As soon as we got the news that our daughter had disabilities, we started searching for ways to help her. Some of the treatments and procedures we found were common and were already in the plans. Some other things we found were not considered standard treatment options at all.
We did a lot of research! Then we weighed the risks with the potential benefits. Once we decided that one of these nonstandard options was something we wanted to do for Casey, the next step was figuring out how.
In the first year, we tried a lot of things that had little to no risks. We tried Hyperbaric Oxygen Therapy (HBOT). We saw a lot of positive feedback online from other families of babies like our own. Since this was a new treatment and not proven at that time, we had to pay for it out-of-pocket.
We did 1 round, which included 40 sessions. Since Casey was just 6 months old at the time, they had us do 60-minute sessions. We went 5 days a week. Each session cost $150. We had to pay for all of them up front.
Luckily, we had been saving to buy a house before we had Casey. So we were able to use those savings to help pay for this and a few other treatments. A lot of people today do online fundraisers with Facebook, GoFundMe, etc.
After we came up with the money, we still had a few other things to consider. With HBOT, we could not take anything metal into the tank. Casey required frequent suctioning. The idea of being in a tank and not being able to use our suction machine was pretty scary.
The center we used let me go in the tank with her. She would lay on my chest or next to me. I had a little rubber bulb sucker to use while we were inside. When Casey slept, her secretions were not as bad. So we made sure to go at times when she would typically sleep to help reduce the need for suctioning.
During our 40 sessions, there were 2 instances where she needed more than I could manage with just the bulb. We had to do an emergency rapid exit from the tank. The rapid exit had its own risks, so we only used it when it was critical to get out of the tank for the suction machine.
A lot of the families we knew with babies like Casey mentioned that HBOT helped them to regain their swallow, blink, and other missing reflexes. Sadly, we did not see any real improvement with HBOT. We did not have any negative effects either. And I am very glad that we tried.
There were a few other nonstandard treatments that we tried over the years. Some that did help and some that did not. Deciding which treatments were safe and worth trying as well as coming up with the money and figuring out how to make it all work, was a challenge. But we never regretted trying everything that we could. I’ll share more about other treatments we tried sometime soon.
If your child has multiple disabilities, rare condition or an undiagnosed disease, this information will be helpful.
My son is 7-years-old and still drinks from a bottle. We didn’t plan this, and we have tried to work around it. But the bottle gives him the flow control he needs to digest liquids properly.
Sometimes we all need to vent, even your little one’s G-tube.
Categories: Diagnosis & Health Care