Meds for 28 year old daughter with autism (moderate / severe level)

Hello, I am new to this site. My daughter, Shannon, is 28. In the early days of her diagnosis, we tried AIT (Berard), some vitamin therapy (didn't work), some diet adjustments (limit dairy.. I'm just no good when it comes to diet stuff that takes a lot of time), tried some sensory integration therapy. She was always in special ed and now a day program, needs 1:1 or a lowish staff to participant ratio).  I would say her autism falls between moderate and severe. She will never live on her own, she's like having a big toddler. She's a whiz when it comes to remembering dates and birthdays, but her communication just isn't.. interactive. She is verbal though. She has had behavioral issues (getting very agitated, hitting, sometimes kicking). I don't think it's 'anger' but rather frustration and she just gets in a zone then it's over almost as suddenly as it arrived.  I say all this just to give background.

Back when she was a teen, her psychiatrist put her on Geodon and Risperidone, adjusting the dosages. She had some huge issues in her early 20's, we changed docs, he took her off Geodon and only prescribed risperidone. The more she had behaviors, he upped the dosage until she was on 2 mg AM and 1.5 PM. She gained 100 lbs but her behavior did improve. I hated all the weight gain, but he never would switch her meds.

Fast forward, we now live in NC (where it's tough to get services, but that's another story). We have a doc who is willing to try other meds. She is on Lamotrigine 2x a day (200mg total). She doesn't eat so non stop compulsively any more and seems okay. Dr. also prescribed Trazodone (we used a low dose) and while it seemed to help Shannon at first, then it seemed to agitate her. We also tried Clonidine and Buspirone but have stopped both. We did the saliva/DNA test to see how she metabolizes meds, because what works on others, doesn't seem to work on Shannon.

Right now she's on Lamotrigine only, and, in a way, I wish we had one more med to calm her a bit. She would try Seroquil, but I'm scared of the non stop eating again.

I'm hoping the test results yield some helpful info. Shannon has very sensitive hearing... I'm going to try a listening program again. She hums almost constantly, sometimes much louder than others. We've been around with essential oils, I think I'll try lavender again and see if that helps.

28 years of dealing with autism and I'm just tired!! I don't mean that to sound negative at all. I love Shannon so much and she brings much joy. She lives at home, doesn't sleep the greatest.... it's just exhausting sometimes (I'm sure you all get this)!  I am thankful she's off risperidone, but wondering what others have tried. 

Thank you for listening!

Keri

  • Hi Keri. Have you tried any CBT (cognitive behavioural therapy) apps? They may help and I actually use one called companion. A well planned sensory diet will help your daughter to learn to soothe herself eventually no matter where she in on the spectrum. Many ppl don't use and/or change up their sensory diets but they should. It's been a long time since I've been around here at ASN but it holds a special place in my heart. I'll be checking in more frequently too as I hope to bring some positives back that were once offered to me here. Btw. I'm on spectrum and have worked in this field for a long time with ppl of all ages and abilities. If you want to message me here plz do. Kris (:
  • Hi Keri. Have you tried any CBT (cognitive behavioural therapy) apps? They may help and I actually use one called companion. A well planned sensory diet will help your daughter to learn to soothe herself eventually no matter where she in on the spectrum. Many ppl don't use and/or change up their sensory diets but they should. It's been a long time since I've been around here at ASN but it holds a special place in my heart. I'll be checking in more frequently too as I hope to bring some positives back that were once offered to me here. Btw. I'm on spectrum and have worked in this field for a long time with ppl of all ages and abilities. If you want to message me here plz do. Kris (:
  • Hi Keri! I have 35 years old daughter Veera and we are now again, hope so finally, trying to find correct diagnosis to her. ASD, Asperger or something else? I am quite sure she have nowadays something like medium ASD. When I read your description I almost cry because our daughter has so much same as your lovely Shannon. Our daughter's symptoms getmore worse in last two years. Now I'm trying to find anything that helps her, too. Lets try together help our children! I'm so happy to find this AutismSupportNetwork and You Keri, at this frist try. I'm trying to learn how to use this forum and english language and words.
    Veera's father, his brother and their father have/had coliacie disease ( totally glutein free diet ) and I find that somebody tries to help her ASDchild with glutein-free and casein ? free diet (not any kind of milk products) . So last December Veera was whitout all those foods containing glutein and milk. It was difficult and was not total. But now later I think it helps her. Althoug January and February she ate normal food and get totally worse. Now Mars we started this diet again and she is better already now. It is hard, this diet, it takes alot of my energy, money and patience.(She lives with us, too. ) . Tired too, here. Lifelong effort and support. Really great to find others who are in same ...to know you are not alone. I wish and pray you wisdom and strenght , Dear Keri.
    So somewhere else I read about desease called "leaky gut". Something is missing from persons gut and the gut "wall" . It' s structure is thin or full of microsmall holes. Then bacteria and other molecules which should stay in the gut gets straight in blood. Heart ciculates blood all over the body up and to the brains. This causes low or severe inflammation in hole body and especially in brain. This causes then ADD symptoms. What do you think about this "leaky gut"theory? It is trated by vitamins and probiotic, I red. There is not found total cure, not yet. ..Then I read that natural pills made from Berberin ( origin from some berries?from trees or bushes, old Chinese natural medicin) can help recover this "leaky gut". I try search more information about Berberin. ( Sorry my english, not so fine, but I hope you understand what I mean. Ask anyway if you don't understand me, please)
    Then last autumn, just after one of the hottiest and sunniest summer in our life we mesured in lab Veera's D3vitamin level in her blood. It was only 50 ! After sunny summer! Somewhere else I find that it should be 125 -200 or something like that in ASD persons blood. I started to give her 100micrograms D3-vitamin/day. Also I find that B -vitamin formula called folic asid is harmfull in ASD.. You should instead take same B-vitamin but formula called methyfolate. I give her 400mg per day . Then C-vitamin at least 500milligrams/day. Magnesium is too important and there is often lack of Mg. 375Mg /d. All other B-vitamins are needeed. And I gave my daughter Multivimin too earlier, but because it includes folic acid I' m trying to find some other resource. Least and not las t I try to give her Calsium 500mg pills and brobiotic capsula called Lactobacillus acidophilus. Uh.. Because she doest't always like at all to take these. This is our protocolla this moment. Wish and pray you again more strenght and power in Jesus name.
    Tertit
  • Hi Keri! I have 35 years old daughter Veera and we are now again, hope so finally, trying to find correct diagnosis to her. ASD, Asperger or something else? I am quite sure she have nowadays something like medium ASD. When I read your description I almost cry because our daughter has so much same as your lovely Shannon. Our daughter's symptoms getmore worse in last two years. Now I'm trying to find anything that helps her, too. Lets try together help our children! I'm so happy to find this AutismSupportNetwork and You Keri, at this frist try. I'm trying to learn how to use this forum and english language and words.
    Veera's father, his brother and their father have/had coliacie disease ( totally glutein free diet ) and I find that somebody tries to help her ASDchild with glutein-free and casein ? free diet (not any kind of milk products) . So last December Veera was whitout all those foods containing glutein and milk. It was difficult and was not total. But now later I think it helps her. Althoug January and February she ate normal food and get totally worse. Now Mars we started this diet again and she is better already now. It is hard, this diet, it takes alot of my energy, money and patience.(She lives with us, too. ) . Tired too, here. Lifelong effort and support. Really great to find others who are in same ...to know you are not alone. I wish and pray you wisdom and strenght , Dear Keri.
    So somewhere else I read about desease called "leaky gut". Something is missing from persons gut and the gut "wall" . It' s structure is thin or full of microsmall holes. Then bacteria and other molecules which should stay in the gut gets straight in blood. Heart ciculates blood all over the body up and to the brains. This causes low or severe inflammation in hole body and especially in brain. This causes then ADD symptoms. What do you think about this "leaky gut"theory? It is trated by vitamins and probiotic, I red. There is not found total cure, not yet. ..Then I read that natural pills made from Berberin ( origin from some berries?from trees or bushes, old Chinese natural medicin) can help recover this "leaky gut". I try search more information about Berberin. ( Sorry my english, not so fine, but I hope you understand what I mean. Ask anyway if you don't understand me, please)
    Then last autumn, just after one of the hottiest and sunniest summer in our life we mesured in lab Veera's D3vitamin level in her blood. It was only 50 ! After sunny summer! Somewhere else I find that it should be 125 -200 or something like that in ASD persons blood. I started to give her 100micrograms D3-vitamin/day. Also I find that B -vitamin formula called folic asid is harmfull in ASD.. You should instead take same B-vitamin but formula called methyfolate. I give her 400mg per day . Then C-vitamin at least 500milligrams/day. Magnesium is too important and there is often lack of Mg. 375Mg /d. All other B-vitamins are needeed. And I gave my daughter Multivimin too earlier, but because it includes folic acid I' m trying to find some other resource. Least and not las t I try to give her Calsium 500mg pills and brobiotic capsula called Lactobacillus acidophilus. Uh.. Because she doest't always like at all to take these. This is our protocolla this moment. Wish and pray you again more strenght and power in Jesus name.
    Tertit