The Little Farm Girl, LDN, Full EEN & Mayo Clinic

[Farmwife]

Yes both docs are at the same hospital. I'm assuming 6MP also. The rheumy has always felt the joint pains are an EIM also. Her GI never thought that. Could that have change, I guess I'll find out when the GI calls. This will be a fun conversation.

Making some calls NOW for a new GP for Grace.

When getting a new GP, how did you fill that doctor in on your child's back ground?I was thinking about getting letters from her specialists stating her dx's.
Pre-sending the info before or appointment.
ANYTHING ELSE?

 

[Tesscorm]

When we switched Stephen's GPs, I made copies of EVERYTHING in my binder. I had it sorted by:

1. Pre and at diagnosis info - doctors notes, admission notes, etc.
2. Labwork
3. Imaging and scope results (as S only had rheumi related tests/apptmt at diagnosis, I included his x-ray results in this 'group' - but, as you probably have more info from other specialists, I would 'bundle' that information separately).
4. Other - ie copies of summaries from GI to previous GP (and whatever else I have..)

I gave an explanation of what had gone on with Stephen and a quick summary of the 'library' I was giving him :lol: and explained that I was giving him 'everything' and I'd leave it up to him to throw out anything he didn't need.

To be honest, I'm sure I gave him way more than he needed but... as I don't know what might have been of importance/interest to him, I just gave it all.

 

[Farmwife]

So basically the folder I made for Mayo. Good I still have it. YA!
Thanks Tess

 

[polly13]

Lucy and grace have different presentations so our experience may not reflective of what yours will be like. Lucy was on 6 mp for a year - firstly on its own, then with flagyll and cipro and then with infliximab. While her symptoms improved sporadically while on flagyll and infliximab the GI (and I agree) thinks 6 mp had no positive benefit in relation to the crohns. While she was taking it she had no side effects and her blood work was always fine.
She took 6 mp daily in liquid form.
After Lucy failed infliximab the GI switched her to humira and methotrexate - he is using methotrexate as a conduit to the humira as opposed to a treatment for the crohns - if that makes sense. She takes it in tablet form once a week and is tolerating it very well. She did have some mouth ulcers about two months ago but since then she has been fine.

I would probably go with what the GI is suggesting as he is treating her primary condition.

These are really difficult decision, don't underestimate how stressfull they are so mind yourself too. Hope grace is doing better

Polly

 

[Farmwife]

Both my daughters have a form of juvenile arthritis and their biggest complaint is pain when sitting for long periods of time. They both have 504s and one of their accommodations is extra breaks so they can get up and walk around in long exams. Pain that gets better with movement is one of the characteristics of inflammatory arthritis.
Hope she feels better soon!

Thanks to Maya and MLP,

I received a letter from Grace's rheumy that's for her teacher.
In this letter is states recommendations for the school to allow (sweet, I didn't even ask them to do it).
It also says the reason why, possible juvenile arthritis.
Wow, were they going to tell ME! :ybatty:
I mean we "the forum" :ghugMaya and MLP) already put it together but it would have been nice to hear it from them.

Update:
Grace put herself to sleep. Fatigue setting in again.

 

[Maya142]

Really sorry to hear that, but glad she's getting the accommodations she needs. For what it's worth, both my daughters have been on Methotrexate. My younger daughter couldn't tolerate the side effects (severe nausea and dizziness) but most kids tolerate it well. It helped her a LOT though so we were really sad to give it up. We might even try it a third time if we have to!
My older daughter has been on it for 2 years, absolutely no problems - it really helps her joint pain.
Good luck!

 

[Farmwife]

This is for my farm boy.
What can cause 8 hrs of cramping and diarrhea and then 5 days of no BM's?
Since having a bm today the cramping has started again.
No viruses afflicting us right now.

 

[Rocking on]

Sounds like a stricture. All that inflammation and scarring builds up and closes the anus. You still have all the pain but it's even worse because you cant release. I go in for dilation procedures a couple times a year. Basically they sedate me and, well, go at it with the medical equivalent of a dildo. That stretches out the stricture and allows me to release again.

 

[Farmwife]

Thanks Rocking on BUT this is my boy. He's not dx with IBD..............yet.
Ironically he's the one that you would consider more text book of IBD but yet his sister has it. Go figure, KIDS.

His doc is keeping a close eye on him. His sed rate was elevated last draw. We shall see.

 

[Naturelover]

Goodness gracious! When it rains, it pours!
Hugs to all!:ghug:

 

[Niks]

How is your boy now??

Did you all manage to have a good Christmas?? Xx

 

[Farmwife]

It's sad to say but with him I'm taking a wait and see approach.:yrolleyes:
His stomach pains are increasing (but not horrible) even though he's been on a PPI for 6 months.
Can't gain weight and not growing as fast as before. He has a doc apt. soon and will ask for labs again. Other than the stomach, weight and growth he's doing GOOD.:yfaint:

Thanks for asking.

For Christmas my son got a HUGE army set. Complete with tanks, soldiers, planes, bad guys and a 1000 tiny pieces for ammo and such.:yfaint:

So needless to say we've had a lot of battles and screams of despair as the "bad guys" have kidnapped Grace's dolls.:devil:
But don't worry GI Joes comes to the rescue.:lol2: