DD's Story Dysphagia

It's not over yet...I had been worried since DD started on solids. For some reason it seemed like she couldn't swallow them. She even got choked on those melting cheerios. You know, the Graduates ones that are supposed to melt in their mouth. And this was at a year old. Time after time I would ask the doctor what is wrong. They would say, "I think she will be fine as long as she is not turning blue or anything." Finally, at her one year check up, I asked again. This time, I found some answers. They looked back in her chart and saw that I had been concerned about it for awhile, so they set her up a swallow study so they could see what was going on. She had to see a specialist, a speech therapist. I took her to T.C. Thompson and when they brought her to the back, they put a yellow slip over her clothes. They set her up in a seat with a belt. It sort of looked like a car seat. She didn't like that I couldn't hold her, so she went to screaming for me. But we gave her some toys to keep her calm. They asked all sorts of questions about how long she had been choking and what she usually had problems with. They asked what she drink out of and what her favorite foods were. Finally, a lady came out and started making Sami a drink. It had something in it. It looked like a paste, but it was that stuff that made it easier to be seen on the xray. The test they did was called a Barium-Swallow. They saw that she was "aspirating" and went to work. They said that meant that what she drink was going into her lungs when she swallowed and part of it was going into her voice box. They were really concerned, so they started testing different thickness for her drink using a product called Thick It. It is just a powder that you mix in making the liquid thicker and easier to swallow. Sami didn't seem to mind. She just got mad when they took her cup away to make it thicker. They were making a video of everything so that they could go back over it later. The only thing I didn't like is I wasn't allowed to watch because I had to keep her facing forward. They said they would let me watch the video afterward so I could see what was going on, but they didn't. After they made their final conclusions, they decided to diagnose her with Dysphagia. (Her muscles are not registering like they should when she swallows.) They told me how much Thick It I would need to start putting in her drinks and that she would have to have it in everything. She is on Honey consistency. Shortly after I informed her therapy office, they offered to put her in Occupational Therapy. Her therapist, Amy, was an older woman. She was sort of rude at first, but she really did help me out in the end. This therapy was different than her physical therapy. Sami didn't have to do much here except eat a little and then she would tell me what I needed to work on with Sami. She wanted me to have her work on using a straw so that she could not tilt her head back and she wanted me to take certain things out of her diet that made her choke. She also informed me that Samantha was not allowed to have tea OR PLAIN WATER! She said Thick It will not chemically bind with tea and water has no taste, so she will not register it anyway. She can only have FLAVORED water. Samantha's daycare(The Early Head Start) was giving me a rough time about it. They have all sorts of regulations and such. I brought in a doctor's note. What more do they need? They said they had to speak with a nurse...ect. ect. Well, turns out, Samantha's OT used to work for a Head Start and she knows all the rules, so she had a little talk with the manager of Samantha's daycare and I didn't hear a word about it after that. From then on, she had Thick It in all her drinks without me having to ask. She was released from Occupational Therapy about three months after she started. There wasn't much they could do for Sami since it is a swallowing disorder. We finally made peace with it and I got used to putting Thick It in her cups. I use a formula dispenser to carry it. And measuring it out has come as normal to me as making a bottle-only this stuff is pretty nasty. It turns everything into something sticky and it smells terrible if it gets spilled. Her last swallow study was a few months ago. They had asked her to come back and get retested, because usually children will grow out of Dysphagia. Well, she didn't...They did the same thing as last time, but they said it was highly unusual that she hadn't gotten any better at all. Usually if children don't fully heal, they at least build a little more strength and can move up one level in consistency. SO, we will go back in September and if she doesn't pass, they want her to go to an ENT specialist to get an endoscopy.
Here are a few links to learn more about Dysphagia.

http://www.nlm.nih.gov/medlineplus/ency/article/003115.htm

http://www.urmc.rochester.edu/encyclopedia/content.cfm?pageid=P01991