problems in triplicate (long)

Discussion in 'General Parenting' started by Marguerite, Apr 27, 2012.

  1. Marguerite

    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
     
  2. pasajes4

    pasajes4 Well-Known Member

    Oh My! I thought I had problems getting appointments. You my dear get the :no1mom: award for going to bat for your babiesw.
     
  3. susiestar

    susiestar Roll With It

    I am so sorry. Our laws are not nearly that complicated, though appts can cost that much easily. I am just thankful my pain doctor will charge me only $100 for the appointment and drug test, and then do 3-4 mos of rx's after that with-o another appointment.

    You truly are an awesome mom. Ignore the doctor who wants easy child to go herself. You and easy child know what works. If nothing else say it is cost sharing on the gas bc you both have to be there. So what if doctor doesn't like it? It isn't like you baby easy child 2 - you don't. You just know, and she knows, when she needs help. MOm instincts are ALWAAYS better than doctor instincts, in my opinion.

    As for the doctor who wanted strattera, doctor is a flaming idiot who doesn't want to rx stims and does not CARE about patients. doctor also does not listen, and is money hungry or there would not be all those expensive appts with no rx and a changing diagnosis each time. I refuse to reinvent the wheel and get pretty nitpicky. Esp because the psychiatrists here all want to diagnosis bipolar if you are aspie, aspie if you are bipolar, and never watn to do the mood stabs but want antidepressants only at first. I take the bipolar book with the medication protocol and ask questions they won't answer so they go to the aspie diagnosis because it is 'too hard' to give a bipolar diagnosis. Then they leave it alone because I think I scare them or take too much time. Makes me laugh and laugh and laugh at them! (I am sort of a contrary person and making them annoyed is fun sometimes, esp with their 'i know everything' attitudes until I start asking questions!)
     
  4. busywend

    busywend Well-Known Member Staff Member

    Oh Marg - how frustrating! I am so sorry the docs are giving you all a hard time. Have you turned in the doctor that told her to take brothers medications?? He should no longer be in practice!
     
  5. SearchingForRainbows

    SearchingForRainbows Active Member

    Marg,

    I need to stop and catch my breath after reading about what you've been through! in my humble opinion, there are many things wrong with our health care system but I guess, in some ways, we're fortunate. From personal experience, we don't have to go through the all the red tape, total "garbage," that you do in order to get prescriptions refilled. Yes, we have our share of incompetent doctors, but, I've never heard of one story even remotely similar to the problems you've been facing just to get prescriptions refilled! It infuriates me because if the prescriptions were for physical illnesses, I highly doubt you would have been treated like this!!

    I'm sorry to hear that difficult child 3 is struggling so much... My mind is a bit foggy these days, (too much on my plate but different kinds of issues from yours) but if I remember correctly, difficult child 3 loves computers. Now I know his situation is very different from that of my oldest, difficult child 1, but a very wise therapist once told us when difficult child 1 was struggling in school, that we should encourage his obsession with computers, that this would be his ticket to a successful adult life. difficult child 1 did end up graduating from a junior college but only because we kept reminding him that a diploma, just a piece of paper as we had to repeatedly tell him, was going to be the key to unlocking a world of possibilities... difficult child 1 put everything he had into his computer courses and barely scraped by in some of his other classes. In the long run, this didn't matter. To make a long story short, to this day, difficult child 1 has managed to turn his obsession into a job he loves and is happier then he's ever been. However, as it is with difficult children, you never know what lies ahead... Keeping my fingers crossed he continues to do well...

    I'm getting off topic! Sorry!! Back to difficult child 3. If he loves computers, can he go to some sort of technical school, training program, to get a job working with them even if he doesn't have a diploma? If I'm wrong about the computers, maybe whatever it is that excites him, that he is passionate about, can be his ticket to happiness.

    Just my two cents... Thinking of you and your children, and hoping things look brighter soon... SFR
     
  6. SearchingForRainbows

    SearchingForRainbows Active Member

    I agree!!
     
  7. Bunny

    Bunny Guest

    I'm flabbergasted that the psychiatrist for easy child/difficult child 2 was refusing to prescribe her the medications that she was already on doing perfectly well on until after the neuropsyche appointment, citing "higher medical ethics", but then told her to take her brother's left over medications. How stupid could she be?

    You have so much going. I hope that it gets sorted out quickly.
     
  8. Marguerite

    Marguerite Active Member

    We did discuss whether to turn in the doctor who told me to give easy child 2/difficult child 2 her brother's old medications (dose unknown) but I don't want to go there. She's a very manipulative individual who I suspect would not be above heavy CYA capability. I just don't want to tangle with her. I had talked to the practice manager who heard my story then went into CYA mode. So frankly, if this doctor repeatedly does the wrong thing, the practice deserves all they get.

    Stimulant medications are very strictly controlled here. We've not had problems before though. We get the script written by the pediatrician (for difficult child 3, and earlier for the others) then post the script off to the special compounding pharmacy. The pharmacy have notes on our kids going back to the first script ever sent to them. Dept of Health have the same records - dates of scripts, who wrote them, when they were filled etc. So when I rang Dept of Health to say my kids were out of medications, Dept of Health checked their computer files and said, "Yeah, that makes sense." To their credit, the people at Dept of Health did their best to help us. They could not force a doctor to prescribe, but they could nag a doctor to fix a script that had been badly written. Ironically, the doctor who took so long to fix the script (and must have faxed it overnight) was to get a phone call from Dept of Health this morning.

    As for the shrink refusing to prescribe the medications that had been working, and instead offering to prescribe something likely to be a lot less satisfactory - Dept of Health were annoyed by this too, but unable to do anything. That shrink is very good at talking her way out of problems, if I complain then she will simply rationalise her decision in ways I cannot answer. I am not a doctor; she is. I know she's wrong. Others are pretty sure she's wrong. But while ever she can rationalise it, can justify it, nobody can do anything. She gets the benefit of the doubt. And we really need to move on and not bog down in ancient history, which is what this story will become. Mind you, it's going in the book I'm writing! Never offend a writer...

    Our bills - people on Health Care cards (low income earners and people on disability) are supposed to get cheaper health care. However, it is at the discretion of the doctor. My neurologist doesn't bulk bill, but he charges a lot less than easy child 2/difficult child 2's shrink was charging.

    The neuropsychologist wants to talk to easy child 2/difficult child 2's shrink (the one we're dropping) as well as the neurologist. At least that way we should get some benefit from those appointments. I hope. As long as the shrink doesn't badmouth me as a controlling ratbag parent. Wouldn't put it past her.

    As for difficult child 3 and computers - his college course is in computers. He continued through his school subjects on computers without pause, while he has taken a lot longer with his other subjects. So he's graduated from high school last year in computers, while he still has several years to go in his other schoolwork. So on the strength of his marks in last year's school computer course (which actually overlapped with college) he is now enrolled in the advanced computer networking course. Three mornings a week. But I don't know how he's going. I'm really anxious to find out. However, because difficult child 3 is a legal adult, it is a lot more difficult for me to find out. The college SpEd is on board for me, but is not as available as the school SpEd. I have to wait for college SpEd to talk to all the college teachers and then get back to me. I can't call the teachers myself.

    We're in this mess with difficult child 3 because he wants to have it all - his college computing course, and his high school graduation. But he doesn't seem to realise that he actually has to do the work, too. He will not absorb it by simply sitting next to his closed books. His teachers have done everything they can to help, and he just expects more.

    The difficulty in starting work is something that easy child 2/difficult child 2 and difficult child 1 have both reported also, especially when off their medications. But difficult child 3 is already on a higher dose than is usually prescribed for someone over 18. We tried to cut back but could not manage.

    I'll know more on Monday, I hope.

    Marg
     
  9. DDD

    DDD Well-Known Member

    Just sending a supportive hug your way. I have zero tolerance for professional demonstrating difficult child behavior. None. I admire your tenacity and understand how exhausting it can be. DDD
     
  10. SearchingForRainbows

    SearchingForRainbows Active Member

    Marg,

    I'm sure you've already thought of this but decided to mention it anyway. Is it possible that the medication difficult child 3 is currently taking, is no longer effective for him? Is there any medication he hasn't tried that might help? I know, this sounds absolutely ridiculous after all you just went through...!! It must be so unbelievably frustrating having so much difficulty starting work. It just seems like if this is difficult child 3's major stumbling block, there has got to be a solution...!!

    Keeping my fingers crossed you get more information Monday... SFR
     
  11. Marguerite

    Marguerite Active Member

    Interestingly, at easy child 2/difficult child 2's neurologist appointment, he said that the stimulants lose effectiveness after long usage. I do wonder about difficult child 3, but I'm not sure what else we could do for him. Concerta is less effective plus he gets rebound. So ritalin will not be a good idea to try. Strattera was a disaster; risperdal had minimal benefit for maximum expense. Cipramil switched off his ability to lay down memories. Antidepressants in general seem to cause him problems - allergic to Luvox; spaced out and insomniac on Zoloft; I think there was another antidepressant in there somewhere which also had problems.

    I was hoping that with time and a bit more brain maturity, we might make more progress with difficult child 3. We have made some progress, but not enough.

    All ideas welcome, however.

    Marg
     
  12. helpangel

    helpangel Active Member

    Wow and I thought we had a nightmare of red tape here; my hat goes off to you marguerite :warrior:
    keep fighting warrior mom wish I could send you some more energy but unfortunately don't have any to spare.
     
  13. Star*

    Star* call 911........call 911

    Marg,

    I was glad and surprised to hear that this is the 2nd year anniversary of your surgery and you are free and clear. What a delight that was to hear my dear friend. I was thinking about you the other day. Saw a remarkable video of a spider so large (In Australia) that it was eating a snake. Spider was larger than the mans hand. Remarkable really. Looked like something out of a Harry Potter film. Lovely creature really, although I'm absolutely sure I'm alone in my thoughts on that here. Hope Margs man is well also.

    Just wow on all the here, there and everywhere with the dingbat doctors. I was trying to keep up with who was who and there was so much to keep up with. I nearly got out tabs. The GOOD news in - you know who your kids DO NOT need ever see again. Elimination is not necessariy a bad thing, when it comes to mental health even if it comes with a price tag. The good thing in this case? It was money (Of whcih I have none) the Bad thing would have been for the children to have gone it alone - and been dosed incorrectly or with the wrong medicaitons and had issues with their health, job or mentality. They're very lucky to have you both there to guide them, question ill medical practices, and while I get the CYA routine? I fear there will be more than a blurb about a dumb doctor there somewhere. NEVER peeve a writer indeed. ROFL. And then again - there are so many artists here - you could get one of us to draw her as a wonkey donkey in heels. (I mean wonkey honkey - such as it would be insulting to donkeys)

    Glad to see you around. MIssed you......
    Hugs and Love
    Star
     
  14. Marguerite

    Marguerite Active Member

    Sadly, Star, the wonkey honkey would not be appropriate. It's also not a term than it well known here, I can think of other possibly more locally appropriate, colourful labels.

    The spider you mention sounds like it could be either a mouse spider or a bird-eating spider. Both are huge. husband's uncle served in New Guinea during WWII and told stories of seeing a palm tree with two shadows; then one shadow would get up and walk away. We get mouse spiders here but I've never seen one. They're not rare, just good at staying out of people's way.

    My cancer - yes, two years on and so far I've got the all-clear. Our medical system is set up here to monitor things thoroughly, so we'll have plenty of early warning if there are any further problems. At this afternoon's meeting (writers group) I was talking to two other women who have also been through this. One is only six months into her journey, her skin is still recovering from the radiotherapy.

    Back on topic - I'm agreeing with those of you who feel I should drive easy child 2/difficult child 2 to the next session if I darn well want to. Frankly, even if I spend the two hours sitting in my armchair of a driver's seat listening to my iPod through the car radio, I will be well off because it will give me a much-needed rest. Or I can get some writing done in the car. Or, if easy child 2/difficult child 2 finally gets her prescription from the neurologist, I can drive to the pharmacy and get it filled. If they know ahead of time, they have it ready. We have four of these compounding pharmacies in Sydney that I know about. There are probably a few more. They have one department just for the compounded dex. The staff member in charge has my kids' files next to her computer (thanks to all this) and knows my voice on "sight". Yet we only met for the first time yesterday!

    I'm looking forward to Monday and the prospect of easy child 2/difficult child 2 finally getting her script. Fingers crossed!

    Marg
     
  15. Liahona

    Liahona Guest

    I was also thinking of how lucky your kids are to have you to cut through all the red tape. What a mess!
     
  16. crazymama30

    crazymama30 Active Member

    wow. Talk about having to re create the wheel. Marge, I think I would have lost my cool several times over.
     
  17. Marguerite

    Marguerite Active Member

    I have lost my cool several times over. Not totally, just enough to get extremely vocal, verbally fluent and very, very determined to get action.

    Each time, I rang Dept of Health. I suspect if I ever set foot back in that private hospital clinic I'd be lynched...

    I had a long talk at church this morning with our friend who was diagnosed Aspie at age 60. He's got a possible contact for us, a really good shrink not too far away, only about an hour. Another friend at church was telling us (over lunch) about a course she is doing which seems to combine cognitive behaviour therapy with something else (wish I could remember). It's a course for teachers to then take these skills back into the classroom and teach the kids how to cope with anxiety and depression. I wish I could send the kids, but it's not a therapy group, it's designed to teach others how to administer it.

    Marg
     
  18. Rabbit

    Rabbit Member

    Sending u hugs and I will pray for u and your family. Hugs Rabbit
     
  19. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Marg.....you are wonderful. Sometimes our grown kids need us just to help back them up when these type of things happen. I know when Cory got that metal in his eye on Thanksgiving that he probably didnt absolutely need me completely. He could have taken an ambulance to the hospital and then to Duke but I would never have let him go through all that alone. He is my son and that is what a parent does. You are a great mom.
     
  20. Marguerite

    Marguerite Active Member

    Thanks, Janet. An injury to one of our kids - yeah, I can understand a parent wanting to be there. So why is it so challenging for docs to accept when we want to go to a more routine medical appointment with a family member? The neuropsychologist on Friday - they'd asked me to go along so I could give some history too, to begin with. Then they chucked me out (as they'd warned me - no big deal) when they began testing. So I went off to do my own thing, I didn't hang around. So why the big deal to easy child 2/difficult child 2 at the end of the session, "Now, will you bring yourself next time?"

    Stuff 'em.

    EEG tomorrow for easy child 2/difficult child 2. I might let her get herself there (it's literally around the corner from her place, a two minute walk for her) and then I'll drop in later. I've got some shopping to do for mother in law anyway, I can fit it all in and get easy child 2/difficult child 2 to telephone me when the doctor is ready to see her after the EEG.

    Talking to our adult Aspie friend today was interesting. He's known our kids since they were very little (since before difficult child 3 was born) and has certainly observed their quirks (and identified with them). He pointed out the common misdiagnoses especially for girls with Asperger's. He is firmly convinced that easy child 2/difficult child 2 does have Asperger's. He emailed me the name of a good shrink in our area who we could send the kids to. We'll see how it goes tomorrow. I'll let you all know how we get on.

    Marg
     
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