Drugs are bad, so…let’s give him drugs?

In an effort to greenify our world a bit (and uncomplicate our lives) we decided it was  time to try a local doctor to prescribe Doctor Do-be-do’s ADD meds, instead of making a seventy mile round trip to Erie every other month. We made an appointment for him to see the same local psychiatrist  Little Miss sees for hers.

I guess I’d forgotten how that doctor was. After all, he prescribed talk therapy for her to get into her feelings about having autism and how that depressed her. Seeing as she operates on about an eight-year-old level, with delayed language and is about the happiest person I know….right. No sense at all. How could I have forgotten?

The morning of the visit comes, and the boy drops into the chair at the psychiatrist’s office, hunched over inside his hoodie, as he’s wont to do. Eleven year old boys. What can you do?

The psychiatrist starts talking to him, and the boy starts on this very interesting tale about how he never plays with his sister or brother (false), that he hasn’t any friends at school (mostly false), that he never talks to his parents about anything (oh, really?), and so on, for about thirty minutes. I tried to gently correct him a couple of times, but the psychiatrist kept giving me the stinky eye, so I backed off. We just came for the ADD meds. If the doctor wants to analyze the kid for fun, let him…

So the interview gets done, and the first thing the man says is that he really shouldn’t give him the ADD meds: Amphetamines aren’t any better than alcohol or any drug that allows one to hide from one’s feelings and pull away from other people. Because the child self-reported his isolation, he really shouldn’t get the chance to have the drugs at all.

BUT.

As long as the child was reporting this isolation, and he was lonely, it would be an awfully good idea to put him on Zoloft. He handed me a prescription for that and also something to make him sleep at night.

What??

I looked the doctor in the eye and calmly explained the boy needed the ADD meds to be able to get through the school day. Four-fifths of our household functions better on those chemicals, I said, and he really needs an increased dose because after four years the minimum dosage is wearing off before the end of the school day.

He grudgingly gave me enough till the end of the school year.  Then we have to meet again.

Let’s face it, I’m not one of those people that wants to tranquilize their child into submission. We’ve experimented with a number of different ways to help the family members do better, vitamins, fish oil, minerals, diet, holding off on chemical intervention as long as possible, but the fact remains that we are ADD-infested, and some sort of medicine helps school and life performance. The Cabana Boy reminds me all the time how much better he functions when medicated, and Little Miss is the same way. What she retains is significantly better, and her thought processes are obvious in their clarity. Doctor Do-be-do is the same. (The Captain just won’t take his medicines, so we’ll leave him off the list.)

So. Now the psychiatrist wants the family to come to therapy, and gives drugs the child doesn’t need and fights us about the drugs he really does.  I understand this line of thinking–When one of my older daughters went to see a mental health professional some years ago, I was incensed that they just threw medicine at her, and didn’t offer her therapy, which is likely what she really needed. I know the doctor was practicing good medicine by interviewing the child–but maybe a quarter of what the child told him was true! And he didn’t want to hear the truth from me.

So do we go back to the old doctor and conduct the simple medical transaction, or do we go with the guy who wants to give an eleven-year old adult depression medication? When the professionals can’t even agree, what’s a parent to do?

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Vaccine? Not routine

Over the past several weeks, Little Miss has been having little twitchy-stretchy movements of her neck, arms and legs. I first noticed it at Disney, when she was holding her ears a lot, and I thought the unusual movement might be troubling her. But her classroom teacher noticed it too, so we had her checked out, and had her physical at the same time.

The nurse came in and checked basics, then started outlining the vaccines it was time for.  I listened politely, then told her “No, thank you.” She looked at me like I was some sort of freak, and said she was due for a Hep A and chickenpox.  Apparently she thought I had a hearing loss of some sort. I politely insisted, “No, thanks.”

Then I waited for the doctor to come in and fire us.

I’ve heard about a lot of autistic kids’ parents losing their medical care because of their stance on vaccines. As a professional with standards of practice myself, I can understand the doctor’s wish to distance themselves from a patient who flaunts his recommendations.

When I was a kid, you got polio vaccine and smallpox vaccine. Now they get 20 shots before they’re three. I’ve read a lot about the vaccine situation. I’ve seen courts go both ways. I don’t know. I really don’t. I personally know some parents whose children faltered into autism after they received their shots. Not ours–they’ve got it in their genes. But my gut tells me that if something chemical/environmental in my children doesn’t work or process correctly, then adding a vaccine for a disease they may never be exposed to or might sail through just fine doesn’t make sense.

All the kids had their baby shots, before we realized what was going on with them. Little Miss got her tetanus booster last year, because she’s always digging in the dirt and playing in the woods, and I don’t know what she’s going to get into. So it’s not like they never had protection.

I’m just being extra cautious.

I’ve had this conversation with the main pediatrician at the office. He suggested vaccines. I asked if he could guarantee it wouldn’t impact their autism. He admitted he couldn’t. I said no, thanks. He understood. I hoped this was the doctor we drew.

It wasn’t. We actually got the old-fashioned doctor who hadn’t understood anything about autism any other time we had been there ever. Great.

But it was a miracle.

Somehow he had been educated. (Maybe because as we have the best school autism support program in four counties, all the parents are moving into our district. There’s a lot of us.)  He asked all the right questions. He wanted to know, even though her language was impacted, if we were exposing her  to music and art and other means of expression, because children affected with autism were often gifted. He said he thought the twitchiness was just growing pains, because our girl is in the 95% end for height.  He reluctantly agreed on the vaccines. I was pleasantly surprised. Shocked even.

So we dodged the bullet this time. Certainly it will come up again. If any of them want to go to college, they’ll likely be required to have boosters of MMR and chickenpox vaccine. If the vaccines are so effective, shouldn’t they last longer than 15 years?  You’d think so. I just don’t want to take the chance that all the progress we’ve been able to make could be impacted by negative effects that could last 15 years–or a lifetime.

Help! I need somebody!

Sounds simple enough: everyone has come to the conclusion Little Miss would be better off with a mild dose of ADD meds. So let’s get some.

Not so easy, as it turns out.

Parents in Pennsylvania can apply for a state medical card for their children with autism, no matter what their income, thanks to a special “loophole” provision that simply acknowledges that some conditions just require a lot of money thrown at them. This card is a lifesaver–it covers wraparound services, which are normally not covered by private insurance. (Although the state did pass a provision for autism to be covered by insurance here.)

Neither the Cabana Boy or I have insurance at the moment through employment, so we depend on this card to cover both children who are diagnosed with autism issues.Not all doctors take the state’s card, of course, because the state pays less than traditional insurance companies. We’ve just paid out of pocket for those doctors, like the pediatric neurologist who has seen them for the past five years, because there are no other autism specialists for 100 miles.

This doctor has seen Ditto Boy for several years to prescribe his ADD meds (since the pediatricians won’t do that any more either). Seemed simple enough to set up an appointment for Little Miss and get her checked out for meds as well.

Didn’t it?

The doctor’s office called to reschedule twice and then the day before the appointment, called to cancel. She gets the state medical card, they said. We can’t see her. “But you saw her for three years; we paid you money,” I remind them. We’re not allowed to do that. We could lose our license, she says and she hangs up. Before I can say, “well then I want my $1700 back!”

A little angry by then, as we want to get started on this right away (and now we wasted two weeks waiting for them), I set in to start calling around for alternatives. The managed-care office gives me half a dozen phone numbers, most of which go to satellite offices of doctors in Pittsburgh who are in my county one day a month and think maybe I could see them some time by February. Or March. (Say what?)

I finally find someone who will see her within this month, but it’s only the intake worker.  The doctor can’t be seen till some time in December. Maybe. Or January. It was the best deal I got out of two hours of telephoning. I took it. At least December is before the year’s half done.

It’s a sad situation. Many children need services and there are very few child psychiatrists who can provide them. A complicating factor that I’ve found in working with families, of course, is that there are some parents who just can’t discipline their children or teachers who can’t control their classrooms, and they all rush to get the children medicated. And, of course, there are parents with mental health issues or other limitations or others who just can’t figure out how the system works, who probably can’t make as many connections as I have in order to get the services in the first place.  Bottom line is, kids on state cards get the back of the line, most of the time.

I’m grateful to have the card, don’t get me wrong. We’ve been fortunate to have many hours of services at no cost, and they have done our little ones a world of good–probably saved the state the necessity for caring for them lifelong. But when it’s so hard to get services, is it any surprise when parents who have reached the end of their rope take advantage of an opportunity to get help like they have in Nebraska?

In that Time article, the Rev. Steven Boes of Boystown says one root of the abandonment problem is that there is simply not enough help for parents in crisis. In Nebraska, for instance, there are only six child psychiatrists in the entire state, he says. “It’s a national problem … insurance often won’t pay after six visits — so if the kid’s not ‘fixed,’ you’re out of luck. States have a jumble of services. It’s a puzzle with missing pieces.” ‘

As a provider of services myself, I know you can’t treat everyone like an emergency. And, in all truth, this isn’t an emergency–I’m just anxious to have my children be the best they can be. But when some of my parents complain, “There oughta be a law…” I guess I can’t argue with them.

Skip the ammo, pass the Nyquil!

So Little Miss is home sick. She’s finally learned to share–though the sharing of germs was not really what I had in mind at the time of that lesson. Yes, that means I’m home too, hacking up a lung. She doesn’t seem nearly as sick as me, but that doesn’t reassure me much.

I don’t know about other kids with autism, but Little Miss is  particularly oblivious to sickness. She very seldom indicates that something hurts, even if I’ve seen her fall. It may hearken back to the early days when she would just be ‘somewhere else’ every time she didn’t want to deal with whatever was going on in front of her. Her pain threshold may be different than everyone else’s–last fall she got a nasty case of plantar’s warts and sat and watched as the doctor scraped off the remains without any anesthesia. Didn’t seem to hurt her a bit. The doctor was amazed, but then she has a kid on the spectrum too. So I think she was more interested in understanding why.

Apparently Fate believes Little Miss has enough challenges and doesn’t inflict passing viruses on her often. So we’re grateful. The consequence though is that sometimes I don’t realize something’s wrong with her when she is sick. I’ll never forget the day I ended up at the doctor’s office because she suddenly spiked a 104.5 degree temperature. Turned out she had a major strep throat that must have hurt like hell, but she never said a word. The doctors looked at me like I was the worst mother ever.

After 8 years, I’m finally starting to detect non-verbal signs of something not quite right. Her behavior and focus diminish when she’s not well. She doesn’t listen, as if she’s elsewhere. Alternatively, sensory events that she’s been able to handle for a long time will set her off. But none of these are guaranteed. She’s also becoming more verbal and I’ve tried to explain that if she hurts or doesn’t feel good, she should say something.

I’m still wondering if I should buy a mini-doctor’s kit to be able to check her ears and throat every so often, just to be sure. The doctor’s comment was “No, no, that’s not necessary. By the time it gets bad enough she has to have treatment, it will be obvious.”

Somehow, that’s not so reassuring.

Meantime, please pass the tissues and the cough drops. Enough to share. Thanks.