Wednesday, April 1, 2009

Life's Trials

My hubby didn't really want me to post about our trials with ADHD, but I feel I must. My 7 year old son, Harrison, was diagnosed in early December. It has been a rough road. Since then, we have tried 4 different medicines and are still looking for the right one. I know, some people out there don't believe in medicating children for this and think it is over diagnosed. I used to be one of those people. BUT, when you watch your child struggle it is hard to not do all you can to help them. This question was asked of me... "would you deny a hearing impaired child a hearing aid? A crippled child a wheelchair?" The answer is no. That question ended my fear of medicating my son.

We started on Vyvanse 30mg and immediately got tremendous results. He went from below 1st grade level in school to right on track in a matter of weeks. He had struggled with reading, and he is now reading chapter books, in a mere months. The improvements were almost too good to be true. I remember crying tears of joy when I spoke with the teacher that first day, hearing how well he had done and how proud he was of himself. She said it was as if a light had been turned on for him. The good news didn't last for long.

He began having MAJOR sleep issues and lost a huge amount of weight the first month. Both side effects of the medicine. The sleep issue was my main concern, because after a month of so so sleep we had an entire different set of problems to deal with, all due to lack of sleep. I know how I get when I miss a few hours, so I could only imagine how he must be feeling after a month of struggles. So, we decided to switch medications, to Adderall XR. Whoa! What a mistake that proved to be. After two weeks, I didn't recognize my son. He was mean, aggressive and very hostile. Hard to handle. Ugly faces, actions, words. Too much for me to deal with, AND, he still wasn't sleeping. We decided to try the Vyvanse at a lower dose, 20mg, the lowest they make. Since we had initially had great results with that, we figured it was worth a shot.

We stuck with that for another month or so but still did not see the results we were hoping to see. In the meantime, Mommy was having a breakdown. It is very very hard to watch your child struggle like I had been doing for the past few months. The medicine was now working against us. He had bigger issues now than when we started. We decided to seek counsel from a Psychiatrist.

After our meeting with Dr. Rooney, I felt confident that we would find a solution and the right medicine for Harrison. We tried the Daytrana patch at a 10mg dose. What a pain the the butt they ended up being. Hard to use and, again, we did not get the desired results. It was suggested to me that stimulant medications may not be the way to go for Harrison. That brings us up to date. We are now on Strattera 10mg. He is calm. He is close to being the little boy I know again. BUT, still some struggles in school.

It is hard being the parent of a child with ADHD. There are no support groups that I can find in the area and for the longest time I have felt so alone in this struggle. I have since found some friends who are also dealing with this and that has helped. That is why I have decided to go against the wishes of my husband and post this blog. I know there are tons of Moms out there dealing with this. If this reaches even one person that it can help or connect me too, then it was not in vain.

As for us, we are still struggling. It is a daily battle, but one we hope to win soon. I don't regret my decision to start the med's for Harrison, we just have to find the one that works best for him. In the meantime, I will keep on keeping on.


Sarah said...

I had several students with ADHD while teaching, it is hard to deal with. I hope you can find some meds soon.

Karen said...
This comment has been removed by the author.
mom of 2 great kids said...

Hi Jennifer
I have 2 children who are ADD. My son also has asbergers (mild thankfully) and a processing disorder. I have been through the battle and guilt of whether to medicate and understand we all come to a decision based on what we fell is best for our child. (not what's best for the school or a teacher although i know their job is very tough). Each child is different, for my daughter the stimulant meds work with just a small dose. We have found vyvanse to be the best for her. We switched her to it as she was having ok results with other meds and we saw how AMAZING it was for our son. She has stayed on it a year just fine. My son had tried all of the meds for ADD some worked for 2-3 hours max, most had anger, afternoon crash, appetite etc side effects. We finally decided none would help until in desperation we tried the new vyvanse 30mg. (only dose avail still) We had seen the difference in what 2 hours of focus vs nothing was for him and we wanted that success for him (and self esteem boost)! Initially he was awake 19-20 hours a day and hyperfocused at night.. I'd find him drawing a replica of the globe at 1AM. He'd say mom this is my time. I can write stories, draw..he was fine with his schedule.well as you know mommies get cranky. The Dr. told us try to tough it out a few wks. (He was 9) He did taper off a little each night. After 3 wks he had balanced the sleep and he was back to very close to his old sleep habits. He did lose 7 lbs which was a concern but we made sure he ate a great bfast (nutritious) and his teacher was kind enough to see that he ate his snack at least a few bites. At any rate he went from doing 10% of the curriculum to doing 90% with all A's!!!! He was not zombied just able to pay attention and do his work. He still has a processing delay so it took him extra time to get things done but he was so happy and proud and we were for him!! Then came the bad side. 5 mos in, he started having what the dr has now told us are called sensory hallucinations. He would be almost asleep, but still awake and started saying he felt like there were bugs crawling all over him. He would escalate and start to panic. The first night I was ready to rush him to he ER. It was frightening. Night 2 was worse. took me 2 nights to think ok this isn't a weird nightmare thing. Called the Dr told him I stopped the med (was all I could figure..that or zytec..which i have since read that antihist. can cause halluc in some people..not common though). I took a full 6 mos for the fear of bugs under his mattress and in his room to stop. At 10 he was sleeping on the floor in our room and we slowly worked back to the floor in his room and evnetually his bed. (after modifying it. He still has some anxiety he never had before. Some say maybe he would have had it anyway. I'll never know and tell myself we didn't want to put him thru that we did the best we knew to do for him with professional on board. I don't say this to scare the heck out of you, rather for awareness of long term stuff I never had heard of and dint' know to watch for. (I know you're ready to delete but keep reading). My daughter was on Concerta for 7 mos and then developed EXTREME anxiety and fears..wouldn't go to play with her best friend next door without us (age 11). We took her off immed per Dr. it was gone. My point is for you to know to be aware that even months out on these meds side effects can show up. I at first did not even think it was her medicine since she was great for months. As I said our daughter still takes vyvanse with no side effects..although I was afraid to keep her on. I take some heat from parents who are clueless of the frustration these kids endure. They have no idea of what a heart wrenching position we are in in trying to help them. I have recently read a news release that vyvanse has been found to cause this side effect. I now don't feel good having my daughter on it..but she is in H.S and having good succes. We have also over the years looked at Integrative Medicine (meld of traditional w/naturapathic/homeopathic and nutrition) It was so overwhelming and cost prohibitive. I personally know 2 families who made pretty good strides with it (that I'd love to see in our son) but again the cost is not do-able for us. One of these parents gave me the book by Dr Stephen Bock..healing the 4 A's of childhood. It is an amazing book tying together the epidemics of Autism spectrum disorders, ADHD, Allergies and asthma. I'm sorry I don't have an answer for you. I do feel your pain in the search for an answer. As for our family our goal is to get our kids off any meds as they are will just take us some time and more trials to do so. Sorry to be so long but hopefully some of this info is helpful to you or someone else someday. Hang in there and good luck!!