WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, December 22, 2011

You are not alone- bad Dr. experiences happen.

In a world now driven by reputation and money, we have left the human element on the wayside.

Our daughter saw Drs. all over the Country for 15 years before finding Drs. who listened. I suspect they listened because clinical evidence was significant and they could not brush us off as over protective parents(or I am sure some of our drs. are convinced I am a little nuts!) any longer.

Most days I can step back and appreciate the difficult decisions Drs. are forced to make in the world of medicine today. Then I have days like today where I am frustrated. I know that just because Abby's medical needs have finally been acknowledged doesn't mean there are hundreds more like us who are getting brushed off by their Drs. as we speak.

The nightmare stories I have heard from parents. The agony they have been in for their children- Mom's do have radar- we do know when there is something wrong.

How many appointments I came home and cried. From my limited view in the world I could only assume they either thought we we were nuts, or did not like us- and yet, how could they deny medical care to my child based on their personal view of me?

For example- we are in Houston. One of the biggest medical centers in the Country. Guess what? We have 1 Mito/metabolic specialist. Thats right, the 4th largest city in the Country and we have 1 Dr. that specializes in a disease that will strike 1 in 4000 . Insane! Not only is she booked to her eyeballs, but I suspect her office must triage. Sorry, but as a parent I am not willing to have my kids medical needs put on hold for months and months. We pay a mint for our insurance, we have filed medical bankruptcy, foreclosed, moved all over the Country trying to find a climate that agrees with her- I am NOT waiting 4 months for basic blood results that take 2 weeks. I understand this Mito specialist see's patients from all over the Country- which of course means those of us in Houston that need her brand of care are added to a growing list. Those of us with enough gas money are forced to go to other states for medical care- really- in the 4th largest city in the Country and we have to pack and see other drs. in other states??? The kicker is, we now have the internet, we compare notes, we know that certain patients receive a higher level of care or lesser. We are now globally connected and expect some level of equality when it comes to medical care- but sadly, many many patients feel ostracized, alienated, we actually begin to doubt our sanity. Yet, the same organizations that teach these Drs. and set up these organizations tell us we are our children's best advocate- tell me how that is supposed to work when they ignore parents?

At a deeper level it really leaves the Mito community divided. There are those of us who have children with Mito or other metabolic diseases who cannot get into see this Dr. or have not had a good experience(aka bad fit -personality?) and we all have to pack up and go to Arkansas, LA, Atlanta, Seattle, Boston.. You would be shocked how many of us have been forced to pack and go. Then, the flood of patients from other states roll in for their appointments with this Dr. Now, try to run a support group locally, can you imagine? Of course the 1 mito dr. in town is likely active with this group- since we aren't this Dr.s patients we don't feel comfortable reaching out for support. I have found that most parents that have been through what we have been through develop blind faith in the Dr. that finally listens, we are guilty of doing the same. Unfortunately, many are leery of those who aren't as happy- understandably. The insane part is, our daughter is probably being seen by the Dr. that lives next door to them, and they see the Dr. that lives next door to us- many states away. An already insanely complicated disease and we add turf wars to it.

I could totally go into a rant about how many Dr.s don't believe that Mito exists- many newly out of Med school(who is teaching these Drs?)are the ones most likely to argue that Mito only has one face.

Last year, CPS, Texas Childrens and the local Mito specialist rocked the worlds of all the families of Mito kids locally- Newspaper articles are still posted all over the net.. CPS decided that some sick kids could not have Mito, took them away. Now, I don't know who is to blame, or which Drs. are idiots to think that Mito did not exist for these patients- but what it did was tell all of our families that Houston is bad bad place to find medical care if your kid doesn't have something very common. Again, this type of BS in the 4th largest city in the US, and with one of the biggest Medical Centers and a slew of Medical schools? Do you blame me if I don't trust Drs any longer?

In closing this rant, I don't want to be part of the problem, I want these hospitals, medical schools, organizations to listen to us- the parents who at the end of the day are the caretakers of these children. I would love to be a fly on the wall while they discuss their opinion of me or my child- maybe it would help me grow into a better advocate. We recently saw a new Neurologist- and bless him, he was a trooper! My daughter calls the first appointment "Mom's data dump". I cannot help myself..my mouth opens and it ALL pours out! 15 years of data.. highlights, lowlights, symptoms.. it is a furious river and it used to embarrass my daughter and husband- they would plead with me before appointments, we would even role play trying desperately to break me of this habit that seems to drown even the most patient Dr. This appointment though, my daughter just smiled and said, he must be a good Dr. if he can live through it. It's true- the Dr.s that have helped Abby the most have weathered the data dump and recognized that despite my lack of ability to articulate in a more civilized, organized, educated manner that I am just a scared Mom trying my hardest to advocate for my daughter- and they don't hold me and my unorthodox approach against Abby the patient.

Finally- I don't doubt our local Mito specialist is good- this Dr. has worked miracles for many families- but I cannot help but be just a tiny jealous that our daughter is not in their club.

So we drive and fly- and have found even better care. I dream of a "real" Mito /neuromuscular clinic that is able and willing to help all of us, equally.


Anonymous said...

I've often wondered what happened with the children that CPS removed from their parent's custody. I am always curious about whether they were returned to their families, if they became sicker in state custody because they weren't getting treatment, etc.
We are in the undiagnosed camp. :( I understand doctor frustration all too well.

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