I have been incredibly busy this past week with doctor appointments, sports activities, school stuff, ballet stuff, prom shopping, church, etc, and so I have been remiss in replying to some of your questions. This evening I will steal the laptop away from my kids and try to answer everyone. We are taking Caroline to her psych doc today for a med adjustment, but he has also just published a new book on
ADHD meds, originally entitled
What to do When Nothing is Working. That certainly describes a lot of our lives, doesn't it? He changed it to some other title, which now I forget. I will get the title, read the book, and post a link to it on my website ASAP. Should be quite interesting.
I am stressed today. This whole school decision is wigging me out. We always want to make the best decision for our bp kids and sometimes the picture isn't entirely clear, is it? I just pray for clear leading. And the younger two are in limbo two because we may just try to put all three in the same (new) place.
Oh, and we just found out that Caroline's fantastic therapist is moving to Oregon! My answer to that was "Crap!" You know how important it is to find someone who is the right fit and we have been blessed for the last eight years with two wonderful counselors. Now the search begins. If it is not one thing....
14 comments:
I am looking forward to the link to your doctors
's book. Caroline has been on a lot of different med than Beth.
I keep thinking that she could be a lot better if more properly medicated.
I too am looking forward to the book, but if the theory is because the child actually has bipolar disorder and that's why the ADHD meds don't work, then I'm still not sure what to do about my son because he has both, but can't take ADD meds because they cause major tics.
Mary in TX
Hi! Spent the last 40 minutes catching up with you and yours! The school issue breaks my heart. Our kids are wise beyond their years in so many ways yet behind as well. The whole stabilization and recovery process is so tough during the adolescent years. Hang in there. I want to develop an accommodation plan for Caroline with her school!!
Hi Mary. We are in the same boat as far as our dd being unable to take ADD meds because of negative side effects. Any stimulant made her manic or angry. We would try Intuniv, but the Amantadine seems to act as a focusing drug for her. As soon as they put her on it, she became much more able to complete tasks, assignments, focus in class, etc. So we are sticking with the Amantadine for now.
I don't think that the book is focused on bp kids and their med issues, as much as ADD problems in general. We shall see!
Anna, I agree that your dd would probably not be seeking to self-medicate if she were on the right meds. The battle is convincing them of that, isn't it?
Anna, I agree that your dd would probably not be seeking to self-medicate if she were on the right meds. The battle is convincing them of that, isn't it?
Anna, I agree that your dd would probably not be seeking to self-medicate if she were on the right meds. The battle is convincing them of that, isn't it?
Actually my BP dd takes Concerta with no problems.
It's her BP brother (who takes Amantadine in addition to his many other meds) who can't take ADD meds because it causes tics (mostly facial, but some gross motor) as well as the inability to sit still. His reaction to Vyvanse was the most dramatic anyone at the RTC had ever seen.
Mary n TX
Hi there. My name is Deidre and I can't tell what a blessing your blog is for me. I have an 8 yr old, 5 yr old, and a 3 1/2 year old. My 3 1/2 year old has always been my sweet, gentle, smiley child. But red flags started showing up around 15 to 18 mos. As soon as she was mobile she was in to EVERYTHING. Not like a normal little explorer because it was constant and she ate non food items like they chocolate candy. She was diagnosed with PICA at age 2. However, 6 mos later when she should have grown out of it (labs normal) i voiced my concern to the pediatrician again-something is not right. She went to be tested for sensory integration disorder (also constantly covering herself in the things she ate, high pain tolerance, etc.). She was diagnosed with sensory issues-hyposensitivity, proprioceptive, and vestibular. She began O.T. sessions and I was doing tons of this at home. Things improved a little except new issues arrived: fears, aggression, crazy temper tantrums, etc. I couldn't understand. Anyway, I had her tested by a psychologist and everything came back congnitively fine. She diagnosed her with ADHD (I respectfully disagreed). It just didn't match up or feel right. Then I took all my notes, reports, etc. to my pediatrician and had a one on one consult. I already had my suspicions of bipolar and the peditrician arrived to the same thing within minutes of the meeting. Here's my problem: she is 3 1/2. No one wants to see her, she's too young. I want them to come live in my house for one day and tell me that my family can survive this until she's 6 and they will see her. I am at my wits end wanting to help my sweet girl. Do you have any advice on suggestions for doctors as well suggestions for how to handle this at home. I love my girl so much and it tears me up to see her this way. And it seems to keep getting worse. Sorry for such a long post...I am desperate!!
Sincerely,
Deidre
email address: deeder_g@yahoo.com
Mary, that is so interesting that your son cannot take stimulants but your dd can. Each child's chemistry is so different, isn't it? I wish there was one formula for bp disorder, but as you know, it takes SO MUCH trial and error to find the right mix.
Deidre, we all feel your pain. Your daughter's progression sounds so similar to mine, even the eating of weird things. Mine ate plastic. She too was totally out of control at 3 or 4, I would be amazed at how helpless I felt so much of the time. I would call my husband home from work when she was having tantrums because i was so scared and powerless over her it seemed. There are psych docs that will be willing to listen to you and put her on the most basic mood stabilizer, like Trileptal. Finding one is the challenge. Have you gone to the Child and Adolescent Bipolar Foundation website? There are some resources there to find a doc. But honestly, looking back at our experience, I would be willing to travel far to get the right treatment started. Even making an appointment with Dr. Papolos himself (he wrote The Bipolar Child) and flying or driving there. What state do you live in? Meridell does outpatient evals of very young patients and med recommendations. I understand your desperation. Don't give up. I will keep up with you!! I know the loneliness this disorder brings on, the feelings of being alone in this fight, and no one really understanding how awful your home life can be. It can get better, with the right meds, the right therapy, and time.
Megan - my children are 1/2 sibs so their chemisty is of course a little different, but my mother and I are both bipolar and the meds we take are as different from each other as the children's are from us.
My son is upset about trying different meds until they find the right med cocktail. He says it makes him feel like a guinea pig. Poor baby.
Mary in TX
Dee, your 3 1/2 year old sounds a lot like my daughter did. I took her at age 3 to a children's hospital for a 3 day work up and came back with ADHD, but "we don't treat at this age." Uhg!!! Finally got her on meds at 1st grade. Then the BP showed up full blown in 8th grade. (She had signs of it since about 2-3years of age.)It's been a struggle, to say the least. I'm so glad I found Megan's blog! My 15 year old has had 1 hospitalization so far (she's needed more, but I haven't been able to afford it) and she's on the 3rd psychiatrist. Still haven't found a therapist my dd trusts. I had to call the police on her once, which was so humiliating. Some days it is so depressing to think of the future. I have to remind myself to take it one day, sometimes 1 minute at a time. I know what desperate is! My dd's severe tantrums would absolutely wear me out and drive me to tears and hopelessness. On another note, Adderoll quick release caused my dd to have facial tics, but the extended release doesn't so much. My advice is to keep looking for a doctor to treat your child. Get references, if available. Try to be patient and loving with your child.
Thanks, Camille, for your encouragement to all and for your advice. It is so frustrating to hear of parents trying to get docs to listen, and being rebuffed, or not being able to find the right therapist. We are embarkin g on finding a new therapist and I am not looking forward to the process, having been so incredibly blessed in the past with exactly the people Caroline needed.
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