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Imuran... here we go!

What type of doc was this again
I forgot if you mentioned it
The Doctor is the director of the clinic. He specializes in pain disorders.
Our Rheumatologist said he's a great doc to help us.
He's more than willing to send us else where but feels she's not in eminent danger.
He's not happy about the pain clinic being shut down.
 
What's interesting is she still meets the criteria for Ehlers Danlos Syndrome (sp?).
But this doc still not sure it's that. After all these years we still come back to EDS.
 

Maya142

Moderator
Staff member
The thing about traveling is that it can take a while to get an appointment for just an evaluation. At Boston Children's, it took a month just to get the evaluation appt. For Cleveland Clinic, it took 6 weeks.

Once they evaluated M, then they put her on waitlist. Depending on the program, the waitlist can be a week to several months.

So just keep in mind that the process takes a while. You could try the muscle relaxants, but if they don't work, I'd think about starting the process elsewhere.

You can stay at the Ronald McDonald House at Cleveland - we did and it really cuts down costs.
 
That is so disappointing about the clinic. Hope the muscle relaxant helps, frustrating not having clear answers
 
Farmwife,

My daughter has possible EDS and also has joint pain. We are going to a genetic specialist in a few weeks to determine if it is EDS. We were told by the rheumatologist this is the only way to dx it...
 
Yes and no. We saw the generic specialist at mayo.
Given Grace's young age they wanted too see if by year 9 or 10 if she would still meet the criteria for EDS.
But given your girl is older it might be wise.
I was told that there's no true test and that they go on physical, symptoms and markers (genetic testing). However they said you can have no markets and still have EDS.

Grace doesn't have the stretchy skin, does your kiddo?
I do know that you don't have to have stretchy skin to have EDS.
 
Can Imuran be causing joint pain?
Twice now Grace had to come off of it because of illness and both times ( plus a coupe of days I just plain forgot to give the pill, I know bad mama) her joint pains almost went away for those days.
I'm not sure if that's possible but I would be upset if this whole time it was Imuran causing her decline.
I will can the rheumatologist tomorrow to all their advice.

Also do you have to taper Imuran?
 

my little penguin

Moderator
Staff member
No taper needed
Imyran lasts longer in the system so it really wouldn't be the cause
Jspa waxes and wanes a lot all on its own
And when the body is busy with illness the joints tend to behave sometimes at least for ds
 

Maya142

Moderator
Staff member
Yeah - I'd agree. A kiddo with JIA can be awful one day and absolutely fine the next. It's very confusing.

Also, while some people flare while they're sick (like my girls), we have also met kiddos whose joints get better when they're sick. Not sure what the science is there, but maybe something like that is going on, since her joints have been better mostly when she's been sick and off Imuran?

Imuran used to be used a lot for JIA. It's still used for lupus, so I don't think it makes joint pain worse.

I would ask your doctor though - you never know!
 
Update to end the year.
Not good I'm afraid.

We notice she slowed way down in eating. Back to small meals and belly cramps.
Put her back on formula for 2 weeks and then will discuss with GI on what to do next.
JIA did get better on muscle relaxer but now seems to be wearing off.
We meet with the new pain doctor again and see what we can do next to help her pain to go away or at least manageable.

The GI might want to do more testing in the new year but I can't see finding out anything we don't know already.

The good news is Grace had a great Christmas day and did great at the party. Of course getting all the presents and told how pretty your are helps anyone feel better lol
 

Maya142

Moderator
Staff member
If Grace has Gastroparesis, it can be treated. There aren't very many meds, but there are some. Dietary changes can also help.

However, you'd probably have to do the gastric emptying test before her GI will give her meds. Typically with Gastroparesis, you'd have nausea and fullness after meals. Abdominal discomfort or pain. Possibly vomiting or weight loss, depending on how severe it is.

There are a number of different medications that can be used for amplified pain besides muscles relaxants. Antidepressants like Elavil and Cymbalta are sometimes used. Anticonvulsants like Gabapentin and Lyrica can also help.

M is currently on Lyrica. We can't really tell if it helps though because her AS is flaring.

I do think the pain program is worth exploring (even if you have to do it in the summer). It did help M - she is more active and stronger, she is eating better and is barely using her tube and she is weaning of pain meds very slowly. She sleeps better, though she does sometimes have bad nights because of pain. She can do a LOT more during the day and is just more functional.

However, in her case we still haven't gotten the AS under control so that is just making everything worse. We are going to do steroid shots into her SI joints because they're her worst joints right now.

It's tough with both JIA and amplified pain. I hope your pain management doctor has ideas.
 
After a meal....
Feels full after a few bites, nausea and thinks she's going to vomit but never does.... yet.

This pattern cycles every couple of months but seems to be picking up and staying longer.

She can handle her formula if she drinks slow. That doesn't seem to cause problems.

We're thinking we will do the pain clinic in the summer. Right now we're trying to set up a program here but it's proving a challenge because the pain doc wants final say so in everything. Not many places here work with kids and the pain doc is concerned that it can do more harm than good for Grace I'd not done right.
 

my little penguin

Moderator
Staff member
Honestly you need a specialized pain clinic that deals with chikdren
Even if you have to travel
There is a reason the wait lists are so long at certain places
Because it's a difficult thing that needs to be done right ( which comes with experience )
 

Maya142

Moderator
Staff member
Could definitely be gastroparesis - liquids empty more easily than solids. It's definitely worth investigating.

Studies have shown that outpatient programs (like outpatient PT/OT) just don't work as well as intensive pain programs. Some are inpatient, like the one at Cleveland Clinic and some are day programs, like the one at Boston Children's.

Mayo Clinic has a REALLY good one - if you can somehow get her there, that may really help. We stayed at Ronald McDonald house which made things much easier. Most big Children's hospitals have one nearby.
 
Sorry it's not a better start to the year. Glad she enjoyed Christmas though. Wishing you a year where they can finally find a definite diagnosis and meds to control it!
 
I hope that she's feeling a little better today, and that you get some answers in the new year.
 
She's been admitted to the hospital.
No longer keeping food down, passing bm's hurts and joints are to painful to move.
Yes, crohn's and JIA stinks and breaks my mama's heart.:cry:
 
Her blood sugar........ it's not coming up. Can that be crohn's related? It's staying at 42-45. It's being treated every 15 minutes.
 

CarolinAlaska

Holding It Together
The low blood sugar doesn't make sense. Are they finding anything else? Are they going to test her for gastroparesis?
 

Maya142

Moderator
Staff member
I was also thinking that. They are allowed to take Zofran during the Gastric emptying test so they can keep the meal down.
 
Mlp, it's not a kid hospital.
But their in talks with her GI and rheumatologist.
She has visible blood in her stomach.
Her x rays showed a lot of gas but no obstructions.
Her labs showed the low blood sugar and
what concerns the doc is she had dropped in her level of bicarbonate (sp?).
I guess it's was a sizable drop and he's not sure why.
She's had no vomiting or diarrhea which can affect this level.

They are giving us a room........ finally.
 

my little penguin

Moderator
Staff member
Not understanding why she isn't at a kiddie hospital isn't there another one in the state close to you ??
She is complicated adult hospitals can't handle complicated kids period
They do not have pediatric specialists to watch over her care
 
Farmwife,

I'm sending positive thoughts, energy, prayers, and everything I can think of to Michigan...for wisdom for the Drs to figure this out, healing for her, and clarity of mind for you to navigate this maze and make decisions.

I hope things turn in right direction soon.
 

Maya142

Moderator
Staff member
M has had low bicarbonate. In her case, it was because of malnutrition. Has Grace been getting her G-tube feeds?

I'd also urge you to get her transferred to a children's hospital when things are stable. Everything is different with kids - JIA is treated more aggressively than adult arthritis and gastric emptying values can be different for adults and kids for example.

It really helps to have pediatric specialists particularly because she is so complicated and because they haven't figured out what's going on.
 
We'll come up with a game plan tomorrow.
Grace is more comfortable but looks so pale and tired.

Heres to a long night of uncomfortable sleep in a hospital recliner that should be outlawed.
 

my little penguin

Moderator
Staff member
Hugs
So glad she is more comfortable
Our kiddie hospital thankfully has couches that convert to full twin beds
Plus a twin trundle that pulls out
 
Are they offering an opinion of what's going on? Could this be a virus? I hope you both get good sleep and tomorrow brings answers and relief.
 
Lol, the docs came in and talked about a possible transfer down state.

So far the rheumatologist on call said the GI problems are to blame.
The GI on call never called the docs back. Grrrrrrr
I'll be calling everyone tomorrow.
 

Maya142

Moderator
Staff member
If they're moving her, can you get her to the hospital where her GI and rheumatologist are? So that they actually communicate (with you and with each other!)? Our doctors are horrible at communicating with each other and they are at different hospitals so it's a real pain when M is inpatient.

Hope you're able to sleep - we have couches that become twin beds here too! A recliner sounds awful!

Glad she's more comfortable :ghug:. Will be thinking of you.
 
On no, so very sorry to hear that. Thinking of you both. Hope her treatment improves or you get a transfer!
 

Tesscorm

Moderator
Staff member
So sorry to hear this. :ghug: I hope the transfer is happening smoothly and you are both more comfortable soon!

How is she doing?
 
We're home!
Night and day difference in Grace.
Still not out of the woods but she has many appointments set up for the next two weeks
to help this flare get under control.

She is back to a complete liquid diet.
The GI isn't totally convinced of what is causing her stomach delay but we'll discuss it in detail next week.

Her rheumatologist also wants her back for a visit but all this resting gave had done seems to have help her JIA.

Thanks everyone for the well wishes!!
 
Tomorrow Grace turns 7!!!
She's already planned the day down to the epic size party she wants with her stuffed animals.

However, it will be a no food party as she's on formula.
We meant with the new GI NP
and she doesn't think Grace has anything serious stomach wise because
she would be vomiting non stop. :ybatty:
But does want Grace to stay on formula to give everything time to settle.:ymad:
 

Maya142

Moderator
Staff member
You can have Gastroparesis without vomiting. M only vomited rarely and her gastric emptying test showed clear Gastroparesis. Can you get a second opinion? Or just ask for the gastric emptying test?

Hope she has a happy birthday!!
 

my little penguin

Moderator
Staff member
Why are you seeing an NP instead of a Gi ???
We see a np in other specialities where Ds has minor issues but not things that there are major issues like Gi or Rheumo ?
Last time I read your posts grace seemed complicated
 
The GI didn't come to our area this time. It was her NP.
I've already received an email back from the GI discussing points we talked about.
Nothing brought up on her nausea but I'll be calling next week with an update to the GI.


Grace is so happy, she got a big girl bike but she has to go to the doctors this afternoon because her urine is either dark yellow or slightly green"ish". I'm thinking Uti.
 
UTI with possible kidneys involvement. We won't know until 24 hour mark.
We were sent home with a huge list to watch for.
She's place on antibiotic every 8 hours for the next 8 days.
Other than that she's happy. Ya wouldn't know she has any issues.

She was hilarious and stretched out on the doctors table and announced...
This is so NOT how to spend my birthday!!!:rof:
 
UTI with possible kidneys involvement. We won't know until 24 hour mark.
We were sent home with a huge list to watch for.
She's place on antibiotic every 8 hours for the next 8 days.
Other than that she's happy. Ya wouldn't know she has any issues.

She was hilarious and stretched out on the doctors table and announced...
This is so NOT how to spend my birthday!!!:rof:
Love it! Princess for life! You have some plan to trick future suitors? :)

Hope she feels better soon.
 
Hope the antibiotics kick in soon, glad she is happy and loves her bike. I do miss birthdays from when they were younger, they get so excited about their presents.
 

Maya142

Moderator
Staff member
M had a UTI about a year ago. It wasn't bad at all though - she was only on antibiotics for 5 days I think and after that she was fine.

Hope Grace feels better soon!
 

Catherine

Moderator
My middle daughter was on antibiotics for 12 months for UTI. But she already had scarring on one kidney from a single kidney infection at 2 years of age.
 
So Grace had a rheumatologist and GI visit a week or so ago.
Under the GI's instructions Grace finished anther round of EEN.
She did great and the pain went away ( for the most part).
But.....................
We tried putting Grace on a limited food again but right back to nausea and pain.
I can't figure it out.
I guess it's back to EEN and a talk with a dietitian.
The GI said scopes will be in her future if we can't get this under control.

Rheumatologist land........................
Grace had yet another new dx of JIA ( juvenile idiopathic arthritis) with ERA (enthesitis-related arthritis).:yfaint: Not surprised but still hate it! He did say that Grace is special because mostly boys get this type.:cool2: gee I'm thrilled!!!!

I pray y'all are doing well. I always check in when I can. Hugs to all.:ghug:
 

Maya142

Moderator
Staff member
My girls both have that type of arthritis. That is the same as JSpA. It is more common in boys, but we have met MANY girls with it over the years. The treatment is the same - anti-TNFs and if peripheral joints are involved, immunomodulators like MTX or Sulfasalazine. NSAIDs are used in kids without IBD usually.

Have you asked about the gastric emptying test? Scopes won't show gastroparesis, if that is the problems.

Wanted to add that it is quite common for young kids to be diagnosed with polyarticular JIA and then switch categories as they get a little older and develop more JSpA like symptoms - like SI joint pain or enthesitis. With very little kids, it is often hard to distinguish between the subtypes and the arthritis becomes more "differentiated" as they get older.
 

my little penguin

Moderator
Staff member
^^^^ yeah that
JIA is just the bigger term where all the subtypes fall under
Basically any kid who has Ibd automatically gets the JSpA dx when they fall under JIA umbrella .
As Maya142 said all the same treatment .
Did they test for hla b27 ?


When you say limited food
Is it by the amount of calories , type of food ?
Number of times eating , length of time and calories between meals , fat/fiber content etc???

With Ds we had to only add one new food for a few days - make sure he tolerated it then add a different food and not a combo

It took a while ( months ) to figure out foods that were just not tolerated at all

Good luck
 
Sorry for the last reply, Grace got sick over the weekend.

Limited as in very few foods that she's even willing to eat ( rice, chicken, chicken hot dogs, yogurt ( the special kind that helps the gut), salted crackers with peanut butter).
We've been thru this all before. For a year we did slow reentry to food when she was 4-5. That why she had her feeding tube. Worked with a dietitian back than too.
But we might have to do another like you've done.
Maya, no mention of the test yet but when we meet in a few weeks I'll know better on how she's doing. I'm curious on what it will show.
 
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