Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 How old is your child? What meds do you have him on? I only ask because I have an 11 year old that has had mood disorder with high functioning autism. We were concerned about bipolar and were told by many doctors that those are autistic characteristics, and bipolar appears later in life. This is my recent story: we were having a time with behavior (to say the least) our son was on Focalyn and Zoloft when the behavior set in. Then we went to tennex. Then abilify. None of them touched it. A neurologist told us our only chance was antipsychotics in higher doses regardless of the medical risks. At the same time we were concerned about his health, he kept complaining about head aches and stomach aches. We got him a full medical workup and found he blood in is stool. We went to see Dr. Crim at Miami Children’s Hospital. She said that is not normal let’s scope him. So we did. (Side note this Doctor is awesome she is very knowledgeable about autism) This is his second scope, first being about 4 years before. Dr. Crim took over an hour looking around. She did biopsies and discovered he had celiac disease. His blood work however was not positive for celiac nor has it ever been. He has been tested many times through out is young life. She explained that 5% of celiac will test negative in blood work. Around that time we took him off of all the meds he was on not knowing what was causing problems, and what was helping. We then put him on a gluten free diet. My son is like a new boy. He is calm and happy, he has gained a much needed 20 pounds and his black circles are gone. Over the last few months we have started him on Deplin (folate) and a very low dose of Propananol. This was all great. He is still having a hard time focusing like he did on the focolyn so the doctor suggested caffeine. We tried that today and it was a disaster. Not as bad as before, but not good. So we learned no stimulates for him! I hope this helps you. Sincerely, Kim From: sList [mailto:sList ] On Behalf Of Clara Sent: Tuesday, March 29, 2011 2:38 PM To: sList Subject: dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 , Thanks for your reply. Mine is 11, he is not typical autism, he is Dx now with pdd nos. He has been on every med with no relief. he is diagnosed bipolar too. All the docs we go to firmly believe in childhood onset bipolar OR at least childhood mood disorder. there are docs who either believe it or dont. Did you son have the mood swings or just behavioral problems? Or I should say, what kinds of behavioral problems? I have put my son on GF diet several times and seen no difference, maybe I will look into it further with a scope. He also tests negative in blood tests. Thanks so much for the message, I am reminded to not give up looking for causes. Clara RE: dually diagnosed kids? How old is your child? What meds do you have him on? I only ask because I have an 11 year old that has had mood disorder with high functioning autism. We were concerned about bipolar and were told by many doctors that those are autistic characteristics, and bipolar appears later in life. This is my recent story: we were having a time with behavior (to say the least) our son was on Focalyn and Zoloft when the behavior set in. Then we went to tennex. Then abilify. None of them touched it. A neurologist told us our only chance was antipsychotics in higher doses regardless of the medical risks. At the same time we were concerned about his health, he kept complaining about head aches and stomach aches. We got him a full medical workup and found he blood in is stool. We went to see Dr. Crim at Miami Children’s Hospital. She said that is not normal let’s scope him. So we did. (Side note this Doctor is awesome she is very knowledgeable about autism) This is his second scope, first being about 4 years before. Dr. Crim took over an hour looking around. She did biopsies and discovered he had celiac disease. His blood work however was not positive for celiac nor has it ever been. He has been tested many times through out is young life. She explained that 5% of celiac will test negative in blood work. Around that time we took him off of all the meds he was on not knowing what was causing problems, and what was helping. We then put him on a gluten free diet. My son is like a new boy. He is calm and happy, he has gained a much needed 20 pounds and his black circles are gone. Over the last few months we have started him on Deplin (folate) and a very low dose of Propananol. This was all great. He is still having a hard time focusing like he did on the focolyn so the doctor suggested caffeine. We tried that today and it was a disaster. Not as bad as before, but not good. So we learned no stimulates for him! I hope this helps you. Sincerely, Kim From: sList [mailto:sList ] On Behalf Of ClaraSent: Tuesday, March 29, 2011 2:38 PMTo: sList Subject: dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Have you seen a DAN Dr.? I highly recommend ours it is Dr. Dan Rossignal in Melbourne. Just google him and his contact info will pop up. dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 The GF diet is tricky because it is an all or nothing diet. It works most of the time but you have to read the labels on everything from hand soap, to shampoo, to laundry detergent, and play-doh. Gluten is in everything and you have to be diligent (not saying you weren't) when you go Gluten free. It is not just about not eating gluten, it is about not coming into contact with gluten in any way. I hear parents say all of the time that the GFCF diet did not work, but if you do not eliminate every drop of Gluten or Casein then the diet will not work. Re: dually diagnosed kids? , Thanks for your reply. Mine is 11, he is not typical autism, he is Dx now with pdd nos. He has been on every med with no relief. he is diagnosed bipolar too. All the docs we go to firmly believe in childhood onset bipolar OR at least childhood mood disorder. there are docs who either believe it or dont. Did you son have the mood swings or just behavioral problems? Or I should say, what kinds of behavioral problems? I have put my son on GF diet several times and seen no difference, maybe I will look into it further with a scope. He also tests negative in blood tests. Thanks so much for the message, I am reminded to not give up looking for causes. Clara dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 My son is in hi twenties and is diag. autism/pdd with explosive personality disorder. Is your child's bi-polar problem anger related and/or impulse control related? My son takes stavzor (depakote) and I give him niacinamide, evening primrose, beta carotene, and lemon balm (melissa) When he gets like he is going to get upset or angry, I feed him lots of peas and soybeans because according to a German study, they lower testosterone levels. It actually seems to help. The soy seems better than the peas. A recent study showed that one of the genetic markers in autistic people often showed an over abundance of testosterone. (The same marker were the PANDA virus is.) There is an interesting article at: http://www.autism-pdd.net/testdump/test19432.htm that talks about the overabundance of testosterone. My son was on Risperdal for a while, but it didn't help at all. A lot of doctors just attribute behavioral problems like anger management problems to the autism and don't want to look at it as a seperate diagnosis. They don't want to have to treat both disorders. I hope this info is helpful to you. > > > > , > > > > Thanks for your reply. Mine is 11, he is not typical autism, he is Dx now with pdd nos. He has been on every med with no relief. he is diagnosed bipolar too. All the docs we go to firmly believe in childhood onset bipolar OR at least childhood mood disorder. there are docs who either believe it or dont. Did you son have the mood swings or just behavioral problems? Or I should say, what kinds of behavioral problems? > > > > I have put my son on GF diet several times and seen no difference, maybe I will look into it further with a scope. He also tests negative in blood tests. > > > > Thanks so much for the message, I am reminded to not give up looking for causes. > > > > Clara > > > dually diagnosed kids? > > > > Â > > > > > > > > Does. > > > > Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Morning to all,I have a son who is 21 and is dually diagnosed with Autism and a variety of mental health issues. He was and still is an enigma to both cultures. Educating him and where he belongs, as well as treating his physical and medication needs still baffle us and the doctors. I will tell you that you have to treat the whole child. Sometimes that means breaking it up. Medications have not and I believe will not ever be a cure all. Like another mom wrote I have found that Depakote has been a staple drug in his life. No doubt certain foods will exasperate the moods. You do however need to pick your battles wisely. My son is on the med waiver and even that has been a problem do to his complexities. Every one wants cookie cutter, a label that fits them all. I assure you that has been my battle his whole life and will continue to be. I wish you luck, a good behaviorist and a psychiatrist who gets the whole child. In the mean time do not let anyone tell you that your child is a rarity. There are more then you think out there. As they get older that becomes more obvious. Make schools and doctors accountable. They need to deal with all there comorbidity. We as there parents need to stop excepting the word of these professionals. That they have there hands tied because you child is so different. In time you will find the right type of class room, teacher, medication ect.. Hopefully all at the same time.Sincerely,Kim GluskyFrom: Subject:Re: dually diagnosed kids?Date:March 29, 2011 10:18:35 PM EDTTo:sList The GF diet is tricky because it is an all or nothing diet. It works most of the time but you have to read the labels on everything from hand soap, to shampoo, to laundry detergent, and play-doh. Gluten is in everything and you have to be diligent (not saying you weren't) when you go Gluten free. It is not just about not eating gluten, it is about not coming into contact with gluten in any way. I hear parents say all of the time that the GFCF diet did not work, but if you do not eliminate every drop of Gluten or Casein then the diet will not work. Re: dually diagnosed kids? , Thanks for your reply. Mine is 11, he is not typical autism, he is Dx now with pdd nos. He has been on every med with no relief. he is diagnosed bipolar too. All the docs we go to firmly believe in childhood onset bipolar OR at least childhood mood disorder. there are docs who either believe it or dont. Did you son have the mood swings or just behavioral problems? Or I should say, what kinds of behavioral problems? I have put my son on GF diet several times and seen no difference, maybe I will look into it further with a scope. He also tests negative in blood tests. Thanks so much for the message, I am reminded to not give up looking for causes. Clara dually diagnosed kids? Does.Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 My son, who just recently was diagnosed with PDD-NOS, has been treated for ADHD and Anxiety Disorder. Took years, but we found that Concerta worked best for him, now he is on the Daytrana patch, S-L-O-W-L-Y releases the meds into his system. Much of his adverse reactions to the other meds were just the amount of medication being dumped in his system.Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Thank you Sherry and everyone else who has shared their opinions on this issue. I dont want to send out individual thank yous and flood the email list. Clara Re: dually diagnosed kids? My son, who just recently was diagnosed with PDD-NOS, has been treated for ADHD and Anxiety Disorder. Took years, but we found that Concerta worked best for him, now he is on the Daytrana patch, S-L-O-W-L-Y releases the meds into his system. Much of his adverse reactions to the other meds were just the amount of medication being dumped in his system. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Wow, this is exactly how I feel....no one believes it or gets it. They tell me he cant be both! Well he can and is. The schools do not get it, the state doesnt get it. We have found a good psychiatrist but meds are not working. But I really accept this dual diagnosis and am fighting to get him all the well rounded holistic help he needs. thank you for your repsonse, so nice to hear soemone else understands. Clara dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Clara, do you mind if I ask who your kid's psychiatrist is? Or really anyone who knows of a good one for kids. From: Subject: Re: dually diagnosed kids? Date: March 29, 2011 10:18:35 PM EDT To: sList The GF diet is tricky because it is an all or nothing diet. It works most of the time but you have to read the labels on everything from hand soap, to shampoo, to laundry detergent, and play-doh. Gluten is in everything and you have to be diligent (not saying you weren't) when you go Gluten free. It is not just about not eating gluten, it is about not coming into contact with gluten in any way. I hear parents say all of the time that the GFCF diet did not work, but if you do not eliminate every drop of Gluten or Casein then the diet will not work. Re: dually diagnosed kids? , Thanks for your reply. Mine is 11, he is not typical autism, he is Dx now with pdd nos. He has been on every med with no relief. he is diagnosed bipolar too. All the docs we go to firmly believe in childhood onset bipolar OR at least childhood mood disorder. there are docs who either believe it or dont. Did you son have the mood swings or just behavioral problems? Or I should say, what kinds of behavioral problems? I have put my son on GF diet several times and seen no difference, maybe I will look into it further with a scope. He also tests negative in blood tests. Thanks so much for the message, I am reminded to not give up looking for causes. Clara dually diagnosed kids? Does. Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Whoever is telling you he can't be both has no idea what he/she is talking about. My son is 20 and was diagnosed bipolar at 4, ADHD, sensory integration, auditory processing, anxiety, PTSD and Asperger's finally at 10. Many kids on the spectrum have dual diagnoses, and not just bipolar. Much was treated with pharmaceuticals, at one point more than 5. Now, after diet, biomedical treatment and osteopathic manipulation, he is on a low dose of one. Interventions that made the most difference: Chelation, probiotics, diet, fish oils, N-acetyl cysteine (for the anger--we just started this one in January, wish I had known about it sooner). It *can* get better. > > Wow, this is exactly how I feel....no one believes it or gets it. They tell me he cant be both! Well he can and is. The schools do not get it, the state doesnt get it. We have found a good psychiatrist but meds are not working. But I really accept this dual diagnosis and am fighting to get him all the well rounded holistic help he needs. thank you for your repsonse, so nice to hear soemone else understands. > > > Clara > > > dually diagnosed kids? > > > Does. > > Does anyone on the list have a child who is dually diagnosed with a developmental disability (ex. autism) AND a mental health disorder (ex. bipolar, mood disorder etc)? My son has both Dx's and I am trying to find parents who like me are fighting to get certain mental health services that kids who are double diagnosed with autism are discluded from......anyone's child on the med waiver or diagnosed with autism and with a mental health disorder as well or familiar with this issue? thank you! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 Hello all, I am the Research Coordinator for a study on Medication Responsiveness for individuals with ASD. We would appreciate if you would take the time to fill out our quick survey with goals of helping clinicians better prescribe medications for Autistic individuals. Please visit http://www.surveymonkey.com/GWautismstudy to obtain more information. Participant Compensation! Thank you, - Quote Link to comment Share on other sites More sharing options...
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