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When Grace was 5 and 6 she said her EO28 Splash tasted like sweat carrots left out to long in the barn. :yfaint: :ylol:WHAT:ylol: Where do kids get this from. :shifty-t:

I had tmj. I ended up having the surgery to realign the jaw. It's obvious I probably have eds but haven't gone to the doc yet. That's a good point and will text her rheumatologist to ask what they think? Mri is to rule out chiari or tethered cord.

Good news, no visible damage on the xray in her neck.:dance: Now onto a mri for her. Still daily headaches. Her medication doesn't seem to help much. :voodoo: I've ordered the school stuff and Im more excited than the kids. Lol Grace just want to get a laptop.:D I don't think she...

Xrays first because insurance makes us and then onto mri.

Thanks Maya. You and mlp should write medical papers for parents. Lol Ironically I'm waiting to get Grace's neck xrays right now. The list on her paper says...... JIA (juvenile idiopathic arthritis) enthesitis related arthritis (HCC) And Other inflammatory spondylopathies And EDS...

Lol, my twin and I use to pull so much stuff:yfaint:....... it's probably best I not tell you. LOL My girl also loves her infusion because she gets spoiled rotten. She also likes all the doctor's appointments because she knows that will stop at the gift shop and maybe buy her something (oh...

Sorry mlp. Still trying to learn about all the ins and outs of JIA. Thanks for the info. So if the xrays show damage in her neck and her rheumatologist deems it arthritis, than its called JSpA? I think she already has that on one of her dx pages. Good grief I can't keep up.

That's good to hear but not about the uti.:voodoo: One thing I would have done before the first urologist appointment would have been to do a Void Diary. It's an outline on how much urine output and symptoms. I feel we waisted time trying this. If they would have just told us while we...

Thanks everyone. I'm using the same curriculum that the private school used. Hopefully that will make the change smother for my two. I'm still surprised how encouraging the doctors have been. Even going so far as to say that is probably the best for Grace. :ywow: Good grief, that's not the...

How is she now?

She was receiving 10 every 4 weeks but now it will be 5 every 2 weeks. However, rheumatologist will ask insurance to approve 6.5 every two. That way we can play a little bit. Ya, insurance should be fun.

I'll try to explain best I can to what they told me. In kids like Grace they feel they go thru/burn Remicade to fast. Instead of lasting 4 weeks they only last 2 and then nose dive down for two weeks So a bad cycle starts acting like a roller coaster. Up and down, never allowing the body to...

Wanted to add that remicade given every two weeks is because of her jia not ibd! Rheumatologist use Remicade differently for jia.

Some good news:dusty::dance::dusty::dance: Meant with the GI yesterday and...... All looks well with Grace. Last stool test looked good, no blood in bms, no cramps, appetite is OK and labs look good. She has now reached over 4 foot. Her weight is good and stable. We plan to scope again in a...

Grace sees a urologist specialist. They're best at helping with this. When you say "tremors" is it her whole body or mainly her arms? Is her tremors more like a shaking (lilke when we get to cold)? I have tremors occasionally. They came on after giving birth. :yfaint:

Grace did 1mg of folic acid every day.

Also, work with her on not pushing so hard. There is a chance that the rectum could prolapse. I've lived through that you don't want to see it. I use to use a warm bottle to squirt on the area while she was pushing. Sitz bath are awesome too. You can buy these. Distraction is helpful, I...

Yes, I heard that with my kid when she was 2 and 3. "Can't be ibd, she doesn't have diarrhea". She was dx 3 (almost 4 years of age). With the family history of ibd, I would get it checked. If they won't listen, go else where.

Lol, yup. That's what Grace had. Its called by most IC because interstitial cystitis is just to long to say.:ybiggrin:

:dusty: So happy for you guys! :dusty: Don't even get me started on the insanity of insurance companies. :ack: Ours will cover formula long term if she has a gtube but only temporary with an ng tube.