About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Monday, April 21, 2014

roadblocks and u turns and the hunt for a psychiatrist

Finding a qualified pediatric psychiatrist is next to impossible.  After many years working with a doctor who I did not feel like understood Matthew, I had finally found a new psychiatrist for Matthew who I really liked.  I found him to be  a doctor who listened, who was accessible and who worked really hard to get Matthew off of medication.  He trusted my gut, and held Matthew accountable for some of his behaviors while also understanding that Matthew needed a medication cocktail that supported him.  The doctor seemed to have a strong understanding of the new psychiatric medications that might help Matthew, as well as the old medications with proven track records, and he personally answered my phone calls and emails when Matthew was struggling.  I was at peace, and felt like I had a team mate in this new psychiatrist.  All was good, until Matthew's insurance changed.

Matthew qualifies for the Medicaid Waiver program as a child with developmental disabilities and he has CDPHP insurance.  This doctor finds CDPHP hard to work with, and so as of January 1, 2014, he no longer accepted Matthew's insurance.  For a few months I paid out of pocket for Matthew's visits and I thought that this would work long term. However, in March the doctor suggested that Matthew was doing well and could be followed by one of the Nurse Practitioners in the practice.  This NP accepts CDPHP and I assumed that we would still be working as a team with the NP and the Psychiatrist, and so with some anxiety, I agreed that we would try to have Matthew see the NP.

Tonight we had our first appointment and all I wanted to do was run out of the room.  The NP started out by asking Matthew a variety of questions: ( Matthew's answers are in italics)

  • Do you sleep well?  I go to bed at 7:30, my mom likes to have down time, so then when we go to bed she gets to watch tv.  I like to watch tv, but she says we have to go to bed at 7:30.
  • But when you go to bed, is it easy to go to sleep or hard? Well it is easy, it usually takes a LONG time.  I go right into my bed and fall fast asleep.  Well, last night I called my brother names, and then teased him, and then I went to sleep, and I slept from 7, 8, 9, 10.......5, 6......so I got a lot of sleep.  I got up at 6 and listened to my ipod.
  • Are you worried a lot? I worry about a lot of things, like monsters and nightmares.  My babysitter says you can have nightmares if you eat M and M's at night.  But I don't worry a lot.  I do worry if my old teacher likes me.  She talks to me but only sometimes.  She was a really nice teacher, but some of the kids in the class were nice and some were not.
  • Do you think your medicines are working? Yes and no.  Sometimes I am doing ok, but other times not ok.  I want to take medicine at school because then I would behave in gym class.  I like gym class, it is where I do my best.  I like to play basketball, baseball, and catch.  My friends take medicine at school.  It was the first day back after vacation.
As I listened to Matthew respond, I realized I needed a few moments alone with the new doctor.  I had to get a sense of what she was thinking and what she knew from the Psychiatrist.  I had to know what they had discussed and also let her know that Matthew may not be the best source to help decide medication needs because he is just not always that aware of his own behavior.  

When I asked if the NP and the doctor had spoken, I was shocked to hear that they had not talked about Matthew at all.  No plan had been formulated for Matthew's care.  No thought had been given to explain to the NP why he was on the medications he was on, and what the doctor thought would be best should Matthew be struggling.  These two professionals work in the same practice and yet there had been no carryover of care for Matthew. 

The NP immediately suggested increasing one of Matthew's medications based on the fact that Matthew was struggling more at school recently.  However, today was the first day back from spring break. Over spring break we took a trip to Boston and spent the entire vacation together with very few issues, even on the car ride to and from Boston.  Given that, I was in no hurry to make medication changes.  I was certainly in no hurry to make a change without a strong understanding of why the change was being made.

As the NP heard my concern about the med increase, she suggested that we could do blood work and check the medication levels in Matthew's system currently.  As she was talking about this, the NP picked up the phone to call the pharmacy.  Without any conversation towards me at all, the doctor asked the pharmacist what brand of  Lamictal Matthew was taking.  The pharmacist answered and the NP hung up and laughed, "phew, he is on the ok one".  When I pushed, I learned that there is a brand of lamictal that the NP thinks is not as good as others, but she was relieved that Matthew wasn't on that one. ( Why there would be  a brand of medication that is not as good as others, I do not understand at all.  I would assume that Lamictal made by one company would be the same as Lamictal made by another company).

After hearing my concerns about increasing any of Matthew's medications, the NP started to say that there were other medications we could try for Matthew.  When I asked what medications she was thinking, the NP suggested 2 medicines that Matthew had already been on and had bad reactions to.  Shouldn't she have known this?  Why would we put him back on medications that he already had tried? 

Finally, the doctor ended the appointment by saying that if I wanted to, we could just keep Matthew's medications the same.  I felt like crying.  If I wanted to?  What did that mean?  These are intense medications.  It has nothing to do with what I want.    Jacob was just diagnosed with strep throat.  The doctor used his professional judgement and prescribed an antibiotic for him.  He didn't ask if I "wanted" him to prescribe an antibiotic.  He didn't ask which antibiotic I wanted. He didn't prescribe the antibiotic that Jacob is allergic to.  Shouldn't I expect the same high quality medication protocol when we are talking about dangerous pyschiatric medications?   Shouldn't the same care be given by the NP to ensure that Matthew is on as little medication as possible?  

As we left the appointment with only a script for blood work, I asked that we be transferred back to the Pediatric Psychiatrist.  I wasn't thrilled with the fact that he had passed Matthew off, but I do trust his medication management for Matthew, and so I figured he was the best choice to just return to.  I was told however that once you change doctors you can't change back.  

What about the fact that I didn't want to change in the first place?  What about the fact that I changed from a true doctor to a Nurse Practitioner?  What about the fact that the NP almost prescribed medications my son has had bad reactions to?

Apparently, the secretary can ask the dcctor if he will see matthew again, but I should not get my hopes up.  So for now, I am going to be looking once again for a new Pediatric Psychiatrist while I wait to hear if our old doctor will take us back.

I have 30 days worth of medication for Matthew, so 30 days for me to find a new doctor or sweet talk our way back to the old doctor.  I have 30 days to hope that Matthew continues to do well, and to ponder what our step will be if he doesn't.  


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