fencelatitude

How is your son doing?

@nicklemama How is your son doing? We are still struggling after 4 years with our psychiatrist. Everyone we talk to says he is the best in Atlanta. He now thinks my son is bipolar. We are still on a host of meds ( trileptal, abilify, amantadine, saphris, gabapentin ) and his tics are awful right now. They come and go and doctors say it's not anything like tardive dyskinesia. It is really hard to watch him blink, shake his head, pull up his shoulders ... and all the other tics that come and go. I am just really worried about my 9 year old boy. He is struggling so much. We ran this methylation pathway analysis recently: http://www.holisticheal.com/health-tests/nutrigenomic-testing which is from this site: http://www.dramyyasko.com/our-unique-approach/ It is just a very complex regimen to follow. Perhaps what I really need is an Integrative MD. Everything is just so crazy expensive ... I feel a bit lost at the moment.

My Son, now 7 has a long history detailed in this thread: "Tourettes + Bipolar diagnosis for 6 year old". In the last year we've been trying meds and are currently on a regimen of zyprexa, abilify and tenex. We are still having behavior issues and aggression and I feel that we need help trying to rule out some underlying issue. Does anyone have a suggestion for an Integrative MD / LLMD in or near Atlanta? Thank You Mark

His recent blood tests show all vitamin levels to be "normal". How did you determine that you needed b12? We plan to try gluten free. We are going to try herbs now that he's going off Intuniv. My brother is a physical therapist and has studied Chinese medicine/herbs. I also bought a fitbit and I plan to track his sleep as related to meds and supplements. BTW he's bouncing off the walls again .... not sure how to stop this in the interim. What do the abbreviations DS4 and DD8 mean?

We are in the process of getting a second opinion. Our Dr recommended adding Intuniv back since we've had 2 months of *constant* irritability. We started at night for 2 weeks of 1mg with no change. Dr decided that adding 1 mg in morning as well would help. He's now had trouble sleeping again and his behavior at school has been some of the worst all year. Previously we tracked that the intuniv ( without abilify ) helped him. We are unsure if it's the intuniv + abilify ( 5 mg 2x day ) being too high is the culprit here. My son is VERY sensitive to meds. I saw Kelly Dorfman speak recently via a group in Atlanta called Healthy Foundations: https://www.facebook.com/healthyfoundations Kelly wrote "What's eating your child, The hidden connection between food and childhood ailments", $10 e book: http://www.amazon.com/Whats-Eating-Your-Child-ebook/dp/B0051NHJEG/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1354367135&sr=1-1&keywords=what%27s+eating+your+child

We couldn't figure out what changed and why our son was so agitated after settling w/abilify. The Dr recommended upping his dose of melatonin from 900 mcg -> 5 MG. He was SO irritable on this dose. 2 days ago we went back to 900 mcg and he's been so much happier and pleasant during the day. Thanks so much for this information about melatonin! My brother recommended this product and we are going to try it: http://www.iherb.com/Hyland-s-Calms-Forte-4-Kids-125-Quick-Dissolving-Tablets/16882

No we have not. We pinned the night sweats down to the lamictal. High doses of lamictal drove him absolutely crazy. Thanks for the reply, I will check there too.

I posted this in the Tourette Syndrome forum and they suggested I post here. I have a 6 year old son that has a long history. Our family has been through a lot and it's been a very taxing few years. History During birth got distressed in birth canal ( high heart rate, etc ) during delivery, vacuum suctioned out and given antibiotics due to meconium A lot of reflux as a baby, eventually moved to soy milk Running at 11 months old Large complex vocabulary early Self potty trained at 2 VERY active, running and inability to stay calm in social situations Into everything and house had to be locked down via tot locks dismantled twin beds at 2, mattress had to be tied to box spring aggressive on playground had to be constantly monitored for hitting kids Kicked out of several pre-k schools for behavior Official Evaluation Originally diagnosed as intermittent explosive and oppositional defiant + Tourette's by well known Atlanta child developmental behaviorist Tested several grade levels higher via standard testing ( several evaluation yielded similar results ) Over ~2 year period diagnosis changed to childhood onset bipolar Large Decline ( Feb 2011 ) The aggression and behavior hit a peak about a year ago when we decided to sell our hose and moved into an apartment. Here is a summary of events: 2/09 started tenex 2/10 Stopped taking claritin ( had been on this for a year+ along with a nasal steroid for allergies ) 2/20 increased tenex 2/21 started packing to move 2/21 strep 2 allergic reactions to amoxicillin and z-pak, splotchy hands and feet at doctors office after one of the reactions was acting like he was going to pass out last, sulfur based antibiotic was tolerated 2/28 increased tenex kept out of school 1 week in feb 3/6 moved 3/9 backed off tenex 3/19 started chlonodine 3/28 off chlonodine 3/29 started trileptal last 4-6 weeks ( Feb & March 2011 ) have been very tough. Last 2 weeks basically have spiraled out of control with behavior. Here are a list of symptoms we came up with: "head rolling" - laying on the floor leaning over and rolling on his head very aggressive ( hitting, punching, kicking, hitting with back of head if held to restrain ) screaming / crying fits over EVERY decision ( have stopped since late last week ) hitting / throwing babytalk / gibberish animal names and noises ( quack / moo ) name calling ( stupid, etc ) vocal tics coughing wiping face with back of hands ( forehead, eyes, mouth, in that order ) ramming things with toys wasn't listening AT ALL last week punishments were causing screaming fits and never deterred behavior frequent urination, mostly at night ( some in daytime too ) last 4-5 days he gets VERY wild at bedtime. Hitting us in the face, kicking, punching, throwing. Nothing calms but a book or tv doctor recommended brother be sent to in-laws for safety We met with our doctor during all of this and due to the strep they ran the following tests that yielded no surprising results: Anti-strep tolysino Anti-dnase b strep antibody Liver, kidney, and complete metabolic For a while we thought maybe this was due to PANDAS. His symptoms did appear to drop off a cliff around when we moved. He has however always been very active and aggressive, just not aggressive towards us. We also met with a child psychologist and he witnesses some behavior saying he “appeared to be going in and out of reality”. What we have tried Cranial Sacral - 3 appointments Chinese medicine / herbalist - ~10 appointments Feingold Western medications Carlson's fish oil EEG MRI Western allergist Where we are today: 2012 October 2011 - started lamictal ( too high of a dose disrupted sleep and made him very agitated, crying a lot and night sweats) 2/13/2012 - added Abilify 2mg - resisted for many months to try lower order meds ( Also on Trileptal, Intuniv, Remeron ( for sleep ) and Lamictal - we are weaning of everything but Abilify & Lamictal ) 2/28/2012 - stopped Intuniv. It really helped with the ADHD type behavior, impulsivity and listening. We have weaned him off due to the Abilify and we’re back to a high degree of impulsivity and hyperactivity. 3/6/2012 - stopped Remeron ( for sleep ) 3/12/2012 2mg abilify morning / 4mg night. 2.5 ml trileptal 2x day. 10 mg lamictal morning & 5 mg night. Just today got a bad note from school 3/12/2012. He was doing things like crawling on the floor, making noises and not listening to directions. Weekend was difficult with a lot of redirection and lack of impulse control. Makes a lot of noises ( some animal ), pretends to punch himself in the face, hyperactivity. 4/20/2012 - *** Current meds: 2mg abilify morning / 4mg night. 2.5 ml trileptal 2x day. 15 mg lamictal morning - Abilify appears to be working quite well for him. He's much more compliant and agreeable and is even listening at school. This has lasted for several weeks, something we've not seen with any other medication. Our biggest challenges are: behavior - has been inconsistent over the years, varies by the week / day. We can have some good days, rearely weeks. We can even have good days. frequent aggression / impulsivity with peers screaming when he doesn't like complying with a request impulsiveness ( ex. opening valve on tea pot in restaurant and walking away, has done multiple times ) peers - has difficulty interacting and finding a way to engage in play. He can engage but does so inappropriately by bumping into them, acting silly to get attention ( slowly improving ). Better in one on one situations. sleep ( good sound sleep appears to result in a fantastic next day ) difficulty with tasks like dressing , cleaning up and homework - needs constant redirection dinner - climbs under table a lot and gets up frequently ( intuniv appeared to initially help ) frequent urination fingernail biting and picking lips until they bleed Diet - Some examples - we try to pick healthy foods Annie's natural cereal + organic milk Frequently eats annie's mac n cheese Eats lots of fruits and vegetables ( apples, oranges, beans, etc ) dinner: canned organic beans, corn and or rice, meat ( chicken, burger - grass fed beef, pork from farmer's mkt ) We try to buy most things still via the feingold diet to prevent him from ingesting preservatives and dyes. We aren't super strict however. I don’t want to paint him as 100% negative. We can let him run around with the neighbor’s kids and play. He just has to be monitored more than most 6 year old kids and more than his calm 3 ½ year old brother. He gets amped up very quickly and sometimes can’t ramp back down and get under control. Besides his challenges he’s also very smart, loves to draw, paint and is very into books. He is proactive about learning to read and write. He really has a thirst for knowledge. He will sit for hours and draw and can very intensely focus on a book or other materials. He notices very small details that peers do not. He has always been very inquisitive. He is a wonderful boy and many times very sweet and loving. Daily he comes up to us and tells us he loves us and kisses us. His teachers recognize that he's not "bad", he just has a very difficult time with self control. I would really like to find out what is behind all of this behavior. I have hope that if I dig hard enough I may be able to find the root cause. A year ago I would have never thought I would have to medicate him. We resisted for a very long time until things at home and school got to an unmanageable level. Thank you for reading this!

The abilify has really had a positive effect on him. He's much more compliant and pleasant lately. He's been cooperating at school as well. This has been going on for 3+ weeks now, something we've not seen with any other medication. Long term I want to figure out if I can get him off Abilify since I dont' know long term effects. I just don't know where to begin to find a doctor that can help with that.

We did try a pretty big dose of Melatonin, it didn't help him. It was prescribed by the doctor. Right, that was our big concern. I never know where to go on the net to get good objective feedback about a clinic like that. I'll post on the PANDAS forum.

I am aware of Tardive Dyskinesia and we have resisted this drug for a very long time. My number one concern is for the safety of my son. Our doctor has gone very slow on dosing and warned us of another condition with tongue movement that if not stopped right away could be permanent. My goal is to find some natural or other treatment to help him, if possible. Chemar if you or anyone else has a suggestion I would greatly appreciate it. My wife and I are trying to decide what to try next. I'm in the Atlanta area if anyone knows of a good doctor to help steer us in a more natural direction. A friend's father who is a psychiatrist mentioned The Amen Clinic. It's not cheap though, $4000 for the initial scans and evaluation.

I haven't posted to this forum yet. We took him to a great pediatrician and one that I consider to be very knowledgeable and actually takes time with patients to understand the problem. This of course doesn't mean he might have missed something. We mentioned PANDAS and he ran these tests: Anti-strep tolysino Anti-dnase b strep antibody Liver, kidney, and complete metabolic

When he was raging and hitting last year it was with a bizarre smile. We put him on Abilify to get him off the other 5 meds he was on. He seems to be doing pretty well but he still has quite a bit of impulsivity and hyperactivity. That's great it's worked so well for you! I understand how trying it can be when things are unstable. I don't know .... sleep has always been an issue for us. We didn't know that for years the Benadryl was masking this problem.

I have a 6 year old son that has a long history. Our family has been through a lot and it's been a very taxing few years. History During birth got distressed in birth canal ( high heart rate, etc ) during delivery, vacuum suctioned out and given antibiotics due to meconium A lot of reflux as a baby, eventually moved to soy milk Running at 11 months old Large complex vocabulary early Self potty trained at 2 VERY active, running and inability to stay calm in social situations Into everything and house had to be locked down via tot locks dismantled twin beds at 2, mattress had to be tied to box spring aggressive on playground had to be constantly monitored for hitting kids Kicked out of several pre-k schools for behavior Official Evaluation Originally diagnosed as intermittent explosive and oppositional defiant + Tourette's by well known Atlanta child developmental behaviorist Tested several grade levels higher via standard testing ( several evaluation yielded similar results ) Over ~2 year period diagnosis changed to childhood onset bipolar Large Decline ( Feb 2011 ) The aggression and behavior hit a peak about a year ago when we decided to sell our hose and moved into an apartment. Here is a summary of events: 2/09 started tenex 2/10 Stopped taking claritin ( had been on this for a year+ along with a nasal steroid for allergies ) 2/20 increased tenex 2/21 started packing to move 2/21 strep 2 allergic reactions to amoxicillin and z-pak, splotchy hands and feet at doctors office after one of the reactions was acting like he was going to pass out last, sulfur based antibiotic was tolerated 2/28 increased tenex kept out of school 1 week in feb 3/6 moved 3/9 backed off tenex 3/19 started chlonodine 3/28 off chlonodine 3/29 started trileptal last 4-6 weeks ( Feb & March 2011 ) have been very tough. Last 2 weeks basically have spiraled out of control with behavior. Here are a list of symptoms we came up with: "head rolling" - laying on the floor leaning over and rolling on his head very aggressive ( hitting, punching, kicking, hitting with back of head if held to restrain ) screaming / crying fits over EVERY decision ( have stopped since late last week ) hitting / throwing babytalk / gibberish animal names and noises ( quack / moo ) name calling ( stupid, etc ) vocal tics coughing wiping face with back of hands ( forehead, eyes, mouth, in that order ) ramming things with toys wasn't listening AT ALL last week punishments were causing screaming fits and never deterred behavior frequent urination, mostly at night ( some in daytime too ) last 4-5 days he gets VERY wild at bedtime. Hitting us in the face, kicking, punching, throwing. Nothing calms but a book or tv doctor recommended brother be sent to in-laws for safety We met with our doctor during all of this and due to the strep they ran the following tests that yielded no surprising results: Anti-strep tolysino Anti-dnase b strep antibody Liver, kidney, and complete metabolic For a while we thought maybe this was due to PANDAS. His symptoms did appear to drop off a cliff around when we moved. He has however always been very active and aggressive, just not aggressive towards us. We also met with a child psychologist and he witnesses some behavior saying he “appeared to be going in and out of reality”. What we have tried Cranial Sacral - 3 appointments Chinese medicine / herbalist - ~10 appointments Feingold Western medications Carlson's fish oil EEG MRI Western allergist Where we are today: 2012 October 2011 - started lamictal ( too high of a dose disrupted sleep and made him very agitated, crying a lot and night sweats) 2/13/2012 - added Abilify 2mg - resisted for many months to try lower order meds ( Also on Trileptal, Intuniv, Remeron ( for sleep ) and Lamictal - we are weaning of everything but Abilify & Lamictal ) 2/28/2012 - stopped Intuniv. It really helped with the ADHD type behavior, impulsivity and listening. We have weaned him off due to the Abilify and we’re back to a high degree of impulsivity and hyperactivity. 3/6/2012 - stopped Remeron ( for sleep ) 3/12/2012 *** Current MEDS: - 2mg abilify morning / 4mg night. 2.5 ml trileptal 2x day. 10 mg lamictal morning & 5 mg night. Just today got a bad note from school 3/12/2012. He was doing things like crawling on the floor, making noises and not listening to directions. Weekend was difficult with a lot of redirection and lack of impulse control. Makes a lot of noises ( some animal ), pretends to punch himself in the face, hyperactivity. Our biggest challenges are: behavior - has been inconsistent over the years, varies by the week / day. We can have some good days, rearely weeks. We can even have good days. frequent aggression / impulsivity with peers screaming when he doesn't like complying with a request impulsiveness ( ex. opening valve on tea pot in restaurant and walking away, has done multiple times ) peers - has difficulty interacting and finding a way to engage in play. He can engage but does so inappropriately by bumping into them, acting silly to get attention ( slowly improving ). Better in one on one situations. sleep ( good sound sleep appears to result in a fantastic next day ) difficulty with tasks like dressing , cleaning up and homework - needs constant redirection dinner - climbs under table a lot and gets up frequently ( intuniv appeared to initially help ) frequent urination fingernail biting and picking lips until they bleed Diet - Some examples - we try to pick healthy foods Annie's natural cereal + organic milk Frequently eats annie's mac n cheese Eats lots of fruits and vegetables ( apples, oranges, beans, etc ) dinner: canned organic beans, corn and or rice, meat ( chicken, burger - grass fed beef, pork from farmer's mkt ) We try to buy most things still via the feingold diet to prevent him from ingesting preservatives and dyes. We aren't super strict however. I don’t want to paint him as 100% negative. We can let him run around with the neighbor’s kids and play. He just has to be monitored more than most 6 year old kids and more than his calm 3 ½ year old brother. He gets amped up very quickly and sometimes can’t ramp back down and get under control. Besides his challenges he’s also very smart, loves to draw, paint and is very into books. He is proactive about learning to read and write. He really has a thirst for knowledge. He will sit for hours and draw and can very intensely focus on a book or other materials. He notices very small details that peers do not. He has always been very inquisitive. He is a wonderful boy and many times very sweet and loving. Daily he comes up to us and tells us he loves us and kisses us. His teachers recognize that he's not "bad", he just has a very difficult time with self control. I would really like to find out what is behind all of this behavior. I have hope that if I dig hard enough I may be able to find the root cause. A year ago I would have never thought I would have to medicate him. We resisted for a very long time until things at home and school got to an unmanageable level. Thank you for reading this!

I talked with a colleague recently that's done medical research in the past. I explained my child's symptoms that seem very similar to PANDAS and he mentioned this site: "Dr Aditi Shankardass is a clinical neuroscientist, and an expert in the use of a pioneering EEG-based technology to investigate the underlying neurophysiological abnormalities in children with autism and other developmental disorders." http://sites.google.com/site/aditishankardass/ I thought people on this forum would find it interesting. There is even a TED talk by her. Mark

What multivitamin are you using?

This couldn't have come at a more appropriate time for my family. Our son has a *long* history of impulsivity that lately has been spiraling out of control. Our *very* well known behaviorist in Atlanta also told us recently that our son "may have tourette symdrome". I guessed this myself by some of his strange behaviors like saying "quack" in response to being disciplined along with his long standing vocal tic. Just yesterday I asked if he could have a diet related issue and I could hear the disgust in his voice as he basically said "there is no scientific link". They've tried tenex, chlonidine and now he just started on trileptal. I'm trying to convince my wife to go the homeopathic route with diet modification.