Ketogenic, Urodynamics and Equipment Clinic

Just some quick updates because I am SO tired. By the way, Julia says I should just get used to being exhausted for the next 7 or 8 weeks. I do not like that answer, so if you have more supportive advice, feel free to send it my way.

Ketogenic Diet. This appointment was much longer than expected. Apparently it was a full consult - with a physician, nutritionist and social worker. It went so long that I decided to cancel and reschedule the appointment for the Vagal Nerve Stimulator (VNS). Basically it's a high fat, low carb diet which changes his metabolism so that he has less seizures. With the number of medications we've tried and not had success with, the doctor feels like River would be a good candidate (although we are still waiting to see if the Lamictal will make any difference). The biggest challenge for River would be his already sluggish digestion. The fats will slow down his digestion even more, possibly making this diet intolerable for him. I'll be consulting with his gastroenterologist to get her opinion and I'm hoping we'll proceed with it in May or June after baby arrives. He'll need to be admitted for almost a week so they can monitor his ketones (produced when the body burns fat for energy) and make sure he is tolerating the diet.

I really enjoyed the physician we met with - very good at explaining, and interacting with us and River. It's so wonderful to meet a doctor who has the ability to connect to patients in this way. During this lengthy consult we also met with a very kind social worker who would like to help us get more overnight respite. Even though we have a pediatric residential facility just 30 minutes away from us (in NH) which provides overnight pediatric respite care, our VT insurance will not cover this benefit. I've tried to pursue this before and ran out of steam, so it's nice that someone else is willing to help advocate for this.

Urodynamics Study. It was not nearly as bad as I had anticipated. While River did have three probes put IN him (not fun), it seemed only painful for a minute and then he was able to relax. The whole study took just over an hour with a Urologist, Neurologist, Radiology technician, CMA and 2 RNs. They explained everything as they went along - and we asked a lot of questions. The brief analysis we got is that his reflexes all work well but his bladder is not coordinated with his urethreal sphincter. To me this means that his bladder is pushing but is sphincter is not letting go. So his bladder can't fully empty, and sometimes can't empty at all. I'm still waiting on our urologist to give us more information - I'd like an official diagnosis and any intervention we can do to help alleviate the problem. For now River is sleeping relatively well - only 1 or 2 night wakings and most nights we get a good stretch of sleep. My bladder is not letting me sleep so much but that is another story.

Wow, this post is turning into a long one. But there is one more topic I want to cover.

Equipment Clinic. River's current BOB stroller is no longer meeting his needs. While it works fine for strolling him around, it does not offer the appropriate amount of support he needs to engage with the outside world. We've been waiting for this equipment clinic for some time now so that we can test various "adaptive strollers." He'll probably be ready for a wheelchair in a few years but this is the step before the wheelchair. The good news is that we think we found a stroller that works well for him. It has most of the features we think he needs to be comfortable. In fact he fell asleep in the chair while we were testing it out!



Doesn't he look like such a big boy?? Hopefully we'll have it in a couple months... just in time to take walks with his new brother.