scbusf Posted April 25, 2019 Share Posted April 25, 2019 DD is just about to turn 9. Background info: Adopted from China at 18 months. Cleft Lip and Palate. Diagnosed with ADHD-Combined Type and borderline Auditory Processing Disorder. Oh, and also Anxiety, which she is medicated for and seems to help some. She sees a play therapist and a Psychiatrist. We tried 4 different ADHD meds and none of them worked. Either turned her into a zombie on the lowest dose, or had no effect on her even with increasing dosages. We are still doing some evaluations to see if there is anything else going on .... Her biggest issues are extremely low frustration tolerance, which leads to lots of screaming fits - her anxiety med does seem to help some with this. Also, sitting still and focusing don't happen. I suspect that she does, in fact, have ADHD and that the meds just don't work for her. We have also tried: TONS of exercise. Doesn't matter. Having her eat dye-free and no artificial flavors. Doesn't make a difference. What else could I try? 1 Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted April 25, 2019 Share Posted April 25, 2019 1. Fish oil is often recommended, at pretty high doses. 2. You might consider a low dosage of caffeine, either in the form of a cup of coffee every day or a time-released caffeine pill. 3. What's the home environment like? More structure, less clutter is bound to help, or at least won't do any harm. 1 Quote Link to comment Share on other sites More sharing options...
Susan in TX Posted April 25, 2019 Share Posted April 25, 2019 Since you mentioned that eating dye-free and no artificial flavors helps, you may want to try removing other things from her diet that could affect her behavior. One ingredient that affects my son even more than artificial colors is annatto. It is a yellow food coloring that is natural and it is in a lot of things. I am continually surprised by the foods I find this ingredient in. I think it is very rare for people to have a sensitivity to this ingredient but my son definitely does. The other thing would be artificial preservatives. There are also supplements you can try. Magnesium helps my son. And melatonin helps him with his sleep which also helps his behavior. Susan in TX 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted April 25, 2019 Share Posted April 25, 2019 Did you try both stimulant and non stimulant, and long and shorter acting, from both types of stimulant drugs? Just asking because sometimes people say they tried a lot of meds, and they did, but all from one particular class of medication. Also, how long was she on the ones that made her "a zombie" ? It takes about 1-2 weeks for the body to adjust to the higher levels of brain chemicals, at least it did for me. I felt pretty darned high, honestly, the first several days. And I yawned constantly, had a headache, and wanted a nap like nobody's business. 2 weeks later and that was not the case at all. I've been on meds a year now and am so glad. 3 1 Quote Link to comment Share on other sites More sharing options...
scbusf Posted April 25, 2019 Author Share Posted April 25, 2019 15 minutes ago, Ktgrok said: Did you try both stimulant and non stimulant, and long and shorter acting, from both types of stimulant drugs? Just asking because sometimes people say they tried a lot of meds, and they did, but all from one particular class of medication. Also, how long was she on the ones that made her "a zombie" ? It takes about 1-2 weeks for the body to adjust to the higher levels of brain chemicals, at least it did for me. I felt pretty darned high, honestly, the first several days. And I yawned constantly, had a headache, and wanted a nap like nobody's business. 2 weeks later and that was not the case at all. I've been on meds a year now and am so glad. It's been a while, so I can't remember the details. But we did try several different types. We were somewhat limited because of our insurance - some meds were $500 a month!!! She was very closely monitored by the Psychiatrist and I do remember discussing the side effects and the time it could take to get used to the meds. 1 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted April 25, 2019 Share Posted April 25, 2019 31 minutes ago, scbusf said: DD is just about to turn 9. Background info: Adopted from China at 18 months. Cleft Lip and Palate. Diagnosed with ADHD-Combined Type and borderline Auditory Processing Disorder. Oh, and also Anxiety, which she is medicated for and seems to help some. She sees a play therapist and a Psychiatrist. We tried 4 different ADHD meds and none of them worked. Either turned her into a zombie on the lowest dose, or had no effect on her even with increasing dosages. We are still doing some evaluations to see if there is anything else going on .... Her biggest issues are extremely low frustration tolerance, which leads to lots of screaming fits - her anxiety med does seem to help some with this. Also, sitting still and focusing don't happen. I suspect that she does, in fact, have ADHD and that the meds just don't work for her. We have also tried: TONS of exercise. Doesn't matter. Having her eat dye-free and no artificial flavors. Doesn't make a difference. What else could I try? If by any chance you suspect that your daughter's caretakers before 18 months were not too attentive, that could have had an effect on her developing nervous system. The physiological effects of trauma/neglect don't disappear with time. The individuals tend to remain in a hypervigilant state because physiological parts of their senses change, and as a result, voices sound more threatening, people appear more threatening, etc. Their nervous system tends to respond as if they are in danger. They don't easily get into a relaxed, "I'm safe" state. This makes behaving well and learning difficult. Have her therapists tried or mentioned the Safe and Sound Protocol developed by Stephen Porges? The individual listens to music that has certain tones for an hour per day for a number of days. The tones tighten muscles in the ear. Voices then sound normal which cues their nervous system helping it to recognize there is no danger. They recommend using it along with other therapies. I think this lady on YouTube does a good job explaining what it is and how it works. 1 Quote Link to comment Share on other sites More sharing options...
scbusf Posted April 25, 2019 Author Share Posted April 25, 2019 56 minutes ago, BeachGal said: If by any chance you suspect that your daughter's caretakers before 18 months were not too attentive, that could have had an effect on her developing nervous system. The physiological effects of trauma/neglect don't disappear with time. The individuals tend to remain in a hypervigilant state because physiological parts of their senses change, and as a result, voices sound more threatening, people appear more threatening, etc. Their nervous system tends to respond as if they are in danger. They don't easily get into a relaxed, "I'm safe" state. This makes behaving well and learning difficult. Have her therapists tried or mentioned the Safe and Sound Protocol developed by Stephen Porges? The individual listens to music that has certain tones for an hour per day for a number of days. The tones tighten muscles in the ear. Voices then sound normal which cues their nervous system helping it to recognize there is no danger. They recommend using it along with other therapies. I think this lady on YouTube does a good job explaining what it is and how it works. I will definitely look into this. I know for a fact that my older daughter was abused in her orphanage in China. She definitely exhibits anxiety, which manifests as needing to control her surroundings. The almost 9 year old - it wouldn't shock me, but I'm not really sure. Thank you for the information! 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted April 25, 2019 Share Posted April 25, 2019 Also, things like Celiac disease, chronic allergies, anemia, and thyroid issues can all cause neurological and psychological symptoms, so if you haven't ruled out all those things I'd look into it, especially if she didn't respond to ADHD meds as expected. Could be the distractibility and poor emotional control are symptoms of something else entirely, in which case ADHD meds won't help. And of course, anxiety can cause brain fog and ADHD type symptoms. (and ADHD can cause anxiety....sticky wicket) 1 Quote Link to comment Share on other sites More sharing options...
Suzanne in ABQ Posted April 28, 2019 Share Posted April 28, 2019 Have you heard of Dianne Craft? Check out her website to see if your daughter's behaviors and challenges align with her descriptions of the people she can help. Did your dd need extended courses or high doses of antibiotics at any time? If so, then pay particular attention to the Biology of Behavior information (excellent source information for the fish oil, probiotic, and other supplements -- how and why they work, how to use them). There are exercises that help with auditory processing disorder, and others that help with visual glitches and problems associated with gaps caused by a lack of cross-lateral development early in life. I followed her program with my son for six months when he was 11yo. I wish I had learned about it all earlier, but I'm still SO glad we did the program. It made a huge difference in his ability to sit, concentrate, learn, and retain. diannecraft.org 3 Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted April 28, 2019 Share Posted April 28, 2019 Assuming ADHD is the actual or a primary issue, I agree with structure, structure, structure. Not necessarily a timed, rigid schedule (though that does work for some) but predictable routines and habit building. I did not do well on ADHD meds. Well, I technically did, but couldn’t take the side effects at the dosages that were effective for me. I had to impose some real structure in my life, which has taken what feels like forever (about a dozen years since being dx’ed at 30), probably because I went through changes like adapting to having 4 kids, beginning to homeschool, having a 5th kid, activities changing as they grew, etc... I grew up thinking that structure was the enemy. Now I realize how useful it could have been to me if I had known how to do it! I do not handle changes or vague plans well at all. I live by lists and planners. I have a morning routine and an evening routine. I have a laundry system, a cleaning schedule, blah, blah, blah. What I can’t do (though I’ve tried) is live with a strictly timed schedule. “Lunch, then Science” is fine. “Lunch at 12:00, Science at 12:30” is not (for me.). Unexpected deviations from my plans trigger my anxiety (to varying degrees, depending on the actual disruption) and then exhaust me (also to varying degrees, depending on the cause.) I do have a teenage daughter with unmediated ADHD. She has been very much rebelling against structure, and I wish I had worked on that with her sooner. (Hard to when I was struggling myself!) But she’s beginning to come around. 2 Quote Link to comment Share on other sites More sharing options...
Pen Posted April 28, 2019 Share Posted April 28, 2019 (edited) On 4/25/2019 at 11:14 AM, scbusf said: It's been a while, so I can't remember the details. But we did try several different types. We were somewhat limited because of our insurance - some meds were $500 a month!!! She was very closely monitored by the Psychiatrist and I do remember discussing the side effects and the time it could take to get used to the meds. Yes. But I think in generic form there are a number of choices less $, often a lot less than that. possibly ones that turned her into zombie could be reduced below lowest dose by half or quarter tablet split? Then there are a lot of herbal , vitamin, etc type things that might possibly give some help. meditation techniques cbt ... have read things like ADDitude magazine for ideas? Hallowell books like Delivered from Distraction Edited April 28, 2019 by Pen Quote Link to comment Share on other sites More sharing options...
Pen Posted April 29, 2019 Share Posted April 29, 2019 (edited) How to tell if ADHD medication is working - Medical News Today May 23, 2018 · Here, learn how to tell whether ADHD medication is working, when to change it, ... When symptoms of ADHD start to ease, it is often not obvious. How to tell if it's working Side effects When to change medication ADHD Medication Problems You Can Fix Problem: ADHD Medication Doesn't Work. When starting medication, some adults and parents claim that there is no improvement. The most common reason for this lack of response is an incorrect ADHD diagnosis. ... In some cases, the ADHD diagnosis may be correct, but the prescribed dosage may be incorrect. https://www.additudemag.com/adhd-medications-rarely-work-perfectly-on-the-first-try/ Edited April 29, 2019 by Pen Quote Link to comment Share on other sites More sharing options...
scbusf Posted April 30, 2019 Author Share Posted April 30, 2019 On 4/28/2019 at 6:17 PM, Pen said: Yes. But I think in generic form there are a number of choices less $, often a lot less than that. possibly ones that turned her into zombie could be reduced below lowest dose by half or quarter tablet split? Then there are a lot of herbal , vitamin, etc type things that might possibly give some help. meditation techniques cbt ... have read things like ADDitude magazine for ideas? Hallowell books like Delivered from Distraction Yes, we tried generics of every type that our insurance covered. Also, the dosages we tried were half or less of the lowest dose available. It’s a tricky thing!!! I have questioned the diagnosis - we are currently doing more evaluations to see if there is something else we’ve missed along the way. 1 Quote Link to comment Share on other sites More sharing options...
Pen Posted April 30, 2019 Share Posted April 30, 2019 57 minutes ago, scbusf said: Yes, we tried generics of every type that our insurance covered. Also, the dosages we tried were half or less of the lowest dose available. It’s a tricky thing!!! I have questioned the diagnosis - we are currently doing more evaluations to see if there is something else we’ve missed along the way. Yes. Very tricky. I hope you’ll get better answers with added evaluations. The following link , especially if you look at the things mentioned in reader comments not just the main article, has lots of ADHD alternative treatments (and far more than that exist)— but if your dd hasn’t got ADHD at all none of that may help. Unless they happen to also by chance be a good fit for helping whatever she does have. https://www.additudemag.com/treatment/vitamins-and-supplements/ Quote Link to comment Share on other sites More sharing options...
Borstahusen Posted April 30, 2019 Share Posted April 30, 2019 Is she seeing an adoption trained therapist, specializing in trauma? Many times adoption-attachment-CPTSD issues look like ADHD but don’t respond to medication. We spent 5+ years in therapy with an adoption trained therapist and used Bette Lamont for specialized neurodevelopment exercises that really made a difference. We saw improvement in reading and school, in general, along with a calmer, more focused daughter. There are many good resources available but you may need to travel, depending on where you are. 1 Quote Link to comment Share on other sites More sharing options...
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