12th January 2002
Gooodmorning Anne, it's me Mary!
Yup we've been through it all. Jay had to be sedated last summer to be catheterized because his urine had blood in it, I was terrified that one of the drugs had gone AWOL and damaged his insides. It turns out it was just a severe UTI but Jay had to be sedated before they could even draw his blood. My pediatrician called the ER doc in advance arranging the sedation, my pyschiatrist called and approved what meds were used, still when we drove the 12 miles there, the nurse was down right obnoxius, started bulling him and me,I had to be a momma bear, demand she stop and consult the head doctor that our pediatrician had made arrangements with- my 100#son enraged requires 4 big strong adult males to restrain- and even with the diet
he still has the same intensity of fight/flight/hide response to fear-fortunately that was our worst experience- also halidol did not sedate him the way it should have at another incident- the ambuelence EMT were amazed- he was calm and talkative- they kept saying -oh my god, he should be out cold! The next day the haliidol cause muscle cramps and he couldnt stand up straight for two days from that one dose.
I have had two good experiences- he needed his fourth grade immunizations-they are a year behind- I think mmr- I had no problem requesting they be mercury free- I told the new pediatrician to send in two big nurses, she didnt- he dashed out of the exam room and into the car. I told them I would wait and talk to the psychiatrist about sedation- the nurses were like- no way, we don't sedate for immunizations, I smiled CALMLY and said I know, thats why we'll consult the pshychiatrist- the immunizations were required or he couldn't keep going to school, fortunately our psychiatrist is affiliated with doctors office and our appointments are right in the same office. He arrange a nurse visit for our next visit with him- he talked to Jay alot and sat with us (I brought his step father along too- all the reinforcements I could find smile)- I asked his teachers to talk about the diseases you get without the shot before hand- Jay consented to the shot without sedation!
And jsut last weekend Jay sliced the fatty palm of his thumb open two inches long and quite a deep while opening a giant can of pineapple- no way around stitches I knew but to get him there and keep him calm I fantasized that it might just need a butterfly bandage- he calmed right down and stayed calm during the six hour wait!!! Before the doc came in, I told him out of ear shot of Jay, that Jay was high functioning autistic and about the fight/flight and that they would loose him in the hospital if he got scared and dashed out of the room ,that he might need sedation and that I wanted his psychiatrist called- that it takes four large men to restrain him, ect ect - in the end they decided to glue and cast the hand/wrist! It worked wonderfully and he was sooo proud of his cast. First ever, all his friends signed it. Never the less there was yet another uniformed nurse who when they brought us back in to do the work, said in the hall "so lets go in the operating room so they can stitch you up"- The step dad, myself and Jay all said in unison- noooo, the docs not gonna stitch it- it was important for Jay to here that we expected no needles. You could almost see an aura around him shimmering and ready to dash but he didn't-
If it helps tegretal and tenex didnt work for us anyway and you can't be on them more that a year or two- I remeber we had to do the ekg (spelling?)all that has worked for us was the ritilin and risperidol together- combats the hunger side effect of the risperdol also- serzone works to address the nerological tweeks-I believe it kind of builds bridges to fill in the nerological gaps that cause the impuses and noises and his self control shot way up with that and for a while he took buspar- were watching him closely without it now- it makes you dizzy for about 20 minutes after each dose which is why we discontinued it, but before we started it he would not ride an elevator, close a bathroom door, or go outside-ever-- he kept saying its too dark, too windy-even on the warmest calmest sunniest days, he'd see a tree shadow and dash right back in (this only began after a mini tornado whisked through our yard),he would not leave the house even to go to the store because we might loose him. the list is endless and bizarre. WE went with buspar because I also have anxiety attacks and took buspar- I was amazed at how much better I felt. I stopped taking it- and havent relapsed much- (I am still avoiding an over due tetnus shot though) once I knew what it felt like to approach scarry things in a normal way I could tell when I was becoming anxious and stop and breath and calm myself down. We are watching Jay -so far he has had no relapses at all.
One more thing - did any of the medical staff respect you enough to tell you that you son may become sterile from the risperdol? I was outraged- I have every hope of Jay recovering completely and leading a full happy life- he even talks about how he is going raise his own kids. a friend assures me he is on the lowest dose - she was amazed that it worked at all at the dose .5 and he is still very young- its more a puberty issue- but we approach puberty a little closer each day. I have postponed his am a dose a couple of times(still making sure he got his full dose for the day) on weekends and he clearly still needs it- he is much edgier and easily angered without it. I just hope we dont read in our retirement homes years from now about a government scam to sterilize autistic and mentally retarded individuals at the turn of the 21st century.
------Mary
Yup we've been through it all. Jay had to be sedated last summer to be catheterized because his urine had blood in it, I was terrified that one of the drugs had gone AWOL and damaged his insides. It turns out it was just a severe UTI but Jay had to be sedated before they could even draw his blood. My pediatrician called the ER doc in advance arranging the sedation, my pyschiatrist called and approved what meds were used, still when we drove the 12 miles there, the nurse was down right obnoxius, started bulling him and me,I had to be a momma bear, demand she stop and consult the head doctor that our pediatrician had made arrangements with- my 100#son enraged requires 4 big strong adult males to restrain- and even with the diet
he still has the same intensity of fight/flight/hide response to fear-fortunately that was our worst experience- also halidol did not sedate him the way it should have at another incident- the ambuelence EMT were amazed- he was calm and talkative- they kept saying -oh my god, he should be out cold! The next day the haliidol cause muscle cramps and he couldnt stand up straight for two days from that one dose.
I have had two good experiences- he needed his fourth grade immunizations-they are a year behind- I think mmr- I had no problem requesting they be mercury free- I told the new pediatrician to send in two big nurses, she didnt- he dashed out of the exam room and into the car. I told them I would wait and talk to the psychiatrist about sedation- the nurses were like- no way, we don't sedate for immunizations, I smiled CALMLY and said I know, thats why we'll consult the pshychiatrist- the immunizations were required or he couldn't keep going to school, fortunately our psychiatrist is affiliated with doctors office and our appointments are right in the same office. He arrange a nurse visit for our next visit with him- he talked to Jay alot and sat with us (I brought his step father along too- all the reinforcements I could find smile)- I asked his teachers to talk about the diseases you get without the shot before hand- Jay consented to the shot without sedation!
And jsut last weekend Jay sliced the fatty palm of his thumb open two inches long and quite a deep while opening a giant can of pineapple- no way around stitches I knew but to get him there and keep him calm I fantasized that it might just need a butterfly bandage- he calmed right down and stayed calm during the six hour wait!!! Before the doc came in, I told him out of ear shot of Jay, that Jay was high functioning autistic and about the fight/flight and that they would loose him in the hospital if he got scared and dashed out of the room ,that he might need sedation and that I wanted his psychiatrist called- that it takes four large men to restrain him, ect ect - in the end they decided to glue and cast the hand/wrist! It worked wonderfully and he was sooo proud of his cast. First ever, all his friends signed it. Never the less there was yet another uniformed nurse who when they brought us back in to do the work, said in the hall "so lets go in the operating room so they can stitch you up"- The step dad, myself and Jay all said in unison- noooo, the docs not gonna stitch it- it was important for Jay to here that we expected no needles. You could almost see an aura around him shimmering and ready to dash but he didn't-
If it helps tegretal and tenex didnt work for us anyway and you can't be on them more that a year or two- I remeber we had to do the ekg (spelling?)all that has worked for us was the ritilin and risperidol together- combats the hunger side effect of the risperdol also- serzone works to address the nerological tweeks-I believe it kind of builds bridges to fill in the nerological gaps that cause the impuses and noises and his self control shot way up with that and for a while he took buspar- were watching him closely without it now- it makes you dizzy for about 20 minutes after each dose which is why we discontinued it, but before we started it he would not ride an elevator, close a bathroom door, or go outside-ever-- he kept saying its too dark, too windy-even on the warmest calmest sunniest days, he'd see a tree shadow and dash right back in (this only began after a mini tornado whisked through our yard),he would not leave the house even to go to the store because we might loose him. the list is endless and bizarre. WE went with buspar because I also have anxiety attacks and took buspar- I was amazed at how much better I felt. I stopped taking it- and havent relapsed much- (I am still avoiding an over due tetnus shot though) once I knew what it felt like to approach scarry things in a normal way I could tell when I was becoming anxious and stop and breath and calm myself down. We are watching Jay -so far he has had no relapses at all.
One more thing - did any of the medical staff respect you enough to tell you that you son may become sterile from the risperdol? I was outraged- I have every hope of Jay recovering completely and leading a full happy life- he even talks about how he is going raise his own kids. a friend assures me he is on the lowest dose - she was amazed that it worked at all at the dose .5 and he is still very young- its more a puberty issue- but we approach puberty a little closer each day. I have postponed his am a dose a couple of times(still making sure he got his full dose for the day) on weekends and he clearly still needs it- he is much edgier and easily angered without it. I just hope we dont read in our retirement homes years from now about a government scam to sterilize autistic and mentally retarded individuals at the turn of the 21st century.
------Mary