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13 year old son STILL wears diapers - need help
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<blockquote data-quote="susiestar" data-source="post: 526846" data-attributes="member: 1233"><p>It sure sounds like there is a LOT more than adhd and odd going on here. I know the budget problems and time problms involved in arranging multiple assessments, but he really truly needs a FULL evaluation, both physical and mental/psychological/Occupational Therapist (OT)/Speech Language Pathologist (SLP) to work on the problems.</p><p></p><p>Have you tried applying for SSI or state kids insurance (medicaid) for him? Because of the severity of his problems AND the developmental delays, it is possible that you would qualify even if you have too high an income. I think one of the things you might look into is called a Katie Beckett waiver - it is for kids with severe disabilities. It helps cover a LOT that a parent just couldn't otherwise handle. It is in all states though some states may have another name that also applies to the program. </p><p></p><p>If possible, a children's hospital would be an awesome place to find the various experts that are needed in one place. We often recommend a neuropsychologist for doing most of the testing as good ones do 8-12 hours of testing broken up into several appts (as many as are needed). You also really NEED a good gastroenterologist and he probably needs a colonoscopy among other tests. Have you tried the gluten/casein free diet (often called gluten-free, casein-free or girlfriend/cf diet on other forums)? Yes, it is recommended for celiac disease most often, but it is also helpful for many other issues. Some autistic children and children with other problems are helped greatly by this. You would start off with what is called an elimination diet where the most common allergens are removed from his diet for a period of time. then foods are added back slowly, 1 at a time, to see if they cause problems.</p><p></p><p>I cannot imagine how upsetting it would be for him to have the diarrhea at school. But I also cannot imagine how hard it is for you to have to deal with all of his diapers. You have my sympathy. I do think you need a psychiatrist and psychologist on board to help with the psychological aspects of this problem also.</p><p></p><p>An Occupational Therapist (OT) evaluation for sensory issues is going to be a MUST if it hasn't been done. These are truly helpful and one of a handful of ways to help with-o adding medications. School should be able to do part of the Occupational Therapist (OT) evaluation, but a private (out of school) evaluation will give a more thorough evaluation because the school evaluation is designed to find and treat problems that relate to school, not to his entire life. </p><p></p><p>If he is bipolar, why is he not on any mood stabilizers? It is hard to find the right combination, but risperdal is an atypical antipsychotic and is NOT a mood stabilizer. People iwth bipolar NEED mood stabilizers esp. they are often given with atyp antis\psychotics but they are a crucial part of the medication combo to give him the best results. most mood stabilizers are also antiseizure medications, but a good psychiatrist will know the best ones to trial for him. Have you got a copy of The Bipolar Child by Papalous? It is supposed to be one of, if not the, best books on bipolar in children and it explains the medication protocol for treating bipolar VERY well. I would take a copy of it to the psychiatrist with you, and ask why the protocol hasn't been trialed as recommended by the board that certifies pediatrician and adolescent psychiatrists. </p><p></p><p>The link in my signature at the bottom of this post will take you to a thread about a Parent Report. The Parent Report is one of the most powerful tools a Warrior Parent can have in their arsenal. It has ALL the info about your child in ONE place that you can take to appts and keep everything organized in - and give copies of relevant sections to the various docs/experts you are working with. Moms who were on this forum before I joined came up with the outline and it is truly excellent.</p><p></p><p>Given the adoption, has anyone discussed attachment therapy? It isn't easy, but it sounds like he might benefit from it. </p><p></p><p>How well informed are you regarding the IEP he has at school? Do you have an advocate to help you with the school? School is required to do certain things, and in my opinion this toileting issue is something that they probably should be helping you with at least to some degree. Regardless of how overcrowded or overburdened the district is, they are still required to do certain things and often it takes a lot of knowledge of the ins and outs of the IEP regulations and an advocate to push them to provide what your child needs. Advocates are usually free to parents but you will likely have to google your state and educational advocate or else call the state level board of education to find one. </p><p></p><p>Welcome to the board!</p></blockquote><p></p>
[QUOTE="susiestar, post: 526846, member: 1233"] It sure sounds like there is a LOT more than adhd and odd going on here. I know the budget problems and time problms involved in arranging multiple assessments, but he really truly needs a FULL evaluation, both physical and mental/psychological/Occupational Therapist (OT)/Speech Language Pathologist (SLP) to work on the problems. Have you tried applying for SSI or state kids insurance (medicaid) for him? Because of the severity of his problems AND the developmental delays, it is possible that you would qualify even if you have too high an income. I think one of the things you might look into is called a Katie Beckett waiver - it is for kids with severe disabilities. It helps cover a LOT that a parent just couldn't otherwise handle. It is in all states though some states may have another name that also applies to the program. If possible, a children's hospital would be an awesome place to find the various experts that are needed in one place. We often recommend a neuropsychologist for doing most of the testing as good ones do 8-12 hours of testing broken up into several appts (as many as are needed). You also really NEED a good gastroenterologist and he probably needs a colonoscopy among other tests. Have you tried the gluten/casein free diet (often called gluten-free, casein-free or girlfriend/cf diet on other forums)? Yes, it is recommended for celiac disease most often, but it is also helpful for many other issues. Some autistic children and children with other problems are helped greatly by this. You would start off with what is called an elimination diet where the most common allergens are removed from his diet for a period of time. then foods are added back slowly, 1 at a time, to see if they cause problems. I cannot imagine how upsetting it would be for him to have the diarrhea at school. But I also cannot imagine how hard it is for you to have to deal with all of his diapers. You have my sympathy. I do think you need a psychiatrist and psychologist on board to help with the psychological aspects of this problem also. An Occupational Therapist (OT) evaluation for sensory issues is going to be a MUST if it hasn't been done. These are truly helpful and one of a handful of ways to help with-o adding medications. School should be able to do part of the Occupational Therapist (OT) evaluation, but a private (out of school) evaluation will give a more thorough evaluation because the school evaluation is designed to find and treat problems that relate to school, not to his entire life. If he is bipolar, why is he not on any mood stabilizers? It is hard to find the right combination, but risperdal is an atypical antipsychotic and is NOT a mood stabilizer. People iwth bipolar NEED mood stabilizers esp. they are often given with atyp antis\psychotics but they are a crucial part of the medication combo to give him the best results. most mood stabilizers are also antiseizure medications, but a good psychiatrist will know the best ones to trial for him. Have you got a copy of The Bipolar Child by Papalous? It is supposed to be one of, if not the, best books on bipolar in children and it explains the medication protocol for treating bipolar VERY well. I would take a copy of it to the psychiatrist with you, and ask why the protocol hasn't been trialed as recommended by the board that certifies pediatrician and adolescent psychiatrists. The link in my signature at the bottom of this post will take you to a thread about a Parent Report. The Parent Report is one of the most powerful tools a Warrior Parent can have in their arsenal. It has ALL the info about your child in ONE place that you can take to appts and keep everything organized in - and give copies of relevant sections to the various docs/experts you are working with. Moms who were on this forum before I joined came up with the outline and it is truly excellent. Given the adoption, has anyone discussed attachment therapy? It isn't easy, but it sounds like he might benefit from it. How well informed are you regarding the IEP he has at school? Do you have an advocate to help you with the school? School is required to do certain things, and in my opinion this toileting issue is something that they probably should be helping you with at least to some degree. Regardless of how overcrowded or overburdened the district is, they are still required to do certain things and often it takes a lot of knowledge of the ins and outs of the IEP regulations and an advocate to push them to provide what your child needs. Advocates are usually free to parents but you will likely have to google your state and educational advocate or else call the state level board of education to find one. Welcome to the board! [/QUOTE]
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