmacy just called.  Mtx is only $8/month without insurance!  Unbelievable!  A's dose is .5 ml/week.  Does that sound about right?

We just watched a youtube video about mtx injections.  This lady self-injected in her stomach (which A let me know real quick was not an acceptable spot for her, lol).  A isn't afraid of the shot, just nervous about me being the one to give it, lol.  I promised her to put my big girl panties on (of course I'm nervous!) and do a good job.  I also promised ice cream afterwards!!  Haha!!

We also have a prescription for Mobic but we're holding off on that until it is decided if steroids are necessary.

Vasculitis....who would have thought.....


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## Maya142 (Dec 27, 2013)

My daughter loves Mobic! I hate that she has to take it but it really helps her with pain. It does make her nauseous though so we had to add Prevacid to protect her stomach.
Also, when she was on methotrexate I used to inject her in her thigh or arm. When she started to inject herself the nurse taught her to do it in her stomach, and she quickly realized that hurt less than her thigh or arm. I was surprised since she's so thin, but it worked so…
Ice cream is always a good idea, both for A and mom


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## Farmwife (Dec 27, 2013)

When I have given the shot, Grace laughs and says, is that it. 
We give the shot in her thigh. We alternate between legs.

Hugs


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## my little penguin (Dec 27, 2013)

We did thighs and back of arms for DS for Mtx.
Don't be surprised if some leaks out.
This can happen as well
Just have a paper towel ready since Mtx stains yellow .
DS didn't care about the shot either .


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## my little penguin (Dec 27, 2013)

Glad you have a dx now a and hopefully the Mtx will take care of the vasculitis for her .


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## my little penguin (Dec 28, 2013)

http://www.laboratoriosilesia.com/upfiles/sibi/D0207127.pdf


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## DanceMom (Dec 28, 2013)

A is ANA and ANCA negative, so as I'm reading about the different types of vasculitis none really seem to fit. She's just never a perfect fit for anything. I guess what I'm looking for is a specific name and not just a generic "systemic vasculitis". I want it to explain all of her symptoms, including her lack of growth. The only proof of vasculitis we have is of her skin and that doesn't explain much of anything. She's had multiple GI biopsies. Wouldn't that have picked up on vasculitis of the GI tract? 

I have a lot of questions for both doctors! In the meantime I'm satisfied with trying mtx since it is useful in IBD, JIA, and vasculitis which are all still very real possibilities. But a solid answer would be nice.


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## Sascot (Dec 28, 2013)

Good luck with the methotrexate! Hope learning to do the shots goes well.


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## Maya142 (Dec 28, 2013)

I keep forgetting to tell you DanceMom but we met a girl at our rheumatologist's office that was my daughter's age and was diagnosed first with vasculitis (at age 10) and then JIA (at age 12). She's taking methotrexate and Enbrel and doing fabulously.


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## my little penguin (Dec 28, 2013)

Hugs
Sorry to hear that you don't have easy answers but glad a tha anca was negative. 
Sometimes its nice to have a name for the disease .
The docs have a name for some but not all of what is going on with DS so I understand your frustration.


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## Niks (Dec 28, 2013)

Really hoping shots go well and they start working quickly.

Hugs xxx


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## DanceMom (Dec 29, 2013)

Tomorrow is a special day!  When we were fundraising for our Take Steps team we held a raffle for some pretty awesome prizes.  A good friend had a connection and was able to get Legoland tickets to raffle off.  Her connection wanted to be sure our family had a chance to go as well so she gave my friend 4 additional tickets to be given to us as a gift.  Our girls don't know but we're going tomorrow to spend some quality family time and just relax!  Can't wait!  We only live about 30 minutes from the park but we've never been.

A has felt fairly well the last few days (despite the new lumps and even a stooling accident!) but I've noticed something that concerns me a little.  She seems to be getting some pretty nasty bruises for no reason.  Last week it was her upper arm and thighs, today it is her lower back near her spine.  I would normally attribute it to dance or gym but she's on break right now and I've watched her practice at home and she didn't injure herself.  She does have low wbc - 4.0 (4.5-13.5) and her rbc are on the lower end of normal - 4.07 (4-5.20).  Platelets are normal.  Do her counts explain the bruising?  Could this be the vasculitis presenting in a new way?


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## Catherine (Dec 29, 2013)

Bruising can be a side effect of some medications.

When I mentioned unexplained bruises to Sarah's GI, she mentioned the possibility of testing for clotting factors.  We didn't go any further with testing as the bruising went away.


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## my little penguin (Dec 29, 2013)

We tested clotting factor on DS due to vasculitis and another te for surgery
Both times normal 
Also had easy bruising around the same time


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## DanceMom (Dec 29, 2013)

She isn't on any medications right now (just started taking folic acid last night to prepare for mtx).  She stopped taking Pentasa mid-November and stopped Prednisone late September.

Looking back at her labs there has been a steady decline in wbc and rbc since August.
WBC: 8.8, 7.4, 6.5, 4.8, 4.0
RBC: 4.68, 4.53, 4.37, 4.14, 4.07
Platelets seem to range between 250-300 (norm is 140-400) but were 224 in October and 219 now.  Still very normal but trending down as well.

I realize that her numbers aren't alarmingly low but the pattern does concern me.  Am I overreacting?  At least being on mtx the doctor will have to order labs regularly so this can be monitored.


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## Mehita (Dec 29, 2013)

I don't think you're overreacting at all. When are her next labs/appt? Our current GI is big on watching trends and not so much taking results as black and white like our old GI. I'd be interested to know what a doctor thinks, particularly with the WBC.

One of the reasons DS's GI was ok with moving to Remicade was because his labs were trending in the wrong direction over the course of six months. They were in the normal range, but big picture, not going in the right direction.


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## DanceMom (Dec 29, 2013)

She sees the Rheumo on Tuesday so I'll definitely get his opinion on this. We haven't been with him long but he does take the time to sit and discuss labs with me.  I didn't notice this trend until now or I would have brought it up sooner. 

A had a fever at bedtime tonight. She felt fine though so I pray she feels good in the morning and our plans aren't ruined.


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## vtfamily (Jan 19, 2014)

my little penguin said:


> Brian'smom
> what about what vtfamily son is on stelera?
> 
> not a tnf blocker so ???
> ...


Yep, Gus started Stelara in March of 2013 (just before his 13th birthday), had a bowel resection to removed badly diseased section of the terminal ileum and has been doing GREAT!

This is the best he has felt in three years!  No missed school days due to pain! No hospitalizations for any reason!!

He says he feels "like a normal kid."  Fingers, toes and shoelaces crossed...he may make it to 14 without any new complications!!

Gus receives 45mg of Stelara every 8 weeks.

Best wishes to you!


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## Brian'sMom (Jan 21, 2014)

I've mentioned Stelara to Mayo GI. He hasn't talked about that one back to me yet. (Mayo has a portal that you can send emails on). We're in holding pattern kinda...he hasn't answered my last email yet. The capful of Miralax daily we started last Thurs seems to be helping with cramps. So that makes me again think its not the TI. But I do still think Cimzia isn't getting it done. So glad to hear stories like Gus. Makes me know we aren't at end of road. Did Gus start the Stelara at the same time of the surgery? Could the surgery have been the thing he needed? And was his TI the only area that was causing trouble? My son has always had trouble in the rectum also.


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## ronroush7 (Jan 21, 2014)

Brian'sMom said:


> I've mentioned Stelara to Mayo GI. He hasn't talked about that one back to me yet. (Mayo has a portal that you can send emails on). We're in holding pattern kinda...he hasn't answered my last email yet. The capful of Miralax daily we started last Thurs seems to be helping with cramps. So that makes me again think its not the TI. But I do still think Cimzia isn't getting it done. So glad to hear stories like Gus. Makes me know we aren't at end of road.


I was on Cimzia for a while.  It was working at first and then failed.  

 2


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## vtfamily (Jan 22, 2014)

Kathy (Brian's Mom),

In a nutshell, Gus' Crohn's manifests as severe stricturing disease.  We have to fight it on two fronts.  (A) Medication as much as possible to control the disease, reduce/eliminate inflammation/ulcerations, and manage pain.  (B) Surgery to remove the badly strictured sections, basically to "wipe the slate clean."  However, there is only so much bowel to slice and dice, so we have to be careful.

Gus developed a stricture in the duodenum in 2011.  It is in an awkward place and cannot be resected.  The opening is about (1/16" in diameter).  Finding a medication that is effective in controlling the disease (and therefore the pain) is crucial.  Other strictures, like the 2012 TI one, may come and go...but this one will always remain.

We try to stretch the "medical" treatments out for as long as humanly possible.  Read as, for as long as Gus can endure lengthy bouts of pain and still function as a student.

We resort to surgery when it is clear that there are no medical options that will resolve the stricture.  Surgery does seem to "clean the slate."  When the strictures are removed, Gus' pain disappears.

How do you maintain that state?  You know your old medications/treatments were not working, so this is actually a really good time to move on to a new medication.  The more effective the new medication is, the longer the disease will be kept at bay and new strictures will not form.

Gus' entire gut was a mess for most of 2012.  The surgeons would not even think about removing the TI stricture until the inflammation was under control.  He started Stelara two months before the surgery.  But, he had also been hospitalized due to pain several times and the GI doc finally put a PICC line in and took him off of all food (= gut rest).

The short answer to your question is, I think his gut was in such bad shape at that time, that he needed all of it (gut rest, new med and the surgery).  The proof is how well he has been feeling over the past eight months and how "normal" his daily routine has become.  I hope we never need triple whammy again, but if that is what it takes, that is what we will do!  No telling what the "new" medicine will be by then!

Best of luck to you and your boy!
Cheryl


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