SPECTRUM - Our kids' stories

OUR KIDS' STORIES

Contrary to popular beliefs, children with autism or its characteristics can be helped through a plethora of interventions. Not every intervention works for every child and no intervention is going to be a magic bullet; but, with research, parent's knowledge of their child, and specific ideas for individuals, progress can't be avoided. We have included some stories to give an overview of things we have tried and how some things helped while others may not have. Please never feel we are suggesting that you should try what we have tried, but let this bring hope that with all the information that is out there, there will be interventions that will make a tremendous impact on you and your child's quality of life.

Robbie, a happy little boy

Robbie was a full term baby with no problems pre or post natal. He weighed 8 lbs. 10 oz. and was very healthy, strong, and friendly.

His first problem as a baby started on January 16th with his first seizure-like activity. Below I have listed the shots received prior to these incidents. They became increasingly more regular and from February 28th to March 27th they occurred pretty much every typical morning at the same time. EEGs showed nothing, but we did capture it on video.

Seizure-like activity from January 16, 2001 through March 27, 2001

Vaccinated with DTP and Hib on 11-15-2000
Vaccinated with Hib and Prevnar on 12-15-2000
Boosters of Hib and Prevnar on 3-21-2001

October 9, 2001 received Varivax and Prevnar

Activity level increased. Climbing on everything. Robbie became a very active little boy

Stopped nursing November 1, 2001 at 13 months

Fell off furniture in sibling's room about that time and wasn't sure if the gulping and grabbing of the throat that started about 2 weeks after transition to milk was an injury from the fall. Brought him to the pediatrician as well as the otolaryngologist that they referred me to (whom I cannot remember her name but it would be in the pediatrician's records.)
Over the next month, his pain increased and became more constant. I made many trips to the doctor's office. Grabbing, gulping, crying, obviously in pain, Robbie would look me in the eyes and try to get the point across.
Both of those doctors insisted that there was nothing wrong with him, that he was fine. Pediatrician actually went so far as to say he was doing it for attention or out of habit.
I demanded a second opinion with a pediatric otolaryngologist and when this excellent physician scoped my son he was astonished by the condition caused by reflux and amazed that the other doctors said there was nothing wrong with him.
I remember calling the otolaryngologist's office and crying because they wanted me to wait for an appointment and after I explained that he had been in pain for the last 6 weeks and the other doctors refused to believe it, they got me in the next week. The first otolaryngologist really tried to discourage a scoping. At the time of this phone conversation, I had mentioned that it had been going on for 6 weeks. The appointment was set for 2-26-2002, almost 6 weeks to the day that he was given the Hib Hep B and MMR on January 7, 2002. In hindsight I see the connection, but I didn't at the time. After the phone conversation, I carried my crying baby (he cried in pain most of the time) to the changing table to change his diaper and I told him "soon it will all be ok." He looked me straight in the eyes and started violently shaking his head to tell me "no, it won't be."

More doctors, more checkups

March 1st he had his first appointment with a GI specialist
March 4th he had an endoscopy
March 12th follow-up with the otolaryngologist that found the reflux
March 16th we went on a vacation skiing. He was on Prevacid or Zantac for reflux. His throat was feeling better; his speech started coming back and increased. My mother spent the week with us at the ski lodge and he was with her a lot of the time. She confirmed that he was very playful with her. Playing in the snow and in the condo, making typical eye contact asking for more apples. Climbing stairs and playing active games with her. Chase, tag, snow fights.
We had a well visit on April 19th where he was finally taken off milk by pediatrician (different one, since I wouldn't see the other any more) and received the dtap and the ipv.
April 23 I made initial contact with Early Intervention because he was starting to show drastic social regression. He wouldn't look at me any more when I called him. He seemed to have selective hearing but the hearing tests came back normal. Wouldn't accept me playing with him, he would just push me away. No more interest in talking and playing with anyone.
Another Grandma, who spent a few months in Florida came back to NY and was really concerned when she saw Robbie again in April. Said as soon as she saw him she knew something had changed. He was unresponsive and wouldn't make eye contact or play with her. Such a drastic difference.

Moving toward recovery

Early intervention started and through August 27 he received services in NY (2 hours home-based speech and 2 hours home-based special education).
After the move we started to get services here in Tennessee through TEIS and his service coordinator who was very helpful and accommodating.
He has worked so hard and has made gains every step of the way.
Before 3 years of age, he had 3 hours a week of speech, 4 hours a week of OT, 2 hours a week of PT, 12 hours a week of ABA (home-based) and a preschool environment (12.5 week minus the 5 hours of special therapies). The therapists worked with him at home and at school. They all worked together to work as a team. They attended the ABA workshop his instructor held to help everyone generalize all that he would be learning and he learned amazingly. He gained 12 months of receptive and 11 months of expressive language in 3 months of ABA.
Since his IEP at three, he has attended an absolutely awesome preschool 4-6 hours a day. His teacher is wonderful and really knows how to help my son. On his arrival to the program she immediately had the workbaskets and picture schedule all set up. She picked up on his needs quickly and was quick to accommodate to help him succeed. We will always be indebted to her for his progress and for her love, as well as to the entire team of professionals that work with him every day. He still gets 1.5 hours a week of speech, 1 hour of OT and the classroom is set up perfect for him. He started there with only a handful of words that were spontaneous and appropriate, but still no true communicating. A year later and he has more words than I can keep up with, and he uses them in very long run-on sentences.
Through a quality preschool program, diet, supplementation of necessary vitamins and minerals and DAN protocol (including Chelation) he is amazing everyone with his progress. He started with a 43.5 on the Childhood Autism Rating Scale (CARS) and is now about a 16. Just to reference 60 is the most severe and 15 is normal.
He can no longer qualify for an autistic diagnosis, since we started seeing the mercury come out of him, however he does have a diagnosis of "Regressive Encephalopathy due to MERCURY TOXICITY. Yes, it does exist, 349 is the code for it. His DAN doctor feels very strongly that the vaccinations contained enough mercury to cause his problems.

In conclusion

Currently my son still has some issues, sensory integration dysfunction and speech delay, and I am hoping that he will further compensate for his long-term effects of the mercury poisoning. We are still chelating and HG is still coming out as well as high levels of aluminum. I pray that he will function as a typical child in elementary school and function as a normal person in society. We cannot tell at this point but we have spent so much time, effort, and money to get him where he is, doing so much better.

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This site is maintained by Tina Marascia

This site was last updated November 29, 2004.