Marguerite
Active Member
I posted in yesterday's Good Morning thread about the multiple difficult child problems we've got at the moment. It's been a rough ride.
I haven't posted much for a long time, about our problems. So if you can, please forgive the length of this. I've streamlined this as much as possible.
All three kids take a sustained release formulation of dex. It actually has helped lower the overall dose. They were under the care of a pediatrician until age 25 when the law says they have to be referred to an adult psychiatrist. difficult child 3 still is under the pediatrician. The medications are administered through state Dept of Health. Very strict rules.
In order - difficult child 1 ran out of medications some months ago. He was referred to a local shrink when he turned 25. I went to the first appointment and was a bit dismayed - a one person practice where the doctor has no receptionist, no other staff. The waiting room is monitored by CCTV. The phones are permanently on answering machine. The doctor didn't want to talk to me or to daughter in law which meant he had to get history from difficult child 1 who is not very communicative. The doctor wrote prescriptions for difficult child 1, though, so he seemed worthwhile. Until difficult child 1 tried to call the doctor back to get another appointment for the next prescriptions. "Leave a message". Only the doctor is not good at returning messages and difficult child 1 is not good at making phone calls. After struggling for three years difficult child 1 and daughter in law felt it was time to move on. They like the shrink but don't like his unavailability.
easy child 2/difficult child 2 - aged out of the pediatrician late last year. She actually missed her last appointment due to work commitments which meant she never got her last prescription written (it would have been six months' supply). It shouldn't have been a problem, except easy child 2/difficult child 2 lost the referral to the shrink and did not organise the handover. So she was running low on medications also, so I organised the fastest appointments I could get for both these two. I got the same practice but two different shrinks. The practice has a policy of not seeing siblings with the same shrink. We felt that would be okay, because at least they have staff and someone to answer the phones.
The appointments were early February. difficult child 1 went alone because I had my two year post-cancer check-up at the same time. His doctor wrote a prescription right away. But we found out that the prescription was written incorrectly. difficult child 1 let the doctor know. doctor said, "I'll fix it and get the replacement script out to you." After 6 weeks, still no script. I rang and got heavy. No result. daughter in law rang me and said she was worried about difficult child 1's irritability off medications, so I used that as the excuse to take difficult child 1 to an emergency mental health clinic. THEY rang the shrink and yelled at him (or the secretary, anyway). Next day difficult child 1 was called by the doctor, "Come get your replacement script."
difficult child 1 posted the script off to the special pharmacy. Turned out, the script was still missing a vital piece of data. The pharmacy faxed clarification to the shrink on a daily basis for two weeks. Yesterday I rand Dept of Health as well as the doctor's rooms. I got heavy. This morning, the script had been faxed to the pharmacy. All correct. I was in the area so I collected it then delivered it to difficult child 1 on my way home. Phew! His first medications for months.
Now to easy child 2/difficult child 2. She saw her new shrink in early February (a few days after difficult child 1's appointment). I sat in at easy child 2/difficult child 2's request. Unmedicated, easy child 2/difficult child 2 gets off topic easily and seems scatty. She was in a bubble mood when we entered because we'd been talking about a favourite book. As she talked, easy child 2/difficult child 2 at times got teary (she does when she talks about her stressors). The shrink very quickly said, "There is no way you have Asperger's. I think you have bipolar."
We were there an hour, it cost $450 for the initial consult. A bit steep, we only get half of it back at that rate. Usually docs give a discount to low income card holders but they didn't this time. The doctor said to come back in a week, but it took another three weeks before we could get an appointment. Then the doctor cancelled at the last minute, so that was another week. The shrink had also asked easy child 2/difficult child 2 to organise a neuropsychologist appointment, but when she rang the clinic numbers most of them were not taking new referrals. So it was either go private (ridiculously expensive) or wait for ten months or more (too long).
Next appointment - the shrink asked if the neuropsychologist had happened. No, not possible. She put pressure on. I said we couldn't afford the private option, which meant we had to wait. doctor said to telephone again and nag. So afterwards, I did. I then began to telephone every other possible public neuropsychologist I could find out about. No dice.
Third appointment with shrink - yes, still assessing. Costing $350 each time. Still steep for follow-up. Now it's weekly. husband & I now paying the bills. Nothing much happened at this appointment other than more assessment. The doctor appeared to be ticking boxes on some complex report forms.
Fourth appointment with shrink - bipolar no longer being mentioned. "I strongly urge you to get that neuropsychologist assessment done, with a view to considering Asperger's." Okay, a total turnaround from the first appointment. When we asked (more pointedly this time) about whether the doctor could write easy child 2/difficult child 2 a new prescription (which was after all the main reason we'd seen the doctor) she refused. "Not until after the neuropsychologist has been done."
In vain did I point out that:
1) easy child 2/difficult child 2 is not functioning at work or academically without medications. She only had enough left for six days, and was therefore only taking medications one day a week, on the day of her longest work shift. The doctor's response - "try to ration your medications." Already doing that, doctor. Didn't you hear?
2) easy child 2/difficult child 2 was already booked in for a neuropsychologist assessment. We'd been told we wouldn't even get put on the waiting list until July.
The doctor still insisted she would not prescribe without the assessment. I said, "She's been on these medications for 15 years with no adverse reactions. You accept she needs a stimulant. Why not prescribe on an interim basis, pending the neuropsychologist assessment?" Nope. But she could of course organise a faster assessment, if we went private (about $2000 ++). Of course, in the same practice. Who can say, "self-serving cross-promotion"?
The doctor offered to prescribe Strattera instead. We pointed out that difficult child 3 had taken it and had gone psychotic in three days. Adverse reaction. easy child 2/difficult child 2 didn't want to risk it, when there is a safe medication she's been taking already.
By this stage with easy child 2/difficult child 2, we'd spent $1400 over 2 months, which would have been tolerable if the main purpose (ongoing prescription) had happened. The shrink insisted Dept of Health laws would not allow her to prescribe without the neuropsychologist.
So I rang Dept of Health Pharmaceuticals division. They were flabbergasted and sent me a copy of the laws. The shrink was actually empowered to prescribe the same medications in this situation. So I rang the shrink back to tell her this, and she then said, "Actually, it's my higher medical ethics that won't let me prescribe. But as I said before, I can prescribe Strattera in the interim."
I explained about difficult child 3's adverse reaction to Strattera. The shrink pricked up her ears and said, "What dose was he on?"
I said, "I don't know, I'd have to check the box."
doctor said, "Give easy child 2/difficult child 2 her brother's leftover medications."
"What dosage?"
"Half whatever her brother was taking," the doctor said.
So - 'higher medical ethics', eh? And she was advising easy child 2/difficult child 2 to take her brother's leftover medications which had actually caused him problems. Dosage unknown. The shrink also said, "She only needs to take the Strattera on the days she's working or studying, she can stay off it on the other days."
I said, "Strattera is supposed to be taken every day, doses must not be missed."
The doctor said, "I don't think so. You an just take it as needed."
Later I checked the supplier info - Strattera MUST be taken consistently, every day. No skipping doses.
By this stage, easy child 2/difficult child 2 decided this doctor was a total loss. She felt that the shrink did not have the patient's best interests at heart.
I organised for easy child 2/difficult child 2 to see another specialist - my neurologist. There is a loophole in the laws that allows for a neurologist to prescribe in special circumstances. We've had one appointment with the neuro so far.
Now for the totally bizarre - the neuropsychologist clinic phoned. They had a vacancy. easy child 2/difficult child 2 grabbed it. First appointment was today. It's not free, but total cost is $100. I know the uni campus where the clinic is, so I drove easy child 2/difficult child 2 there and sat in on the first hour, to help with background. Then during phase 1 of the testing, I headed off to collect difficult child 1's medications (as I mentioned above).
We see the neurologist again on Monday, for EEG. easy child 2/difficult child 2 has already had a head CT which was clear. I'm going to have to really pressure re medications on Monday, because without them, easy child 2/difficult child 2 is not getting any uni work done and is talking about dropping out. So I rang the uni counselling service and have a phone appointment organised for her for Wednesday. We've got to get this sorted!
Now to difficult child 3. He's just not getting on with his schoolwork. I don't know if he's even getting his college work done, but it does seem that he's doing better there. The school SpEd has really worked hard with difficult child 3 so far this year with results still not satisfactory. He's p/t school, p/t college. College is face to face, school is correspondence.
We've just started Term 2 this week, of a 4 term year. The SpEd looked up difficult child 3's records and said, "This is still not good enough. it's time for us to meet and discuss where to go from here."
I think we're going to be advised that difficult child 3 needs to drop out of school. I've asked the college SpEds to get info on his progress there. Depending on their report, we'll make our decision. it has to be difficult child 3's decision, but school SpEd will lead him to it next Thursday.
Next Friday easy child 2/difficult child 2 has her second part of the neuropsychologist assessment. The neuropsychologist wants her to get herself to the campus and not rely on me. Hmm... I'm not sure I'm comfortable with that. Besides, if we are successful in getting easy child 2/difficult child 2's prescription from the neurologist on Monday, I could be using Friday to collect the medications.
I had a long talk to difficult child 1 and easy child 2/difficult child 2 this afternoon (when we dropped off difficult child 1's medications). I'd made appointments with the pair of them with a yet another shrink, we can now cancel difficult child 1's appointment. He's decided to not go back to the new (now old) shrink who kept getting his script wrong and then did not respond to the repeated urgent messages to fix it. Health Dept gave advice, said to get referral to a GP after six months with specialist (another loophole in the laws). easy child 2/difficult child 2 still has her appointment, but once we get a prescription from my neuro, I'll cancel her appointment. Keeping it would mean it would be the third specialist so far this year and each one is expensive to reinvent the wheel with.
Many years ago, Aussie Prime Minister Malcolm Fraser said, "Life wasn't meant to be easy."
But it wasn't meant to be this flamin' hard!
Marg
I haven't posted much for a long time, about our problems. So if you can, please forgive the length of this. I've streamlined this as much as possible.
All three kids take a sustained release formulation of dex. It actually has helped lower the overall dose. They were under the care of a pediatrician until age 25 when the law says they have to be referred to an adult psychiatrist. difficult child 3 still is under the pediatrician. The medications are administered through state Dept of Health. Very strict rules.
In order - difficult child 1 ran out of medications some months ago. He was referred to a local shrink when he turned 25. I went to the first appointment and was a bit dismayed - a one person practice where the doctor has no receptionist, no other staff. The waiting room is monitored by CCTV. The phones are permanently on answering machine. The doctor didn't want to talk to me or to daughter in law which meant he had to get history from difficult child 1 who is not very communicative. The doctor wrote prescriptions for difficult child 1, though, so he seemed worthwhile. Until difficult child 1 tried to call the doctor back to get another appointment for the next prescriptions. "Leave a message". Only the doctor is not good at returning messages and difficult child 1 is not good at making phone calls. After struggling for three years difficult child 1 and daughter in law felt it was time to move on. They like the shrink but don't like his unavailability.
easy child 2/difficult child 2 - aged out of the pediatrician late last year. She actually missed her last appointment due to work commitments which meant she never got her last prescription written (it would have been six months' supply). It shouldn't have been a problem, except easy child 2/difficult child 2 lost the referral to the shrink and did not organise the handover. So she was running low on medications also, so I organised the fastest appointments I could get for both these two. I got the same practice but two different shrinks. The practice has a policy of not seeing siblings with the same shrink. We felt that would be okay, because at least they have staff and someone to answer the phones.
The appointments were early February. difficult child 1 went alone because I had my two year post-cancer check-up at the same time. His doctor wrote a prescription right away. But we found out that the prescription was written incorrectly. difficult child 1 let the doctor know. doctor said, "I'll fix it and get the replacement script out to you." After 6 weeks, still no script. I rang and got heavy. No result. daughter in law rang me and said she was worried about difficult child 1's irritability off medications, so I used that as the excuse to take difficult child 1 to an emergency mental health clinic. THEY rang the shrink and yelled at him (or the secretary, anyway). Next day difficult child 1 was called by the doctor, "Come get your replacement script."
difficult child 1 posted the script off to the special pharmacy. Turned out, the script was still missing a vital piece of data. The pharmacy faxed clarification to the shrink on a daily basis for two weeks. Yesterday I rand Dept of Health as well as the doctor's rooms. I got heavy. This morning, the script had been faxed to the pharmacy. All correct. I was in the area so I collected it then delivered it to difficult child 1 on my way home. Phew! His first medications for months.
Now to easy child 2/difficult child 2. She saw her new shrink in early February (a few days after difficult child 1's appointment). I sat in at easy child 2/difficult child 2's request. Unmedicated, easy child 2/difficult child 2 gets off topic easily and seems scatty. She was in a bubble mood when we entered because we'd been talking about a favourite book. As she talked, easy child 2/difficult child 2 at times got teary (she does when she talks about her stressors). The shrink very quickly said, "There is no way you have Asperger's. I think you have bipolar."
We were there an hour, it cost $450 for the initial consult. A bit steep, we only get half of it back at that rate. Usually docs give a discount to low income card holders but they didn't this time. The doctor said to come back in a week, but it took another three weeks before we could get an appointment. Then the doctor cancelled at the last minute, so that was another week. The shrink had also asked easy child 2/difficult child 2 to organise a neuropsychologist appointment, but when she rang the clinic numbers most of them were not taking new referrals. So it was either go private (ridiculously expensive) or wait for ten months or more (too long).
Next appointment - the shrink asked if the neuropsychologist had happened. No, not possible. She put pressure on. I said we couldn't afford the private option, which meant we had to wait. doctor said to telephone again and nag. So afterwards, I did. I then began to telephone every other possible public neuropsychologist I could find out about. No dice.
Third appointment with shrink - yes, still assessing. Costing $350 each time. Still steep for follow-up. Now it's weekly. husband & I now paying the bills. Nothing much happened at this appointment other than more assessment. The doctor appeared to be ticking boxes on some complex report forms.
Fourth appointment with shrink - bipolar no longer being mentioned. "I strongly urge you to get that neuropsychologist assessment done, with a view to considering Asperger's." Okay, a total turnaround from the first appointment. When we asked (more pointedly this time) about whether the doctor could write easy child 2/difficult child 2 a new prescription (which was after all the main reason we'd seen the doctor) she refused. "Not until after the neuropsychologist has been done."
In vain did I point out that:
1) easy child 2/difficult child 2 is not functioning at work or academically without medications. She only had enough left for six days, and was therefore only taking medications one day a week, on the day of her longest work shift. The doctor's response - "try to ration your medications." Already doing that, doctor. Didn't you hear?
2) easy child 2/difficult child 2 was already booked in for a neuropsychologist assessment. We'd been told we wouldn't even get put on the waiting list until July.
The doctor still insisted she would not prescribe without the assessment. I said, "She's been on these medications for 15 years with no adverse reactions. You accept she needs a stimulant. Why not prescribe on an interim basis, pending the neuropsychologist assessment?" Nope. But she could of course organise a faster assessment, if we went private (about $2000 ++). Of course, in the same practice. Who can say, "self-serving cross-promotion"?
The doctor offered to prescribe Strattera instead. We pointed out that difficult child 3 had taken it and had gone psychotic in three days. Adverse reaction. easy child 2/difficult child 2 didn't want to risk it, when there is a safe medication she's been taking already.
By this stage with easy child 2/difficult child 2, we'd spent $1400 over 2 months, which would have been tolerable if the main purpose (ongoing prescription) had happened. The shrink insisted Dept of Health laws would not allow her to prescribe without the neuropsychologist.
So I rang Dept of Health Pharmaceuticals division. They were flabbergasted and sent me a copy of the laws. The shrink was actually empowered to prescribe the same medications in this situation. So I rang the shrink back to tell her this, and she then said, "Actually, it's my higher medical ethics that won't let me prescribe. But as I said before, I can prescribe Strattera in the interim."
I explained about difficult child 3's adverse reaction to Strattera. The shrink pricked up her ears and said, "What dose was he on?"
I said, "I don't know, I'd have to check the box."
doctor said, "Give easy child 2/difficult child 2 her brother's leftover medications."
"What dosage?"
"Half whatever her brother was taking," the doctor said.
So - 'higher medical ethics', eh? And she was advising easy child 2/difficult child 2 to take her brother's leftover medications which had actually caused him problems. Dosage unknown. The shrink also said, "She only needs to take the Strattera on the days she's working or studying, she can stay off it on the other days."
I said, "Strattera is supposed to be taken every day, doses must not be missed."
The doctor said, "I don't think so. You an just take it as needed."
Later I checked the supplier info - Strattera MUST be taken consistently, every day. No skipping doses.
By this stage, easy child 2/difficult child 2 decided this doctor was a total loss. She felt that the shrink did not have the patient's best interests at heart.
I organised for easy child 2/difficult child 2 to see another specialist - my neurologist. There is a loophole in the laws that allows for a neurologist to prescribe in special circumstances. We've had one appointment with the neuro so far.
Now for the totally bizarre - the neuropsychologist clinic phoned. They had a vacancy. easy child 2/difficult child 2 grabbed it. First appointment was today. It's not free, but total cost is $100. I know the uni campus where the clinic is, so I drove easy child 2/difficult child 2 there and sat in on the first hour, to help with background. Then during phase 1 of the testing, I headed off to collect difficult child 1's medications (as I mentioned above).
We see the neurologist again on Monday, for EEG. easy child 2/difficult child 2 has already had a head CT which was clear. I'm going to have to really pressure re medications on Monday, because without them, easy child 2/difficult child 2 is not getting any uni work done and is talking about dropping out. So I rang the uni counselling service and have a phone appointment organised for her for Wednesday. We've got to get this sorted!
Now to difficult child 3. He's just not getting on with his schoolwork. I don't know if he's even getting his college work done, but it does seem that he's doing better there. The school SpEd has really worked hard with difficult child 3 so far this year with results still not satisfactory. He's p/t school, p/t college. College is face to face, school is correspondence.
We've just started Term 2 this week, of a 4 term year. The SpEd looked up difficult child 3's records and said, "This is still not good enough. it's time for us to meet and discuss where to go from here."
I think we're going to be advised that difficult child 3 needs to drop out of school. I've asked the college SpEds to get info on his progress there. Depending on their report, we'll make our decision. it has to be difficult child 3's decision, but school SpEd will lead him to it next Thursday.
Next Friday easy child 2/difficult child 2 has her second part of the neuropsychologist assessment. The neuropsychologist wants her to get herself to the campus and not rely on me. Hmm... I'm not sure I'm comfortable with that. Besides, if we are successful in getting easy child 2/difficult child 2's prescription from the neurologist on Monday, I could be using Friday to collect the medications.
I had a long talk to difficult child 1 and easy child 2/difficult child 2 this afternoon (when we dropped off difficult child 1's medications). I'd made appointments with the pair of them with a yet another shrink, we can now cancel difficult child 1's appointment. He's decided to not go back to the new (now old) shrink who kept getting his script wrong and then did not respond to the repeated urgent messages to fix it. Health Dept gave advice, said to get referral to a GP after six months with specialist (another loophole in the laws). easy child 2/difficult child 2 still has her appointment, but once we get a prescription from my neuro, I'll cancel her appointment. Keeping it would mean it would be the third specialist so far this year and each one is expensive to reinvent the wheel with.
Many years ago, Aussie Prime Minister Malcolm Fraser said, "Life wasn't meant to be easy."
But it wasn't meant to be this flamin' hard!
Marg
award for going to bat for your babiesw.
