Caitlin can swallow!!!!
Jun. 3rd, 2009 09:14 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
michaeldthomasMarch 2004 was one of the cruelest months of my life. We had recently moved to DeKalb, and Caitlin's epilepsy was still out of control. She was on numerous anti-epileptics that were basically barbiturates in alcohol suspensions. Cait still had about 5-7 clusters of seizures per day lasting 5-10 minutes each. My baby was a floppy zombie.
After meeting with her new pediatric epileptologist, we decided to put her on the Ketogenic Diet. This is a high-fat, low-carb diet that has been known to stop seizures. In order to start the diet, Caitlin had to stay for a couple of nights at Children's Memorial Hospital. I was nervous. The diet was difficult to regulate due to its precise measurements. Cait had been a good eater. She loved her Gerber fruits. We had even started giving her the chunky stuff.
We were a day into the diet when another member of the epilepsy team came to visit us in the room. I was giving Cait some water, and she was coughing. The doctor immediately decided to do a swallow study.
It took us a day to get one. They sat Cait up in a tumbleform chair and x-rayed her while eating barium-laced foods and liquids. They didn't need to say a thing to me. I watched the food and water pool in the back of her throat and branch down with each swallow. Most of it went down her esophagus, but each time a bit went down her trachea without a cough.
I was devastated. We were risking her life every time we gave her anything to eat or drink. Only luck had kept my baby's lungs from being infected with a life-threatening aspiration pneumonia.
Caitlin was a silent aspirator. We were given two choices. We could place an NG-tube through her nose to her stomach each time we fed her, or we could get a G-tube placed on her side for feeding. We chose the G-tube. They cut into my baby's side and placed a button that looked a lot like the air hole of a beach ball. All food and liquid would now come from a medical pump.
We were at the hospital for 10 days. There were a couple of pluses to the situation. The Ketogenic Diet was much easier to control in liquid form, and we got an awesome Oral Motor/ Speech Therapist to help teach Caitlin to swallow.
For five years, we have been working with Caitlin. Caitlin grew stronger, her seizures became better controlled, and she learned to read and communicate. As most of you know, Caitlin's insurance denied additional oral motor therapy due to a "failure to progress." We had no choice but to do a new swallow study.
That leads us to today. Caitlin's awesome Speech Therapist came with us to the hospital to help. The test was over in a few minutes. I watched as they hospital therapist gave Caitlin different consistencies of food. It's a funky experience to watch your child's moving skull in silhouette.
Caitlin had a bit of trouble getting her tongue to work until they switched to nectar consistency. Then it happened. She swallowed. This time, it all went into her esophagus. Then she repeated it a few more times for good measure.
My daughter didn't aspirate. After five years of therapies, Caitlin can finally safely swallow.
This changes a lot of things in her life. We can now start giving her very tiny amounts of nutrition by mouth. With this new feeding plan, we of course need an Oral Motor Therapist. This should give us more than enough ammunition to win our appeal with the insurance company.
Today, Caitlin wins. She's worked very hard to get here, and I'm very proud of her.
After meeting with her new pediatric epileptologist, we decided to put her on the Ketogenic Diet. This is a high-fat, low-carb diet that has been known to stop seizures. In order to start the diet, Caitlin had to stay for a couple of nights at Children's Memorial Hospital. I was nervous. The diet was difficult to regulate due to its precise measurements. Cait had been a good eater. She loved her Gerber fruits. We had even started giving her the chunky stuff.
We were a day into the diet when another member of the epilepsy team came to visit us in the room. I was giving Cait some water, and she was coughing. The doctor immediately decided to do a swallow study.
It took us a day to get one. They sat Cait up in a tumbleform chair and x-rayed her while eating barium-laced foods and liquids. They didn't need to say a thing to me. I watched the food and water pool in the back of her throat and branch down with each swallow. Most of it went down her esophagus, but each time a bit went down her trachea without a cough.
I was devastated. We were risking her life every time we gave her anything to eat or drink. Only luck had kept my baby's lungs from being infected with a life-threatening aspiration pneumonia.
Caitlin was a silent aspirator. We were given two choices. We could place an NG-tube through her nose to her stomach each time we fed her, or we could get a G-tube placed on her side for feeding. We chose the G-tube. They cut into my baby's side and placed a button that looked a lot like the air hole of a beach ball. All food and liquid would now come from a medical pump.
We were at the hospital for 10 days. There were a couple of pluses to the situation. The Ketogenic Diet was much easier to control in liquid form, and we got an awesome Oral Motor/ Speech Therapist to help teach Caitlin to swallow.
For five years, we have been working with Caitlin. Caitlin grew stronger, her seizures became better controlled, and she learned to read and communicate. As most of you know, Caitlin's insurance denied additional oral motor therapy due to a "failure to progress." We had no choice but to do a new swallow study.
That leads us to today. Caitlin's awesome Speech Therapist came with us to the hospital to help. The test was over in a few minutes. I watched as they hospital therapist gave Caitlin different consistencies of food. It's a funky experience to watch your child's moving skull in silhouette.
Caitlin had a bit of trouble getting her tongue to work until they switched to nectar consistency. Then it happened. She swallowed. This time, it all went into her esophagus. Then she repeated it a few more times for good measure.
My daughter didn't aspirate. After five years of therapies, Caitlin can finally safely swallow.
This changes a lot of things in her life. We can now start giving her very tiny amounts of nutrition by mouth. With this new feeding plan, we of course need an Oral Motor Therapist. This should give us more than enough ammunition to win our appeal with the insurance company.
Today, Caitlin wins. She's worked very hard to get here, and I'm very proud of her.
