To Medicate Or Not To Medicate?

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Often I will see posts on message boards from other parents asking advice regarding a certian medication or if they should medicate their child.

I am not talking about vitamins, other supplement, or esstinional oils. I am talking about medications like clonidine, abilify,  depakote, ritilan, lithium, etc. The list can go on and on, but this list gets the idea acrossed.

I always answer the same way …

Trying to decide if you should medicate your child with Autism (adhd or any other condtion) is a very personal and difficult decision to make.

First you have to decide if aggressive behaviors or focus issues can be tolerated. Not just for the parents, but also for the child’s quality  of life.

Do these behaviors make it hard for the child to learn both at home and in school?

Also does the child’s behaviors create a concern for their safety and the safety of others?

Has the use of therapies help to ease the behaviors? Like Aba, RDI, Son rise, horseback riding, etc?

Have dietry changes been tried? GFCF diets, the removal of certian dyes?

Has then been any medical testing done to rule out any other conditions? Like Celiac Disease, seizures, any vitamin deficanities (vitiman d, b12, etc), food allergies?

Information on Autism.

Other medical condtions that  are similiar to autism.

10 medical conditions that are mistaken for ADHD or Autism.

Have any hollistic approaches been tried? Like cranial scryaial therapy, esstinional oils, DAN doctors, acupuncture, supplements, etc? Often these approaches are costly and not covered by insurance. Also there are certian “treatments” that claim to cure or help Autism, but do nothing or harm the child. ****SO RESEARCH ALL HOLISTIC APPROACHES THROUGHLY!!!!****

If these approches alone have failed, then maybe it is time to see a Neurodevelopmental Pediatrician or a Psychiatrist and discuss the possibility of using medication to treat the behaviors.

Now understand that the use of medication will not fix all of the issues 100%. It will take the edge off the behaviors, but it is also up to the individual to take themselves the rest of the way. Meaning that depending on the level of understanding/ mental abilities of the person they may not be able to make the connection that they have to stop certian behaviors on their own – or simply they cannot help themselves and it is beyond their control. (Much like my daughter.)

Also understand that using medication is all trial and error. It is about finding the right drug for the individual. So it may take trying several different medications before finding the one that works. There may be a few increases that are needed in the dose of the medication. There may come a time when the medicaton may need to be changed because it has stopped working and the dose cannot be increased. A combation of different medications may need to be used.

Another thing to understand, is that because each person’s body is different, medication will react differently for every person. One person’s miracle drug maybe another person’s worst nightmare.  So when asking for advice online about medicine take what people say with a grain of salt and do not accept it as the final word. You have to experience the medication in action to know if it will work or not.

One other thing to do with medication, research and do more research! The pamphlets that a pharmacy hands out or even what the doctor hands out does not provide all the possible side effects. So research the medicine on the internet with several different websites. Also research possible drug interactions with any other prescribtions, over the counter medications, vitamins, supplements, and food.

If possible, try a new medicine on a weekend or school vacation. This allows you to see how your child will react on the new medication.

Also there may be some side effects of a mediation that you will have to decide if they can be lived with or not. For example, Abilify makes it harder for my daughter to regulate her body temperature in extreme heat or cold. I had to decide if having her aggressive behavior be off the charts was worth watching how long I had her outside on hot days or extremely cold days. Having Keri’s aggression being lower won out in the end. It was worth having to limit her outside time in the summer or winter. Also, I refuse to have my daughter on any medication that will make her a zombie. I want my daughter to still have her personality and be able to enjoy life. I will not keep her on medication that will endanger her health morw then what it needs to be. Keri was on one medication where there was extreme weight gain. She could not control her eating and would just eat and eat. I had taken her off that medication asap!

Speaking of side effects, if there is a side effect that you do not like or is extremely harsh – then do not be afraid of taking the child off the medicaton. Check to see if the medication requires gradual removal first and always talk to the doctor when taking a child off the medication. The doctor may prescribe something different.  Depending upon the severity of the side effect, you may have to take thw child to the hospital.
The very fist medication that Keri was on worked great the  first day. Then the second and third day things were much worse … Keri kept repeating herself and getting stuck on one vowel. Her aggression was 10 times worse and she was clingy. She wanted only me near her, which was never an issue before. Keri’s stomach was hurting her. I called the doctor and she prescribed two different medications. From there , Keri has been on several different medications, some have worked great, others not so much.

Sometimes, there has to be a combination of therapies, dietry changes, and medications going at the same time before improvements can be seen.

I know this to be true with my daughter. Before medication, Keri (who has adhd, autism, spd and possible mood disorder-nos) was extremely hyper and most of the time unable to focus. She would be all over the place. I constantly had to be 2 feet behind Keri at all times. She would focus for a few seconds on music video or a song. Then she would be off again, into something else. Keri would destroy things, be aggressive, and was non-verbal. Once she was on medication, Keri started to learn, she became more verbal, she is now able to read, write, and do basic math. She is able to focus on thingd and sit still for a while. I do not have to constantly behind her all the time. Keri is sleeping through most nights. Before she would scream, fight and cry until she was exhausted. Sleep would come to Keri only then. She would sleep for 2 to 3 hours and wake up for a few more hours before sleeping again for a few more hours. She would play or smear feces on the walls during her wake up time before falling back to sleep. I never had a true night’s sleep in several years during that time. Some how I managed – but would never want to go back to that time! With the medication, she still is aggressive and I never know what I am going to get from her moment to moment or day to day. But for the most part, Keri can go out and do things. Once in a great while, I can go out and have a social life. That wad not there before. A little progress is better than no progress.

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Boo boos, bruises & hard decisons

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Being a human chew toy is not my idea of fun. Neither is being a victim to my daughter’s rages – which happen often … more often the I care to admit. But it is a not so fun part of her autism.

It is a very real part of her autism that affects our day to day routine. There is no real rhythm or reason as to why she gets this way. I  know a few triggers are her father, vehicles that look like ones he drives, being told no, having to wait, being over tired,  changes to the routine,  other times it is just because of no real reason at all.

We have a schedule. She works with a BCBA and a BA. She has an out of district placement for her school in a very good program. We have done ABA therapy. We have tried a gluten/ casein free diet – she was in that small percentage  where the diet does not improve her behavior. We have tried cranial sacral therapy- which helped, but got to be too expensive.  It’s not covered by insurance.  We have tried esstinional oils – which did not work &  got to be costly.  Also again not covered by insurance. We have tried pecs, reward boards and other ideas.  We have tried various medicines. I have priced out a DAN doctor, but cannot ever afford in a million years. Again they do not accept insurance. She sees a psychiatrist.  It’s more to monitor the meds then being therapeutic because of her lack of real conversation skills. We also have tried horseback riding and music lessons. I have also tried compression vests , weighed blankets, joint compressions, brushing her limbs, in various other techniques.

We have even gone as far as having her hospitalized for her aggressive and violent behavior. That was when her behavior had become so extreme that she was a  danger to herself and those around her. So within the last 10 years we have tried a bunch of  different options – some have worked others have failed. Another thing about my daughter, is that what works today may not work tomorrow.

Right now I’m at the end of my rope. So I feel like I am at a dead end road. Her case manager  and 2 current therapists have also said that there is nothing else they can do for her. The right now, at this time, when she aggressive and violence all I can do is try to redirect her. When redirecting fails and she is trying to hurt herself or someone else, I have to restrain her. It is not something I’d like to do, but it is something I have to do. She is so incredibly strong for such a young age. She is about the same height as I am now and about 40 pounds lighter then me. I can barely restrain her without her breaking away. She is going to be so much more stronger then I am. I do not think I will be able to restrain her properly within the next year or two.

I have made the decision, the very very very hard decision, to have her placed in residential care. I think it is the best decision for her and everyone around her. This is mainly in regards to her aggressive behavior. We have not been able to really go out and do things. She well receive the 24 hour support that I cannot provide. Also she will still receive all the same therapies as well as ABA therapy. I personally cannot afford to pay for ABA therapy out of pocket it is so expensive. I have a Limited income which pays for a roof over our heads , utilities, food, clothes, and maybe one or two small outings a month.

Putting her in residential placement, does not mean I will abandon or stop being her mother. It just means I will parent her a little bit differently. She will still be able to come out on the weekends or during the week to see family and friends Or to do other activities. It is a decision that will not happen overnight. It will take sometime before this becomes a reality.

So before you judge, everything under the Sun I could possibly do , I have tried. It now become a question of what is safest for her and those around her.

**Check out the movie Fly Away http://www.imdb.com/title/tt1697920/