I guess it was in April of 2015 that we managed to get away from the doctor at the Autism clinic at the local university, to switch to a private doctor. It doesn't seem like it's been three years, but it's been a blessing in some ways.
The doctor is actually a former student of Jack's current middle school- she started the year the school was first opened, and she actually had the same History teacher that Jack currently does. (On a side-note, wow is this teacher great! He's Jack's favorite this school year, and I think it may have something to do with the fact that the teacher's wife is an Intervention Specialist. He gets these kids, or certainly has some tricks up his sleeve that other teachers do not have). Anyway, we initially saw her once a month, I believe. Things were not going well with medications, and I felt like I was getting desperate. As well, my son was not in a good place. You hate to see your kids unable to function well with their peers, or in their classrooms, because they can't control their emotions. I don't expect my child to be perfect- there is no cure for Autism, even if ADHD might be something he'll grow out of. I just want him to be able to get through a school day without getting so upset by every little thing, that he shuts down. This isn't the life I wanted for him, and I know it makes him harder to approach by his peers and the staff at school.
So when we first got into the office, I went in with a copy of his IEP, his multi-factored evaluation (ETR), his last doctor's report from the specialist (his blood work, etc), and then my brief summary of all of the major issues happening at school. I also brought in a list of health issues I would like her to look in to, if at all possible- PANDA/PANS, for example. (Which I would have never heard of, were it not for some other parents who have children with this diagnosis). I'm not sure we really ever cleared that from our list of possibilities, but anyway. We did, after a few visits, do the Genesight testing. This was super helpful for us, and IMO, worth it. (We may have had to pay $300, but your insurance may cover some of that). We received information on the MTHFR gene mutation, which my son has. Apparently his body does not process folic acid. But the test can also tell you how your body processes different types of medications, and if you're likely to suffer side effects from different groups of medications. Had I known about this test years before, so much less time and money would have been wasted going through the stupid hamster wheel of doctors and medications that sucked, and general made our lives worse. Thinking about all of the times when teachers asked me if it was time to change his meds, or having to carry my son out of the building because he was "wild"- it makes me want to cry just thinking about how bad it got.
As part of seeing this pediatric psychiatrist (and damn, are they hard to come by! Even more difficult to pay for, unless you're very lucky to have the same insurance they carry), Jack has to see a counselor. We see the Dr. every 2-3 months, depending. At $50 co-pay a pop, it's good we don't see her more frequently. In between, he sees a counselor at a center for children and young adults with disabilities. (It's a school, summer camp, counseling facility, and more). Because my son is on a Level 1 waiver, he is on Medicaid. This is fortunate, because it means that his medications are being paid for, as well as his counseling. (Whatever our private insurance doesn't cover, the Medicaid pays for). Things got REALLY bad, and that's the only reason why my son was bumped up the waiver list. It does require using the waiver to pay for certain services that my son doesn't necessarily want, but that's just the sacrifice he has to make. We may not have the benefit of this next year, if things continue to go so well.
Anyway, Jack was doing counseling every other week, when things got pretty bad. Imagine, the first day of middle school, as I was waiting to meet his counselor for the first time, I was called because of behaviors. I literally left the counseling place, only to be told that the school would try to handle it. Ugh. Nightmare. They have gotten better, though. Although the principal has put the phone calls home on the VP, who I don't particularly like- and neither does Jack. But we're now down to seeing the counselor once a month. Ultimately, we'd like to not have to do it anymore- or certainly Jack wouldn't be sad to quit. But 'til that point, we're toughing it out. I really do like Jack having someone he can talk to about stuff that he would rather not share with me. She's young, but I've found her to be very understanding, and very helpful. Jack does not like talking about his problems, and does often shut down in her office. But he's also a 14 yr old boy. Do you know any of those who like talking about "feeling"? Hell, my husband doesn't like talking about his, and he's in his mid-40's!
As for meds, we are pretty much on the same meds he started taking after we switched doctors: Prozac and Risperidone. We've stayed on the same (lowest) dose for the first, and have only fluctuated the second medication after it seemed like .5mg wasn't working as well. We bumped up to 1mg, (with the addition of a .5mg "instant" version, to help calm him if super frustrated, though we never use it), and then went back down during the summer months. It didn't seem to affect him at all- in other words, I did not notice any negative changes in him over the summer. He started back on 1mg a week before school started, to acclimate to that dose, and he's really had no problems this year. Of course he's 14 1/2, perhaps more mature, etc. It just be that right now, for however long, things- his meds, etc- are "just right". I don't pretend for a moment that things will stay this way. I hope they don't decline, but I can't afford to get my hopes up.
The doctor is actually a former student of Jack's current middle school- she started the year the school was first opened, and she actually had the same History teacher that Jack currently does. (On a side-note, wow is this teacher great! He's Jack's favorite this school year, and I think it may have something to do with the fact that the teacher's wife is an Intervention Specialist. He gets these kids, or certainly has some tricks up his sleeve that other teachers do not have). Anyway, we initially saw her once a month, I believe. Things were not going well with medications, and I felt like I was getting desperate. As well, my son was not in a good place. You hate to see your kids unable to function well with their peers, or in their classrooms, because they can't control their emotions. I don't expect my child to be perfect- there is no cure for Autism, even if ADHD might be something he'll grow out of. I just want him to be able to get through a school day without getting so upset by every little thing, that he shuts down. This isn't the life I wanted for him, and I know it makes him harder to approach by his peers and the staff at school.
So when we first got into the office, I went in with a copy of his IEP, his multi-factored evaluation (ETR), his last doctor's report from the specialist (his blood work, etc), and then my brief summary of all of the major issues happening at school. I also brought in a list of health issues I would like her to look in to, if at all possible- PANDA/PANS, for example. (Which I would have never heard of, were it not for some other parents who have children with this diagnosis). I'm not sure we really ever cleared that from our list of possibilities, but anyway. We did, after a few visits, do the Genesight testing. This was super helpful for us, and IMO, worth it. (We may have had to pay $300, but your insurance may cover some of that). We received information on the MTHFR gene mutation, which my son has. Apparently his body does not process folic acid. But the test can also tell you how your body processes different types of medications, and if you're likely to suffer side effects from different groups of medications. Had I known about this test years before, so much less time and money would have been wasted going through the stupid hamster wheel of doctors and medications that sucked, and general made our lives worse. Thinking about all of the times when teachers asked me if it was time to change his meds, or having to carry my son out of the building because he was "wild"- it makes me want to cry just thinking about how bad it got.
As part of seeing this pediatric psychiatrist (and damn, are they hard to come by! Even more difficult to pay for, unless you're very lucky to have the same insurance they carry), Jack has to see a counselor. We see the Dr. every 2-3 months, depending. At $50 co-pay a pop, it's good we don't see her more frequently. In between, he sees a counselor at a center for children and young adults with disabilities. (It's a school, summer camp, counseling facility, and more). Because my son is on a Level 1 waiver, he is on Medicaid. This is fortunate, because it means that his medications are being paid for, as well as his counseling. (Whatever our private insurance doesn't cover, the Medicaid pays for). Things got REALLY bad, and that's the only reason why my son was bumped up the waiver list. It does require using the waiver to pay for certain services that my son doesn't necessarily want, but that's just the sacrifice he has to make. We may not have the benefit of this next year, if things continue to go so well.
Anyway, Jack was doing counseling every other week, when things got pretty bad. Imagine, the first day of middle school, as I was waiting to meet his counselor for the first time, I was called because of behaviors. I literally left the counseling place, only to be told that the school would try to handle it. Ugh. Nightmare. They have gotten better, though. Although the principal has put the phone calls home on the VP, who I don't particularly like- and neither does Jack. But we're now down to seeing the counselor once a month. Ultimately, we'd like to not have to do it anymore- or certainly Jack wouldn't be sad to quit. But 'til that point, we're toughing it out. I really do like Jack having someone he can talk to about stuff that he would rather not share with me. She's young, but I've found her to be very understanding, and very helpful. Jack does not like talking about his problems, and does often shut down in her office. But he's also a 14 yr old boy. Do you know any of those who like talking about "feeling"? Hell, my husband doesn't like talking about his, and he's in his mid-40's!
As for meds, we are pretty much on the same meds he started taking after we switched doctors: Prozac and Risperidone. We've stayed on the same (lowest) dose for the first, and have only fluctuated the second medication after it seemed like .5mg wasn't working as well. We bumped up to 1mg, (with the addition of a .5mg "instant" version, to help calm him if super frustrated, though we never use it), and then went back down during the summer months. It didn't seem to affect him at all- in other words, I did not notice any negative changes in him over the summer. He started back on 1mg a week before school started, to acclimate to that dose, and he's really had no problems this year. Of course he's 14 1/2, perhaps more mature, etc. It just be that right now, for however long, things- his meds, etc- are "just right". I don't pretend for a moment that things will stay this way. I hope they don't decline, but I can't afford to get my hopes up.
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