Posey Plays: a little update!

[Momto2girls]

In case anyone missed my other thread, I started a little blog for kids (and parents) with medical issues. (www.poseyplays.com) I did some fun graphics for little ones with towers (from either feeding tubes, or IVs or anything really!) The girl version is a Rapunzel-style princess tower (inspired by FW's Grace, of course!) and the boy version is a pirate-style lookout tower. They are free for anyone here who might want them -- so feel free to share the link anywhere -- with anyone who might benefit. I want any kids brave enough to need a tower to get to decorate it!

Also, I've been writing a bit about "Posey" and nutrition, and I have a free printable "take your medicine chart" and I am also still open to other suggestions!

All of your encouragement here has been wonderful!

And an update on "Posey" -- the sulfasalazine is working WONDERS!!!!! It is a MIRACLE -- truly. She is waking up in the morning singing (rather than doubled over in pain), she had a normal bm yesterday, and she's a whole different kiddo!! Woo hoo!

 

[Sascot]

Great news, so glad she is feeling better!!

 

[Momto2girls]

Oh! I was going to show a picture -- duh! (And FW said she'd share with us a pic of the personalized one for Grace when she gets new camera batteries).

(Ok, I guess I don't know how to insert an image)

 

[Jmrogers4]

So glad she is feeling good, that is great news :rosette1:

 

[Momto2girls]

It is SO interesting b/c it took about a week and I noticed the abdominal pain was SO MUCH better and then a few more days and a good bm. I wonder if the improvement (especially since it is the second time with success on this medication in a year) can tell us anything about her condition? Would plain old functional gut/IBS improve with sulfasalazine?

Also, her breathing could even be a bit better. It is hard to tell if it is the asthma meds or the sulfasalazine, but the first week of the asthma meds it wasn't better.

Here's something I've been wondering about -- at the time of her scope she had gastritis in her stomach and H. Pylori -- which was mild and never treated. The one thing the second GI doc said was that the H. Pylori may have appeared more mild than it really is b/c at the time of the scope she was on Zantac. Well, she went off the Zantac back in Aug. I wonder if the gastritis and/or H. Pylori could be causing reflux and/or the symptom of distress in her chest? And would sulfasalazine treat the gastritis at all?

I realize I have to check with the new ped/GI on that, but just something I've been wondering.

 

[Devynnsmom]

That is AWESOME!! Devynn is also doing wonderful on Sulfasalazine. I didn't want to really say it too soon, because I didn't want to jinx her lol But I think its safe now

 

[Momto2girls]

Devynsmom -- have they said how long she'll be on it? Indefinitely? And they think that's OK?

 

[my little penguin]

Most stay on an Ibd drug until it stops working or they come up with something better .
Typically the drug stops working well before you want to try something else .

 

[Devynnsmom]

They haven't said. I'm assuming as long as it keeps working. She was on Pentasa for about 18 mos before that stopped working. I'm hoping it works for a long time.

 

[Devynnsmom]

They said it is a very mild drug, and that it was originally used for arthritis, but studies found patients with IBD were improving.

 

[jmckinley]

I know that whe Ryan was on sulfasalazine, the GI said it works best on the small intestine.

On another note, the veterinarian gives our dog sulfasalazine for gastritis.

 

[Momto2girls]

Hmmm...that is interesting. Maybe it means Gracie is a DOG!? I am kind of tired of trying to speculate, I guess, ya know!?

 

[kimmidwife]

I am so glad to hear it is working for your daughter and Devynn too! It is so nice to hear good news. Devynn's Mom I so know what you mean about being afraid of a jinx. I always feel the same way!

 

[Devynnsmom]

Thank you Kim

 

[Momto2girls]

So I am not saying I spoke too soon...but...she had the good movement and then a day with no BM and then yesterday another good BM but it was flat. I read flat could mean inflammation? I guess I haven't seen a formed stool in so long I was like yay and then wait that is odd? Anyway she's been up twice already tonight. No specific complaints and I try not to ask her in the middle of the night as I try to stay quiet and get her back to sleep. Oh well. We see new ped this morning!

 

[Farmwife]

Flat stool could mean impaction. Grace would also get pencil thin also. Is she on miralax?

 

[Devynnsmom]

Good luck with the new ped. I don't think we have experienced a flat bm.

 

[Momto2girls]

FW -- she is on miralax -- a capful a day. In my past experience from her impactions she usually has D but maybe this is impaction with meds?

So, this morning she said that last night she had a headache so bad she couldn't sit up. (??!?!?) She said she tried licking her hand and rubbing it on her forehead to make it feel better but it didn't help. She said she still has a headache this morning.

I guess it is a good thing we're going to the doc.

 

[Devynnsmom]

Aww poor sweetie Hope the headache goes away.