Wednesday, June 24, 2015

My Latest Rant... I mean, Blog

Yesterday, at the near end of our ABA session at home with our BI and supervisor, we commented on how much improvements Luki has been making this past month.  For the first time, we discovered  Luki can independently place his feet on the pedal without requiring me to tie them with a bungee cord.  See the video below:

We were all surprised at how fast he has been able to achieve this new milestone as we have been doing bicycle training for less than two months now.  I thought it would at least take a year for him to be able to do this task.  But, not just in terms of riding the bicycle, he definitely seems more attentive to the icon exchange and makes great eye contact with his therapist.  For some reason, he would stare deeply into her eyes for minutes then burst into giggles and laughter.  There is something about this particular therapist that has piqued Luki's interest. This has not happened with other therapists in the past.

I nonchalantly commented to the supervisor, let's call him J here, that perhaps it is the new Charlotte's Web hemp oil I have been supplementing which may be contributing to his increased awareness and cognition.  Immediately, as his eyes widened, he wanted to know more and so I showed him the bottle and he asked to take a picture of it to show his supervisor and warned me that he will need to report me (forgot what government department it was, child protective services??) as this is a controlled substance with some THC in it.  A couple of months ago, I had shared with him that I was contemplating supplementing endocannabinoid oils for brain development and also possibly adding hippotherapy into Luki's curriculum in the summer.  All he stated at the time was that neither of these were evidence based and therefore had no significant proven efficacy nor actually have any clinical benefits.  He had never mentioned to me at that time that if I were to start the hemp supplement he would need to report me to his supervisor and to some asinine government department which purports to protect children.  Had he mentioned this then, I would have used more discretion in sharing this information with him, would have had second thoughts in starting the treatment and would have sought further information into the implications of using hemp products, especially for minors, in medical need.

I am feeling back stabbed and furious that he did not counsel me as such beforehand and now under the pretense of looking out for the best welfare of my son wants to see if there are any punitive measures to reprimand me for using hemp. I asked him what the repercussions of using this would be if the law deemed it illegal and he told me he had no idea.  Really?  What if it were that the parent goes to jail, gets a felony conviction for using a controlled substance hence making their chance of employment difficult and also have the child taken away under state's "protection"?  How would he feel if that were the repercussions?  I have lost all trust in this supervisor who has worked with us for almost a year now.  He just doesn't get it and it doesn't feel like he is on our team.  I need someone who is more sympathetic to our plight and willing to look into Luki and our family's best interest, not the interest of his job, Easter Seals and other institutions.  Does he really think I am intending to have my 4 year old smoke marajuana to get him high? He should know us better than that by now! Is he coming into my home to do surveillance on whether Luki is being abused, neglected, or is he coming into my home to ensure Luki learns ABA techniques to function and communicate better? Granted, he may be obligated to report such incidences according to the law. And, he is, afterall, just doing his job. But, so were SS soldiers who put innocent Jews into burning ovens during WW II in Nazi Germany. A more conscientious person would counsel better beforehand and inform us of their obligation to inform authorities and the repercussions that may follow rather than too happily stating that he "must report this" and when asked about the ensuring repercussions flatly state, "I don't know" (I thought I heard his internal thoughts saying "not my problem, I don't care"). Maybe I'm reading too much into this situation.

 For a while, I have felt J throws techniques and fancy ABA jargon around but is not really listening to me as if he always needs to have the last word.  Why hadn't he told me beforehand?  Right now he just seems like a jerk and and I am really working hard to control myself from speaking to his supervisor.  What stops me is I don't want to make this issue any bigger than it needs to be considering what a controversial issue it already is in the rest of the county.  Just look at what happened to this dispensary by the police and their flagrant disregard for the disabled woman in it.

Marijuana Dispensary Suing Mayor After Cops Raid Shop And Eat Edibles

 Yet, on another hand, I wonder if I am just being over sensitive and over reacting. My intuition is giving me mixed messages and I am stumped on how to proceed with this issue.  Better to wait until my temper cools to make any major changes.

Recently, in an expose, Former LA County Social Worker Reveals Corruption in Child “Protection” Services, a social worker from the Department of Children Services of Los Angeles revealed the corrupt nature of the department and how the best interest of the child takes last precedence over financial gain made by the department by placing children in adoptive services instead of trying to remediate the parents so that they can regain custody of their own children.  It is also common for the department to receive more federal money if children get medicated on psychiatric drugs and an alarming majority of children in foster care are on some type of psychiatric drugs.  A few years back, a 7 year old boy with homosexual tendencies was bludgeoned to death by his mother and her boyfriend and the social workers were negligent in protecting him.  And yet, a loving mother who out of desperation administers endocannabinoid oils for her sick child, whom allopathic medicine can no longer treat, gets sent to jail and her child taken into "protective" state custody.  In light of this expose, I am panicked about our ABA supervisor's attitude over the use of hemp oil supplement.  And, I am enraged.

As if the above didn't raise my blood pressure enough, I also had a visit from a representative from the IHSS (In Home Supportive Services) to see what, if any, benefits Luki would be eligible for.  She spent 30 minutes interviewing our needs and concluded we would be eligible for $5.00 per month on diaper changing duties.  You've got to be kidding me, give me a break!  I am really tired of all these "free" services that  seem more of a nuisance than help. I cooperate with getting assessments done through the Regional Center, IHSS, PT, OT, ST, ABA all because I have been made to feel it is the right thing to do and afterall, isn't early intervention everything?!  In hindsight, I am doubting the wisdom in all this.  The only reason I keep up with ABA is that it allots a set time for me to interact with Luki.  As far as I'm concerned, I am his primary therapist and the ABA person they send is just my aide and their supervisor gives occasional tidbits about the theories of ABA.

End of rant,,, Luki has woken up from his nap and I must attend. He has taken over the cat bed and likes to take cat naps on it.


Thursday, June 18, 2015

Realm of Caring's Charlotte's Web Hemp Extract and what It Can Do for Us.




Recently, I purchased Charlotte's Web hemp extract through Realm of Caring, a company that specializes in producing medicinal marajuana products such as endocannabinoids.  The hemp strain used to extract the oil is the same as that featured in the Sanjay Gupta CNN special report on the medicinal uses of marajuana for seizure control.  It is a strain that is high in CBD content and very low on THC hence making it not so alluring for recreational use but extremely potent in its effect on neurogenerative disorders such as seizures, autism, cerebral palsy and other brain related disorders.  In fact, the product is named after a little girl, Charlotte, in the documentary whose seizures were almost completely reduced after taking the oil.  Anecdotal studies show it  helps in seizure control, tics brought on by Cerebral Palsy and  mitigates symptoms brought on by other neurodegenerative disorders.

No studies are currently underway to see the benefits of endocannabinoids in neurodevelopment in cases such as autism. I have relayed contact information for GW pharmaceutical's [a British company that currently supplies pure endocannabinoids for clinical trials at UCSF and New York University] public relations director to Dr. Gargus, director of the new Center for Autism Research and Treatment center at UC Irvine to possibly start a line of clinical trial studies to see its effect on autism.  I am not sure what he did with the lead; hopefully, one of his colleagues has grabbed the idea and is running with it.  Anecdotal stories of endocannabinoids having neurogenesis effects is the bit of hopeful information that led me to run out and get the hemp oil extract for Luki's Dup15q syndrome. 

I am quite surprised by how easily accessible it is to get this stuff.  I just ordered online even without a prescription from a "weed doctor".  This just goes to show how safe the product is and even with over dosage, there is no need to call poison control unlike most prescription antiepileptic drugs currently on the market. 

Mr.L is currently on day 3 of use.  I am slowly titrating it up from 5 drops a day to 10.  Recommended usage on the bottle suggests 30-40 drops a day, three times a day.  Not sure if this recommended dosage is for seizure control but I plan to just give 5 drops b.i.d. and see what, if any, cognitive progress he makes.  As for cost, the 200 mg bottle cost $50.  I have read somewhere that in order to get successful seizure control, $100-$600 per month would be the cost for treatment, depending on the patient.  10 drops a day may last a month or two. 

We are not seeing any effects, yet, of course, it is too early.  But, maybe in a week or a month, a light bulb will go off in his little head. Crossing my fingers and hoping for the best.  


Sunday, June 14, 2015

Autism medical tidbits from a scrap of paper I found in my file.

I'm not sure where I got the information below but I had it scribbled on a scrap paper and tucked away in my Dup15q "research" binder. I think I was listening to a podcast on autism and took notes. I am writing it down here for safekeeping.

Things to do for constipation:
-Vitamin C 6 mg/day
-Aloe oils (good brand it miracle of aloe)
-Senna
-colace
-Avoid bar coded foods

Autism: an autoimmune disease?  A new perspective.  Check out New finding in brain immune system connection

Contraindicated meds:
-tylenol depletes glutathione by 21%
-depakote depletes carnitine
-Antipsychs such as SSRIs not recommended in children less than 7 years of age. (Read Anatomy of an Epidemic)
-statins deplete CoQ10
-"Beer for breakfast"??? Not sure why this was written down.
-cyclosporine (Not sure why)
-NO2 bad for those with seizures and mitochondiral diseases

Vaccines:
Watch greatergoodmovie.com  and Trace Amounts

MSS:
Master Mineral Solution/Miracle Mineral Supplement.  A controversial supplement that may do more harm than good?

HBOT: Hyperbaric oxygen therapy 
- helpful for mitochondrial disease
-reduces inflammation
-people with seizures and mitochondrial disease can benefit

Quentin hypertonic products:
a line of supplements that offers minerals obtained from the sea.
Good source of magnesium.

-IVIG used for immunodeficiency
-autoimmune diseases can lead to PANDA/PANS ( Pediatric AutoimmuneNeuropsychiatric Disorders Associated with Streptococcal Infections/ Pediatric Acute-onset Neuropsychiatric Syndrome)
Difference between PANDA and PANS

Friday, June 12, 2015

More Questions

In Numbers 13:32 we see that 10 of the spies spread a bad report full of exaggerations. Do we as special needs parents fall into that same trap? What is the result when we do? How does that affect those around us?



Yesterday we started looking at the account of Joshua and Caleb and the spies from Numbers 13-14 as it relates to our study on having a Godly perspective.
Read Numbers 12:31-33
Notice in verse 31 that some of the spies say "We can't....". Do you ever find yourself saying "Our special needs family can't....", "I can't....." or " My special child can't....."? What causes that hesitation to do certain things that in reality with God's help we could do?

I really enjoyed reading all of the comments in the group yesterday. If you have not had a chance to join in the conversation, I hope you can today.
Here are some things to think about today as we continue looking at our thought life and how we can have a Godly perspective as we raise our children with special needs.
If you are honest with yourself, would you say that you are more of a pessimist or an optimist? Do you tend to dwell on the negative or the positive?
Read Philippians 4:8. Make a list of all of the things this verse tells us to think about. How can thinking on these things help us change our perspective on the challenges we face raising a child with special needs and as we face our daily life?

Today we continue to look at how our thoughts affect our perspective in a positive or negative way.
Do you struggle with negative or destructive thoughts? When you have those thoughts what do you tend to do?
Read 2 Corinthians 10:5. What does this verse tell us to do with the thoughts that come in our mind? What do you think that means? How can taking our thoughts captive affect our perspective?
What a great week on the "Flip-side"! There were some wonderful suggestions this week on how to "guard our thoughts". Here are just a few.
1.Pay attention to what we watch, read and listen to.
2.Memorize scriptures to remember when your thoughts start to go to the "dark-side".
3,Spend time each day reading God's word and praying.
4.Play Christian music when the negative thoughts start to invade. 
5.Start replacing negative comments with positive.
Another important way to keep a Godly perspective is to be in community with others. So many times special needs families feel isolated, all alone and like no one could possibly understand their lives. At Rising Above one of the most effective ways we have found to creative community is by becoming involved and engaged in one of our Connect Groups. Connect Groups are small groups of special-needs parents who meet together regularly, for community, Bible study, and to encourage each other. Currently our Connect Groups are only available in the southern United States but we anticipate expansion. In fact, you may be feeling led to start a Rising Above Connect Group in your own community. If you want to talk further about what that might look like in your area contact me at bdavidson@risingaboveministries.org Meanwhile here is a video that shares about our current Connect Groups.https://www.youtube.com/watch?v=gEMIUOooboc


Monday, June 1, 2015

Miscellaneous Information to Consider this Summer.

Waldorf homeschool curriculum
This year, we opted out of summer school offered through the school district to try something new.  I am hoping to "home school" Lucas with the Waldorf curriculum.  It is a non-rigourous curriculum which I plan to use to increase his awareness of changing rhythms in the environment as well as his every day schedule- after all, that is the main goal of early Waldorf education.  I plan to incorporate lots of time outside (better get him used to wearing his hat even though he hates it), "help" around the house with chores (or at least try to include him), bake cookies, wash dishes, do laundry, etc... I am not sure how much of it he will absorb, but it will be fun spending time with him and I hope to get the ABA therapist on board to help me out.  If nothing else, the therapist can ensure his safety during the activities.

Why I Left ABA from a therapist's point of view.
I found an interesting article written by an ABA therapist on why she left ABA.  She found the process very abusive to her clients and corroborates her view with first hand accounts by adult people with autism who share how very abusive and tortuous the method was for them growing up. William Stillman states, "...there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming, and I haven't yet seen any studies that demonstrate how this programming builds esteem and mental wellness into adulthood."  It is, of course, the only "evidence-based" method to produce significant results hence only method covered by our insurance.  True, but I am sure chinese water torture would also be just as effective in getting wanted behaviors, but would that be the most humane and best way to get compliance? I think not. Besides, no studies have been done with adult individuals with autism the impact ABA had on their emotional well being.

Our ABA is more play based than the traditional version of a decade ago.  As always, I keep an internal Luki's "happiness gauge" with any activities and therapies and if the reading is on the low side, I am quick to stop whatever it is we were doing.  As William Stillman stated in his book Empowered Autism Parenting, "Too often, parents are conditioned by the autism industry to become overly dependent upon autism therapy because of the messages sent by the autism industry that more is better and that your child is broken and needs to be fixed, now. Yet, many children scream, kick, or cry during treatment or therapy,  If this happens, parents should intervene immediately and if it happens more than once, cease doing it!  Your child's "autistic behaviors" aren't behaviors at all - they're communications, communications that something is very wrong and why aren't you coming to my rescue, Mom!"

There are other drawbacks to the method, too as William Stillman elaborates here:

      In examples I've observed, the ABA professional, seated across from the child, holds up a flash card of, say, a cow and prompts the child to identify ?cow" until he does so correctly and often enough to be considered to have mastered the skill.  Negative responses, tripped by "behavioral triggers," are identified and modified in the environment or discouraged in favor of positive reinforcement.  The positive response of the successful child may be rewarded with verbal praise, a food item..., favored activity, or toy.
      Sounds great, right?  The only problem is, as noted, that's not how most persons with autism think, learn, process, and retain information, let alone possess the capability to transfer what's learned in ways that are functional and appropriate.  And if it sounds similar to what Pavlov did with dogs you're not far off base, though what thrills many parents is behavioral compliance - their child has been conditioned to suppress his autistic traits long enough to be less of a "behavior problem" and to outwardly present as "normal" But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote.  Further, we've disempowered parents from parenting.  We've supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. ....
     If you want me, as the one with autism, to learn "cow" help me learn it naturally in the context of a mutually respectful, reciprocal relationship that  makes it interesting, pleasurable, and intellectually stimulating to learn,  If you want me to learn "cow", show me a cow.  Take me to an open pasture and introduce me to cow; or at the least, let's learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows,  This is the type of quality interaction that those of us on the autism spectrum record for safe-keeping and replay years later as a pleasing recollection.

,,,And THAT is why we are doing Waldorf this summer!.

school for autism and developmental disabilities.
I found a school started by another parent with Dup15q Syndrome in the inland empire.  I think the school just opened. Will need to look into more information about this school.

Ketogenic pill to treat drug resistant epilepsy
Brilliant new idea for getting the benefits of a ketogenic diet without actually having to sacrifice eating carbs.  This drug sounds like an enzyme blocker to shunt carbs broken down from the anaerobic pathway away from the TCA cycle and directly into the lactic acid pathway. But of course! From what I can recollect during my biochemistry days, I think it would be 2 pyruvates per glucose molecule shunted to lactic dehydrogenase or the fat anabolism pathway. The person taking the pill would need to drink a lot of water to hydrolyze the stored fat.  This could be a possible cancer therapy method as it would starve cancer cells of sugar which they love.  Will be keeping an eye out for this in the future.

horse therapy for the disabled.
Summer is going to be filled with swimming lessons (by me), horse back riding therapies (click above), bicycle riding and Waldorf School for all Seasons curriculum along with floortime and ABA. The equestrian center stated that 30 minutes once a week is the schedule for summer but I'm not sure if Luki will be able to handle being on a horse for 30 minutes straight.  Just look at his interesting exit strategy on a merry go round.

I can see him trying to get off after 10.  Gabe and I are going to take him to a pony ride in Griffith Park to see how he handles horses and whether he will freak out.

Epdiolex clinical trials for intractable epilepsy at UCSF
Epdiolex, pure CBD oil with no THC, has now been included in a clinical trial at UCSF.  Our stingy neurologist told me about this today.  I ordered 200 mg of charlotte's webb extract in MCT oil for $50.00 yesterday through CW pharmaceuticals without even a note from a marajuana doctor.  The email invoice I received states it has been shipped already...Wow, it has become so easy to get hemp products now which is great, but I worry still about the THC in the mix as it can cause adverse effects such as sleepiness, weight gain, mood disturbance...No studies have been conducted to show its effects on autism or neurodevelopmental delays, but I am optimistic about its neurogenerative capability to help with brain development.  Not sure what dosage needs to be given as no studies for this purpose has ever been done.  I am thinking maybe 1 mg a day as a low maintenance dose for him and see where this goes.

New type of seizure detecting watch called Embrace.
We just purchased this new and upcoming product which purports to detect seizures and stress levels in people prone to epilepsy.  Not sure if Lucas actually needs it yet but I have noticed a handful of time when his eyes were blinking rapidly under his close eye lids.  I mentioned this to the neurologist today and he thinks it is highly unlikely that what I witnessed was a true seizure (his eyes being closed made him think so).  But, one never knows when, or if,  it will happen and I would like to be prepared.  I asked for a letter of need from the neurologist today so that we can get reimbursed from our healthcare reimbursement account since Kaiser doesn't provide such a device.  He said he would not do it because Luki has not been diagnosed with epilepsy.  Really? Jeez, why can't he just work with us?  What harm would it do for him to just write a little note stating that it may help us with monitoring him? We are paying for it with our own money which we set aside.   I am seriously considering changing neurologist.  He seems just too uptight, rigid and not thinking outside the box for my comfort.  I asked our pediatrician for same said letter and she said, "sure, will send it out in the mail today"..