Friday, January 17, 2014

Getting tense

So...what happened with the care conference yesterday? I guess my expectations were too high! What was I hoping for? I can honestly say, a miracle (my girl deserves no less)! I was hoping that by getting all of these great minds together all for the sake of Reagan, that someone would come up with something novel. Something we've never thought about, a test, a trigger for what might be causing these bad days. Now, granted, I was not there so I don't really know what all came up (which I feel was a huge mistake...they should have allowed us in there to keep them on task and clarify as needed), but based on what palliative care (and GI) told us this morning, I'm unimpressed. The tests recommended were all things we've already discussed. I don't know. I don't feel like we even have much of a plan. All of their hopes are resting on the shoulders of Lyrica controlling her bad days! And while I feel migraines are a very real possibility for some of the pain she experiences on a bad day, it doesn't explain everything! (And so far we've seen no difference since starting it, except for some weird arm movements!) Why did her bad days/nausea go away when she was on that low calorie formula? There has to be a GI component to all of this! Ugh. I'm just so frustrated! On a good note, my girl had another good day today. She slept well last night, so well, she was still asleep this morning and we woke her up trying to get her into the car! We had to take her brother with us to this appt (because grandpa has been sick with the flu) and boy was that a big mistake! He's a mad man! It's very difficult to have a conversation with doctors when your toddler is fussing and hanging off you (literally, he was hanging from my feet)! Anywho, I was not super impressed but we've got a slew of tests to schedule (including a gastric emptying scan, endoscopy, ph probe, and swallow study) and in the meantime we're gonna try the only elemental formula she hasn't tried...Elecare jr. The honeymoon phase on the pediatric compleat has come to an end and now we're hoping maybe something new will help her to go back in the right direction. The GI also had another other idea about trying a g-tube for a bit instead of the gj, but I'm very nervous about that and really don't think it would work, but we'll see. After the appt we came back home and Reagan had a joint session with OT and speech to get the hang of using her eyegaze device. Then late afternoon she had a make up session with her teacher. She did well with everything, but I did notice that she was markedly tense in her body. Picking her up was like picking up a board! She was also a lot more serious all day...definitely not the smiley laid back girl from earlier in the week. I'll admit, all of this has me a bit nervous. Today is day 5 of good days, and her last two cycles have been 6 days on, 6 days off! We always hope for the best, hope the signs we're seeing are just false alarms (and sometimes they are), but more times than not they are foreshadowing for what's to come. Please keep our girl in your prayers! We need a mild streak this go round! 


Clarissa said...

Abigail has been on Elecare for years... I think 4 years! It was switched to Elecare Jr. A couple of years ago when they came up with that (though its no different that I can tell in ingredients/ nutrition).... but maybe it has been part of keeping her more stable (instead of in a cycle of 2 good/5 bad days which was what she was mostly doing for years!)... now her bad days are random and maybe 1 day a week (but she still has additional days of increased vomiting).
I'd be very nervous about feeding thru a g tube with Abigail too.
I do think a lot of Abigail's pain and bad days are GI related, but do wonder about migraines too.
Oh man... it feels like we go in circles with our girls and their doctors hey?? :(

Diane said...

Have you guys already tried digestive enzymes? (guessing you have) Creon is a prescription one that helps with digesting fats, carbs etc.. You can buy over the counter as well(you can get them either in a combo or singular for fats,carbs etc)- we cannot with Abby(her whole "my body hates anything in a pill form " thing.) but I know many with undefined GI issues have benefitted? Abby does best with low calorie - just barely enough to maintain her weight. She has a lot pancreas "like" pain (extreme pain that leaves her balled up in her bed and miserable as well as it can aggravate constipation and malabsorption)and clearly struggles with fats,proteins, and fiber- I know if Abby could tolerate a digestive enzyme it might help her.

Hugs- I was hoping for a lot more for Reagan too- I know the type of thoughtful care is out there, maybe as they get to know her pattern better their think tank will improve and come up with more?

Worse thing is getting excited about the possibility of more help and being disappointed.