fencelatitude Posted March 12, 2012 Report Share Posted March 12, 2012 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! Link to comment Share on other sites More sharing options...
1tiredmama Posted March 13, 2012 Report Share Posted March 13, 2012 Hello. I just read your story. It is nearly 1 am and I'm exhausted, so I cannot reply as I would like right now. But, I did want to say that I have two children with Early Onset BP. They were each at their worst around age 7. Today they are 17 and 11 years old. The oldest also has TS and ADHD, among other dx's. So, I'm a seasoned veteran, if you will. I'll be back tomorrow, but before I go to bed, I want to say: 1. You are doing a terrific job (and, under the worst of conditions!) 2. It does get better. You may not believe it now, but it really will get better. 3. Rule out PANS. You have nothing to lose, but everything to gain, so get on it. 4. Don't beat yourself up over the need to medicate. He needs it right now so that he can function. Maybe, someday, he won't need it, but for now, he does. Question: When your ds is being aggressive, is it always fit/rage-related, or is he, at times, laughing while hitting...? One more thing: I LOVE Abilify! It put an end to some of my ds's most serious symptoms (hallucinations, violent/aggressive outbursts, paranoia.) He has been on for about 7 years (I think) with no side effects. It really helped turn things around. Maybe, it will be helpful for your boy, too. Oh, and, once he weans off of those meds you listed, what will be his first line mood stabilizer, and what will he be using for sleep? Link to comment Share on other sites More sharing options...
colleenrn Posted March 13, 2012 Report Share Posted March 13, 2012 Have you posted on the PANDAS forum? These behaviors and history can definitely be seen in children with PANDAS. How was PANDAS/PANS ruled out? Colleen Link to comment Share on other sites More sharing options...
1tiredmama Posted March 16, 2012 Report Share Posted March 16, 2012 I highly recommend the book The Explosive Child. It will help you weather the storm while you are in the process of finding stability. It is an easy read with very simple, practical strategies for avoiding melt-downs. Link to comment Share on other sites More sharing options...
fencelatitude Posted March 16, 2012 Author Report Share Posted March 16, 2012 When he was raging and hitting last year it was with a bizarre smile. Question: When your ds is being aggressive, is it always fit/rage-related, or is he, at times, laughing while hitting...? 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. One more thing: I LOVE Abilify! It put an end to some of my ds's most serious symptoms (hallucinations, violent/aggressive outbursts, paranoia.) He has been on for about 7 years (I think) with no side effects. It really helped turn things around. Maybe, it will be helpful for your boy, too. 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. Oh, and, once he weans off of those meds you listed, what will be his first line mood stabilizer, and what will he be using for sleep? Link to comment Share on other sites More sharing options...
fencelatitude Posted March 16, 2012 Author Report Share Posted March 16, 2012 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 Have you posted on the PANDAS forum? These behaviors and history can definitely be seen in children with PANDAS. How was PANDAS/PANS ruled out? Colleen Link to comment Share on other sites More sharing options...
guy123 Posted March 16, 2012 Report Share Posted March 16, 2012 Fencelatitidue, that was nicely presented information. 1tiredmama, glad Abilify is working for you. Just be aware that it can cause Tardive Dyskinesia. Link to comment Share on other sites More sharing options...
Chemar Posted March 16, 2012 Report Share Posted March 16, 2012 there are a variety of FDA warnings about Abilify as well Sheila cautioned about it here http://www.latitudes.org/forums/index.php?showtopic=1152&view=findpost&p=7486 There are also FDA warnings on it related to individuals who are susceptible to dementia/psychosis Link to comment Share on other sites More sharing options...
fencelatitude Posted March 16, 2012 Author Report Share Posted March 16, 2012 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. there are a variety of FDA warnings about Abilify as well Sheila cautioned about it here http://www.latitudes.org/forums/index.php?showtopic=1152&view=findpost&p=7486 There are also FDA warnings on it related to individuals who are susceptible to dementia/psychosis Link to comment Share on other sites More sharing options...
1tiredmama Posted March 17, 2012 Report Share Posted March 17, 2012 (edited) When he was raging and hitting last year it was with a bizarre smile. Sounds like these behaviors occurred while in a manic state. 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. Have you tried Melatonin? It is an OTC supplement. You can find it in the pharmacy. Consult your doctor for the appropriate dosage. A word of caution regarding The Amen Clinic. I considered it also; however, after researching their claims/tests, I had serious reservations about their validity. It would be an expensive risk. Do some research before you make your decision. If your ds's bloodwork comes back negative, keep testing. There are A LOT more (blood) tests that look for autoimmune disorders. Ask around on the PANDAS forum for a complete list. You don't want to rule it out based on incomplete results. Edited March 17, 2012 by 1tiredmama Link to comment Share on other sites More sharing options...
fencelatitude Posted March 17, 2012 Author Report Share Posted March 17, 2012 We did try a pretty big dose of Melatonin, it didn't help him. It was prescribed by the doctor. Have you tried Melatonin? It is an OTC supplement. You can find it in the pharmacy. Consult your doctor for the appropriate dosage. 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. A word of caution regarding The Amen Clinic. I considered it also; however, after researching their claims/tests, I had serious reservations about their validity. It would be an expensive risk. Do some research before you make your decision. If your ds's bloodwork comes back negative, keep testing. There are A LOT more (blood) tests that look for autoimmune disorders. Ask around on the PANDAS forum for a complete list. You don't want to rule it out based on incomplete results. Link to comment Share on other sites More sharing options...
Chemar Posted March 17, 2012 Report Share Posted March 17, 2012 just an FYI that big doses of melatonin can actually have a reverse effect on some people....my son could only take MICROgrams of it (around 300mcg) and the miligram doses recommended made his sleepless, restless and very edgy at night and then mega groggy by day Link to comment Share on other sites More sharing options...
fencelatitude Posted April 20, 2012 Author Report Share Posted April 20, 2012 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. just an FYI that big doses of melatonin can actually have a reverse effect on some people....my son could only take MICROgrams of it (around 300mcg) and the miligram doses recommended made his sleepless, restless and very edgy at night and then mega groggy by day Link to comment Share on other sites More sharing options...
colleenrn Posted April 20, 2012 Report Share Posted April 20, 2012 Have you ruled out Lyme disease or other tick borne illnesses? I was reading over your posts and a lot of the symptoms, especially the night sweats and agression can be caused by babesia. Maybe you could post your detailed history on the Lyme forum and get feedback. Colleen Link to comment Share on other sites More sharing options...
mom24 Posted April 22, 2012 Report Share Posted April 22, 2012 Wow, you are dealing with a lot. What you describe reminds me of a combination of my two boys. Both have Pandas---bedwetting in the evening...sometimes accidents during the day and the baby talk are two red flags that they are in exacerbation (oh and some tics too). Both are BIG mycoplasma kids (one is also affected by strep and allergies). The rage --reminds me of the other son who will spin out of control at the drop of a hat and can be completely irrational. He is can be very rigid also. Dr J told me that this is caused by the Bartonella and Lyme. I would try to have your Dr test for the following to start if you have not already: Myco plasma IGG and IGM ASO titer Western Blot (the boys both test negative on the regular Lyme test---thank goodness our Dr does the Western Blot anyway or else we never would have known they were sick) This is a great place to share your feelings since we are all going through/or have been through difficult times. Hang in there!! Link to comment Share on other sites More sharing options...
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