# MTX and maybe Humira for The Little Farm Girl



## Farmwife (Dec 13, 2013)

Rheumatologist Dx Grace with JRA today.:confused2:
 The doc said it was serious enough that she started MTX right then and there.
 Also the GI and Rheummy are considering Humira as a add on.:yfaint:
We went off to labs to test for something for the possibility of Humira.
The doc also fears Grace has eye inflammation. :eek2: So Monday we have to get into the eye doctor.
 And then the Rheummy said we need to come back every 2 months for awhile:yfaint:


I feel so sick. :confused2: I hate this! I'm so mad at myself for giving her the shot without thinking about it more.  :ymad: So not how I thought the day would go.:ymad:


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## DanceMom (Dec 13, 2013)

I'm sorry you have yet another diagnosis but I'm glad they had a plan. Now that A is dealing with more joint pain I'm curious how the JRA diagnosis is made?

I think it is a good idea to have an established ophthalmologist anyway. Our GI had us see one a few months back just to make sure there were no problems. We are to see her annually or if problems arise.


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## my little penguin (Dec 13, 2013)

:hug:
I know its a lot to take in but the reality is if JRA is not treated aggressively especially when it involves more than five joints ( each hand has 10 joints btw) very bad things can happen that are not reversible . 
So it may not be the shot you want but
Mtx + humira has been proven to change the disease  coarse and keep joints healthy.

Add in the both help Ibd a win win .

Ideally you like to wait but treating her effectively is key and getting her better.
When they add the humira 
Ask the Rheumo about adding lidocaine to the humira syringe .

It makes a big difference in the pain caused by the shot .

Cry tonight and mourn the extra dx but to morrow big girl pants on for you .

Join the jra forums. As well


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## my little penguin (Dec 13, 2013)

http://www.arthritis.org/conditions-treatments/disease-center/juvenile--arthritis/

http://www.mayoclinic.com/health/juvenile-rheumatoid-arthritis/DS00018/DSECTION=symptoms

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=281


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## Mehita (Dec 13, 2013)

Sorry to hear of another dx, Farmwife, but you're getting answers and it sounds like a plan is falling into place. Hopefully Grace will be feeling better soon. :ghug:


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## Jmrogers4 (Dec 13, 2013)

Sorry to hear you are having to deal with yet another diagnosis but hope the Mtx and Humira give her relief from both diseases and she can go on her merry princess way.
Big Hugs!!


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## Catherine (Dec 14, 2013)

One of Sarah's best friend has JRA. She have never let it get in her way.  She has just completed her VCE and hoping to go on to university.  The treatments have improved so much in the 15 years since her dx.


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## polly13 (Dec 14, 2013)

Omg fw poor grace she is such a little soldier and has been through so much.  Lucy is taking mtx and humira and is tolerating well.  The humira shot hurts like hell but I promise she will get used to it.  I don't know how it works in us but here a nurse calls to administer the shot and train on how do it my advice would be for u or dh to start administering ASAP yourselves - my husband and I were so nervous we brought back the nurse far too many times and it was only when we started doing it ourselves that Lucy chilled out and the process got a lot calmer and she doesn't even cry now.
I understand how you feel today - being told your kid needs these drugs is like a punch in the guts, but you will rationalise it over the next few days and while you will never be totally ok with it you will come to accept it.  Hang in there mom your doing great.  Give grace a big hug - hope Santa is going to bring her something really special.


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## dannysmom (Dec 14, 2013)

Thanks for the update. I hope the medication helps!


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## Maya142 (Dec 14, 2013)

So sorry to hear that. Humira and mtx were a magic combination for both my daughters. Each time we added a new med, I agonized about it, but more often than not, the result was was so incredible that I kicked myself for not getting my girls on biologics earlier.
My 19 year old is in college and is thriving on Humira and mtx. It'll get better.
Humira does hurt quite a bit though.
Good luck! I'll be thinking of Grace.:ghug:


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## Tesscorm (Dec 14, 2013)

I'm so sorry to hear about the JRA.   But, hopefully, with a diagnosis, a solid plan can be put in place that will have Grace feeling much better!  Lots of hugs! :ghug: :ghug:


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## Farmwife (Dec 14, 2013)

Thanks everyone,
MLP, what forums are there? I've searched but most forums for JRA are not current.


Grace is showing no side effects so far. She still is in pain but happy.

:yrolleyes:OK now that I have my thoughts together.......

What were they testing for in labs that have to do with Humira?

What is the success rate of just using mtx at achieving remission in IBD?

Why do they do labs every 6-8 wks? What will they be checking for?


Crazy, Of all the times I've read these it's completely different when it's your kid.:confused2:


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## Brian'sMom (Dec 14, 2013)

Sending hugs!! Our son's labs increased when methotrexate was added. They are checking his liver mostly. Not sure what the labs prior to Humira would mean. Could they want labs before starting to have a baseline? Not sure. We went from Remicade reaction right to Humira way back when.


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## polly13 (Dec 14, 2013)

They are probably checking her immunity for chicken pox and other illnesses like that - I guess if she hasn't had them they will suggest vacination.  They will also check for tuberculosis antibodies, as well as fbcs, full liver panel white cell, red cells and inflammation markers.  Surprised bloodwork is every 6 weeks , Lucy initially got bloods every week with methotrexate and now 6 months in we get them done every month - bloods are as I've outlined above - it's usually about 3 vials of blood.


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## Clash (Dec 14, 2013)

I assume because C is older is blood work is further apart, every six weeks but in the beginning it went every week to every two weeks to once a month and now every six weeks. There are some kids in the IV lab that get there blood work every 12 weeks, so I guess it depends on the doctor or what the parent will accept, since these kids go to a doctor is the same group as C but not his doctor.  

With MTX GI said they are checking liver panels and such to ensure MTX is having no effect on liver. I can't remember the other things they are testing for.


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## Sascot (Dec 14, 2013)

Thinking of you! Sorry to hear about the new diagnosis.  It must have been stressful having to have the shot then and there.  It will be worth it in the long run if it can help both the joints and IBD.  Crossing fingers and toes that it helps soon!


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## kimmidwife (Dec 14, 2013)

Hope it works and she feels better quickly. I am not surprised by the diagnosis with all the joint pain she has had. At least the good thing is those meds help with both diagnosis so hopefully she will improve with both the joint and IBD issues. good luck I hope she starts feeling better fast.


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## my little penguin (Dec 14, 2013)

http://groups.yahoo.com/neo/groups/jra-list/info

http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-arthritis

Also try Facebook
Typically there are closed groups there


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## my little penguin (Dec 14, 2013)

http://community.arthritis.org/go/forum/view/143395/239731

Add this one


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## DustyKat (Dec 15, 2013)

Oh my goodness FW  I am so, so sorry to hear this. :ghug: 

What an awful and heartbreaking time for you all and such a difficult time of year to have contemplate all that lay ahead. 

I hope with this diagnosis now made that Grace soon finds long and lasting relief from the pain that has been plaguing her for so long. Lord knows you both need a break, your strength and determination through all that Grace has experienced is phenomenal and Grace herself possesses those same qualities. Bless you both for better days, months and years ahead. 

Dusty. xxx


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## CarolinAlaska (Dec 15, 2013)

I'm so sorry to hear this, FW.  I will be praying for your sweet girl and for you.


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## Farmwife (Dec 15, 2013)

Thanks again everyone.

I feel a lot better today. 

A question, does mtx cause lose stools?


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## crohnsinct (Dec 15, 2013)

Farmwife said:


> A question, does mtx cause lose stools?


Hasn't been our experience and we weren't warned of it either.


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## my little penguin (Dec 15, 2013)

If constipation was her issue then Mtx remicade etc 
Causes the inflammation to go down but your stilling using miralax so hence the loose stool.
Its a balance as to how much miralax etc is needed and how long the Mtx will last .
That's a good thing 
Good luck


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## Maya142 (Dec 15, 2013)

Hope mtx starts working for Grace soon! I couldn't stop thinking about her today, because my daughter had a lot of joint pain, and I can't imagine how younger kids deals with it.:ghug:


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## Farmwife (Dec 16, 2013)

my little penguin said:


> If constipation was her issue then Mtx remicade etc
> Causes the inflammation to go down but your stilling using miralax so hence the loose stool.
> Its a balance as to how much miralax etc is needed and how long the Mtx will last .
> That's a good thing
> Good luck


That is something to think about. Thank you MLP
Before the shot I've had to up her Miralax. However:yfaint: yesterday she couldn't go again. She wanted to but nothing came out.
We'll see how today goes.


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## Farmwife (Dec 16, 2013)

Maya142 said:


> Hope mtx starts working for Grace soon! I couldn't stop thinking about her today, because my daughter had a lot of joint pain, and I can't imagine how younger kids deals with it.:ghug:


I was wondering Maya142, is there anything you do to help the girls sleep?
Grace has swelling in her neck and lower back. She can't sleep and keeps saying how much her neck hurts. I was wondering if theirs special pillows or something to help.


I am trying to research this but If mtx works does that mean the pain will go away in ALL the joints (11 joints and 3 spots on the spine)?
Plus does the spine count as a joint? If it does, do you count each vertebra or just the entire spine as one?:yfaint:

Sorry but for now your the only mom I now that has kids like Grace. HUGS


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## CrohnsKidMom (Dec 16, 2013)

Hi FW, sorry to hear about little Grace.  My son is on MTX and it initially loosened his stools and increased frequency.  That was a good thing for my son as he usually has constipation.   But, his system must be a little accustomed to the med now (he's been on it for about 4mths) as his frequency has decreased to every other day, once a day if we're really lucky.  If it's a problem for Grace, you may see it settle as time goes on.  MTX has worked well in my son.  He still has some joint pain from the Crohn's, but it is decreased.


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## Maya142 (Dec 16, 2013)

Unfortunately we struggle with sleep too. My girls take muscle relaxants because their muscles spasm at night (because of inflammation) but I'm not sure if that's an option for a child Grace's age?
We use heating pads too, the kind that have a timer, so that they don't get burned. My younger daughter used to get very tense because she would anticipate a painful night, so her psychologist taught her some relaxation exercises, those helped. When the medications work, both girls have no trouble sleeping, so I know it's pain related.
In terms of pillows, I know for lower back pain you can try a pillow between her legs (if she sleeps on her side) or under her knees (if she sleeps on her back). I don't know about neck pain because neither of my girls have it.
The pain in her spine is most likely enthesitis (inflammation where tendons attach to the bone). Did the rheumatologist say what kind of juvenile arthritis she has? Enthesitis also goes away with treatment. For my girls, the lower back pain is the last to go when they're in remission. They're never totally pain free, but they say that the pain that they have (when they're in remission) is insignificant, compared to what it was, that they don't care. But they also have erosions (damaged joints) and so if Grace doesn't have damage yet, perhaps with treatment she will be totally pain free.
For ankylosing spondylitis, studies show that mtx does not work on axial (spinal) pain. However, it has helped both my girls, possibly because besides their SI joints, they don't have inflammation in their spine joints, just enthesitis.
http://www.kidsgetarthritistoo.org/about-ja/the-basics/what-is-juvenile-arthritis-3.php

This is a good image of where there can be enthesitis pain:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002099/?page=2

If you have any more questions, please ask! I'm more than happy to help.


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## Farmwife (Dec 16, 2013)

Thanks Maya,
The doc wasn't sure what kind. She said it could fit into two categories and one of them would be Enthesitis. 
Can you have 2 different kinds? I wouldn't put it past Grace, she's always been an over achiever.:yfaint:


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## Maya142 (Dec 16, 2013)

I haven't heard of any kids with two types of JRA, so I have no idea! It's possible that the dr will have a clearer idea of what Grace has as she grows older. My girls weren't officially diagnosed until they started having sacroiliac joint pain, which for my older daughter was a full year after her other joints (knee, heels, ankle) started hurting.


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## Farmwife (Dec 16, 2013)

The rheumy wanted me to call and up-date her on Grace. I'll ask if she chose one. I do know she said officially diagnose.


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## kimmidwife (Dec 16, 2013)

I hope she is feeling a little better. The methotrexate kicked in pretty quickly for Cailtyn way back when she was on it. Hopefully it will be the same for Grace.


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## Farmwife (Dec 17, 2013)

Maya142 said:


> Did the rheumatologist say what kind of juvenile arthritis she has?


I just talked to the GI nurse who read the dx. It's the polyarthritis.

_Taken from Kidsgetarthitistoo.org_
Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.

*The JIA criteria also sub-divides children with polyarthritis into two categories, those who test positive for rheumatoid factor (RF) – an antibody found in the blood – and those who don’t. *The RF-positive form of the disease usually emerges in the elementary school years or later. It’s the type most similar to adult rheumatoid arthritis. Children with RF-positive polyarthritis are typically more vulnerable to severe disease and related joint erosion than those who test negative for rheumatoid factor.

Maya did your kids test positive to  the RF? Your girl that  has IBD, does she struggle more with JRA then her sister?


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## Maya142 (Dec 17, 2013)

Mine didn't test positive, the kind of arthritis they have is seronegative.
My younger daughter M does have a harder time than her older sister, though her sister has been through a lot too. We just can't seem to get M into remission - she did very well on Humira, but hasn't been doing quite as well on Remicade. Her GI symptoms are mostly controlled on Remicade, but not her joint pain.


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## Farmwife (Dec 17, 2013)

:dance::dance::dance:
Could it be that mtx is working this fast??????
I'm almost afraid to type it.

She's poo'd once today, a lot. I mean A LOT!

That's the good part but...........................
 the joint pains, fatigue and cramps are still bad.:confused2:

Oh, the GI and Rheumy have said NO to ANY pain meds other than Tylenol.:yfaint: 
I said she is in so much pain she can't use her arms sometimes
(her shoulder and one wrist and a thumb is involved). 
Still she said no and to use heating pads and warm baths.:

Hopefully the mtx will fix things quicker than later.:cool2:


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## my little penguin (Dec 17, 2013)

ask about exercises- moving helps with sore joints  ...but the doc can tell you the right type of movements for her.


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## crohnsinct (Dec 17, 2013)

Also tell your doctor if you are taking nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, choline magnesium trisalicylate (Tricosal, Trilisate), ibuprofen (Advil, Motrin), magnesium salicylate (Doan's), naproxen (Aleve, Naprosyn), or salsalate. These conditions and medications may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to give you a lower dose of methotrexate or stop your treatment with methotrexate.

Sorry Grace...I am voting stay away from NSAIDS.  Not to mention they complicate the IBD issues.  

FWIW - it took almost the full 12 weeks for us to see any reduction in O's joint pain but they "think" she has psoriatic arthritis not jra.


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## Maya142 (Dec 17, 2013)

My daughter needs NSAIDs for joint pain. There is no way she would get through the day without them, as I'm sure I've mentioned before. That said, I spend many sleepless nights worrying about what it is doing her GI tract.
There are no good options unfortunately…Even with Remicade, she still needs her NSAID. Hopefully, eventually she will go into remission and we'll be done with NSAIDs.
So, no answers but hope mtx kicks in sooner rather than later!


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## Farmwife (Dec 17, 2013)

crohnsinct said:


> Also tell your doctor if you are taking nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, choline magnesium trisalicylate (Tricosal, Trilisate), ibuprofen (Advil, Motrin), magnesium salicylate (Doan's), naproxen (Aleve, Naprosyn), or salsalate. These conditions and medications may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to give you a lower dose of methotrexate or stop your treatment with methotrexate.
> 
> Sorry Grace...I am voting stay away from NSAIDS.  Not to mention they complicate the IBD issues.
> 
> FWIW - it took almost the full 12 weeks for us to see any reduction in O's joint pain but they "think" she has psoriatic arthritis not jra.


Well I'll be, that there does make some sense.
Thank you once again CIC for calming my wrath down.:cool2:
And for making sense out of the senseless.


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## Farmwife (Dec 17, 2013)

Maya142 said:


> My daughter needs NSAIDs for joint pain. There is no way she would get through the day without them, as I'm sure I've mentioned before. That said, I spend many sleepless nights worrying about what it is doing her GI tract.
> There are no good options unfortunately…Even with Remicade, she still needs her NSAID. Hopefully, eventually she will go into remission and we'll be done with NSAIDs.
> So, no answers but hope mtx kicks in sooner rather than later!


Maya, they have us between a rock and a hard place.
I would use it if I was in your spot.:ghug:

*I was wondering about Pred.* Maybe a short burst??? 
My only fear is their concern over her low cortisol levels.
Off to research that topic.


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## Maya142 (Dec 17, 2013)

Steroids work very well for my daughter though she hates the side effects (moon face). But they help SO much with pain. We try not to use them but have had to twice this year. She's usually given 20mg.
Definitely ask your doctor!


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## my little penguin (Dec 17, 2013)

Since she had possible adrenal insufficiency from being on steriods before (????)
Probably not something your docs are going to go for kwim


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## kimmidwife (Dec 17, 2013)

FW,
What about taking her swimming again? Didn't that help her a lot last year? I know for my fibromyalgia getting in the pool is like a miracle for me. Keeping my fingers triple crossed that the MTX works quickly for her.


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## Farmwife (Dec 17, 2013)

my little penguin said:


> Since she had possible adrenal insufficiency from being on steriods before (????)
> Probably not something your docs are going to go for kwim


Yes I understand but I'm hoping to test her level again and see what it is at.
They only did a am cortisol test ONCE. I'm hoping it was just a fluke. We'll find out.


Kim she starts water therapy again in a couple weeks.
 I am already doing stretching with her.
Thank God we're on break from school. I don't think she could make it right now.

She still is making a Christmas list. She seems to think if she hurts she gets all the presents she wants.:yfaint:
I told her that's not how it works. 
:ybatty:Then my mom and mil called...........................Ya, she's pretty getting everything she wants.:yfaint::ylol:


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## kimmidwife (Dec 17, 2013)

I am glad she is starting the water therapy again. Keeping fingers triple crossed that it really helps. She definitely deserves everything on her list!!!!!


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## polly13 (Dec 18, 2013)

Just checking in farm wife - hope grace is doing better and the mtx is starting to have a positive effect.  Lucy always gets what she wants too even if I say no, somebody (usually a nanny or grandad) gives in cause they feel sorry for her. Her grandad bought her a new pony for Xmas just cause she asked nicely  but you know our kids suffer so much every day sometimes it's nice to be able to make them forget even if it's only for a few mins.


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## Tesscorm (Dec 18, 2013)

FW, I know next to nothing about arthritis nor appropriate treatments but...  my mom has had a form of arthritis (beleive it's osteoarthritis) since she was in her 30s.  The pain and swelling have been quite severe at times, especially her knees.  When it's been particularly bad, she's had cortisone shots and, although she's said they are extremely painful, they also bring her incredible relief, very quickly.  I don't ever remember her mention any side effects (by side effects, I mean things like moonface, mood swings, weight gain, etc., obviously the general/long term risks of steroids are still there).

I'm sure if this was a viable option to use with IBD, the specialist would have mentioned it but... just in case, wanted to pass it along. 

(If you want any more info on it, I can ask my mom.)


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## Mehita (Dec 18, 2013)

A real pony, Polly? Wow!


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## kimmidwife (Dec 18, 2013)

A pony that is awesome!!!!


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## Farmwife (Dec 18, 2013)

OMW, Polly I am so expecting that some day for Grace. I have ASK and PLEADED with my in-laws to wait until she can take of it herself.

Where are you going to board it? Has she taking reading lessons yet?


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## Jmrogers4 (Dec 18, 2013)

I loved my Pony - Brandy Joe.  He was awesome - loved black licorice and popsicles.  I didn't get him until I was about 8.  I would even go trick or treating at Halloween with him.  We lived out in the country and it was a long walk between houses much better to ride my pony.  Costumes usually involved something on horseback - princess, cowboy, american indian.


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## Tesscorm (Dec 18, 2013)

OMG, my daughter would be soooo jealous!  :rof:  She rode and competed in jumping, etc. for years... but, being city girls, I absolutely drew the line at OWNING a pony or horse! :lol:


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## Sascot (Dec 18, 2013)

Sorry haven't been around as much. That's good that they have an actual diagnosis. Hope the methotrexate kicks in soon so her pain eases. At least Christmas will take her mind off things.


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## Farmwife (Dec 18, 2013)

Tesscorm said:


> FW, I know next to nothing about arthritis nor appropriate treatments but...  my mom has had a form of arthritis (beleive it's osteoarthritis) since she was in her 30s.  The pain and swelling have been quite severe at times, especially her knees.  When it's been particularly bad, she's had cortisone shots and, although she's said they are extremely painful, they also bring her incredible relief, very quickly.  I don't ever remember her mention any side effects (by side effects, I mean things like moonface, mood swings, weight gain, etc., obviously the general/long term risks of steroids are still there).
> 
> I'm sure if this was a viable option to use with IBD, the specialist would have mentioned it but... just in case, wanted to pass it along.
> 
> (If you want any more info on it, I can ask my mom.)


Yes some kids get the shot Tess.  Nothing mentioned for Grace yet.


Well I got the call from the GI clinic. 
The nurse told me the GI said it's up to us if we want to start Humira. 
We have a February appointment. 
So I can:yrolleyes: think, :yrolleyes:double think and :yrolleyes:triple think about it.

Well at least we have time to see if the mtx will work on it's own.

Grace had a BAD day. She just to tired and her back is really hurting. Abdominal pains making a return. :confused2:


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## Maya142 (Dec 18, 2013)

My daughter got a cortisone shot in her knee once. It was very swollen and painful and the shot helped a lot. She was old enough that they didn't sedate her but with a child Grace's age I'm sure they would.


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## Catherine (Dec 18, 2013)

Sarah's friend takes remicade, her parents say it the best treatment she has ever had.

Her disease is on the very extreme end things.  Double hip replacement at 16 years.  Legal blind due inflammation.


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## polly13 (Dec 19, 2013)

Farmwife said:


> OMW, Polly I am so expecting that some day for Grace. I have ASK and PLEADED with my in-laws to wait until she can take of it herself.
> 
> Where are you going to board it? Has she taking reading lessons yet?


Lucy started pony lessons when she was just turned three about 5 months after her diagnosis .  She went to a dance cladding with my other daughter and was unable to continue after 15 mins as her energy levels were so low.  I was so upset but my dad and my sister persuaded me to let her try pony riding instead and between them they organised her first lesson.  To say she loved it is an understatement - so she has been having a lesson every week since.  She adores animals, so my dad bought her first pony about a year ago - he is teeny and because she has grown so much in the past few months (thanks humira) he is almost too small for her now - so fil felt it was his turn now and bought the new one. Like u fw I live on a farm so ponies are housed here with us and her riding instructer comes here every Saturday morning and gives her (and me) a lesson - absolute highlight of the week.  Would really recommend it no matter how unwell Lucy is or no matter how sore her bum is pony riding gives her an amazing lift. Having ponies is a complete pita for me but it's worth it as she loves it so much.  It's kind of amazing on some ways to see such a small girl in full control of a pony - and she looks so cute in her pink riding cap  

So if your fil arrives with a pony embrace it .  What is grace asking Santa for?


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## Farmwife (Dec 19, 2013)

*Levsin?* Has anyone used this drug? Did it work?

I'm worried because it sounds like it slows things down in the track. I don't need her going backwards here. But she does need some pain relief.


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## Jmrogers4 (Dec 19, 2013)

Jack used it for a short time and it really worked.  Not sure about slowing things down but it helped with the stomach cramping pain.


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## DanceMom (Dec 19, 2013)

Yes, A has used it.  It is an IBS medication.  It did nothing for A; no side effects either.  I may as well have been giving her a sugar pill.


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## my little penguin (Dec 19, 2013)

DS used it .
If it was a minor pain ( not daily ) it stopped the spasms .
But if it was daily stomach pain - not useful at all.
It did cause constipation for DS but only if we used it multiple days in a row .
Just make sure your consistent with miralax while on it .


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## Brian'sMom (Dec 20, 2013)

Brian tried it. It didn't really make a difference for us. It also made him dizzy. I have a friend that swears by it for her son with crohns.


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## Farmwife (Dec 21, 2013)

Another formed stool. YA!!!!
But still a lot of pains (abdominal and joint).

Off for the last Christmas week-end. Looking forward to it. Such a wonderful time of year.
Oh to be a child again and think I'll get all I wish for. lol


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## Farmwife (Dec 26, 2013)

Third dose of mtx.
 She is still having regularly bowel movements. First time in years. Yay!
However she is hurting during bm's now.:angry-banghead:

JRA is now acting up in her arms. Poor girl.

Also she's complaining of teeth pain since starting mtx. 
Has this happen with anyone else?


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## Maya142 (Dec 26, 2013)

By teeth pain, do you mean jaw pain?
Glad mtx seems to be doing something!


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## polly13 (Dec 27, 2013)

Lucy never had teeth pain but she has got mouth ulcers wonder could she be mixing up teeth and gums if they are close to each other


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## Farmwife (Dec 27, 2013)

I have TMJ. Had surgry in my teens on my jaw. It was and still is a bother.

I've asked and Grace says teeth but it seems like it's more of the gums and jaw.
I know it's the shot doing this. 
It starts a few hrs after the shot and last 4 days than fades away and the back with the next shot. 
It's nothing bad enough to not do the shot though. 
I have to call and update the Rhuemmy and will ask.

Grace is sick this morning. Caught a cold. 
Will be starting her Asthma plan this morning. 
No need to get pneumonia if we can help it.:yfaint:


Any advice on mtx and viruses? Do you notice if it gets worse?


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## Farmwife (Dec 31, 2013)

Another new year comes to an end.
What a year. 
The good report is she still going poo regularly.
The third through the fifth day is her best days after her mtx shot.
I've called multiple times to her rheumatologist about her newest symptoms
But i've been told to be patient and let the shot work.:yfaint:
Bad news is her tummy pains are getting bad. 
Almost thinking about having her go back on full EEN.
I'll talk  to the GI next week.

 Have to say that I love my new tablet.:dance::dance::dance: I can write by sliding my finger and it tells me what word to put their.

Hubby just got in from chores. I'm making the most unhealthy dinner on the planet but it will taste good.
Happy New Year.


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## DustyKat (Jan 1, 2014)

Happy New Year to you and yours FW! :ghug: 

Wishing, hoping and praying that this brand new year brings much better days ahead for Grace and all your family. :heart: 

Dusty. xxx


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## Sascot (Jan 1, 2014)

Happy new year! Hope this year brings you a treatment plan that can give Grace mostly good days. Hope your boy feels better too.


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## Farmwife (Jan 2, 2014)

Fourth shot of mtx down.:dance::dance:
 Grace told me that she rather do the shot once a week than
 pills everyday.



:heart:On a happy note, my baby Grace is turning five at the end of the month.:heart:
We're throwing a big (growing bigger by the day) birthday party for her.
She's planning the whole thing. 
She wants a wedding cake at least three tiers, flowers on all the tables and
A princess/dinosaur/fairy theme.:yfaint:
It's just nice to think of something else for awhile.


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## Sascot (Jan 3, 2014)

Wow, 5 yrs old! Good luck with the party :lol2:. I made a 3 tier wedding cake once, it was certainly an experience!


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## mom2277 (Jan 3, 2014)

I LOVE the party.  Grace sounds like the sweetest little girl.  I'm sure she will remember it forever, and especially the love behind it.  Keep us posted on it!


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## Tesscorm (Jan 3, 2014)

Hope 2014 brings lots of steady improvement for both Grace and your little boy!

Love the princess/dinosaur/fairy theme!  :rof:  Post some pics of the decorations and the cake!!


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## Farmwife (Jan 3, 2014)

I can imagine the fairies hiding for there dear little life's :confused2n the top of the cake, as the big bad dinosaur :devil:climes his way up to eat the delectable fairies.:yfaint:

Thank God she wants it to be friendly dinosaurs.:lol2:

For the first time in months Grace is bent over in pain. Poor kid, when will this end?? I might be taking her to the ER if she gets worse. It doesn't help that she looks puffy in her face, like when she was on pred.


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## Tesscorm (Jan 3, 2014)

Poor Grace   I just can't imagine how tough it is for you to keep seeing her in pain. :ghug:  I hope something settles the pain and it goes away before you need to actually take her to ER.

No doubt you've tried but maybe some distraction will help her...  you can make her some magical dinosaurs that are pink and have wings for her birthday!


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## Maya142 (Jan 3, 2014)

Oh poor Grace, hope she feels better soon.:ghug:


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## Tesscorm (Jan 3, 2014)

Just an idea for her birthday...  can she eat jello?  If yes, you could make some dinosaur shaped jello desserts.  An old school project I made with my daughter just popped into my mind....  make pink jello in a flat pan (sort of a deep cookie sheet, a little less than an inch deep) and then, using dinosaur shaped cookie cutters, cut out dinosaur shapes from the hardened jello.  

My daughter once did a medievel times project and we made stained glass 'sheets' from jello - I made a sheet of yellow jello, one of green, blue, red and then, with cookie cutters, cut out shapes from the jello sheets and interchanged into other colour sheets(ie cut out diamond shapes from blue and red and put blue diamond into red sheet, etc. - am I making sense??).

I think I need to find some little kids so I can do this stuff again... :lol:


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## mom2277 (Jan 3, 2014)

I'm so sorry to hear she's doubled over in pain.  Has the ER been helpful when she's had abdominal pain like that before?  Well, I'm assuming it's happened before.  Please keep us posted.  I really hope your sweet girl feels better very, very soon.


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## Sascot (Jan 3, 2014)

Sorry to hear that.  Hope it eases off and doesn't need a trip to ER


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## DustyKat (Jan 3, 2014)

Have thing settled at all for Grace? :ghug:

Dusty. xxx


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## Farmwife (Jan 3, 2014)

Yes, she's watching Tangled for the hundredth time.lol
She did ask for the medicine up her bum-bum. 
So apparently she's getting backed up again.:yrolleyes:
So I guess that can or could be the cause.
Time will tell I guess.


Then to top this day off. Grace sprained her ankle tonight.:yfaint:
Her ankle was already inflamed.:ymad:
Of course she's limping and asking to stay up late with daddy. :cool2:
So it's possible she's milking it.:lol2:


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## DustyKat (Jan 3, 2014)

Thank goodness things have settled but I hate it for you that it may now bring up issues for your little princess again. :ghug:

Thinking of you both. :heart:

Dusty. xxx


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## Farmwife (Jan 3, 2014)

Tesscorm said:


> Just an idea for her birthday...  can she eat jello?  If yes, you could make some dinosaur shaped jello desserts.  An old school project I made with my daughter just popped into my mind....  make pink jello in a flat pan (sort of a deep cookie sheet, a little less than an inch deep) and then, using dinosaur shaped cookie cutters, cut out dinosaur shapes from the hardened jello.
> 
> My daughter once did a medievel times project and we made stained glass 'sheets' from jello - I made a sheet of yellow jello, one of green, blue, red and then, with cookie cutters, cut out shapes from the jello sheets and interchanged into other colour sheets(ie cut out diamond shapes from blue and red and put blue diamond into red sheet, etc. - am I making sense??).
> 
> I think I need to find some little kids so I can do this stuff again... :lol:


Thanks for the ideas.
She can't have jello.:confused2:
She would love a stuffed dinosaur. Good idea.


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## my little penguin (Jan 3, 2014)

You can make" top=eight free" jello- I know a place to get you the recipe if you need- it


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## Farmwife (Jan 3, 2014)

Is the gelatin from beef???


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## my little penguin (Jan 3, 2014)

http://www.pennilessparenting.com/2012/06/homemade-jello-recipe-chemical-free.html


whole foods should have gelatin from other source than fish or beef
http://www.mnn.com/food/healthy-eating/blogs/how-to-make-vegan-jello

use a safe starch

http://allrecipes.com/recipe/vegan-gelatin/


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## DustyKat (Jan 3, 2014)

Gelatin is derived from many domesticated animal sources…beef, pigs, chicken, horses and also fish.


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## CrohnsKidMom (Jan 5, 2014)

Horses?!!!


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## DustyKat (Jan 6, 2014)

Yes.  :eek2:


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## Farmwife (Jan 9, 2014)

Fifth shot down.  wow time is going fast.
I am seeing some good already for her bm's. Now just to get the rest of her body to follow along.:ymad:

 The pharmacist said the bump I saw sounds like a injection site reaction. Not a systematic reaction. If it happens again I'll call the docs.

I also found a new GP for Grace. One doctor and a nurse practitioner will tag team her care.
I'm happy with the set up. We meet early next week. 
:confused2oor women, she won't know what hit her. I've got my folders, file, pictures and list of must haves to make her second guess taking as a patient.:ylol:

I'm continuing to just do smoothies at night for her dinner. Her nights seem less painful. Hopefully this mtx will start working better.


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## Jmrogers4 (Jan 9, 2014)

Hope it just continues to improve and no more reactions.
Hope the new GP also works out really well and glad they will be working together.  Jack's GI and GP are a floor apart in the same building they communicate regularly about Jack.


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## mom2277 (Jan 10, 2014)

Good luck with the new practitioners!  I'm glad Grace is at least showing some improvement with the mtx, and hope she shows a lot more improvement very soon.


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## Sascot (Jan 10, 2014)

Glad the tummy issues are getting better.  Good luck for the new GP, hope it goes well!!


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## Farmwife (Jan 10, 2014)

The bump is coming back at the new injection site.:ymad:
So for twenty four hours she had no reaction. Now the bump and if it asks like the last one it will get to about dime size and after a week fade away.
Does that sound normal? :yfaint:
 I'll talk to her allergist on Monday.


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## Catherine (Jan 10, 2014)

Would it show up in a photo?


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## DustyKat (Jan 11, 2014)

Circle area with a black marker so it shows up clearer in a photo and use an object or ruler placed next to it to denote size.


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## Farmwife (Jan 11, 2014)

The spot is still small. Maybe it will go away.

Yes Dusty, Grace has drawn circles on herself and tells me that she wants to make sure her freckles don't get bigger. Lol


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## CrohnsKidMom (Jan 11, 2014)

I would mention it to the dr, although if it's not bothering her and the MTX is working well, perhaps they'll just monitor it.  I don't know.  Could it be an issue with the needle size or something?  Seems unlikely, but maybe it's going in too far, or not far enough.  My son's have a beveled tip (but maybe they all do), and it's also noted that his are latex free.  Could there be latex in the plastic part that touches her skin that's causing the reaction?


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## my little penguin (Jan 11, 2014)

Most of the stopper in vials are made of latex as well.


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## Farmwife (Jan 11, 2014)

She's never had a reaction to latex. It doesn't mean she can't though.
Of course I notice her legs are starting to get dry and chaff. Meaning eczema is at the door.

Thanks


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## kimmidwife (Jan 12, 2014)

FW,
Maybe she is getting it just from having sensitive skin. One of my kids reacts to every little thing like that. I would mention it to the doctor though.


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## Farmwife (Jan 16, 2014)

So I'm a bundle of nerves again.:confused2:

She now has more pain in her spine. The rheumatologist called and said he still wants more time for the mtx to work but has asked that we put Grace on a ten day bust of prednisone and the keep her on 5 mg of prednisone for the next 7 weeks. He's hoping it's just enough to help her stabilize. 
Well........................ I said she has tested low in cortisol once and her new doc wants to make sure she doesn't have Addison disease. Then the doc said to get her labs done pronto and find out. 

She did labs this morning and now we wait. Her gp said if it comes back low again that more intense testing will have to happen. Great!

Also my son and her are getting vaccinated for the first times. So I'm even more worked up

:cool2:Off to drink my sorrows away.........Mt. dew of course.:ymad:


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## Suzysu (Jan 16, 2014)

Good luck with all the labs and the vaccinations xx


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## Sascot (Jan 16, 2014)

Thinking of you.  Hope the results come back quickly - hopefully she won't have to have loads of tests done and can just go on the Pred.


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## Jenn (Jan 16, 2014)

My son had lots of reactions to his infusion/injection/blood draw sites. It's calmed down a lot as he responded to treatment. We did determine he was having a reaction to the rubbing alcohol, so that could be it too. Does it respond to benadryl cream on it?


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## kimmidwife (Jan 16, 2014)

Good luck. Will be keeping my fingers crossed with you! How long until you get the results?


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## Farmwife (Jan 16, 2014)

I got them...not good.


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## CrohnsKidMom (Jan 16, 2014)

Oh dear.  I'm so sorry.  I'm praying for little Grace.


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## Maya142 (Jan 16, 2014)

Thinking of you and Grace:ghug:


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## Farmwife (Jan 17, 2014)

She can't walk this morning.  Legs hurts to much.
I take it's because of her vaccinations. 
Has this happen to your kids.


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## DanceMom (Jan 17, 2014)

A had her boosters in her arms but they were extremely sore that night and the following day.  She had the flu shot, pneumovax and dTp.  They even became red and swollen and she had a fever.  I gave Tylenol and she managed (though grumbled a lot, lol).  I think that is a pretty typical reaction.  Next time I will try Tylenol before and after the shots to see if it makes a difference.  

Hope Grace is feeling better soon!!


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## Farmwife (Jan 17, 2014)

Good to know DanceMom. Thanks


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## Farmwife (Jan 17, 2014)

To up date my journal...I mean thread.
Ended up at the docs this evening with Grace.
Still couldn't walk much and fever at a 103.
So her new docs said she needs to skip the mtx until the fever break.
So I know have a girl with swollen knees, hurting belly and one ticked off mom:ymad:
questioning the vaccine  decision.

Happy weekend y'all.:cool2:


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## my little penguin (Jan 17, 2014)

New Rheumo or ped???
Since the rhuemo prescribed you need to talk to them.

Fever from vaccinations is typically low grade ( not 103).
Plus a fever on immunosuppressants is an automatic call to the prescribing doc ( in this case rhuemo).
so they can decide if JIA is flaring causing the fever or illness or whatever. else...
and what to do about mtx.

Hope she feels better.


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## DanceMom (Jan 17, 2014)

What did they say about such a high fever? Our Rheumo just said the other day that A's fever of 100-101 was a typical reaction, but that a fever of 103 or higher would be considered a bad reaction. Are you giving Tylenol?


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## Farmwife (Jan 17, 2014)

Called rheumatologist. No call back. Doc tried. No call back.
I'll call again in the morning. I love our rheumatologist but he's never available and his nurses are crazy busy. He's the only one on this side of the state.

They gave her shots (5) in her legs. I'm hoping this is the reason for the increase pain but I know very well that this might have triggered JRA or IBD flare up. I hope to God that I'm being dramatic.
Her fever after meds is 100.7. So an improvement.

BTW the gp said it's not uncommon to get fevers that high from the flu shot.:yrolleyes:
But did say if her fever his a 104 to get her to the ER. :yfaint:


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## mom2277 (Jan 17, 2014)

Thinking of you and Grace.  I'm so sorry she's had so much difficulty lately.  I hope she feels better soon.  She's so lucky to have you as her advocate.


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## Jmrogers4 (Jan 17, 2014)

Just checking in hoping she was feeling better, sorry she is having such a hard time.  Hope you hear back from the doc first thing


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## Suzysu (Jan 18, 2014)

I hope things settle down soon and its a vaccine reaction rather than a flare of anything. Sending you big hugs xx


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## Farmwife (Jan 18, 2014)

Grace is better. Fever broke. Mtx shot given. Mom and son now sick.:yfaint:


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## mom2277 (Jan 18, 2014)

I'm thrilled that Grace's fever has broken.  But feel horrible that you and your son feel sick!  We've had some astonishingly luck with oscillococcimum.  I had never used homeopathic remedies and dare I say don't really believe in them.  A neighbor gave me a few capsules to try.  I took one on Day 1 of what seemed like the flu.  I was over it the same day.  I gave my children a capsule when they started what seemed like a very bad cold.  It was over the same day.  Lucky Vitamin has it the least expensive that I've been able to find.  

In any event, feel better soon!


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## Suzysu (Jan 18, 2014)

:getwell:
Hope you feel better soon xx


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## kimmidwife (Jan 18, 2014)

Hope you get well fast! I am shocked they gave her that many shots at once especially since she is on methotrexate an immune suppressant. I never let the docs give my kids more than one shot in a day. We also did very slow vaccination and spread them out way longer. I think a lot of the issues kids have with vaccination is from overwhelming the immune system. If she needs shots again in the future I would definitely talk to her doc about spacing them. Hope you guy are all feeling better fast!


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## Farmwife (Jan 19, 2014)

Trust me Kim, I'll NEVER do that again.:ymad:

:birthday2:My girl's birthday is Tuesday. Hard to believe she'll be five.tiara:


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## kimmidwife (Jan 19, 2014)

They grow so fast! I can't believe my baby is five and now she is finally sleeping in her own bed and not comming into mine. But I actually miss her! My baby is growing up!
Happy birthday Grace, you are getting so big!!! I hope she has the best birthday ever!


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## Farmwife (Jan 22, 2014)

Thanks Kim.
Grace's birthday went well.
Her party is coming soon so she's happy she has two birthdays.

Grace has started low dose prednisone therapy. Hopefully it will be a little push in the right direction

Gi wise, she only says her belly hurts. No poo problems and over all seems stable in the GI department. Hopefully we're on are way to remission.

Thanks everyone for listening and reading. I know the drama gets old and to tell you the truth it gets older faster for Grace and I.

I'm trying to take sometime away from the reading and researching. 
I knew it was bad when I had to double my ulcer meds.

So I hope y'all take care and I'll be checking in when I can.:ghug:

:bigwave:


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## DanceMom (Jan 22, 2014)

I'm glad Grace seems to be headed in the right direction.  I understand what you mean about wanting to take time away.  I want desperately to not feel the anxiety and pressure that I feel right now.  Coming here both relieves the anxiety and makes it worse, though I realize that sounds ridiculous. We just want what's best for our girls and hopefully mtx is the magic answer for us both.


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## mom2277 (Jan 22, 2014)

So glad to hear Grace's birthday party went well!  I hope she continues to feel better.  Best to you!


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## kimmidwife (Jan 22, 2014)

Glad she is doing a little better! Hope she has a great party!


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## DustyKat (Jan 23, 2014)

{hugs} to you both FW. :ghug: I hope the pred does the trick for your lass, bless her heart. :Karl: 

AND Happy 5th Birthday to your beautiful little princess! 







May both your birthday’s be filled with love and surprises! 

Dusty. :Flower:


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## Jmrogers4 (Jan 23, 2014)

Happy Birthday Princess Grace!
:bdayparty:
Hope you have a fantastic party and continue to feel better


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## Sascot (Jan 23, 2014)

Glad she had a good birthday - enjoy the party! 
:birthday2:


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## CrohnsKidMom (Jan 23, 2014)

Happy Birthday, Grace!  I am glad there has been some improvement!


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## Maya142 (Jan 23, 2014)

:birthday2: Grace! Hope she enjoys her party! So glad to hear she's feeling a bit better!


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## dannysmom (Jan 24, 2014)

Happy 5th Birthday Grace!!


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## Farmwife (Jan 24, 2014)

Party cancelled. :ymad:Worst storm in decades. She's so bummed. We rescheduled the party for a couple weeks from now. To a five year old it seems like next year.



:yrolleyes:So I'm sitting trapped in my home and I said I won't do anymore researching for awhile.:yfaint:


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## crohnsinct (Jan 24, 2014)

Oh No!  Poor Grace! :voodoo::voodoo::voodoo:

Silver Lining = A whole cake to yourself! :ylol::dance::tongue:


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## Catherine (Jan 24, 2014)

No just have go ahead with those trapped the house with you.  Then with the rescheduled party that would be 3 birthday celebration for Grace.


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## Sascot (Jan 25, 2014)

What a shame!  I agree - make the boys get dressed up and have a princess tea :lol2:


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## Suzysu (Jan 25, 2014)

Oh noooooooooooooooo poor grace, I agree with everyone else you should go ahead with a mini party while trapped at least it will pass the time!!!! Xx


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## Farmwife (Jan 25, 2014)

:facepalm:The crushed soul and spirit of my five year old was revived by her father buying her a beautiful flower arrangement.

My hubby buys me flowers.......well I tell him too.:ymad:

Oh, she also has requested dad buy new flowers for her new party.:yfaint:


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## kimmidwife (Jan 25, 2014)

Sorry to hear about the party! Hopefully the flowers helped and the rescheduled one will be awesome!


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## polly13 (Jan 26, 2014)

Sorry to hear about the party and the storm.  Really glad grace is feeling better- happy birthday


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## mom2277 (Jan 26, 2014)

I'm so, so sorry about having to reschedule the party.  That's the last thing I would want Grace to have to endure.  I do vote, though, for a party today and a party 3 weeks from now.  Glad her daddy bought her flowers.  Sounds like a gem of a dad.


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## Farmwife (Feb 18, 2014)

Hi all,

Grace started Humira and she's still struggles with pain somewhere. 
However she just started, so time will tell.

We had her party and it was SO MUCH FUN.
 She was happy and running her little legs off.
 She got all the princess stuff in our town. lol

I'm having computer problems and to tell you the truth I've enjoyed the quiet and almost Amish life. Still it will be nice to have my computer back.

I hope all is well.
Hugs


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## Sascot (Feb 18, 2014)

Glad she had a great party. You can't beat lots of princess stuff - quite sad we have moved past that! Hope the Humira works


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## Farmwife (Mar 7, 2014)

*HELP ANYONE!*
Grace is having normal BM's. Today she had two BM's. That's awesome.
 It's been along time (1 yr) since she's been normal in this area. YA HUMIRA!!!:dusty:

BUT

Her tummy (abdominal) pains are the worst it's been in a year. I had to give two pain meds for the cramping to stop. 
She walked through the grocery store with her hand on her belly the whole time.

I'm so happy the BM's are coming but why all this pain now?


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## araceli (Mar 7, 2014)

No idea but hopefully is just gas.


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## my little penguin (Mar 7, 2014)

ABX are a double edge sword.
they help DS have "normal" BM's without miralax BUT... they cause cramping since they speed up the system
which is why normal crohn's kids get runny D with abx but constipated crohn's kids "GO normal"


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## crohniekid (Mar 7, 2014)

No words of wisdom from me (you are all light years ahead in that department) but hope she feels better soon!


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## Farmwife (Mar 7, 2014)

MLP what is ABX?:yfaint:


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## my little penguin (Mar 7, 2014)

The antibiotics she took for her double ear infection


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## Farmwife (Mar 7, 2014)

Thanks, I'm calm now. :smile:Makes sence.

I'll go drink.....Mt.Dew now:yfaint:


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## Maya142 (Mar 7, 2014)

Antibiotics did that to my daughter - she went from being constipated to having watery diarrhea and crampy pain. And then she got CDiff from the antibiotics, just to make things even more interesting than usual :ybatty:


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## Farmwife (Mar 7, 2014)

Maya142 said:


> Antibiotics did that to my daughter - she went from being constipated to having watery diarrhea and crampy pain. *And then she got CDiff from the antibiotics, just to make things even more interesting than usual *:ybatty:


She's already had that. She's not aloud to get it AGAIN.:ymad:


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## Maya142 (Mar 7, 2014)

This was just that one time in the winter - she's not such an overachiever  (…yet!).
Hope Grace starts feeling better soon! Would a heating pad help her belly pain?


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## Suzysu (Mar 8, 2014)

Yay for normal poo!! Maybe her body is just not used to the feeling of solids passing through? Is there any mucus or blood?


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## Farmwife (Mar 9, 2014)

Well no antibiotic today and it was the best day she's had in awhile.:rosette1:

I know they were causing her tummy problems.:ymad:


Can antibiotics cause joint pains?


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## Sascot (Mar 10, 2014)

Glad she is feeling better off the antibiotics. Not sure about joint pains, I suppose it is possible since it will affect the whole body.


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## Farmwife (Mar 14, 2014)

Just an update.

Grace received her third Humira shot and I'm hoping that she's heading in the right direction. 
It seems her joint pain is easing a bit and she just looks healthier. :ybiggrin:
We also were given the ok to start the wean her off of pred. :thumright:

I guess the thing she's dealing with (again) is constipation and nausea.:ymad: 
Hopefully that will be fixed when the drugs kick in more.

I hope y'all have a good week-end.


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## Maya142 (Mar 14, 2014)

Very glad to hear her joints are a better. Hope these miracle drugs for her and she can get back to being a princess!


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## Jane and Nick (Mar 15, 2014)

Good luck, hope it all goes well. You both deserve a break.


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