We were diagnosed almost a whole year ago. I say we because this disorder doesn't just affect my son, but the whole family. Cay will be 8 in 11 days. Lets start from the beginning.....
From the time we started our first year of preschool (maybe even before then) I knew we would most likely end up with this diagnosis. At every check up with the pediatrician, I would tell her that he was a spitfire with an endless supply of energy. Doctor would say "he's just being a typical boy." He stopped taking naps at about 2 years old and literally would run around in circles at time, from sun up to sun down he was just always full of activity.
Cay started preschool at 3 years old, it was a half day program and he attended in the afternoon. We would drop him off and the school would bus him home with the rest of the elementary kids. About a month in, the bus driver informed us that Cay was not allowed to ride the bus any more because he could not sit still and was constantly up and down and even under the seats at times. At our first parent teacher conference, the teacher spoke about how he just didn't act like other kids. During "Mat" time where all of the children sit on a mat and listen to a story or a lesson, Cay would be crawling around under desks or trying to talk to other kids or interrupting the teacher. At home, we noticed the same type of behaviors. He would constantly interrupt adults when they were speaking, wouldn't sit down at the dinner table to eat but instead take a bite then get up and walk around or crawl under the table. I again brought all of this up with Doctor at his next check up and she again said he is "just a typical boy." We had these same issues in our second year of half day preschool (except a new bus driver actually allowed him on the bus), kindergarten and first grade.
Once Cay got to first grade, his grades started to drop and his attention span (what little he had left), just disappeared. We were pretty much on a first name basis with the teacher. At the beginning of the school year, she said she would try a few different things to help get him focused. She put his desk right next to hers, tried to put him in groups with kids that were calm, anything to help him try to focus. It was heartbreaking to hear that kids just didn't want to be around him because he was so distracting and would get them in trouble along with himself. We even took a couple trips to the emergency room because of his inability to sit still. Twice, he was under his desk for some reason and cut above his eye. Luckily they were able to use glue both times. Once we got to the end of the school year, the teacher told us to seek some kind of help. I contacted the pediatrician and got an appointment.
At the appointment, Doctor asked some questions. She asked about grades (his had dropped), behaviors (I brought all of our notes and emails from our teacher), injuries (gave a rundown of the er visits and had her take a look at his legs, which looked liked he was abused - they were bruised and scraped up and down both legs), and finally agreed that this was not "typical boy behavior." She said that they usually don't try to even start the diagnosing process until the child is at least 7 years old and has shown some drop in grades. I was relieved that someone finally realized what we were dealing with but also scared because I didn't want to put my child on medication. She referred us to a therapist and we made an appointment for the following week.
Our first appointment with the therapist was surreal. At the beginning of the hour long appointment, she handed us questionnaires to fill out. One was for us and one was for the teacher, we would take these home and fill them out then bring them back to her for evaluation. After she evaluated the forms, she would call our pediatrician and discuss the results with her. She spoke to us about the disorder, what we could expect from the visits, and medication/treatment options. She somewhat alleviated my fears of the medications - that Cay would get addicted, or would become a zombie, or would have problems later in life from it. Here's the best part - at the end of the appointment, she told us that we could take the questionnaires home but that she could call the doctor and set up another appointment with her because she could basically diagnose him based on his behavior at this visit. FINALLY - someone understood what we were going through! We called the doctor a few days later and set up an appointment to start the medications.
Our very first medication was Vyvanse at 20 mg (lowest dose). We were on that for a month and decided that it wasn't really working. It was a once a day pill and it took the edge off of his hyperness, but didn't make that much of a difference. Doctor upped it to 30 mg and that was better, but then he wasn't sleeping. So we got a pill for that at the next appointment along with a pill to increase his appetite because he lost weight. After a few months, he got "used" to the 30 mg dose, so we switched to a completely different medication - Concerta. We started on the lower dose, it wasn't really lasting all day so we combined it with a Ritalin "booster" at lunch time. This was keeping him up at night despite the sleeping pill so we upped the Concerta to a higher dose and d/c'd the Ritalin. That was working great until about homework time, so we added Straterra in the afternoon, right when he got home from school. This was also causing sleeping problems, so we had the sleeping pill upped to add an extra half dose at night. This is our 3rd month on this combo of medications: Concerta 27mg and Periactin 4mg (appetite pill) in the morning; Straterra 10mg in the afternoon; Clonidine 0.15 mg at bedtime.
Yes, this seems like a lot of medications for an (almost) 8 year old. I am hoping that we can stop taking the Periactin soon, we haven't lost any weight in the last few visits. That does still leave 3, but I am hoping that we can work with the therapist on some different techniques to help control his impulsiveness and attention span which can help us with maybe lowering doses or eliminating the Straterra in the afternoon.
Thanks for reading our story, I know it is a long one! If you have any questions, suggestions, comments, or are going through this same thing - please leave a comment!!!
I hope to continue to update this blog with our progress and setbacks.
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