MTX and maybe Humira for The Little Farm Girl

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Farmwife

Farmwife

Joined
Apr 28, 2012
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Rheumatologist Dx Grace with JRA today.:confused2:
The doc said it was serious enough that she started MTX right then and there.:eek:
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:
 
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.
 
: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
 
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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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!!
 
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.
 
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.
 
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:
 
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:
 
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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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.
 
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.
 
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.
 
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!
 
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.
 
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
 
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
 
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:
 
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
Click to expand...

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.
 
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:
Click to expand...

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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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.
 
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.
 
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?:eek: I wouldn't put it past Grace, she's always been an over achiever.:yfaint:
 
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.
 
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.
 
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.
 
Maya142 said:
Did the rheumatologist say what kind of juvenile arthritis she has?
Click to expand...

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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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.
 
: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!:eek:

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

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.
 
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!
Click to expand...

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

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:
 
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!!!!!
 
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.
 
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.)
 
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?
 
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.
 
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:
 
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.
 
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.)
Click to expand...

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.:eek:
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:
 
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.
 
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.
 
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?
Click to expand...

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?
 
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.
 
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.
 
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.
 
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 .
 
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.
 
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
 
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?
 
By teeth pain, do you mean jaw pain?
Glad mtx seems to be doing something!
 
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. :eek:
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?
 
Another new year comes to an end.
What a year. :eek:
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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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
 
Happy new year! Hope this year brings you a treatment plan that can give Grace mostly good days. Hope your boy feels better too.
 
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.;)
 
Wow, 5 yrs old! Good luck with the party :lol2:. I made a 3 tier wedding cake once, it was certainly an experience!
 
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!
 
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!! :D
 
:eek:I can imagine the fairies hiding for there dear little life's :confused2:eek:n 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.
 
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!

pink dinosaurs.jpg
 
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:
 
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.
 
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:
 
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
 
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:
Click to expand...

Thanks for the ideas.
She can't have jello.:confused2:
She would love a stuffed dinosaur. Good idea.
 
Gelatin is derived from many domesticated animal sources…beef, pigs, chicken, horses and also fish. :eek:
 
Fifth shot down. :eek: 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.
:confused2:poor 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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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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