Nightmare got me up before the alarm clock came to greet me with a kiss and a hug. She was still fast asleep in her "Clemson Tiger" bed and as I turned around and saw my Snoozosaurs (both of them) in their usual morning position - diagonal with mouths open, breathing peacefully with an audible "eghhh - phatatatatata, eghhh - phatatatata". I knew I was the only one up and still reliving that horrible dream which brought back fear about my family's well-being and nearest future. I rushed to the bathroom, splashed face with cold water, looked in the mirror, sighed as I saw my morning face and quietly walked downstairs to put the kettle on. I turned on the Wi-Fi (we always switch it off for the night to limit radiation in the house when we sleep) and scrolled through Facebook posts - all same, nothing new, more bad news from Nepal, Israel, Syria, Yemen... Then some new reports on yet another medical/ scientific research proving definite link between mercury & vaccines and Autism and other developmental delays and neurological damages. Closed Facebook and news as all regrets and bad memories flooded back like a sticky bubbly mud - I still cannot forgive myself for not listening to my gut feeling when we took Michael for his MMR vaccine and then Hexa. He was not 100% well when he was jabbed with this lovely cocktail of different viruses preserved with Thimerosal. I trusted medical professional who after a brief check up decided that since he didn't have any fever, he was strong enough to receive his immunization, as scheduled. Oh, how I wish I knew then what I know now! But that's why I started this blog in the first place - to share my mistakes but also the good things that have been helping my boy after the MMR and Hexa fiasco.
As I said before, I am not against vaccinations but everything in moderation, as they say, and definitely check what is being injected in your little ones - better to pay a bit extra and get separate vaccines for each virus rather than risking taking the lethal combo. That's my opinion. Another big factor that pediatricians tend to overlook is kids' health when they come for their jab. Even a small congestion, or as Brits call it "a sniffle" can be dangerous and lead to neurological disorders, developmental delays and yes, to Autism. P.S. I vaccinated both my babies, but with my baby girl I took extra precautions, as I had already educated myself on the risks and side effects of immunization. But that's another topic.
These things made me think of all the meds Michael has been on, throughout the years. And again, I don't say you should say NO to any conventional medications your kid would be advised to take, but based on our experience I am going to share my view on medicating in general.
As we visit new doctors and specialists we discover new things that are "wrong" with my boy and we are being offered a "solution", or a quick fix - medicate and cover up the symptoms, so your kid will act more like other neuro-typical peers. And when you listen to all the knowledgeable specialists from around the world, and you value their experience in medical profession, you naturally tend to follow their advise. And why shouldn't you! Doctors swear to help patients and not harm them after all. So, we listened to the fantastic sounding option of putting Mikey on "very mild" norepinephrine reuptake inhibitor to supposedly treat his ADHD. May I take a deep breath again... Always, always and let me say again - ALWAYS read and educate yourself on medications' side effects, how long they've been in use, study cases (if there are any, as most of the drugs prescribed these days are too new to have scientific proofs of no life threatening side effects in long run) of patients who took these drugs as kids and are now perfectly healthy adults with no damage to their liver, lungs, brain, bone density etc... I learn the hard way!
This brings me to the story I wanted to share. It was a lovely Summer day and Mark and I had our date, going out for lunch to a nearby Mall. Kids were at their grandparents, as school was finished for the semester. As we were on our way, we received a call that Michael had twisted his wrist pretty bad. So we rushed to the clinic and saw our poor little guy all pale and with his wrist misplaced. As we were waiting for the X-ray we found out that because he had recently eaten, he wouldn't be operated on for the next 6 hours or so! And because arm was broken in 2 places he would need to go under full anesthetic, therefore no painkillers allowed! Those of you who have kids on the spectrum understand what I mean. Terrified little fella, not able to communicate with words, not understanding what's going on, and 2 bones broken in a really nasty way - definitely causing a tremendous amount of pain. To cut the story short, he has never been put to sleep, never been operated on and definitely never encountered such trauma. I need to mention a miracle that we witnessed as we were holding our boy in our arms in the hospital room, rocking him and humming his favorite tunes... Mind that he had not been given ANY meds that could take some pain away for 8 hours!!! We were praying like we've never prayed before. People around the world who saw our post on Facebook started a prayer chain and were sending us encouraging short messages. We looked at Michael and his face brightened up with a gorgeous smile, as he was playing with daddy's phone, waiting patiently for his surgery. It was as if he was given some powerful pain reliever or something, but it was power of prayer and merciful touch of God. It gave us so much courage as we felt this peace in the room. Then I had to use my Autism Mama Bear's techniques to prepare my baby boy for a surgery. I knew he was terrified as he was brought to this cold septic room. Doctors and nurses were trying to chase me away, which turned me into a Grizzly in a split second. They knew not to mess with a crazy lady :) They allowed me to get in the operating theater and talk to Michael as he would be given anesthetics through the breathing mask. I was holding mask and was explaining to him what it was for and how to take a deep breath... He was fighting as he didn't want the mask on his face. So I took it and put close to my face and smelled cherry like aroma - yup a sniff of good ole' anesthesia haha. After seeing me do that, he agreed to place mask on his face. It took a few seconds before he was completely under and then I was asked out. Fair enough. He had 2 big nails (stitches) put in his bones but doctor didn't want to put his arm in cask as it was surgical wound which could get infected if kept under plaster etc.
We came from hospital keeping an eye on our very inquisitive boy, who was determined to get the bandages off to look at the wound. During the day the"chase" was easy but nights were a different story. One night he came to our bed with no bandages and his palm loosely dangling as he held his hand up. Both Mark and I jumped and rushed him to the bathroom to put the bandages and the semi cask back on. We still laugh and get nauseous at the same time remembering that night. We both looked at each other, then gazed at Michael's flopped hand, and felt blood leaving our body making us dizzy and close to fainting. Mark was literally green on his face and his pupils so huge that I couldn't see his original eye color. I had to lie down on the cold tiles on the bathroom floor myself to catch breath and gather the last bits of energy within me and put bandages back on our very chilled patient. It was the worst! The reason I made this long introduction was to show the iceberg of it all. His arm was freshly broken, he had 2 long nails keeping his bones together and started a brand new Summer school/ Intensive Therapeutic Camp in a completely unknown environment in the University Camp.
1) traumatic experience + recent surgery + pain killers
2) change in routine + new place + new people (therapists/ psychiatrist / psychologists)
3) rooms cramped with other kids on the spectrum - some more severe cases than others
4) being watched/ observed and given regular food that Summer School menu provided (gluten bread, cheese, fries and gummy bears as reinforcement) hmmm...
I wonder why Michael had been so hyper back then... Aha! Not so much because of Autism, but because of ADHD! But no worries, there are wonderful meds, "fairly" safe for kids to tame these symptoms helping a child to focus and sit still for a longer period of time and thrive academically. Of course we tried these drugs and noticed some improvement - especially academic side. But after about 3-4 weeks we noticed worrying side effects - Michael stopped eating (classic anorexia), stopped sleeping, feeling more anxious and possibly hallucinating. He developed dark shadows under his eyes and his skin was pale despite being in the sun a lot (Summer). We were told to keep going as these side effects could easily be treated with another antipsychotic drug with a long list of side effects. It put a red light in my intuition and again URSA - the Autism Mama Bear was awaken and ready to attack. I had long discussions with many specialists (which I still value as great professionals in medical field) and tried to convince them to help us find a less invasive, alternative treatment that would actually cure the core of the problem and not be just a quick fix. So this is how our ways split, as psychiatrists firmly believe in treating a problem and I believe in curing a patient - even if it takes longer. So that's why I tend to exhaust all bio-medical remedies first, before I reconsider administering conventional chemical treatment.
So to answer the question "to medicate or not" I would say "it depends on individual case". Quoting Temple Grandin: "There are way too many powerful medications with severe side effects
casually given out to young children. I am very concerned about possible
long-term damage to the child’s developing nervous system. This is
especially a concern when powerful antipsychotic drugs are given. They
may cause tardive dykinesia,which may cause permanent Parkinson-like
shaking. For more complete information on medications you will need to
read the medication chapters in the 2006 edition of Thinking in Pictures and the 2010 2nd Edition of The Way I See it.
In young children, it is usually recommended to try interventions, such
as special diets first, for treating behavior problems that are related
to autism"
Be safe and God bless each and every one of you!
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