Wednesday, June 29, 2011

Confession

Recently, I have been following the case of Dr. Mark Geier, who treats many children with autism using various biomedical interventions. In April, his medical license was suspended for prescribing Lupron to children with autism, and this month he has been in the appeals process, trying to regain his medical license. Lupron is a man-made form of a hormone that causes production of testosterone in males and estrogen in females to temporarily shut down. Used primarily for prostate cancer and endometriosis, Lupron is also used to manage precocious, or early, puberty in children. Among the various issues of Dr. Geier’s suspension is the assertion that he misdiagnosed children with autism as having precocious puberty, which Dr. Geier believes occurs as a result of mercury elevating testosterone levels in children with autism and heavy metal toxicity. Since studies have shown that high levels of testosterone have been associated with risky and antisocial behavior—two traits also associated with autism—lowering testosterone levels in these children temporarily may explain why parents who have used Dr. Geier’s protocol have seen improvements in their children with autism.

I must admit that had Dr. Geier’s Lupron protocol been available when Alex was younger, we may have pursued this treatment with him. While I don’t think that Alex’s puberty was actually precocious, I do think that he had elevated testosterone levels in his early teens that led to impulsive and often aggressive behaviors. From urine and stool testing, we do know that he had mercury poisoning, which we addressed with chelation by oral DMSA for a few years. When Alex was in his early teens, he suddenly went from being docile and easygoing to hostile and aggressive. Although I suspect this behavior is not uncommon, I think many parents do not talk about this difficult phase in the development of a teen with autism, perhaps because the behavior is embarrassing, or more likely because the change in the child is terribly upsetting and emotionally draining. At the time we were dealing with Alex’s intense outbursts, the only people who truly knew about the extent of Alex’s aggression, which we later figured out were anxiety attacks in which he went into “fight” mode with too much adrenaline, were my parents and a couple of my most trusted friends. Because I was both embarrassed by and distraught about Alex’s physical attacks on Ed and me, I couldn’t explain what was actually happening and would simply tell people who sensed I was stressed that we were going through a rough time with Alex and not elaborate further. Like a battered wife, I became adept at hiding any injuries Alex had inflicted upon me during meltdowns with concealer makeup and clothing (even long sleeves in the summer) to hide bruises and scratches. Now that I have come to terms with that awful period of our life, I can confess that during these meltdowns that occurred almost daily, sometimes more than once a day and at times lasting for more than an hour, Alex would scream at us, accuse us of things we had not done or said, spit at us, pull our hair (even pulling out some of mine by the roots), claw us with his fingernails until he drew blood (Ed and I both still have scars on our hands from trying to defend ourselves from these attacks.), grab our arms hard enough to leave bruises, bite us, hurl objects at us, as well as slap, kick, and hit us hard. Many times it would take both of us using all of our strength to restrain him enough not to hurt himself or us. Although Alex did not usually engage in self-injurious behaviors, or SIB’s, as some children with autism do, occasionally he would be so distraught that he would try to claw his eyes, which required that Ed and I each grabbed one hand to keep him from harming himself. To prevent him from scratching his face and eyes or us, we would put oven mitts on his hands for protection. We knew that Alex was not himself because during these fits, he would often foam at the mouth and have a crazed look in his eyes. Since Alex is several inches taller than I am, he has a distinct advantage over me in height, and the seemingly superhuman strength he probably gained from adrenaline during these meltdowns made Ed and I, both fairly slender, no match against our slender but surprisingly strong and tall son when he was in this mode. Therefore, we asked his doctor for a sedative to calm him during meltdowns, and she prescribed Ativan, which helped tremendously. In addition, I took lessons in the martial art of tae kwon do for a year to learn to defend myself.

This is one of autism’s dirty little secrets: delayed language, motor, and social skills commonly associated with autism are difficult, but they are just “a drop in the bucket” when compared to dealing with the less discussed hormonal rages of the teen years. I have decided to be candid about our experiences because people need to know what is going on behind the scenes in many families with autism. We can’t come to your birthday party or plan anything in advance because our teenager with autism might suddenly and for no apparent reason fly into a rage like the Incredible Hulk, and trust me, you don’t want to be part of that. Thankfully, through various interventions, including praying fervently, adding the supplements GABA and over-the-counter low-dose lithium, learning to deal with these meltdowns more calmly so as not to “pour gasoline on the fire,” and simple physical maturation that likely leveled any hormonal imbalances, Alex’s outbursts became much less frequent and less intense. On the occasional times where he reverts to aggression, he is easier to manage, but we still must be on guard for those meltdowns. Nonetheless, we are grateful to have survived those terrible times and feel great empathy for parents who suffer silently as their children are going through this extremely trying phase. As I explained in my last entry, “Curebie,” I continue to pray that a cure for autism will be found so that no child and no parent must deal with the side effects, including extreme meltdowns, this condition causes. In the meantime, I also hope that those who know families dealing with autism would show compassion, realizing that, like an iceberg, there may be more to the situation than what shows on the surface.

“Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses.” I Timothy 6:12

9 comments:

K. C. said...

((((Hugs))))

Pam Byrne said...

Thanks, K.C.! The saying, "What doesn't kill you makes you stronger" is true, I've found. :)

Love,
Pam

Anonymous said...

Thank you for saying it out loud. We need more families to come out with this.
My brother is 25 and has major agressive meltdowns.
We are out of ideas, but parents and families need to share these stories so that together we can find an answer.

Pam Byrne said...

I am so sorry that your family is having to deal with your brother's aggression. I know how scary this is, and I hope that your family can find help for him. Unfortunately, help is not always readily available. From our experience, I urge you to find a doctor who can prescribe medication so that everyone can be safe. You are in my prayers.
Take care,
Pam

Jenna Crowley said...

I am going through this right now with my 14 year old autistic son and would love to talk to someone who has been through it. I just feel so broken right now. PLEASE contact me at masterofenergy71@gmail.com

Pam Byrne said...

Jenna,
I have sent you a private e-mail and am praying that you find the resources and support you desperately need. I know how hard this truly is, so feel free to contact me--you're not alone!
Take care,
Pam

snickety snicks said...

I have a 15 year old son who is autistic and non verbal and doing the rage and crazed behavior too.... His pupils get so large I cannot even see his eye color..... We use GABA 3 times a day with some B6 in it, but it does not seem to help.... I am very hesitant to try pharmaceuticals because they have not worked for us in the past and a couple have put him in the hospital with severe side effects..... The GABA is 600 mg per caplet plus 2 mg of B6..... He went from being my sweet boy to a little monster!!!..... My email is sarahrose0413@yahoo.com if you could please email me and give me some suggestions??? We go to see a GI dr on Tuesday as well becAuse of loose stools for 3 months....

Pam Byrne said...

Sarah,
I e-mailed you privately with more details, but I would look into doing the Organic Acids Test from Great Plains Lab. Alex is most off the wall when he has yeast overgrowth, which that test can diagnose. I hope your doctor's appointment went well. Please let me know how things are going when you have a chance.
Take care,
Pam

Sarah Rosengren said...

I got both the emails, and wrote you 2 emails in return to the acct they came from....:-))