This is one of those days days where I find myself overwhelmed and frustrated by all that goes into special needs parenting.
As many of you know, I’m a father to 3 special needs boys. All 3 are on the #Autism spectrum. My oldest is very medically complex and my youngest has a rare fever disorder.
Life is so complicated that at times I literally feel as though we will never get through this.
What has me the most frustrated, at least right now, is Gavin’s health. Gavin is dealing with Asperger’s, schizoaffective disorder, bipolar disorder, ptsd, conduct disorder, ocd, adhd, epilepsy, asthma, autonomic disorder, primary immunodeficiency, cognitive regression, memory loss, neurological degradation and most likely mitochondrial disease.
As you can no doubt imagine, this presents many, many challenges in his life and subsequently ours as well.
One of the things that makes this more difficult than it has to be is coordinating all things medical. We have the very best of the best as far hospitals, doctors, specialists and therapists. However, all of these fantastic individuals are scattered throughout North East Ohio and are not located in the same location.
This makes coordination of medical information very challenging and extremely frustrating.
When you have a child as complex as Gavin, very often it feels like we are living between hospital and home. It’s worth it, don’t get enough wrong, but at the same time, it’s amazing exhaustive process that is physically, emotionally and financially draining.
When your child has so many mental health and medical issues, there are doctors for each condition and that can very quickly turn into a whole lot of cooks in the kitchen.
While that’s not necessarily a bad that at all, it does complicate matters when medications are involved.
In Gavin’s situation, no one truly understands what is going on with him. There are so very many pieces and no box with a pretty picture, showing us where the pieces are supposed to go or even what the final pictures looks like.
So many of Gavin’s symptoms overlap that it can be very, very difficult to pick everything apart and figure out what symptoms go with what disorder. A recent example of this was Gavin last autonomic crisis a few weeks back. This was the first time that we truly feard for his life. Basically, his autonomic system when crazy and his brain wasn’t controlling anything correctly. It was really, really scary.
About a week after he returned home from from Akron Children’s Hospital, he was admitted again, only this time to the psychiatric unit for behavioral issues.
While there, we discovered that there is a problem with the way his body is processing lithium, which he is on for the bipolar side of the schizoaffective disorder. His levels were fluctuating in a very unpredictable way. This led to very real concerns about lithium toxicity.
We just recently discovered that the symptoms of lithium toxicity and almost indistinguishable from that of an autonomic crisis, at least for Gavin.
Now we don’t know what’s what.
After a week of bloodwork every other day, his levels appear to be stable again, but what does that mean. Also, just because it was good this week, or on the particular days they were tested, doesn’t mean there won’t be a problem today, tomorrow or next week.
There are at least 3 doctors directly involved in this particular situation. One is at the Cleveland Clinic, one is at Akron Children’s Hospital and the other is at a private practice, locally.
Because all the symptoms overlap, we get bounced back and forth between doctors, often resulting in steps backwards.
I love all these doctors and wouldn’t trade them for anything, however, communication between doctors at different locations or facilities is very poor. That is part of the problem and a major contributing factor to my frustration.
Everyone involved is working towards more transparency and cooperation. The logistics are just tough to overcome.
Ideally, we would have one doctor, with every skill set required to figure out what is going on and help us to help our son. Until that time, and I’m not holding my breath, we’ll have to continue to do our best to bridge the gaps and foster a clearer channel of communication. However, I feel like we already have enough to deal with and that this should really fall more on the shoulders of the people getting paid to find answers.
Please don’t get me wrong, the medical professionals are overworked as it is, but as I said, the ideal situation would be to have doctors communicate better on there own or have the means to communicate better. It’s certainly not always their fault, it’s the logistics and schedules that often interfere.
Having said that, it’s the patients, like my son Gavin, that all to often pay the price.