July 18, 2010 - Neurology?

Wow! It has been a seriously long time since I've written anything on this blog. I've missed it. This has been a great source of therapy for me. It always helps to write things down - it can give great perspective. I stopped writing because I felt purged - empty of the energy to share what my daughter and I were going through. I sat down many times, expecting to post something, but it never came.

So here's where we are: on the educational front, we're back at square one. My daughter passed all of her classes - thank God! We finally broke through and started getting accommodations implemented - almost - the resource specialist told me in the last IEP of the year that we can put accommodations down on paper, but can't force teachers to implement them. Oh really? When I asked her who could ensure the implementation of the accommodations, she told me the principal. No offense, but if that ninny is in charge - we're in trouble. I called her personally after the meeting to let her know about my concerns. I told her that I had to hire a lawyer because of her inability or unwillingness to implement the IEP and that I hoped she would not mistake my civil tone for weakness. I think she got the picture. We'll see - my plan is to by-pass her and go directly to the teachers. As luck would have it, my daughter will have mostly the same teachers next year, so that will give me a head start. I'll keep you posted about that.

On the medical front: my daughter has a history of sleep problems. She sleeps, but wakes unrested. We were referred to a neurologist who ordered a sleep study - that was fun! My daughter was a trooper (this earned her a shopping trip at Hot Topic - her new fave store - she ended up with a blue stuffed shark backpack and a t-shirt with a pink bunny of some sort on it) - with a million wires attached to her head and body. The results were all normal. Ok - so what does that mean? Why is she so tired after sleeping for 10-12 hours at a time? The neurologist said that she suffers from physical anxiety caused by her sensory issues - basically, her brain doesn't completely shut down when she sleeps. His suggestion - a prescription! Who didn't see that one coming? I didn't expect it in the first five minutes of discussion - but I guess I'm an optimist. He wanted to prescribe her Abilify - Ok - hold the phone - back the f@#k up - he wanted to put my 12 year old daughter on an anti-psychotic drug to help her sleep! As I've said before - I've opted for a drug-free treatment plan for my daughter - and other than the sleep issue - I think we've made great (if slow) progress. I'm not advocating my approach for anyone else in my situation - this is a personal decision that every parent has to make on their own, based on what they feel is best for their child. My fear stems from the knowledge that these drugs will alter the chemical balance of my daughter's brain - at 12 years old! This will force her to be in a constant battle of regulation of the drug to keep her balanced. I've spoken to many parents who have told me horror stories about Abilify - oddly, they kept their children on the drug - believing that the doctor would figure it out. In the meantime, there were suicide attempts and institutionalization. When I told the doctor that I would decline his kind offer, he told me that drugs were his only tool and that he couldn't help my daughter without them. Then he told me I should take her to a psychiatrist. I told him that she saw a psychologist weekly, he said that I should incorporate a psychiastrist as well - so that they could work together for treatment - yeah right! So that I could be pressured by yet another medical professional peddling their wares!! I declined that suggestion as well, as I see no benefit in seeing an additional doctor who would add nothing to my daughter's treatment plan - other than convincing me that she needs drugs.

The other thing the neurologist told me - which I did find helpful is that my daughter should have an MRI. This will give us a good look at what's going on in her brain, which he thinks might have some signs of injury due to her premature birth. She'll have to be under anesthesia - which scares me to death - but I think it'll be helpful in the long run.

All of this lead me down the thought process - how many times does a doctor tell parents that he has no idea what's wrong with their child, but he feels that a psychotropic drug would help? And more importantly, how many parents agree, without even considering that they need more information before making that decision? I think that ADD/ADHD is slapped on too many children as an easy way for parents and doctors to deal with children who are different or need to learn in a different way. I have a great friend who's a teacher - he shared with me stories of having parents come to him on a regular basis to let him know that their child might be "off" that day because he or she forgot to take meds, didn't take meds over the weekend or was having meds adjusted. At times he has to send children home because they can't function in class. He teaches the fourth grade. I also read a story on the California prison system, that quoted one professional in the system as saying that over 90% of inmates in for non-violent drug offenses were on Ridalin or some other psychotropic drug as a child. I don't want to sound judgmental - I understand how painful it is to deal with a child that's difficult or "different" in the eyes of the educational system or even disruptive at home - being a parent is hard enough without the added pressures of these types of issues - it's exhausting! So, when a doctor or education professional tells a parent that they can help - the knee-jerk reaction is to grasp at it. All I'm saying is that parents should - stop - take a deep breath - ask as many questions as possible and educate themselves on the medication before making a decision that will affect the quality of their child's life (either positively or negatively) for the rest of their lives.

Also - is this neurology? I thought it was supposed to be a highly sprecialized medical field with the best of the best at the helm. I think they can do much better that what I saw last week.

Remember - DIFFERENT IS BEAUTIFUL!!