Before medication, Spencer had ZERO impulse control. He knew right from wrong, he just couldn't stop himself. We tried every parenting trick in the book before we chose medication. Nothing worked. It was frustrating and I began to feel like a failure as a mother.
The first tough decision was to try medication. He began treatment with Vyvanse which is a long acting medication. It worked really well for him. After he had been taking Vyvanse for about a year, someone pointed out to me that he appeared to have a tic. I called his pediatrician and told him about my concerns. He recommended that Spencer see a child neurologist. So we waited for six weeks to see Dr. Cheng at Child Neurology Associates in Atlanta. Spencer was diagnosed with Tourette Syndrome at seven years old. He could not take Vyvanse anymore because it is a stimulant like most ADHD medications. Dr. Cheng recommended we try Intuniv. The second tough decision was to try a relatively new medication.
I was terrified by what this meant for my child. All I really knew about Tourette Syndrome was from movies I had seen that sensationalized the disorder and from a 60 Minutes special I had seen about a camp for children with Tourette Syndrome. I was worried about the future.
Then I did my research and discovered that the one symptom I had hoped he would not have, coprolalia (cursing), was a rare symptom. His symptoms will likely get worse as he approaches puberty. (Insert sarcastic tone here.) Great because puberty is easy. But on the up side, they should improve through his teen years and he could go into complete remission of his symptoms as an adult
So we come to the next difficult decision. He has been taking Intuniv for two years now and in the past few months, it just doesn't seem to be helping anymore. We have an appointment with Dr. Cheng coming up on December 9th. (Yeah, we had to wait six weeks again for an appointment.) I am a little nervous about what he will recommend because at the last appointment he mentioned that we may have to try a combination of medications. I can't stand that he is taking one every single day. His dad doesn't want him on any at all.
This should be fun.
I am proud of you as a mother that you have dealt with all of this, and done the right thing for Spencer. I know Hubby doesn't want Spencer to be on ANY meds--no one wants Spencer to have a problem at all. I certainly don't. But it can't be easy for Spencer himself to NOT be on meds. He knows how he is supposed to behave, he just can't without the meds. I can see where he would stay frustrated all the time.
ReplyDeleteI know none of this is easy for any of you. I love you with all my heart, and if I could do something to make it all go away, I would. I am always here for you.
Thanks Mom. I love you too.
ReplyDeleteWatching your child suffer in any way is difficult but you seem to have great support in your mom. I'm sure his dad also wants what's best for Spencer and will eventually come around.
ReplyDeleteThanks Dee. There are days I think his dad gets it and others that he doesn't. I know he loves Spencer and wants what's best for him too. We just have a hard time agreeing on what is best. Thanks for reading.
ReplyDeleteIt's hard to ever watch your child go through something that you can't do anything about. I hope that your appointment on the 9th is a productive one.
ReplyDeleteSorry that you are going through this difficult time. I hope that you will be able to find a treatment that works. Thanks for sharing such a private part of your life. I wish you the best.
ReplyDeleteI understand that a parent would want to do anything to avoid medication first to safeguard from side effects. Other people even doctors telling you what to do or think when it's your child certainly does make the decision hard. I hope you find what's best for Spencer even if you have to compromise.
ReplyDeleteThose have been some tough decisions and there will undoubtedly be more. It sounds like you are making informed decisions, which is what's important. Your son is lucky to have you as his mom. :)
ReplyDeleteIt is never an easy choice when it comes to medication and our children. Hang in there. I hope that no matter what, you and dad can become a united team fighting for what is best for Spencer.
ReplyDeleteWow! I am so sorry. This is a tough thing to go through. It is heart breaking but I know the doctors will come with the right decision-whether to take the medication or not. I hope you find the right answers this month and dad gets on board for what is best.
ReplyDeleteHave you tried any alternative therapies and homeopathic medicine?
ReplyDeleteWow! Thanks so much for all the support. I debated whether or not I was going to share this part of our lives, but it is part of the roller coaster.
ReplyDelete@Not So Average Mama- I would be willing, Dad not so much.
I read your post twice before leaving this comment because as a mother to two boys I understand wanting the best for our kids and not seeing them suffer. I hope you find the best treatment for your little Spencer and wishing you the best.
ReplyDeleteThanks Dee. It is difficult to see our little ones suffer. Wishing you and yours well.
ReplyDeleteWe have the same problem with Owen.We tell him no a million times a day and he does exactly the same thing a minute later. The meds we had him on made him sad and we saw no change in him. Its hard Emily but you are doing a superb job. I hope you can figure out whats best for Spencer and maybe a drug that will help him. We love you too! <3
ReplyDeleteI'm so sorry to hear that the second Dx means that standard Rx for ADHD aren't an option for him. I have two boys with ADHD but the oldest is much more severe with almost zero impulse control without his medication. He is a 'fast metabolizer' so he is on a long acting that doesn't' really last that long and a booster dose in the afternoon. Our mornings are pure chaos and some nights can be too. It is hard to make these choices but I just always hope that making these hard calls when they are this age means they won't have so many hard decisions when they are older.
ReplyDeleteThanks Sarah, we love you too!
ReplyDeleteLisa- It is good to hear from other parents that we are not alone. These are hard decisions we have to make for our children and I agree that the hope is to make their future decisions easier. Thanks for reading!
It is a hard balance of wanting your child to be well and having them on a medication to be well. At the same time if you think about yourself, what would you do for you so you could lead as normal of a life as possible? The best thing you can do for your kids is to make sure they have a team behind them ... parents, medical support, teachers, family, etc. I hope the appointment goes well.
ReplyDeleteBeth- I have Asthma so I have been on medication since I was 3 years old. That is actually part of what makes the decisions harder. I remember how difficult some of the side effects were to handle. I know it is what is best for him, it is just a matter of finding the right treatment to help him live a normal life with the least side effects possible. Thanks for reading.
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