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any resources about FASD or ARND?
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<blockquote data-quote="susiestar" data-source="post: 583484" data-attributes="member: 1233"><p>I wish there was a way to legally keep women from drinking during pregnancy. I won't say much more because it would end up political and that just sidetracks us from answers to ksm's questions. </p><p></p><p>Do you have a parent report? The link in my signature will take you to the archived thread with the outline and more detailed info. It is basically ALL the info about difficult child in one binder. It is a LIFESAVER, sometimes very literally. Warrior Moms before my time came up with the outline and they did an awesome job. It lets you keep everything organized and at your fingertips. It goes with you to each appointment, session, meeting,whatever. When the doctor or whomever is wondering about this medication, you can go to that section and say "we have tried that medication at this dose for X weeks with this result" for each medication. You can give a copy to the various professionals you work with, but make sure you keep a master copy and a working copy for yourself.</p><p></p><p>I summarized sections and only gave the docs the summaries because after a little while I realized they were not reading it all or in depth. so a summary at the beginning of the section had the recent info in bullets so that the doctor didn't get bogged down. </p><p></p><p>I also have current photos in the PRs. For many people, it is easier to remember names than faces, or the combination of them rather than just one. As a kid there was a large family in my school who's name was one letter from mine. At one point someone at the pediatrician's office dropped the files for ALL of us (they had six kids at the time) and nothing was fastened into the file folder. ALL the pages were mixed up, there were no names on a lot of the pages. Luckily we were all pretty healthy, but we ALL have guesstimates on when we had various shots, etc... There were two shots that some of us needed and we all got them again, so it has always stuck in my mind. </p><p></p><p>Because of this, I put a current photo at the beginning of the report, on the bottom of the title page, at the beginning of each section and if a section is long, periodically through the report. I put the original photo on my master copy and then photocopy with the report rather than using originals all through the report. At first a few docs laughed at the photos, claiming they could remember the child's face and the photos were 'showing off' how nice I thought they looked. Later, the ones we stuck with, said they appreciated it because at the end of a long day, when dealing with messages or a crisis, the photo helped them remember the details of what was going on and what had/hadn't worked in the past. </p><p></p><p>I firmly believe that with-o a Parent Report showing ALL we had done to help each of our kids as we went through the bad years, we could have lost custody and the kids would have been further damaged. We also could not have gotten the in depth help we did get, or much of the school support. Being able to show that we saw this list of docs, tried this medication, this medication combo, had this therapy for this long, etc.... Worked to help keep Wiz growing to the point where he was able to turn himself around in a very positive way.</p><p></p><p>It won't fix the problems our kids have, but a Parent Report can help us figure out what to try next, even if that is because whatever is next is the only thing left that we know about. </p><p></p><p>Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE)/ARND is a huge and complicated basket of problems and challenges. By keeping track of what you have done, and how well it ended up, you can figure out the next step, or maybe even the next 2 or 3. MANY doctors seem to think that because a parent says something has been tried, taken, done, redone, yakked up on the floor or danced under the moon at midnight does NOT mean it really happened. They want proof. They will believe a barely legible scribble on a faxed/photocopied copy of a chart long before they will understand that you truly did try this, with that result, etc..... </p><p></p><p>When you walk in with your Parent Report in a binder, with copies of lab work, reports from various doctors/therapists, copies of treatment plans, lists of medications taken and how they worked, etc....., you gain nearly instant credibility. it isn't 'just' mom's word, it is in black and white, printed. WE have a bias against believing what is typed on a page, even if it makes no sense. It is a cultural bias I took full advantage of.</p><p></p><p>It takes time to put together a PR. Don't do it all at one time, work in short chunks of time. It is fine to take a partially finished PR to appointments. I did the most recent stuff first, and then put the older stuff in as I had time. One way to get a comprehensive list of medications is to ask your pharmacist to print out a list of your records. If you used more than one pharmacy, ask them all (I have a regular pharmacy and one for when mine is closed or doesn't have a medicine in stock.). Same for medical records. Pharmacies usually don't charge for records but labs may or may not. I always get a copy of xrays, lab work, etc.... when i have it done. </p><p></p><p>Don't settle for the dr report on what the lab says. It is usually a form that says that the results are normal, or that you need to see the doctor. You want to get copies of the actual report with the actual levels. Hospitals and labs usually only keep this info for seven years, same for xrays and other scans. You don't have to go back and try to get all those records, but going forward ask for the dr report and the actual results that were sent to the dr. Don't let them talk you out of it. Some offices seem to feel it is their info and you have no right to it. They are wrong. Insist on being given the information. You may not need it now, but it could help in the future.</p><p></p><p>The neuropsychologist should have an idea of the tests he wants to do. I always ask for the names of the tests, but NEVER with Wiz in the room. Wiz has different problems, but if he knew the name of the test, he would research it and figure out how to skew his results. It sort of runs in the family, so I was always sure to either have him leave the room or to call the next day and ask for the names of the tests.</p></blockquote><p></p>
[QUOTE="susiestar, post: 583484, member: 1233"] I wish there was a way to legally keep women from drinking during pregnancy. I won't say much more because it would end up political and that just sidetracks us from answers to ksm's questions. Do you have a parent report? The link in my signature will take you to the archived thread with the outline and more detailed info. It is basically ALL the info about difficult child in one binder. It is a LIFESAVER, sometimes very literally. Warrior Moms before my time came up with the outline and they did an awesome job. It lets you keep everything organized and at your fingertips. It goes with you to each appointment, session, meeting,whatever. When the doctor or whomever is wondering about this medication, you can go to that section and say "we have tried that medication at this dose for X weeks with this result" for each medication. You can give a copy to the various professionals you work with, but make sure you keep a master copy and a working copy for yourself. I summarized sections and only gave the docs the summaries because after a little while I realized they were not reading it all or in depth. so a summary at the beginning of the section had the recent info in bullets so that the doctor didn't get bogged down. I also have current photos in the PRs. For many people, it is easier to remember names than faces, or the combination of them rather than just one. As a kid there was a large family in my school who's name was one letter from mine. At one point someone at the pediatrician's office dropped the files for ALL of us (they had six kids at the time) and nothing was fastened into the file folder. ALL the pages were mixed up, there were no names on a lot of the pages. Luckily we were all pretty healthy, but we ALL have guesstimates on when we had various shots, etc... There were two shots that some of us needed and we all got them again, so it has always stuck in my mind. Because of this, I put a current photo at the beginning of the report, on the bottom of the title page, at the beginning of each section and if a section is long, periodically through the report. I put the original photo on my master copy and then photocopy with the report rather than using originals all through the report. At first a few docs laughed at the photos, claiming they could remember the child's face and the photos were 'showing off' how nice I thought they looked. Later, the ones we stuck with, said they appreciated it because at the end of a long day, when dealing with messages or a crisis, the photo helped them remember the details of what was going on and what had/hadn't worked in the past. I firmly believe that with-o a Parent Report showing ALL we had done to help each of our kids as we went through the bad years, we could have lost custody and the kids would have been further damaged. We also could not have gotten the in depth help we did get, or much of the school support. Being able to show that we saw this list of docs, tried this medication, this medication combo, had this therapy for this long, etc.... Worked to help keep Wiz growing to the point where he was able to turn himself around in a very positive way. It won't fix the problems our kids have, but a Parent Report can help us figure out what to try next, even if that is because whatever is next is the only thing left that we know about. Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE)/ARND is a huge and complicated basket of problems and challenges. By keeping track of what you have done, and how well it ended up, you can figure out the next step, or maybe even the next 2 or 3. MANY doctors seem to think that because a parent says something has been tried, taken, done, redone, yakked up on the floor or danced under the moon at midnight does NOT mean it really happened. They want proof. They will believe a barely legible scribble on a faxed/photocopied copy of a chart long before they will understand that you truly did try this, with that result, etc..... When you walk in with your Parent Report in a binder, with copies of lab work, reports from various doctors/therapists, copies of treatment plans, lists of medications taken and how they worked, etc....., you gain nearly instant credibility. it isn't 'just' mom's word, it is in black and white, printed. WE have a bias against believing what is typed on a page, even if it makes no sense. It is a cultural bias I took full advantage of. It takes time to put together a PR. Don't do it all at one time, work in short chunks of time. It is fine to take a partially finished PR to appointments. I did the most recent stuff first, and then put the older stuff in as I had time. One way to get a comprehensive list of medications is to ask your pharmacist to print out a list of your records. If you used more than one pharmacy, ask them all (I have a regular pharmacy and one for when mine is closed or doesn't have a medicine in stock.). Same for medical records. Pharmacies usually don't charge for records but labs may or may not. I always get a copy of xrays, lab work, etc.... when i have it done. Don't settle for the dr report on what the lab says. It is usually a form that says that the results are normal, or that you need to see the doctor. You want to get copies of the actual report with the actual levels. Hospitals and labs usually only keep this info for seven years, same for xrays and other scans. You don't have to go back and try to get all those records, but going forward ask for the dr report and the actual results that were sent to the dr. Don't let them talk you out of it. Some offices seem to feel it is their info and you have no right to it. They are wrong. Insist on being given the information. You may not need it now, but it could help in the future. The neuropsychologist should have an idea of the tests he wants to do. I always ask for the names of the tests, but NEVER with Wiz in the room. Wiz has different problems, but if he knew the name of the test, he would research it and figure out how to skew his results. It sort of runs in the family, so I was always sure to either have him leave the room or to call the next day and ask for the names of the tests. [/QUOTE]
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