Post by Mishamom on Jul 20, 2004 23:06:07 GMT -5
We just got back from my daughter's followup visit with a new specialist we've been seeing since April. Our daughter just turned 6 this past week. Since she was three we've been chasing diagnosis and treatments that work. We've run the gamut from autism, severed ADHD and Sensory Integration Dysfunction.
Anybody looking at her can see how hyper she is. However, she also had a host of other issues that everyone dismissed as not being their specialty and assumed she would outgrow. We never really felt comfortable for that. She had problems with hypersensitivity with noise, touch, taste, poor gross and fine motor skills, speech delays, trouble dressing herself well, using eating utensils, writing and scissors.
She's gone to speech therapy for two years now with great improvement. She started occupational therapy to help her with motor skills almost a year ago with good progress. The OTR evaluated her and diagnosed Sensory Integration Dysfunction which is frequently misdiagnosed as ADD/ADHD as well as frequently overlooked as being present along with ADD/ADHD. We felt this diagnose helped to explain a lot of her sensory and motor issues.
Earlier this year we found a neurosensory specialist that has had great success with children with autism spectrum disorders (which includes autism, aspbergers, add, adhd, SID, pdd-nso, etc.). I interviewed 8 sets of local parents whose children went through the testing and treatment and all had very positive results. The children's disorders ranged from autism, ADHD and SID.
His treatment is unorthodox but made sense. He feels that these spectrum disorders originate from interruption and/or damage to the development of the myelin sheath coating of the nerves. Think of it as teflon. The quality and quantity of this coating determines the quality, speed and overall ability of the brain to receive and send out sensory input and response. Several things can cause this damage. Heavy metal poisoning (vaccine, environmental, genetic predisposition), herpes virus and auto-immune/auto-inflammatory disorders. Once it's determined what caused the damage it can be treated, corrected and the brain reoriented to its 'normal' ability to function.
This is the first doctor that did a very thorough medical history on Emily and our family. We did blood work to rule out other medical diseases that can cause similar neurological symptoms (thyroid, inner ear, etc.) and sensory testing that tested hearing, balance, vision, both 2-D and 3-D.
Emily has very little 3-D vision which helps to explain why she has to get up and hold and touch everything. Her left and right inner ears gave the brain differing input. For example, her right side says she's in one place in the room and the left says another - hence the poor balance and coordination.
The bloodwork showed that she was very healthy except that she has moderately high heavy metal levels. Heavy metal poisoning causes the same neurological symptoms as autism, adhd, etc. Also, Emily was exposes to high herpes viral loads while I was pregnant with her. I had significant health problems as a result. When she was 1 she received a chicken pox vaccine (another form of the herpes virus) which is when the motor problems became VERY apparent. Herpes lives in the myelin coating of nerves which is why our immune system and medications cannot kill it. If you attack your nervous system you've got bigger problems than the virus!
Since April she has been taking Valtrex 500 mg twice a day. She continues to take the Strattera at 18 mg as that dose has worked best for her. Medical studies are also showing that Strattera speeds up children with speech delays ability to progress.
When we started the new treatment plan he said it would probably take 9-18 months to have her medication free and to where her 'normal' should be. We went back for a three month checkup and repeated all of the sensory testing and she's 3-6 months ahead of schedule. Her balance is very significantly improved. Her left and right ears are still giving results that are out of the normal range but they are in alignment with each other. They are also closer to the normal ranges than previous.
Current plan is to continue Valtrex until Oct 1st. She will continue the Strattera until January 1st. Starting this week she will be on Zinc 50 mg and Glutathialine (sp?) 100 mg to assist with clearing her system of the metals. She is particularly high in tin and aluminum because of our geographic area. Interesting enough I had water studies done locally to be able to compare with her lab results to verify and they were complimentary. Zinc and the glutathialine are minerals the body uses to make Mesothyalline (again sp?). Our bodies make Mesothyalline to bind with and clear out metals from out bodies much like we make white blood cells to deal with infection. She also will be on PCS-RX which is an oral spray used for chelation (process of clearing heavy metals).
We plan to retest for heavy metals in December and in January retest to determine what levels her body is creating its own Mesothyalline. If that goes well then longterm she will only need good vitamin intake with care to watch the minerals.
Since she started her verbal skills have progressed faster than ever before. She is no longer afraid of flushing toilets, thunder, planes and trains. She is writing, using scissors, manipulating zippers, buttons and hooks. She eats with with utensils, now swims (that took 1 day to learn) and can now ride a bike unassisted. Not bad for a kid that three months ago couldn't make it through the living room without falling down.
Her hyperactivity has calmed noticeably. With a small reminder or touch she calms herself and focus'. She is socializing with friends better, waits her turn and has even discovered how to be considerate (she used to be oblivious..not mean...just oblivious). She's sleeping much better and is beginning to write with little prompting.
She's such a different girl than three months ago. We couldn't be happier. It's hard to believe that something so small, so simple and so treatable is looking like the solution for her. I know it seems hard to believe and doesn't make sense to some but I've found so many children that have made great strides in skills, academics, behavior and are doing so medication free for the first time ever.
Sorry for the long post but I just had to say something about what was working for us. I'm sure it wouldn't be a fit for everyone but it's always worth considering new options and new ideas. When we started this we were relieved just to have the ability to sensory testing and lab work to prove a diagnosis. Even if the treatment didn't work we considered it a chance to prove what didn't work and move on.
Yeah for Emily!!!!! By this time next year she hopefully will be on no medications and need no interventions in school.
Anybody looking at her can see how hyper she is. However, she also had a host of other issues that everyone dismissed as not being their specialty and assumed she would outgrow. We never really felt comfortable for that. She had problems with hypersensitivity with noise, touch, taste, poor gross and fine motor skills, speech delays, trouble dressing herself well, using eating utensils, writing and scissors.
She's gone to speech therapy for two years now with great improvement. She started occupational therapy to help her with motor skills almost a year ago with good progress. The OTR evaluated her and diagnosed Sensory Integration Dysfunction which is frequently misdiagnosed as ADD/ADHD as well as frequently overlooked as being present along with ADD/ADHD. We felt this diagnose helped to explain a lot of her sensory and motor issues.
Earlier this year we found a neurosensory specialist that has had great success with children with autism spectrum disorders (which includes autism, aspbergers, add, adhd, SID, pdd-nso, etc.). I interviewed 8 sets of local parents whose children went through the testing and treatment and all had very positive results. The children's disorders ranged from autism, ADHD and SID.
His treatment is unorthodox but made sense. He feels that these spectrum disorders originate from interruption and/or damage to the development of the myelin sheath coating of the nerves. Think of it as teflon. The quality and quantity of this coating determines the quality, speed and overall ability of the brain to receive and send out sensory input and response. Several things can cause this damage. Heavy metal poisoning (vaccine, environmental, genetic predisposition), herpes virus and auto-immune/auto-inflammatory disorders. Once it's determined what caused the damage it can be treated, corrected and the brain reoriented to its 'normal' ability to function.
This is the first doctor that did a very thorough medical history on Emily and our family. We did blood work to rule out other medical diseases that can cause similar neurological symptoms (thyroid, inner ear, etc.) and sensory testing that tested hearing, balance, vision, both 2-D and 3-D.
Emily has very little 3-D vision which helps to explain why she has to get up and hold and touch everything. Her left and right inner ears gave the brain differing input. For example, her right side says she's in one place in the room and the left says another - hence the poor balance and coordination.
The bloodwork showed that she was very healthy except that she has moderately high heavy metal levels. Heavy metal poisoning causes the same neurological symptoms as autism, adhd, etc. Also, Emily was exposes to high herpes viral loads while I was pregnant with her. I had significant health problems as a result. When she was 1 she received a chicken pox vaccine (another form of the herpes virus) which is when the motor problems became VERY apparent. Herpes lives in the myelin coating of nerves which is why our immune system and medications cannot kill it. If you attack your nervous system you've got bigger problems than the virus!
Since April she has been taking Valtrex 500 mg twice a day. She continues to take the Strattera at 18 mg as that dose has worked best for her. Medical studies are also showing that Strattera speeds up children with speech delays ability to progress.
When we started the new treatment plan he said it would probably take 9-18 months to have her medication free and to where her 'normal' should be. We went back for a three month checkup and repeated all of the sensory testing and she's 3-6 months ahead of schedule. Her balance is very significantly improved. Her left and right ears are still giving results that are out of the normal range but they are in alignment with each other. They are also closer to the normal ranges than previous.
Current plan is to continue Valtrex until Oct 1st. She will continue the Strattera until January 1st. Starting this week she will be on Zinc 50 mg and Glutathialine (sp?) 100 mg to assist with clearing her system of the metals. She is particularly high in tin and aluminum because of our geographic area. Interesting enough I had water studies done locally to be able to compare with her lab results to verify and they were complimentary. Zinc and the glutathialine are minerals the body uses to make Mesothyalline (again sp?). Our bodies make Mesothyalline to bind with and clear out metals from out bodies much like we make white blood cells to deal with infection. She also will be on PCS-RX which is an oral spray used for chelation (process of clearing heavy metals).
We plan to retest for heavy metals in December and in January retest to determine what levels her body is creating its own Mesothyalline. If that goes well then longterm she will only need good vitamin intake with care to watch the minerals.
Since she started her verbal skills have progressed faster than ever before. She is no longer afraid of flushing toilets, thunder, planes and trains. She is writing, using scissors, manipulating zippers, buttons and hooks. She eats with with utensils, now swims (that took 1 day to learn) and can now ride a bike unassisted. Not bad for a kid that three months ago couldn't make it through the living room without falling down.
Her hyperactivity has calmed noticeably. With a small reminder or touch she calms herself and focus'. She is socializing with friends better, waits her turn and has even discovered how to be considerate (she used to be oblivious..not mean...just oblivious). She's sleeping much better and is beginning to write with little prompting.
She's such a different girl than three months ago. We couldn't be happier. It's hard to believe that something so small, so simple and so treatable is looking like the solution for her. I know it seems hard to believe and doesn't make sense to some but I've found so many children that have made great strides in skills, academics, behavior and are doing so medication free for the first time ever.
Sorry for the long post but I just had to say something about what was working for us. I'm sure it wouldn't be a fit for everyone but it's always worth considering new options and new ideas. When we started this we were relieved just to have the ability to sensory testing and lab work to prove a diagnosis. Even if the treatment didn't work we considered it a chance to prove what didn't work and move on.
Yeah for Emily!!!!! By this time next year she hopefully will be on no medications and need no interventions in school.
