MTX and maybe Humira for The Little Farm Girl

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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
 
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.
 
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:
 
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.
 
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?
 
She can't walk this morning. Legs hurts to much.
I take it's because of her vaccinations.
Has this happen to your kids.
 
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!!
 
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.:eek:
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::eek:
 
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.
 
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?
 
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:
 
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.
 
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
 
I hope things settle down soon and its a vaccine reaction rather than a flare of anything. Sending you big hugs xx
 
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!
 
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!
 
Trust me Kim, I'll NEVER do that again.:ymad:

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

belated-birthday-2.gif


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

Dusty. :Flower:
 
:birthday2: Grace! Hope she enjoys her party! So glad to hear she's feeling a bit better!
 
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:
 
Oh No! Poor Grace! :voodoo::voodoo::voodoo:

Silver Lining = A whole cake to yourself! :ylol::dance::tongue:
 
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.
 
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
 
: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:
 
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.
 
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
 
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
 
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.
:cry: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?
 
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"
 
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:
 
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:
Click to expand...

She's already had that. She's not aloud to get it AGAIN.:ymad:
 
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?
 
Yay for normal poo!! Maybe her body is just not used to the feeling of solids passing through? Is there any mucus or blood?
 
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?
 
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.
 
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.
 
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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