We had a similar experience with a pediatric neurologist. We were looking for someone who could treat our son's Tourette Syndrome. At that point he hadn't been diagnosed with ADHD yet. Our pediatrician couldn't really help us with the TS, so he referrred us to a well- regarded pediatric neurologist at a large university hospital. Like you, we had to wait 6 months to get in to see him. When we finally did get in to see him, all he really did was diagnose him again. He didn't even recommend any type of treatment. (His TS was not severe enough for medication). It became apparent that there wouldn't be any support for questions we might have while trying to live with this and help our son cope with this. This was really not what we were looking for! I decided to ask around at a TS support meeting, and it turns out that most parents and patients recommend seeing a psychiatrist instead. They all say the neurologists are not helpful for this disorder, even though it is considered a neurological disorder, and not a psychiatric one. So, following the recommendation of an adult with TS at the meeting, I contacted a psychiatrist and have been taking our son there ever since. Though not perfect, it is a much, much better arrangement. They are accessible for questions, and have knowledge of treating both TS and ADHD.
Hello EJ
I want to thank you for your comment and for sharing your experience. This is a good suggestion to try a psychiatrist if another specialist such as a pediatric neurologist does not work out. My son's pediatrician only recommended a neurologist so I didn't think about the other options at the time. Fortunately we are happy now with this new neurologist but I am definitely going to keep in mind about your suggestion.
Thanks again!
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Merely Me, this is an excellent piece about the importance of changing doctors if you aren't satisfied with what you have. I've been in this situation several times with my son, Nick. He's been going for years to a county-based mental health clinic, largely because he's on Medicare and there have been some real winners there. Luckily, because of his job, he now has primary coverage through his employer, which gives us more choices. The doctor he sees now is still through the same clinic, but I've decided that when the day comes that this guy leaves (which they all inevitably do within a year or less), I'm going to look for a private practice doctor because we are putting up with some of the things you describe, although not nearly as bad as what you've experienced.
The doctor my son has now does care, I believe, but because they are short-handed, his appointments are 4 - 6 months apart and he can only get 15 minutes. I will say, though, that if there is an emergency, there is at least a triage nurse who can make medication decisions with the doctor and if he becomes suicidal (which has happened in the past), they even have a mobile crisis unit that will come to the residence.
I have put up with a lot, too, over the years and some I've tolerated because my son wasn't in a crisis situation. There was one doctor, though, who never got a second chance because he was so terrible, he told my son to threaten to kill himself to get his dad to do something that the doctor thought he should do. He acted like a smart-ass and didn't even read enough of my son's chart to know that he was developmentally disabled.
Right now, we are trying to switch him from Abilify to Geodon because he gained so much weight on the former. We just upped his dose a second time while halving the Abilify and it about knocks him out. If taking it at night doesn't help, then I will be calling and suggesting maybe he doesn't need the higher dosage but at least I know I'll be able to talk to someone and he does have another appointment scheduled in about 2-1/2 weeks.
I think it's especially hard to find good doctors to work with special needs persons, whether children or adults. I was about in despair over ever getting him a therapist that could reach him but finally found one. It's just that it takes so much energy to make all these changes. Not that it's not worth it, but it can be very exhausting. I was just thinking about this service you can subscribe to for all kinds of home maintenance work that pre-screens the workers - it would sure be great to have something like that for health care providers! I think a few of them would not be in business if there were a service like this.
Hello Miss Judy!
I am so happy to hear from you here. I hear you...it can sometimes take so long to find a good health care provider for our children. I feel like we are their biggest advocate and we can't let them down. I did like the doctor we had but that fact didn't make up for the lack of support in between visits.
I am so sorry you had that bad experience where the person actually told your son to threaten suicide??? That is insane. It makes you wonder.
Have not heard much about Geodon...I am eager to hear how things work out with this medication. I am thankful that there are medication options to try.
Thank you so much for sharing and commenting. You are a sight for sore eyes. Really and truly.