Saturday, January 13, 2007

It's already Saturday??? Where did the week go?? We had our usual OT, Speech and PT... we go to the Nutritionist this week coming up. Just a couple tidbits for my WS mommies out there, any insight is appreciated...

Some interesting notes from OT and PT. We had a dual session this week, where they worked together with Brady comparing notes. Our OT Tara is always shortchanged because Brady is always sleeping when she comes over. We end up chatting a lot, but it has actually been some of the most help. A lot of what we discuss is sensory related and we are all agreeing that Brady has more sensory issues than first thought. For example, the brushing has helped Brady immensely... even though we have fallen off track a bit with it. For those who do the brushing as well, you may understand how it is easy to get sidetracked off it. I do resolve to do better with it, as it always given us great results.

I have spoken about the possibility of Brady having a type of Reflux that is more internal - meaning he doesn't spit up but he still has the same problems as others who do. I took him off any Reflux-agitating foods (tomato, banana, etc) and we did start Zantac two weeks ago. Well... the Zantac made him constipated. I gave him a full week on it to see if it helped him with eating (if the Zantac helped aid in the Reflux then the chances of Brady eating better were very possible). I didn't see any signs of Brady eating better while on the Zantac, plus it made him constipated, which also could be a readon why he didn't eat great.

Brady does seem to gag while eating food; I have to rub his cheek to remind him to chew even when I present the food to the side of his mouth. He moves the food right to the center of his tongue and gags. He didn't used to do this - he used to eat better last fall. The pediatrician had already thought he might have Reflux, and this gagging would also fall under the same reasoning. I had to try the Zantac to see if it would help since the signs seemed to be pointing in that direction.

All Brady's therapists believe he has major sensory issues with his tongue. That's nothing new. But the gagging could be related to that moreso than Reflux. OT suggested using a tongue depresser on his tongue to help desensitize his tongue. He loves the Nuk and the toothbrush, which our ST said because he loves the harder textures. On the WS forum, one mother stated she gives her 11-month old solid food because they figured out she didn't like the smooth texture of the baby food. It was a like a lightbulb went off for me.

The other new thing was that Brady's PT and OT are requesting xrays from his wrists to shoulder on both arms and his hips. He can't turn his forearms up (bring his palms straight up, like you're getting Communion) and cries whenever he is being stretched there. They want to rule out that there's anything there that's preventing him from turning, like a muscle, so they know they aren't hurting him when stretching him out. They think he's probably fine because he can do the opposite stretch. Same for his hips. When we go to the Nutritionist at Children's Hospital we'll get those done plus his calcium testing to make sure we're on track. Last time we did that his calcium had gone down and I predict the same will happen.

Ooh.. one more new thing! He will play with his toy car while sitting at his high chair! I thought he was just trying to pick it up, but he wasn't - he was moving it back and forth with both hands. Such a small feat, but I smiled a bit to myself because I knew it was a big deal. Unfortunately, I did notice he eats better sitting in his Bumba in the living room. Don't think I'll have to worry about him getting obese in front of the TV....


Nancy said...

I am the Reflux Queen. We have been through it all - x-rays, barium, severe reaction to reflux medicine, elevation of the head at night, special diet, etc. etc. Erik NEVER was a kid to spit up but had SEVERE reflux and still does to this day. He smelled like a battery when he was tiny and had burns all over his chin from the acid in his drool.

We are on Prilosec twice a day now, and the problem is under control. Keep trying medicine...the diet thing might not work if you are trying to keep calories in him and your menu is limited.

Just wait until Brady does the little "vroom vroom" noise with the car. Oh, and don't forget the motorboat ("BRRRRRRRRRRRRRRRPPPRRRR").

Hang in there.

Amy K said...

I went through a stage were I was convinced Avery had reflux because her eating was not advancing. While I never had her tested because she showed no sighs other than not eating, I think what it really is is that with baby food it slides down the back of the throat like liquid, so not a lot of gagging. So when you move to the thicker textures the sensory issues become more apparent to them. I also think as they have more ability they struggle more and feel out of control, get scared, and gag. Also, Avery hates sensations on her lower arms, on the inside. Could the crying be that he is hypersensitive to touch in that area? Just some things to think about if you don't see anything medical pop up.

Keep up the good work!

Nicole said...

Isn't this stuff complex??!!! I am also constantly deciphering "reflux, calcium, sensory, oh my!, reflux, calcium, sensory, oh my!!" I, like you, wish I had more clear cut answers. We just took Emerson off her zantac because she had been on it since she was 4 months old and before we had a diagnosis. We tried zantac just to see if it would make her stop crying. I haven't noticed any change in her since we stopped. She eats and drinks the same. Her sleep has been kind of crappy lately, but it seems like we all battle that with these kids. Anyway, we are in the same boat trying to navigate through all of this. I wish you luck and hope you get some answers.