shutterbunny
New Member
I'm basically very new here. I found the forum via a google search about abilify and toddlers. I ended up joining and posting in the topic that the google search turned up, but I have seen so much good advice on this board that I thought I'd throw my hat in and see if you might share some of that with me.
Little bit of background. My son (only child) is now 4 years old. My son was a preemie and did say in the NICCU for 4 weeks, but after overcomming some apnea of prematurity issues, and having a long battle with severe reflux, he seemed physically fine. (The reflux was severe enough to cause esophogitis and he had internal bleeding due to this as well as several ear infections caused by reflux and a few bouts with pnuemonia due to aspirated stomach acid. He was under the care of a pediatrician. gastro until the age of 3 but has been in good control of it since the age of 19 months) At six weeks old, my son was unable to soothe himself or be soothed. He would scream for hours on end and he slept a total of 6-7 hours in a 24 hour period at the age of 6 weeks...certainly not nearly enough. We do feel that a good part of his screaming was due to his pain from the extreme reflux, but after several months of it being controlled, he was still unhappy for much of the day. by the age of 5 months, we were unwilling to blame all of the issues of discontent and lack of sleep on reflux, so we saw a neurologist.
Developmentally, my son was way ahead of schedule and when his age was corrected for his premature status, he was amazingly ahead of schedule. He was using three words appropriately by the age of 5 months of age (adjusted for his preemie status, 3.5 months) and other things of this nature. By 12 months, he had less vocabulary (or at least used less vocabulary) than he did at 9 months. He was, however, very social and responded appropriately to hearing his name called, engaging in appropriate play, etc. But he was still extremely volatile. His eeg's has turned up a "rare abnormality" in his left temporal lobe. They explained the term "rare" as meaning of the thousands of electrical impulses recorded during the eeg, they saw some abnormal spikes less than 1/10th of 1 percent of the time. However, being in that region of the brain and his issue with rage and impulsivity, it was something we wanted to continue to keep an eye on.
He was involved in early intervention programs and then cpse programs (still is with cpse) which involved/involve behaviorists, family trainers, Occupational Therapist (OT) (for sensory issues), and an integrated classroom setting for preschool. He is a very intelligent little boy who "snaps" at the drop of a hat with no real provocation or antecedent and certainly out of proportion to whatever people thought might have set him off. We used to say that he "went away" when this would happen because he was completely unreachable and unresponsive when he'd have these fits of rage. They could last anywhere from 15 minutes to 2 hours and they could consist of "simple" screaming and crying to screaming added to physical or verbal aggression. We have gone through doctor and specialist after doctor and specialist and everyone says the same thing..."we believe you, but he's so well behaved when we see him." I would bring in video of him raging and they'd say, "no that's not normal, but we just don't know."
He has been on 350mg of depakote bid (starting at 125mg Sensory Integration Disorder (SID) and slowly increasing between last April and last December) with a theraputic level being reached but no positive change in rage control. Finally, three weeks ago, we found a neuropsychologist who started him on Abilify 2mg Sensory Integration Disorder (SID). Obviously, this dose is subject to change but the neuropsychologist asked us to give it 3 weeks before we ask about any changes in either dose or type of medication. He is still on the depakote along with the abilify.
We have seen what we think is improvement due to the abilify. We've had an entire week with only one severe outburst and a few very managable (perhaps age typical) little outburst. We're holding our breaths...when do we relax, when do we say this is as good as it can get, at what point do we feel like we've got a grip (3 weeks, 3 months, 3 years)? How do you guys deal with going for several good days and then having a monster day? We've walked on eggshells for 4 years, so 2 weeks seems like an eternity to us but also seems like something we can't start relaxing about at the same time. The neuropsychologist said at this point he is diagnosis'ing him as unspecified mood disorder but we think he's leaning toward early onset bipolar. I'd like to know how some of you are dealing with these issues.
Finally, I'd like to know if any of you have had success in getting insurance to lower the tier cost of the medications you might use. Between the depakote and abilify we are looking at $100 a month in medications for our son as well as $400 for neuropsychologist visits that insurance doesn't really cover (even though they have none listed in the plan.).
Any help would be truly appreciated. Thanks for reading my long post.
Little bit of background. My son (only child) is now 4 years old. My son was a preemie and did say in the NICCU for 4 weeks, but after overcomming some apnea of prematurity issues, and having a long battle with severe reflux, he seemed physically fine. (The reflux was severe enough to cause esophogitis and he had internal bleeding due to this as well as several ear infections caused by reflux and a few bouts with pnuemonia due to aspirated stomach acid. He was under the care of a pediatrician. gastro until the age of 3 but has been in good control of it since the age of 19 months) At six weeks old, my son was unable to soothe himself or be soothed. He would scream for hours on end and he slept a total of 6-7 hours in a 24 hour period at the age of 6 weeks...certainly not nearly enough. We do feel that a good part of his screaming was due to his pain from the extreme reflux, but after several months of it being controlled, he was still unhappy for much of the day. by the age of 5 months, we were unwilling to blame all of the issues of discontent and lack of sleep on reflux, so we saw a neurologist.
Developmentally, my son was way ahead of schedule and when his age was corrected for his premature status, he was amazingly ahead of schedule. He was using three words appropriately by the age of 5 months of age (adjusted for his preemie status, 3.5 months) and other things of this nature. By 12 months, he had less vocabulary (or at least used less vocabulary) than he did at 9 months. He was, however, very social and responded appropriately to hearing his name called, engaging in appropriate play, etc. But he was still extremely volatile. His eeg's has turned up a "rare abnormality" in his left temporal lobe. They explained the term "rare" as meaning of the thousands of electrical impulses recorded during the eeg, they saw some abnormal spikes less than 1/10th of 1 percent of the time. However, being in that region of the brain and his issue with rage and impulsivity, it was something we wanted to continue to keep an eye on.
He was involved in early intervention programs and then cpse programs (still is with cpse) which involved/involve behaviorists, family trainers, Occupational Therapist (OT) (for sensory issues), and an integrated classroom setting for preschool. He is a very intelligent little boy who "snaps" at the drop of a hat with no real provocation or antecedent and certainly out of proportion to whatever people thought might have set him off. We used to say that he "went away" when this would happen because he was completely unreachable and unresponsive when he'd have these fits of rage. They could last anywhere from 15 minutes to 2 hours and they could consist of "simple" screaming and crying to screaming added to physical or verbal aggression. We have gone through doctor and specialist after doctor and specialist and everyone says the same thing..."we believe you, but he's so well behaved when we see him." I would bring in video of him raging and they'd say, "no that's not normal, but we just don't know."
He has been on 350mg of depakote bid (starting at 125mg Sensory Integration Disorder (SID) and slowly increasing between last April and last December) with a theraputic level being reached but no positive change in rage control. Finally, three weeks ago, we found a neuropsychologist who started him on Abilify 2mg Sensory Integration Disorder (SID). Obviously, this dose is subject to change but the neuropsychologist asked us to give it 3 weeks before we ask about any changes in either dose or type of medication. He is still on the depakote along with the abilify.
We have seen what we think is improvement due to the abilify. We've had an entire week with only one severe outburst and a few very managable (perhaps age typical) little outburst. We're holding our breaths...when do we relax, when do we say this is as good as it can get, at what point do we feel like we've got a grip (3 weeks, 3 months, 3 years)? How do you guys deal with going for several good days and then having a monster day? We've walked on eggshells for 4 years, so 2 weeks seems like an eternity to us but also seems like something we can't start relaxing about at the same time. The neuropsychologist said at this point he is diagnosis'ing him as unspecified mood disorder but we think he's leaning toward early onset bipolar. I'd like to know how some of you are dealing with these issues.
Finally, I'd like to know if any of you have had success in getting insurance to lower the tier cost of the medications you might use. Between the depakote and abilify we are looking at $100 a month in medications for our son as well as $400 for neuropsychologist visits that insurance doesn't really cover (even though they have none listed in the plan.).
Any help would be truly appreciated. Thanks for reading my long post.
