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fencelatitude

6 yo w/Childhood Onset Bipolar Diagnosis

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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!

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Sounds a lot like my DD. Diagnosed with ASD, bipolar, ADHD, and severe colitis by age 6. Turns out she had underlying bacterial infections -- PANDAS, Lyme, Bartonella, MycoP, etc. Once we healed the gut and cleared the infections it eliminated the symptoms (violent rages, mood dysregulation, social/emotional/communication problems, tics, sleep and sensory problems, brain fog, joint problems, etc.). We treated with multiple abx, IVIg, IV glutathione, and many supplements -- psyche meds only made her worse. Then we had to figure out why she was so susceptible to so many infections -- she was catastrophically low on vitamin D, low on zinc (most likely KPU), and homozygous c677t MTHFR. So now we are treating her methylation problems to see if we can reduce or eliminate her susceptibility to infections. With the exception of anxiety/OCD, all symptoms are gone and so are ASD, bipolar, and ADHD diagnoses. PANDAS has been in remission for 2 years, Lyme/Bartonella/MycoP is under control. We're still working on the OCD -- I'm guessing due to high glutamate/low GABA.

 

Sounds like you need to do a complete immune workup and test for many different bacterial and viral infections. Best to work with a top PANDAS expert (Dr. B, T, L, or K) or work with a good integrative MD who knows PANDAS and will rule out other underlying infections. Or see a good LLMD who treats PANDAS. With the right doctor, extensive Lab work, and effective treatments you should be able to mitigate most (if not all) of the symptoms.

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Agree with Nancy. Think you're finally getting on the right track. My ds has gone through the list of diagnosis since childhood when a pronounced increase in severity post a strep throat clued us in to the pandas diagnosis and on the road to recovery. Remember only about 50% of kids even mount a response to strep (elevated titers) or the titers may have already dropped by the time tested, or there could be a completely different trigger - mycoplasma, mono, etc. Well worth forking over $$$s now to see a pandas expert, even if you have to travel, as you'll end up paying anyway with years of trying other stuff, not to mention the human toll on child and family!

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P.S. Also, FYI, my ds's tonsils and adenoids were infected upon culture post T & A even though looked small and normal prior! Another hidden source of infection.

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Sounds like my 6 year old too. I would suggest calling the nih ivig study. I am not sure he wil qualify for the study but it doesnt hurt to try. google pandas ivig study nih and it should come up

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Sounds like my now 8yo who was 5.5 when all this started. His first diagnosis was intermittent explosive disorder, then sensory processing disorder, then asperger's, then bipolar II, then PANDAS. All these diagnosis in a yr's time. Current dx is PANDAS and allergies. He's not on any psychiatric meds now. Was on Lamictal. We started out w/ 25mgs a day and worked up to 100mg a day. He stopped lamictal, finally after a long wean, in early Dec.

 

I recommend you get w/ a PANDAS expert and see what an he/she has to say.

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@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.

 

Sounds like my now 8yo who was 5.5 when all this started. His first diagnosis was intermittent explosive disorder, then sensory processing disorder, then asperger's, then bipolar II, then PANDAS. All these diagnosis in a yr's time. Current dx is PANDAS and allergies. He's not on any psychiatric meds now. Was on Lamictal. We started out w/ 25mgs a day and worked up to 100mg a day. He stopped lamictal, finally after a long wean, in early Dec.

I recommend you get w/ a PANDAS expert and see what an he/she has to say.

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Our daughter's tics, raging, social regression and emotional lability were caused by toxins produced by bartonella die-off. Her executive/cognitive function issues were caused by a babesia/protozon infection. I would suggest you test for both bartonella and the babesias.

Edited by rowingmom

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Wow, thanks for thinking about us. A lot has happened in three years. After IVIG twice and relapsing, I took my son to an LLMD 2.5 years ago. He has Lyme, ehrlichia, anaplasma and bartonella. Treatment has brought the healing we were looking for. He is still being treated with antibiotics and supplements. He is as normal as the next kid. He can get hyper and overstimulated by other hyper kids but no one would tell you he acted out of the ordinary for an 11 yo boy. He goes to middle school in a few weeks and he's going into the academically gifted program.

 

I urge you to find a good and reputable LLMD to do a thorough evaluation and testing of your son. Unless you see someone who truly knows and is qualified to diagnose Lyme and co infections, you will not get a proper evaluation for Lyme. Have you seen a PANDAS doctor?

 

After my experience with my son, I would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors.

 

I wish you the best in your search for answers and healing. Contact ILADS for recommendations for doctors in your region. I'll send you a pm.

Edited by nicklemama

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just want to second what nicklemama said, "would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors."

as you can see from many other posts on this forum, traditional psychiatric diagnosis and treatment don't hold water. Start your child on an anti-inflammatory regime, ibuprofen, fish oil, etc. long term abx, and see if there are changes.

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High CBD hemp oil has helped many. I would do a search on the forum and read up. This is the supplement that helps our DD most with her psychiatric symptoms. No THC in it, legal in every state. Antimicrobial as well.

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Sounds similiar to my ds in his worst moments. The current track im on leads me to notice that your ds was a soy baby, had acid reflux. Not familiar with feingold diet and noticed milk in his current diet. Milk intolerance can cause a kid to act in the ways you describe..and leaky gut which leads to many def that will derail the central nervous system..zinc, b vit, copper, ability to absrob lithium..it goes on and on. While pandas could be at play here..i have recently come into a healthy respect with regard to diet..

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I agree with seeing an integrative MD - preferably one who's Lyme-literate. We have an excellent one in Northern CA, and he's brought my son back to us by treating him for Lyme, Bartonella, Babesia, mold, chronic viruses, yeast, and methylation issues.

 

The psych med route doesn't seem to be helping your son recover, so maybe it's time to look in a different direction.

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