Oh, Nicole is autistic and non-communicative. She is unable to report to us so we have to guess from her responses. Normally she's a very happy person. Lots of laughing and giggling. Except during these attacks. She's 28.
OK Fire... gotta name?
You've raised the bar on Nicole's treatment. That said, the initial goal of preventing her CH still stands. Treating her autism is the next step if you're up for it.
My daughter Gretchen, took a two-year hiatus from her masters studies to take care of two kids with ASD. I learned a lot from my daughter regarding autism. The most important lesson was positive gains (improvements) are few and far between. I also had the opportunity to work with a naturopath treating a child with autism. He is the son of a high school classmate of Gretchen's. Although the naturopath and I were in agreement as to the course of treatment with vitamin D3 and the cofactors, the child's mother was unwilling to have her son's 25(OH)D3 elevated above the normal reference range of 100 ng/mL. As a consequence, the improvement was minor.
As Nicole's care giver and mother, I suspect you've developed a keen sense of her well being and reading her nonverbal communication.
I'll cut to the chase as Nicole's autism is nothing new to you. Have you had a CP-MS - Mineral and Heavy Metal Elemental Hair Analysis done on Nicole? The incidence of magnesium and zinc deficiencies among ASD patients is high as is the burdens created by excessive cadmium, aluminum, lead and mercury. All these are treatable. In fact, the anti-inflammatory regimen will take care of any magnesium and/or zinc deficiencies. Chelation therapy can address the heavy metals.
Treating Nicole's autism with vitamin D3 therapy will require you to take her to a physician trained in the Coimbra Protocol. This protocol is very similar to the anti-inflammatory regimen in preventing CH with the major exception that vitamin D3 doses and resulting 25(OH)D3 serum concentrations are significantly higher, there also are a few extra supplements and dietary conciderations.
Where the average vitamin D3 dose for CH is between 10,000 IU/day and 20,000 IU/day, The vitamin D3 dose for autism using the Coimbra Protocol is around 1000 IU/Kg Body Weight/day ( 50,000 to 75,000 IU/day vitamin D3) and possibly higher depending on BMI and 25(OH)D3 response. The Coimbra Protocol was developed by Dr. Cicero Coimbra, MD, PhD, a neurologist in Sao Paulo, Brazil. He has an amazing track record effective in treating patients with MS and autoimmune neurological conditions with a 95% complete remission rate. I've exchanged email and survey data with Dr. Coimbra since 2013. He has also trained several physicians residing here in the US. There may be one near you. See the following link for the location of doctors trained in the Coimbra Protocol here in the US: https://www.google.com/maps/d/viewer?mid=1fATZJUEhOsYYJdBY41h48FBkLaQ&ll=27.189497398872252%2C-82.03850906531966&z=8
I've been in contact with Dr. Barrett Ginsberg, MD in Naples, FL for several years and sent a few CHers his way.
Dr. Barrett R. Ginsberg, M.D.
77 8th Street South
Naples, 34102, FL
What is the degree of difficulty in taking Nicole on travel and to a phlebotomist for blood draws? She will need labs every 30 to 90 days until she's at a stable vitamin D3 dose.
Here's the most recent info on treating autism with the Coimbra Protocol. I suspect you'll find more about the Coimbra Protocol and Autism on Facebook at the following link: https://www.facebook.com/coimbraprotocol/photos/a.1548144692151907.1073741828.1546797872286589/1791336131166094/
AUTISM AND THE COIMBRA PROTOCOL:
This is part of a recent email from Dr. Coimbra in which he talks about his experience with autism and high doses of vitamin D:
"...Laboratory markers of autoimmunity have been found in autism spectrum disorder (ASD) and vitamin D deficiency during pregnancy is strongly related to autism in early childhood.
"We have used high-dose vitamin D in a few children and in a 17-year old boy (from Rio de Janeiro city) during the last 2-3 years, and all of them have reached normal or near normal behavior as a result of that therapy. In the first appointment he was silent and would not look at me; his father was passing all information on his clinical history since early childhood. For some time (a year or so, from 6 months of therapy) the 17-year old boy (now 19 to 20 years old) could report on the reasons of his behavior. Deep fear (triggered by the sensation of excessive proximity to the unknown) was reported as the reason why he previously would not look at the others' eyes, would not talk to others, and would not interact in anyway with others.
Amazingly, after 2 years of treatment he could remember nothing about what he had originally reported, and had lots of plans for his own future (he said he wanted to spend sometime in Canada for learning English as part of a student exchange program; "why Canada?" - I asked - and he said he had been investigating and identified Canada as the country where foreigners are more easily accepted; he said he wanted to move to a regular school in Rio de Janeiro in 2018 because he misses interacting with normal adolescents and young people in general; he wants to get a job to become financially independent from his parents; he even said he had been searching the internet by himself and concluded that the spreading of the knowledge on the importance of vitamin D for public health faces the opposition of drug companies). I do not have videos about these cases (only pictures that I take and insert in the electronic patients' charts / records)."
Please let me know how you would like to proceed. Switching our discussions over to email would be helpful. My email address is firstname.lastname@example.org. You can also reach me by FaceTime if you have an iPhone. My iPhone number is (703) 906-0702.
Take care and please keep me posted.
Batch, I've been following some of your posts and I have some questions. It seems the more I read the more confusing it gets. It's all most a shotgun approach to our daughter's CH. Throw it against the wall and see what sticks. Currently our daughter is going through a very bad stretch. Her pain is continual. It is always there and then builds to a crescendo and then back to .... She is moaning and then screaming. I read a post that was very interesting. You spoke about histamines. How they can be very troubling for someone with CH. Also, that THC can be a trigger. We've been giving her CBD that has a bit of THC in it and I read last night your thoughts about histamine and benadryl. We began her on the D3 regimen. This morning we gave her two benadryl. We're stopping the CBD. She was able to sleep through the night but my wife gave her the CBD first thing this morning. Now she's having a similar attack as she experienced yesterday. Our plan is to continue the Benadryl for 10 days and also the D3 regimen. She has oxygen and it was effective but now, not so much. Can't seem to bust this cycle. Any thoughts?
Thanks for the feedback about your daughter's CH and headzup she's started the anti-inflammatory regimen. You and your wife made an important decision starting your daughter on this regimen.
How old is your daughter and has she had the lab test of her 25(OH)D3 serum concentration? This baseline lab test before stating this regimen is an important, but not essential.. It's important because data I've collected over the last 8 years from thousands of CHers indicate a clear inverse relationship between the frequency of CH and 25(OH)D3 concentration.
It's also important for her to see the family PCP/GP to discuss this regimen and and have lab orders written for her serum vitamin D3, calcium and PTH. Make sure she takes a copy of the anti-inflammatory regimen. It will help her PCP/GP understand the treatment protocol and that it is very safe. You want her PCP/GP to be a team member as she takes this regimen to prevent her CH/
In simple terms, when a CHer realizes the frequency of his or her CH is high when serum 25(OH)D3 concentration is low (< 40 ng/mL) and CH pain free when 25(OH)D3 concentration is higher (> 80 ng/mL), has just learned a measurable factor about controlling CH. It's an "Ah Ha" and binary learning moment a CHer is not likely to forget. Take this regimen and there's no CH. Don't take it and the CH beast jumps ugly with terrible pain. It's also important for your daughter's PCP/GP to see this binary relationship. That will help her PCP/GP become a team player and an advocate of taking this regimen to prevent CH.
What may appear to be a shotgun approach with this regimen with all the supplements has been carefully researched. Each supplement (vitamin D3 cofactor) plays an important role in vitamin D3 pharmacokinetics (what the body does to vitamin D3) and vitamin D3 pharmacodynamics (what vitamin D3 does to the body). From the second morning (10 October, 2010) after the second 10,000 IU dose of vitamin D3 the night before waking up realizing I'd just slept the entire night CH pain free then realizing the horrors of the previous five years of chronic daily CH hitting 3 to 5 times a day/night and all too frequently up to 8 times a night, had ended, I began researching how and why this regimen was so effective in preventing my CH.
I'd been experimenting with a variety of minerals and vitamins at different doses in the hopes of improving my CH abort times with oxygen therapy for nearly a year with minimal but measurable results. Then I looked at my headache log and realized there were three CH pain free periods of two to six weeks over the previous five years and all occurred in mid August while I was out in the sun clad in shorts with no shirt. At that point, I realized it was cutaneous vitamin D3 that was making the difference, so I drove to Costco and purchased a bottle of 5,000 IU vitamin D3. It worked too well... Two doses at 10,000 IU/day added to my clutch of other vitamins and minerals and I was CH pain free.
I've a degree in Chemistry with lots of P-Chem, Bio-Chem, Zoology, and Genetics so I took a disciplined approach in documenting my research of vitamin D3 and its cofactors as they relate to preventing CH. I'm also no stranger to researching CH. I developed a method of oxygen therapy that involves flow rates (40 liters/minute) that support hyperventilation to abort my CH in 2005 shortly after being diagnosed with chronic CH. I patented this method of oxygen therapy with an oxygen demand valve in 2009.
Over the last 12 years, I've had the opportunity to meet with several of the world's top neurologists expert in treating patients with CH and also doctors and scientists expert in vitamin D3 therapy. I've shared my research with them and all have concluded the anti-inflammatory regimen is very safe and likely to be the best and most effective CH preventative we can take. It's so safe I've had my family and close friends taking it since 2011. That includes my daughter and niece who have taken it through three pregnancies, deliveries and while breast feeding.
In short, I have three grand kids who were bathed in maternal vitamin D3 from conception through breastfeeding as their mothers were taking 10,000 IU/day vitamin D3 plus the cofactors the entire time and continue to do so today and they don't have CH. After that they take 50 IU per pound of body weight per day as a vitamin D3 maintenance dose along with a multi vitamin and mineral chew. These three grand kids are vitamin D3 poster children. They have remarkable physical and mental development with T-Rex immune systems. They don't get sick. They are also budding Einsteins. My grand daughter Fred, a.k.a., Winefred was speaking fluent Hochdeutch at age 2 and completed pre-kindergarten in Heidelberg Germany where only Hochdeutch was spoken. She is now 5 and attending Kindergarten, but spinning her wheels... She comes home, completes first and second grade reading assignments, writes short stories, then does simple math addition and subtraction... I'm the old goat in the cowboy getup. I grew up on a horse.
Enough about me and on to the more important stuff. If you haven't already picked them up, the following photo illustrates the "Go to" supplements of choice by brand and doses my wife and I take. We switched to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules in July of 2018. We've taken the rest for over 8 years. Many CHers have made this same switch as we've all found this form of vitamin D3 is faster acting with a higher bioequivalence than the same dose of the oil-based liquid softgel vitamin D3 formulations. In simple terms, stick with these brands for the best results.
Over the last few years we've found it's best to start this regimen with the accelerated 12-Day vitamin D3 loading schedule taking 50,000 IU/day for 12 days then drop back to an initial vitamin D3 maintenance dose of 10,000 IU/day. If you have the Bio-Tech D3-50, all you need is one (1) D3-50 a week, This works out to an average dose of 7,000 IU/day. However, given the higher bioavailability, the effective dose with the D3-50 at one capsule a week, is more effective than 10,000 IU/day. Your daughter will need to double the magnesium dose from 400 mg/day to 800 mg/day split 400 mg with breakfast and 400 mg with the evening meal. Splitting the magnesium dose like this helps prevent osmotic diarrhea.
When your daughter has been on this regimen for at least 30 days, take her to the family PCP/GP to discuss this regimen and to request lab orders for her serum 25(OH)D3, calcium and PTH. Have her PCP write the lab orders to Quest Diagnostics using the following:
Quest Diagnostics Test Name: 92888-QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS. Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310.
As long as your daughter's serum calcium remains within its normal reference range, there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. You can also open a MyQuest account for your daughter at the following link to see her lab results once her PCP has seen them. https://myquest.questdiagnostics.com/web/home
I've used MyQuest for the last 4 years. It's the best way to track progress with this regimen. The following chart illustrates my lab results for 25(OH)D3, calcium and PTH over the last three years. As you'll see I've run my 25(OH)D3 up as high as 188 ng/mL due to an allergic reaction to mold spores in June of 2018. You'll also note my serum calcium remained in the green (within its normal reference range) the entire time so there was no hypercalcemia. My PCP understands why I take this much vitamin D3 and has no problem with my 25(OH)D3 serum concentrations this high, as long as my serum calcium remains normal... and it has.
When you have your daughter's lab test results in hand, have her take the online survey of CHers taking the anti-inflammatory regimen. To start this survey, click on the following link:
Data from this survey is the only thing most physicians will understand and more importantly, suggest to their patients with CH.
If you want a warm fuzzy about your daughter taking this regimen to prevent her CH, you, your wife and daughter need to watch the following video by Dr. Michael Hollick.
This is an informative and humorous presentation on vitamin D3 and calcium needed to build strong bones. Just understand that the vitamin D3 doses Dr. Hollick suggests are for otherwise healthy people. CHers are not otherwise healthy people. They need higher therapeutic doses of vitamin D3 plus the cofactors to prevent their CH.I know you'll have lots of questions so fire away as they come up. If you'll shoot me an email or PM me your email address, I'll send you the latest version of the anti-inflammatory regimen. My email address is email@example.com.
Take care and please keep me posted on your daughter's progress with this regimen. I'm here to help.
Thank you, Batch! There's a ton of very helpful information here. My wife said she had the opportunity to speak with you at the conference in Dallas! Definitely adds a personal touch to this advice. This is Nicole's third day of the regimen. I'll keep you posted! Thank you, again.
Randy & Carolyn
Thanks for the update and names. Please see my last on the Coimbra Protocol and Autism.