There has been much debate and media hype regarding a connection....wait there is no connection. As a nurse I immediately sided with the Medical community. Then why the twinge when my grandson recieved his 12 month vaccinations and why did I become physically ill when he had a violent seizure shortly after them? Why was my first thought &%&^ vaccines! That thought was quickly disspelled by medical experts, an ear infection and a febrile seizure. Still that quirky feeling in the pit of my stomach...
Over the next few months changes occured. Developmental delays, he stopped trying to walk, didn't seem interested in learning new words, he preferred to play with wheels on his cars. The light was fading, becoming dimmer and dimmer until there was no eye contact at all and no spoken words. Hey what happened to mama, dada, nana, bye bye ,pop and cc? And what was the deal with his digestion? His GI systems seemingly shut down. On one of his numerous ER visits we had his abdomen xrayed because we thought he had eaten a plastic toy. Everything seemed to go into his mouth. But we were shocked by the results. He was impacted from his colon to the lower portion of his stomach. He couldn't process dairy and wheat products so the waste had become like stone. After a month of mineral oil twice daily, diet change (gluten/casein/lactose free) lots of crying at the extremely difficult passage. His stomach seemed better but the light was still gone. It wasn't until I dropped a pan on the kitchen floor that caused everyone in the house to jump or squeal yet he never flinched. I looked at his papi with tears in my eyes picked up the pan and a wooden spoon and walked up behind him and hit the pot with the spoon. Still no reaction he just kept spinning the wheels on his truck. I dropped the pot scouped him up and held on tightly and cried, "Something is wrong". While"Autism" echoed in my head other thoughts also popped in. Maybe he is deaf from the numerous ear infection since infancy. My tears didn't seem to have any effect on him. He just kept spinning the wheels. He was interested in any type of social contact at all. When placed in a social envirorment his solution was to run away. Even at parties that most kids enjoy were a nightmare for him. Too much noise, too many faces, to much expectation. He was slipping further away.
His mom and I talked. No parent wants to acknowledge that there child may have a problem but we agreed somethng isn't right. We immediately started pushing. His pediatrician didn't seemed concerned "he's too young right now, let's wait until he is 2- 3 years old, Well, screw that, so we found a pediatrician that would listen to our concerns. After she evaluated him she referred us to the Dan Marino Center in Miami.Thus began our journey.
They were very patient, understanding and compassionate. A barrage of testing began, speech, occupational, physical and psychological testing. The full gammet began. Lastly the 24 hour EEG monitoring. As they hooked him to the monitor with all those wires he looked even more tiny. Behind in his growth he didn't even make the growth charts to graph his development. He was 18 months in 6-9 months clothes. After the EEG they took his to the OR for anesthesia to conduct a specialzed hearing test to rule out a hearing deficiet because he had no vocal abilty and seemingly wouldn't acknowledge even your existence in his world. During the procedure panic again as he crashed from a reaction to the anesthesia that caused his blood pressure to plumment. Finally mom and dad were able to bring him home. Home to his mommy, daddy, sister, nana and papi. Now we wait...and wait... and wait...seeming endlessly for the results.
Shortly after his second birthday the results were in....The EEG showed numerous incidents of seizure activity, his hearing test was normal, his psychological testing revealed no emotional connection or differentation. meaning family had the same connection as a stranger. He was in his own world.
Final diagnosis PDD-NOS. Pervasive Developmental Disorder- one of the many spectrums identified in Autisic Spectrum Disorder, the "label" they give when there is "no specific reason for the disorder". We were devastated, forced to see a conclussion that I had felt in my soul from the moment the seizure occurred. Now the therapies begin, Speech, Occupational, Pyschological. What do we do now? What families do best! Rally the troops, prepare for battle, Support each other and we win!
I started making calls. I had a friend in the school early education department that I called and said Help!
He referred me to another colleague who was a speech pathologist. His office said they weren't taking new patients. I wasn't leaving it at that . I emailed him directly, explained my situation and he called me. After we spoke his office called to tell me the appointment time. We were in the door. Once there I realized he had set up not only his speech but the other therapies as well. We weren't going to have to travel to Miami he would see him at the office in our town. We all cried. The power of
family,
faith and
friends! God Bless this wonderful man! He loved his family and the children he cared for in his work. He was an undeniable Godsend in my grandson's journey back to us. Sadly he passed away from cancer but I was able to tell him of the remarkable progress my grandson had made because he made an exception and took him in as a patient.
With the progress made we were able to enrolled him in the Early Intervention program at school. The intense therapies at an early age I believe made the difference in his recovery.
A major milestone for me was hearing those 4 little words I thought he would never say.."I love you Nana". Wow, the tears again, this for joy. It hasn't been easy, rather it has been a long hard road but well worth the challeges. He has excelled socially & intellectually. He accomplished all his goals ahead of schedule and was able to complete his pre-k classes in a regular private pre-school and will start kindergarten in the fall in a regular classroom. He still faces challenges ahead but he has in a sense come full circle. He has now become quite the social bug, he initates conversation, plays with others and voices his opinion strongly. Is he cured?...hmm cured no... but on the right track, definately! Where darkness once swooped in, the light is now shining brightly with only glimpses of an illness that could have taken him forever.
Now to the crux of the matter, vaccines did they really cause this disease to "take hold"? But the scientific and medical community all agree there is no physical "proof" of any connection. there is that word again "proof". I have to wonder if any of those working on the "proof" have actually had a child with autism or seen through the eyes of a parent of an autistic child?
I absolutely agree that vaccines are necessary, but do no we really need to give so many at one time? How cannot that bombard the immune system? For most their immune system is strong enough to weather the bombardment and come out stronger but what about those with weaker systems? What happens to them? Are they the statistics that occur that they tell you about when they give the vaccinations? The paper they make you read and sign before they give the child the vaccine? A small percentage of those that have reactions? When you are one of those "statistics/percentages your perspective changes. Could an overload cause the brain to wall itself off from the bombardment of germs? I am not saying with any medical certainity that this what occurs but what if?
Why not spread out the vaccinations instead of so many at one time? What could it hurt? There is great resistance in this proposition. When my granddaughter started kindergarten she need a full range of required vaccinations. We started taking her 6 moths prior to school so that they could be given seperately. Every visit it was the same.."why don't we give her everything today?, When you say no they respond by saying to you "there is no evidence that vaccines are related to Autism" and each time my repsonse, "Because I choose to have her vaccinated one at a time!" Although there is no "proof" I see no reason to take a chance just in case the research is wrong. You see evidence of this daily with the commercial from"Law firms" urging lawsuits over medications that were FDA approved that now they have found caused potential serious health risks. By reducing the number of vaccines given at a single vist it seeming would give the child's immune to rebound before the next vaccine given what is the harm in that?
With other treatment and medications the dosage is calculate to age, weight , & height, and with chemotherapy the person's immune system is also taken into consideration. I believe we owe it to our children to really think about what and how much we put into their systems at one one.
As I look back at the whole picture:
Before- a typical little boy with sheephish smiles and giggles just beginning to talk.
After- emptiness, vacant eyes , no words no expressions of love either giving or accepting.
Now - typical little boy that likes to pick at his sister, but loves her dearly. Often now says "I love you Mommy, I love you Nana" to the moon and back as he smiles from ear to ear.
As I stated earlier, He starts kindergarden this year in a regular classroom. Wow! what an accomplishment for him. The future still holds challeges but now we only see glimpses of an illness that could have hearly stolen him from us forever.
