Originally Posted by ilovejeff
Good luck with the GI doc for your son. It's hard to find a good one. I've seen a couple and they never seem to have answers. I kind of feel like they want to put everyone in the same box, you know? I hope the new one you're seeing is one of the good ones!
Originally Posted by octobermoon
YAY a chat!
2boyzmama i hope the new doctor works out for you. it is an encouragement to me that you are so proactive when it comes to finding the care you want for you LO.
Thanks guys. Gastro has been difficult for us...he was failure to thrive with *severe* reflux as a newborn/infant, and the drs just wanted to medicate and wait. I'm not against medicating, obviously something had to be done quickly, but I wanted to look for the underlying *cause* (silly me!), like food allergies (hmm...turned out he's got a dairy and soy protein sensitivity). Then we discovered he was aspirating badly and had severe dysphagia, which led them to recommend a g-tube, which again I'm not against, but I wanted to determine if there was a safe way to keep him on oral feeds. They thought I was nuts. I got a really good pulmonologist, did lung function tests, and he's been on oral feeds ever since. I also weaned him off his relux meds shortly after cutting dairy and soy from my diet. Go figure.
But, even with all that, he's only 21 pounds at 2 years old. He's TINY! Small stature is common in his syndrome, but he's among the smallest. So we have to figure out what's going on. Maybe another allergy? Maybe malabsorption? (can you believe he was never tested for that?) Maybe something metabolic? Hopefully this new dr will actually listen to me and agree to do more testing. We'll see.
Originally Posted by Julia24
You know, Samantha~ I have a good friend from my first dd's board who's daughter had CAS...You'd absolutely NEVER know it now, though. She used EXTENSIVE signing with her, and she had lots of ot and pt and she speaks perfectly now (at 7 and 1st grade). Just so you know, you'll get him through this! Her OT recommended lots of peanut butter, licorice, anything chewy and gummy that made her excercise her mouth muscles.
Yes, his STs and OTs have recommended that as well, but we have to be careful because he has dysphagia with aspiration also. He "loses" food in his mouth and chokes a lot. We also do a lot of sour and spicey foods to get him more aware of his mouth. He had lip repair surgery at 11 months old, but still has very little movement of his upper lip, plus his tongue doesn't quite move right, plus his hard palate is malformed and his soft palate is somewhat static. So poor guy has all that to contend with, too!! Add to it a neurological block of some kind, and he's got a big mountain to climb for speech development! But he's responding really well to ASL (has about 90 signs!) and we're research Assistive Communication Devices for him as he approaches school age (he starts preschool in a year!).
It's good to hear of success stories, though!!
Originally Posted by dosergirl
i was able to weigh myself at someones house this weekend and have learned that i have gained not one pound. of course this is not my doctors scale but the weight was right on the mark for what my weight was 5 weeks ago. sigh. oh well.
also craving lots of fruits and veggies, which doesn't help with putting on pounds.
also i have had a pain in my side almost all day! i don't know what it is...side towards the back on the left on my ribs and it feels a little better when i push really hard on it. with my thumb.
i can't wait for monday to be over
First of all, don't worry about your weight gain. Take your vitamins to make sure you're getting your nutrients, and trust that the baby is getting his/hers.
I wasn't into the positives with my first pregnancy until sometime between 16-20 weeks thanks to morning sickness
And keep eating the fruits and veggies! Just maybe consider adding some calorie and nutrient dense foods to them...peanut butter, cheese, yogurt, etc.
Weird about your side pain. I had some side pain, a little different than what you're describing though, during my first pregnancy. My dr tested me for a UTI (thinking I was developing a kidney infection perhaps) but it was negative, so she said maybe the baby was kicking my kidney! No idea what it really was, but I do remember it annoying me. Hang in there!!