Friday, November 25, 2011

Medicine Journey: the Ups, the Downs, the Holy Craps

I tend not to write about medications and the boys. Not because we don't believe in them, but mostly because when it comes to things in this blog it really is trial and error about things I have done. When I have been successful and not successful. Sometimes I try to give pointers where other parents can look for help and support. But mostly it is all about our own journey. Even the meds we give the boys are our own journey. How we use them and why we chose one over another...is all based upon our own particular circumstances. I have no background in medicine. I don't want people to think I have any knowledge about meds except from my own experience. So never quote me. Never think I know what is best for you or yours. I can't explain why some work or not. All I can do is travel the medicine rollercoaster and hold on for dear life just like everyone else.

We started the boys on meds when they were five years old. I remember well when we gave CM1 his first pill. We weren't quite sure that we wanted to do that. Psychiatric medicine is so frightening and almost twenty years ago there was even more of a stigma attached to it then there is today. Luckily I had a cousin whose son had been diagnosed with ASD several years earlier and I called him for advice. His response was, if they can't focus in order to take in the therapy, what good is the therapy? It actually made perfect sense to me. Of course by the time CM2 was given medication at five he looked at us square in the face and asked "what took so long?"

He knew he needed help. He knew he had problems. He knew that his brother got help for his focusing issues and he wanted to know why we hadn't given him the same meds earlier. Yep he was always a bit of apiece of work. Now I am certain that all his teachers thought he needed meds from a very early age. There is his nursery school picture where the teacher is holding him on her lap during the class photo.  Honestly, it was the only way to get him to sit still while the photographer took the picture.

The schools and teachers tried all sorts of behavioral modification and one to one interventions. But to no avail. The boy just could not focus. In fact it was so bad that he couldn't even make decisions. In kindergarten there were the "corners" that children got to pick from to play during free time. He would just wander around the room unable to decide which activity to choose. He would walk in circles, almost in a pacing manner. It wasn't until an adult would intervene and choose one for him that he was able to begin to settle in and play.

Since that time we have tried many different focusing meds. In fact focusing meds have changed and been reworked by drug manufacturers in the last few decades. You do have so much more to choose from today than we had all those years ago. This is such a good thing. Everyone is different. Some meds work for some while others not so much.

Now I am not saying that every person with ASD needs medication for focusing. In fact many doctors actually think that focusing meds have more to do with helping with the auditory processing issues found in so many on the spectrum than with actual adhd. Honestly in my boys cases, they tend to have both issues. So taking meds for the boys becomes the proverbial killing two birds with one stone.

What I am trying to tell everyone is that if there are issues, meds can make a world of difference to the individual. Life does become easier and being able to understand and focus in on the therapies being  offered is so important. But remember a big big big caveat...meds alone do not solve the issues. It is meds inconjunction with behavioral therapy that helps. Pills are a miracle in my book, but it is a two-pronged approach for anyone with a disability. Don't forget.

Also if a teacher or school administrator tells you that all they need is a pill and everything will be hunky-dory, you need to pull out your "inner bitch" and go all autism-mom-warrior on their butts. The school needs to provide appropriate support, behavioral interventions and academic help to a child with a disability. Your child does not loose his eligibility for help simply because they go on medication. So don't let anyone ever tell you that they do. (Yep heard that line so many times from parents over the years. When some districts try to violate a child's rights it just proves that some so-called educators really should not be in education at all, especially special education.)

Now I am not saying that every person with ASD needs meds of any kind. It depends on the individual. It depends on the issue. In fact there are so many comorbid issues associated with our children that the person you choose to help with the meds needs to be able to parcel out the differences and understand how meds react differently in the autistic brain. It may not be easy to find the right person where you live, but if those near you don't have an expertise in the area, they should at least be willing to learn, study and even question themselves.

I think the hardest part of giving your child medication of anykind, whether its for adhd, anxiety, seizures, pain or even antibiotic, is watching for some of the side-effects. Some of them are rare but can happen without warning. When CM1 was in 4th grade the doctor prescribed risperdol. Now I was not so keen on this drug. It's use for ASD was pretty new at the time and I wasn't sure it had been studied enough in children.

Yet as with many drugs for ASD, especially at that time, medications were prescribed off label and almost twenty years ago they were pretty new. OK. So we tried it. I got a call from CM1's teacher after he had been on the drug two days, that he was not feeling well and said "he thought he was going crazy." I rushed over to that school, broke quite a few speed limits on the way and brought him home. We ceremoniously threw out that bottle of risperdol together. Unbeknownst to me one of the side-effects of that drug is psychotic episodes. I kid you not. Well thems all she wrote. Never again was that drug going to pass threw my children's lips.

But that was not the end of our trial and error with medication. We have been threw so many medical cocktails for the children that after awhile you wish beyond wish that while they investigate the causes of autism, someone would investigate how to find the right medication for your child that doesn't cause so much trauma. I know they are experimenting with a genetic test for cancer drugs to see which ones work best on which cancer and for which patients. I really really really want someone to investigate this for autism as well.

Take a little blood, throw it in one of those rotating machines you see in a lab, put it under a microscope, maybe a spectrometer (I have no idea what that is, just like how they use on CSI and thought I would throw it in here) and walla they can figure out what meds would probably work best for your child.

The reality is that medication can be the godsend that you want. It can help your child focus. It can help them control their meltdowns. It can help them deal with their sensory issues. It can help them deal with any myriad of anxiety issues. It can help them with seizures. It can help them with skinpicking or hair pulling. It can help them with tics. It can help them build up the courage to leave the house. It can help them deal with everything that they think they will never be able to deal with. But getting the right cocktail takes time, effort, anxiety (on your part), dealing with side-effects and above all keeping a good eye out for whether your child is functioning better, worse or there is no effect at all.

I have to tell you that those blackbox warnings need to be taken seriously. No matter what, find out what the side effects happen to be. And above all remember just because a medication worked for someone else it doesn't mean it will work for yours. Heck, the same medications don't work for my boys either and they come from the same genetic background.

Also one more thing. If your doctor ever tells you to keep going through the side effects and wait to see what happens, or if they tell you it takes weeks or months to work (my boys respond to any and all medications almost immediately), or if they tell you that you are misreading the situation or that they couldn't be having a particular side effect because it is too rare, FIRE that professional. That's what we did with the original doctor who prescribed the risperdol. He kept trying to get me to try it again on CM1.

On the other hand, CM1's new seizure doctor prescribed a new medication and CM1 is definitely channeling one of the more egregious side effects. Well that man called me back ASAP once I left a message with his answering service and not only did he not question what was going on, he thanked us for being so aware. It's the only way he can do his job effectively, he told me. Now that is how a doctor is supposed to respond.

Whether you want to use meds or not is up to you. Discuss it with professionals and seek out all kinds of advice. But if you do, keep a good eye out for changes in your child. If they are good changes-HURRAY. But if they are bad changes. If their mood becomes hostile. If they can't sleep. If they get stomach aches. If in any way shape or form their personality is effected. Call that doctor and with their help stop that med (Remember: your child may need to be weaned from a  med. Going cold turkey can cause even more problems.)

In the meantime, we are working on changing CM1's seizure meds. No I am not sleeping well. I am anxious, I am certain you can relate... But the original meds he was taking were not working the way they should and in the new doctor's own words.."in today's day and age you don't settle for almost doing its job. You find meds that do what they are supposed to do. Or at least you make a concerted effort to find ones that do work."

So we try, we watch, we wait and above all we worry. Fingers crossed though. Maybe the next med will give him the seizure free life he is entitled to.

Until next time,


Elise

Update: Something I forgot to mention in this post earlier...yes I thought about this in the middle of the night...

When your child heads into puberty, remember that medicines that have worked before may not work right anymore. And the opposite is true too. Some medications, for focus or anxiety, that have not worked previously may work now.  Hormones and their interaction with medication is not really understood  well just yet, but there is definitely some type of interaction. Side-effects that may have never appeared before may rear their ugly head. So just watch and be aware.

Also as your child ages they may need medicine readjustment because of growth rate and weight gain or loss. Your prescribing physician will want to keep a watch on your child (or  keep a watch on yourself if you are being given medication) at least every three months (actually that is required by federal law). In some cases your doctor may want to see your child every month, especially when you are reevaluating their medical cocktail.