Thursday, September 6, 2007

Yeah, so...this doctor walks into the room and says...

You came to MAINE for better medical care and services??? Okay, so I likely got that from most every doctor we saw there. I guess that should have been my first clue.

Its not that the medical care there is bad...in many ways its better than what we had in Memphis.

I researched a lot but some things that I should have realized before we moved, sorta...uh...escaped my attention. Things like since there are less than a million people in the whole state, means there is no variety in medical care. This translated to...you need a second opinion...there is NO second opinion!

Case in point...there is only ONE pediatric neurologist in the WHOLE state. He's not good...everyone knows he's not good, but what can you do? You can't show him by going somewhere else...there is nowhere else! And the other docs, our case manager, our therapists...they all know you're not going to like him...because none of their other patients have liked him. But, as a professional courtesy, they don't tell you this ahead of time...they let you go with your armload of hope and come out going "Did he really say what I think he said? I mean, something totally contradictory to anyone else who works with my kid?"

Then you see said doctor, case manager, therapist and they ask with a GLEAM in their eye...because they already know the answer..."So, How did your appointment with Dr X go?" You tell them...they act surprised at the report, despite they've heard it all before and then say "I knew you wouldn't like him...nobody does!" Well...thanks a lot!

But healthcare, being what it is today...you have to play that game. Our kids are all on state insurance (otherwise, we would not have been able to do what we do) and while some parts of it are a huge blessing, other parts are a huge headache. There are TONS of other neurologists in Mass but getting to them is the problem. State insurance programs HATE paying for out of state care. I checked into this before we came and found there were many Maine kids getting specialty care in Mass, but right after we moved there, they made a big point to tell everyone they were cutting that out as much as they could.

So we fought for a second opinion about the neurologist and it becomes a game. Our pediatrician tells the state how we have many other contradictory reports and it affects his future healthcare to have an accurate neuro picture. But they tell us since the Maine neuro said in his notes, he wanted to do an EEG, we have to do that first. The state already knows we don't think this guy is good, but they'd rather stall us and pay for an EEG that when we DO get a second opinion approved, will have to be redone and they will pay for it twice, but alas, the game!

Our metabolic doctor in Mass (who we pay for out of pocket) wants a fasting study for True. It doesn't matter to the state that there is NO DOCTOR in the state of Maine that does these studies. They are done in the ICU and are very serious tests but they dont' care. They don't care that the next time True gets a cold, he will have to undergo emergency protocol as if he has a metabolic disease, which will cost them money, when the fasting study will tell us if he really does have one. Its the game.

I'd like to say fighting the state for these things were the only issues, but Early Intervention is a whole other thing that has been affected by budget cuts. EI services are usually for children under three (although Maine goes to age 5, something I liked when we looked at moving there) for kids who need therapy. I have to say, this is something Memphis does better than most! I'm sure it has something to do with the very specific population they deal with in Memphis. Someone at the state level realized that if they gave kids who were at risk, intervention when they were so young, that it would cost them less later and it does! Maine, hasn't figured this out yet. So getting therapy there was harder than I thought it would be. Eventually, though they figured out what he needed...about a week before we left! ha!

Social support services are really good in Maine. I have not heard glowing reports from everyone but we had a great case manager who knew her stuff and some great workers...so our experience was good. They do have some of that here, but I'm not sure how it will compare.

School-wise Gaige really excelled in most areas. He was fortunate to have a very insightful resource teacher whom he really connected with...this was a great asset for him. The schools overall, in New England spend about $2000/student more, even though the teachers are paid less, than in Memphis and you can definitely tell. Everything to do with special education is about the bottom line...the almighty dollar, but I felt in most cases, they tried to put Gaige first.

Bliss, of course, did great at school!

Then there were the doctors themselves. My southern friends (yes, I was able to find three in Maine), said they felt they had never seen a family like ours so they didn't know what to make of us. Maine is predominantly white...that's an understatement...93% white. There are more Amer-asians thans african americans. The 'african' americans that are there...are from africa...the sudan, the congo and somali. Most of that population went to the health department for medical care, so needless to say, most docs in Maine don't have much experience with black children.

So what! You might say...how much of a difference could it really make? We all know black adults are more prone to this or that health problem, but they didn't know what to think of a couple who would purposely adopt at-risk kids of a different race.

I do not intend to share everything that resulted in the lack of understanding on their part, especially with doctors of osteopath or D.O.'s. In the south, we don't have these, but they are everywhere in Maine. D.O's are able to do everything a doctor is able to do but have a more natural and whole person approach. I thought this would be great for us...there is a big push in the medical world right now for family-centered care. However, I realized that this means the D.O plays part psychologist and tries to read into things you say without really knowing you, your true heart or motives. One D.O. told me I was afraid to get rid of True's pacifier because I had lost a child...when in essence it was because if he had the paci in his mouth, he would not experiment with allergic food he somehow got access to. When I disagreed with her thinking (he had only JUST turned two, to boot), she sent me a letter and said that if I was not confident in her decisions, then I should find another doctor. I loved this doctor...it was wierd. Another D.O, after just meeting Gaige and I for ten minutes, made the assumption that I was not an honest person, broke the HIPPA law to try to investigate me, kept putting off seeing the kids and reaked a whole lot of havoc for us that I wont go into but definitely turned me off to D.O's forever.

Because of the spiritual culture in Maine, the professionals we deal with do not even consider that we live our lives to serve these children because we are serving Christ. Actually we wouldn't even have the liberty to say such a thing. Nor would they consider that we might want to do our part in the world. I guess when you try to do something for someone else, there must be something wrong with you. I hope that's not what they are teaching in all medical schools, because I know a lot of adoptive moms out there who have taken on kids like mine and need docs to be on their team. So, D.O.'s, I will try to avoid!

Its just been in the last week or so that I figured out the difference with this lack of perception in Memphis vs Maine. I think if you know the socio-economic makeup of Memphis, then you understand. Our geneticist in Memphis, who was fantastic, told me they are seeing more and more adopted children...you know why? No one knows what they were exposed to in-utero. I think Memphis docs just have an innate understanding of this because they are dealing with the families that keep their children and expose them to stuf, on a daily basis. They don't question our motives because I imagine they would assume we are religious and do it for that reason...because that's not unusual in Memphis. Maine is a very affluent society b/c of the cost of living, so the doctors don't understand the ramifications of what my kids were exposed to before we got them. Realizing this difference last week, has brought me a measure of peace, so that's a blessing.

We did find a couple of really great docs, our orthopedist who had the best manner with children and we especially loved our GI doc, who was also the adoptive parent of a black child. So, it figures that he would be on board with our family!

okay...off my soapbox...and on to more...

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