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<blockquote data-quote="susiestar" data-source="post: 501651" data-attributes="member: 1233"><p>I have not read every response because I wanted to urge you to please consider that something may have happened during that surgery that you are unaware of. My son was born with 2 easily corrected urinary issues. He had surgery at 22 mos to correct them and the docs botched it. We were told that the 2nd problem would have to be redone because the anesthesiologist didn't pay attention and realize that they were doing two procedures at once (I know he was told verbally six times and it was written in at least 4 places that he signed that he had read - because I saw/heard that!) so they had to stop early because they gave him a medication that they couldn't give a second time and it was shorter acting than they needed. Two weeks after the surgery Wiz saw a dr on tv in a mask and curled up into ball holding his privates crying hysterically that "surgy hurts surgy hurts" over and over. One nurse told me that he WOKE UP during the 2nd operation and they didn't tell me because they didn't want to be sued. The hospital tried to not give me the surgical notes but I insisted and they were worded VERY carefully but it was clear to me that it happened. Esp when the surgeon turned so white when I told him the joke they were telling in the OR when Wiz woke up - VERY VERY DIRTY adult joke. He stammered and left the room and refused to come back in after that. The docs all SWORE that there was NO WAY that anyone, even an adult, could know that stuff or have ANY memories because the medications make you not remember. BS. Wiz remembered it all very clearly and was able to tell anyone who would listen what happened. It was super hard to get the surgery redone, but it HAD to be redone. How do you EVER trust someone after that? We moved and had a very reputable children's hospital do the repair, but it was still super hard. He had a problem and we had to go to the ER for help with it after the 2nd surgery and the ER doctor wanted to do something with-o giving him any medications. Well, my mom was with me, and that doctor thought he had two lionesses with a threatened cub when he came toward my son with-o giving him any medications for pain. We scared the daylights out of him - Gma actually GROWLED at him and I only heard that once as a kid wehn a doctor was going to hit my bro for "whining" when bro was in a lot of pain. My mom just NEVER acts that way, but we were NOT going to allow it and he thought he could jsut push us aside. He got a more senior doctor and that doctor was also mad at him for not listening and for MAKING us growl. It is the main reason we liked the hospital.</p><p></p><p>There is EVERY possibility that your son could have neuro complications from the surgery or even remembers what happened in the surgery or vague bits of it. Heck, I remember several procedures that the docs were shocked I remembered. Some of my records from when I was a teen have notes to NEVER tell dirty jokes during surgery because patient tells her mom all of them! I guess I should have expected my son to remember at least as much as I did. </p><p></p><p>I don't know what esle is going on, but I do think you have a complicated kiddo. I would get the neruopsych to test him- neuropsychologist NOT clinical psychologist. Neuropsychs have a lot of extra training in how the brain affects behavior. they do a LOT of testing and can help identify all sorts of problems.</p><p></p><p>Are YOU getting help for your problems? I know it is hard, but if you don't get help then you can't help him. Please be carefulw ith diazepam. Use of it for longer than 4-6 weeks CAUSES depression in most people. LOTS of psychiatrists seem to not realize this but it is in a LOT of the literature. I ran into that at one point. Other benzos don't usually do that, so if they could change to temazepam, lorazepam, alprazolam, or another benzo you might have a LOT of improvement. Also, there is a medication called fluvoxamine, brand name luvox, that is prozac on steroids, basically. It is a MUCH stronger version of fluoxetine, so if the fluoxetine is helping but not enough, you might ask about that. Just be CAREFUL with this type of medication and taper off slowly - most docs do NOT taper these medications slow enough to handle withdrawal. If you add a different medication that is an ssri/snri antidepressant and increase it as you decrease the medication you are one originally, this can help. </p><p></p><p>There is a LOT going on, and have you considered the girlfriend/cf diet? I know he sneaks snacks and has a weight problem. There are a LOT of kids who are helped by a gluten/casein free diet. It is not nearly as hard to do as it used to be. Mostly because there are awesome foods now that fit the diet because so many people have it. Food allergies CAN cause huge behavior problems and they are HARD to test for. Most allergy docs, if they are super honest, wiill tell you that they are so hard to test for and the only truly reliable way to know is to do an elimination diet (go with-o any food that can cause an allergy for 6 weeks) and then slowly add 1 food at a time back to see if the problems return. It isn't easy but it is do-able. My youngest was allergic to dairy and a lot of other stuff and we found that the tofutti products are amazingly wonderful. Their cream cheese really IS better than cream cheese and I had to fight to keep my other kids from eating it all the day I bought it. The tofutti cuties ice cream sandwiches are even better, and they are as good as some of the super premium ice creams (and I HATE health food so to say this means it doesn't taste ANYTHING like health food) and those I would actually sneak into the house and put into an empty box of brussels sprouts or asparagus in the freezer because otherwise the kids at the whole box at one time! </p><p></p><p>It is just a thought. My difficult child wasn't helped by the girlfriend/cf diet, but I know a lot of kids who are.</p></blockquote><p></p>
[QUOTE="susiestar, post: 501651, member: 1233"] I have not read every response because I wanted to urge you to please consider that something may have happened during that surgery that you are unaware of. My son was born with 2 easily corrected urinary issues. He had surgery at 22 mos to correct them and the docs botched it. We were told that the 2nd problem would have to be redone because the anesthesiologist didn't pay attention and realize that they were doing two procedures at once (I know he was told verbally six times and it was written in at least 4 places that he signed that he had read - because I saw/heard that!) so they had to stop early because they gave him a medication that they couldn't give a second time and it was shorter acting than they needed. Two weeks after the surgery Wiz saw a dr on tv in a mask and curled up into ball holding his privates crying hysterically that "surgy hurts surgy hurts" over and over. One nurse told me that he WOKE UP during the 2nd operation and they didn't tell me because they didn't want to be sued. The hospital tried to not give me the surgical notes but I insisted and they were worded VERY carefully but it was clear to me that it happened. Esp when the surgeon turned so white when I told him the joke they were telling in the OR when Wiz woke up - VERY VERY DIRTY adult joke. He stammered and left the room and refused to come back in after that. The docs all SWORE that there was NO WAY that anyone, even an adult, could know that stuff or have ANY memories because the medications make you not remember. BS. Wiz remembered it all very clearly and was able to tell anyone who would listen what happened. It was super hard to get the surgery redone, but it HAD to be redone. How do you EVER trust someone after that? We moved and had a very reputable children's hospital do the repair, but it was still super hard. He had a problem and we had to go to the ER for help with it after the 2nd surgery and the ER doctor wanted to do something with-o giving him any medications. Well, my mom was with me, and that doctor thought he had two lionesses with a threatened cub when he came toward my son with-o giving him any medications for pain. We scared the daylights out of him - Gma actually GROWLED at him and I only heard that once as a kid wehn a doctor was going to hit my bro for "whining" when bro was in a lot of pain. My mom just NEVER acts that way, but we were NOT going to allow it and he thought he could jsut push us aside. He got a more senior doctor and that doctor was also mad at him for not listening and for MAKING us growl. It is the main reason we liked the hospital. There is EVERY possibility that your son could have neuro complications from the surgery or even remembers what happened in the surgery or vague bits of it. Heck, I remember several procedures that the docs were shocked I remembered. Some of my records from when I was a teen have notes to NEVER tell dirty jokes during surgery because patient tells her mom all of them! I guess I should have expected my son to remember at least as much as I did. I don't know what esle is going on, but I do think you have a complicated kiddo. I would get the neruopsych to test him- neuropsychologist NOT clinical psychologist. Neuropsychs have a lot of extra training in how the brain affects behavior. they do a LOT of testing and can help identify all sorts of problems. Are YOU getting help for your problems? I know it is hard, but if you don't get help then you can't help him. Please be carefulw ith diazepam. Use of it for longer than 4-6 weeks CAUSES depression in most people. LOTS of psychiatrists seem to not realize this but it is in a LOT of the literature. I ran into that at one point. Other benzos don't usually do that, so if they could change to temazepam, lorazepam, alprazolam, or another benzo you might have a LOT of improvement. Also, there is a medication called fluvoxamine, brand name luvox, that is prozac on steroids, basically. It is a MUCH stronger version of fluoxetine, so if the fluoxetine is helping but not enough, you might ask about that. Just be CAREFUL with this type of medication and taper off slowly - most docs do NOT taper these medications slow enough to handle withdrawal. If you add a different medication that is an ssri/snri antidepressant and increase it as you decrease the medication you are one originally, this can help. There is a LOT going on, and have you considered the girlfriend/cf diet? I know he sneaks snacks and has a weight problem. There are a LOT of kids who are helped by a gluten/casein free diet. It is not nearly as hard to do as it used to be. Mostly because there are awesome foods now that fit the diet because so many people have it. Food allergies CAN cause huge behavior problems and they are HARD to test for. Most allergy docs, if they are super honest, wiill tell you that they are so hard to test for and the only truly reliable way to know is to do an elimination diet (go with-o any food that can cause an allergy for 6 weeks) and then slowly add 1 food at a time back to see if the problems return. It isn't easy but it is do-able. My youngest was allergic to dairy and a lot of other stuff and we found that the tofutti products are amazingly wonderful. Their cream cheese really IS better than cream cheese and I had to fight to keep my other kids from eating it all the day I bought it. The tofutti cuties ice cream sandwiches are even better, and they are as good as some of the super premium ice creams (and I HATE health food so to say this means it doesn't taste ANYTHING like health food) and those I would actually sneak into the house and put into an empty box of brussels sprouts or asparagus in the freezer because otherwise the kids at the whole box at one time! It is just a thought. My difficult child wasn't helped by the girlfriend/cf diet, but I know a lot of kids who are. [/QUOTE]
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