The frustrated father

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.

 

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Lost_and_Tired

Thanks everyone, I really appreciate it 😉

Bridget

Why *do* you have so many doctors all over the place? As you say, Gavin's care is complex and the coordination of care seems as if it might be more important than whether you have the tippy-top expert in every diagnosis. What might serve you better (and you hint at this) is a single source for all the different kinds of care he gets, even if the care for any one disorder is not optimized but only just okay.

Can you take a step back and seize a bit more control over the process? When your neurologist wants to refer you to yet a different specialist, is there room for you to say, "We don't want a referral to a different hospital. What is the best you can do for us here?"

The curse of 21st century medicine is to offer so much hope that you run around trying to get everything perfect. But not everything can be understood or fixed — never has been, never will be that way. What if being the best parent is understanding the limited ability of medical practice to solve things and settling for some level of care that works better in your lives than stretching beyond your endurance for the gold ring of "fixed"?

Rebecca Magliozzi

We too have struggled with confusion. We use a pediatrician, developmental pediatrician/psychiatrist, immunologist and earlier used a neurologist, plus a naturopath to get my son's immune medicine. All this due to PANDAS and autism. Half the time medical records are not transferred from one doc to the next. We fired our neurologist because she was not really treating the PANDAS and would not return phone calls. The immunologist, pediatrician and developmental pediatrician refused to put my son on an immune modulator, which really irked me. The insurance would cover it, and he clearly had immune system issues, but they were scared due to it being an off label use, though there were few to no side effects. Not to mention I am often the one to recommend which antibiotics he needs to take for PAND AS and how often. I even tell the naturopath when she needs to increase his immune modulator and by how much because I know more about it than her! I might as well write the damn script myself! In a perfect world I would become a doctor and undertake the majority of his care myself. Much cheaper and easier.

Holly

Not only do I hear you loud and clear, but I feel your pain. We are smack in the middle of our own medical/mental health/behavioral crisis with our complex son as well. We recently tried to get an appointment with a well-respected neurologist to get additional testing for our teenager to rule out any seizure activity or other issue that may be going on with him. He had severe tics (verbal and gross motor) last summer that subsequently put him into a severe depression because he was so frustrated he couldn't control himself. Doctors were able to get his tics under control only to find that he had lost some speech and gross motor skills (he had verbal & global apraxia – motor planning – issues to begin with, which essentially worsened). We gave some time for him to adjust to his new meds and his transition from a private special ed program (had been there 6 years) into a public special ed local high school. Everyone "saw" a glimpse of him and experienced a snippet of the real him for a few months and then things disintegrated in November. It has only gotten worse since then. So between either dealing with the developing issues at school or watching him 24-7 at home so he doesn't hurt himself of others, I somehow make an appointment for him to see the neurologist as a new patient: 4 month wait and that was moved up from 6 months because I mentioned seizures. Initially he did not want to give me the appointment without seeing a developmental-behavioral pediatrician first. I convinced them to give me the appointment anyway letting them know I would work toward seeing the developmental-behavioral pediatrician. I contacted my deep list of parent and professional resources for recommendations of developmental-behavioral pediatricians, researched those including the recommendation of the neurologist himself and made my decision to go with the neurologist's recommendation (which also came up among my other resources several times, too). Left my message with the pediatrician's office for a first time appointment and the call was returned two days later. After five minutes on the phone with the nurse scheduler for the doctor, she mentioned that the doctor either doesn't see children over the age of 12 or new patients over the age of 12. Really? Not only did that waste a week of my valuable time in recommendation and research, but five more grueling minutes of answering questions to find out he doesn't qualify? Really? My valuable time, my son's even more valuable time and a lot of emotional frustration could have been saved by just having that information posted on the doctor's website profile . And on top of that, for the neurologist to recommend a doctor that we couldn't even see in the first place makes me question the knowledge, understanding and competence of the neurologist to treat my son's complex needs. The whole system is so warped and broken.

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