Friday, 25 May 2012

The Mothership

The end of this week has brought a flurry of activity.  Yesterday was one of those days where, as a working mom, I really just wanted to laugh at myself.  Who the hell do I think I am?  I can't do all of this?!!  I was running so fast my head was spinning and feeling like I was doing poorly in everything I did.  Two urgent cases at work for kids less than 2 yrs old (think lung transplants), a work phone that wasn't functioning (seriously, I gave my cell phone number to several providers...that is going to come back to bite me in the a__, despite the fact that I told them that they were to use that number for the day, then destroy it, ha), Jack's end of year parent-teacher conference, no school for Jack, Nate's school, oh and getting all of our paperwork together for our BIG appointment today.  I went to parent-teacher conferences in SWEATPANTS and glasses!!!  I am awesome!  The good news, however, is that my big boy has been doing much better.  His handwriting and drawing have improved significantly, as has his attention span at school.  He had a high school volunteer with him for about half of this school year, he really needs that extra attention to attend to tasks.  His teacher and I discussed that he is intelligent and has the needed skills, it is all the "noise" in his head that gets in the way.  Crustaceans mainly, lol.  She said that while she is not allowed to recommend it, a private aide for school would be beneficial.  She can't recommend it, I can't afford it.  Next year will be crucial for will be a true test for him to be in full day mainstream school.  Trying to prepare myself mentally for this.

Today both John and I took the day off of work (our coworkers are loving us for scheduling these appointments on warm, sunny Fridays) to go meet with Dr. Brenner.  The sink spitter.  For me, it was an absolutely amazing morning.  Let me tell you something, it is appalling that the medical community is not doing more constructive work for people affected by autism, it literally turns my stomach to think about it.  The "mainstream" way of approaching autism involves behavioral therapies, and OT, speech, etc.  These are effective tools in assisting these kids, I am not disputing this.  But who is dealing with the underlying cause of the issues???  All the therapies can do is help the kids function better while living with the issues.  Why should they have to????   Every physician that I have encountered that does not follow the mainstream approach has stumbled into "biomedical" intervention because of personal experience.  A child or grandchild afflicted with the issue, or a friend, or in this doctor's case, a patient when he was a very young doctor.  He has been a licensed pediatrician for 53 years and told us the story of the first patient he encountered that benefited from the interventions we were discussing.  This stuff is all "underground", ie, not accepted by the medical community at large.  I feel like the only reason my children will get this help is because they have very motivated parents who are willing to search and search.  Dr. Brenner's first question was "how did you find me".  It is a legitimate question, he is definitely off the beaten path.  He is in Randallstown for the local people reading this, and NOT in a nice area. This office is not posh, he is not a "private" physician by any stretch of the imagination.  Most doctors that address the issues Dr. Brenner does charge about $700 just for an initial evaluation.  And they do not accept all.  I found myself filling out questionnaires designed for medicaid recipients, and filling out a form asking who my medicaid MCO was.  After a minute I realized they weren't asking who I worked for.  The office reeks of smoke, secretary, NOT NICE, and had a pack of menthols on her desk.  Awesome.

But once we got in the back, none of that was relevant.  Dr. Brenner is great.  He is gentle with the kids, you can tell he is constantly assessing their behaviors.  He asked us detailed questions about the boys' developmental histories.  He is the FIRST provider to look me in the eye and write it down when I told him that Jack screamed for 24 hours straight after his hepatitis B vaccine at 1 day old.  He specifically asked about Nathan's regression, asked about typical characteristics that I didn't even realize that providers acknowledge (monotonous sounds, sensory habits, sleep, hyperactivity).  He used finger quotations when he spoke of the "medical community" and the "vaccine myth" (you know that one where vaccines cause or contribute to autism).  His vaccine myth, however, is the myth that they are safe for all kids.  He looked at Nate's stool assessment, and basically said, tsk, tsk.  I asked him what he saw, he said, "there are those eosinophils again".  I didn't even notice, I only noticed the yeast counts.  Eosinophils are the white blood cells that mediate allergic immune reactions.  Basically, indicates food intolerance.  This is not shocking, his blood showed us he has sensitivities right? This is just confirming that further, but we still don't know why he developed this inability to process certain foods.  He told me about an experiment that has been done with rats, it creates this same reaction in their guts that Nate is displaying.  Guess what they inject them with?  Aluminum.  Guess what replaced mercury in vaccines?  BINGO!  But of course this is not a problem to the "medical community" right?  Why would kids who couldn't process one heavy metal be unable to process another heavy metal?  Blah.  So he sent us home with hair tests to check for heavy metals.  Apparently, you can see it in your kid's hair.  We are also sending urine for organic acids, doing bloodwork to check for other issues, and doing a 24 hour urine on Jack.  Seriously, I am so glad I am a nurse.  So Glad.

The interventions....
Remember how I said I read about curcumin (common spice) being used?  Wants us to start giving the boys that.  He is increasing Nate's B12 injection dose and plans to start Jack on it too eventually.  We are adding something called P5P, and folinic acid for Nathan.  Ready for this one?  Epsom salt baths.  I have heard it numerous times in the community and seen it in the literature, and he confirmed that it has seemed to help lots of kids with autism.  Love the interventions that can't hurt, might help.  They are my favorites.
Here is a basic explanation of the purpose of the epsom salts in autism:

As it turns out, Epsom salts are also a nice remedy for some children on the Autism spectrum. Epsom salt is magnesium sulfate. Magnesium is a mineral that is very relaxing to the body. Many people, particularly in the United States, have a deficiency in magnesium levels. That can contribute to sleeping problems, behavioral issues, cramping muscles and a tendency to just not feel well over all. Magnesium can be absorbed and can cause relaxation. If it is swallowed in bath water it can be beneficial for kids with constipation. The other component to Epsom salt is sulfate. Sulfate is commonly deficient in children with Autism. We can measure serum sulfate levels which most of the time are low. The biochemistry with kids on the Autism spectrum is quite unique and there are various deficits that happen where the sulfur chemistry becomes depleted. This is important because sulfur chemistry is deeply connected to detoxification. The detoxification system in our body is critical to rid the body of toxins and for many kids we know that toxicity is a big problem. Simply adding Epsom salts to your child’s bath can be a nice remedy not only to add magnesium but to add extra sulfate to their system as well.

He also prescribed naltrexone, which puzzled me a bit initially.  For my nurse friends, it is from the same drug family as narcan.  Oncology nurses give this A LOT to patients requiring high doses of pain medications.  You walk in to check on them and they are unresponsive, breathing, you know, like 6 times a minute.  Not good.  Narcan blocks opioid receptors, and bam, they wake up.  I would not recommend standing too close to a patient after administering this, you're likely to get a fist in the face.  So why would I give this medication to my children, who are on no narcotics?  Here is what I found:
"It is one medication that according to Dr. William Shaw Ph.D should be added to the anti-yeast and free of casein and gluten diet and Nystatin protocol for children with autism. Naltrexone blocks opioids in the brain. The opioids from milk and wheat may slow the brain down."

Ahhhhh.....this makes so much sense to me.  If this is not effecting the boys, the drug will do absolutely nothing...however, if the diet is not adequate, if there is still yeast, if there is some other food product creating this effect, it may help greatly.

Can you tell I was a biochemistry major in college?  I hate that I am reading about this stuff because my kids need it, but man is it fascinating!!!!  I was always bitter that I took organic chemistry, 3 semesters of calculus based physics, calculus, genetics, and needed none of it for my eventual career.  Full circle people.  The more I live my life, the more I realize that absolutely everything I have done has served some purpose down the line.  I just may not see that purpose right away.
So these are the things to start with, before the lab results.  I am overwhelmed.  Luckily, I am also not allowed to do all of these things simultaneously....each change needs at least a week, so we can measure any effects.  So....tonight my kids will get an epsom salt bath, and in the next few days some lab work.  Then I will cut a piece of their hair and send it off, and we will go from there.  One step at a time.  And breathe.  I am just so happy to have a plan.  So freaking happy!  Yeah Dr. Brenner!!!!!

1 comment:

  1. I agree with that from a personal standpoint. Yes, OT has done wonders for me. However, it was psychology where I found the root cause of why my AS is interfering with me in my success in OT. Academically, while my grades were below average comparing to my classmates, they weren't bad. However when I did clinical work, the symptoms related to my AS showed up a lot more.

    At the beginning, my OT and I thought that it was because I had poor coping strategies. However, when I saw my clinical psychologist (who also screened me for autism), that was when I discovered while my anxiety levels weren't too high relative to other individuals with autism, it was high enough to impede my ability to succeed in the OT clinical setting. So, she started prescribing anti-anxiety medications (used to be 10 mg of Lexapro 1x/day, now is .5 mg Ativan PRN). Once I got the medication down, OT interventions have become much more effective for me.