Chromosomal War: Rescuing my son

We knew we would have to face challenges with our son since I was 3 months pregnant because he was diagnosed with Trisomy 21 as an unborn baby; but regardless all challenges and stereotypes may come across, we happily welcomed our son into our lives. We knew things would be different, but our precious boy is just perfect to us; everything is in place with a little extra. He did really well as a baby; he didn't have major delays until he was about 7 month old. He reached some milestones right on track and a few ahead. He was catching up doing many things according to his age when he was 32 months. Because his great progress during his Early Intervention, the services for OT were decreased to once a month. But suddenly, something change on January 20, 2011. Tommy was rushed to the hospital because breathing problems. In the hospital, the doctors found out he had RSV, a reparatory infection. He was transferred to ICU three days after being admitted at the hospital. He wasn't breathing on his own. Things began to be critical for him and the doctors were concern he could get pneumonia; therefore, they gave him antibiotics. This was the first time Tommy had antibiotics. He also had to be sedated because his fights to get the oxygen mask off. And here it is when our journey truly began.

In the afternoon and through the evening of February 2, 2011, the day he came back from the hospital, I immediately noticed he wasn't the same child. I noticed some behaviors were not typical on my son. But I thought it was just part of the stressful experience at the hospital. When he came home and he didn't run like before, he just sat on the cough and look around wondering. When it was time to take his bath, he couldn't go up stairs as he used to. So the lost of strength in his body was evident. During bath time, he began to scream. He was upset when the water was falling on his head. Which completely didn't make senses to me because he used to enjoy bath time before getting hospitalized.  Another change, I noticed in the coming days was Tommy was excessively drooling. Tommy never drool in this way before. I immediately talked to his OT from the Early Intervention Program and we though it may be because he was teething. He wasn't the happy child anymore. Regressions in his overall development were becoming more notorious to me. Other behavior I noticed he was avoiding eye contact, when Tommy never before had this problem. He wasn’t responding to his name, which completely didn’t make sense to me because he began to respond to his name since he was 4 month old and my former therapist were witness of this. So I began to feel a grief! Something was wrong.

He ended services with our local early intervention program in March 16, 2011 and began services with the School District in March 21, 2011 . When he began pre-school, it became more notorious he needed help. I realized he was a completely different child at school. School wasn't making any sense for him. His OT at school made an evaluation on May 2011 and it confirmed he was having sensory processing issues. For my surprise, sensory issues in areas he wasn’t having sensory issues before. This was in the last months of my second pregnancy, so I had to wait a few months to look for help. So I began my search about finding the cause of my son's regressions and sensory sickness in August 2011. Looking for answer and help, I took him to Sensory Integration Specialist Center and here is when I began to find answers to my questions. They did an evaluation and Tommy was formally diagnosed with Sensory Processing Disorder in September 2011, his new diagnosed was just the first stage of my search. I knew there was more happening inside my son and it happened during the hospitalization and I was determinate to find what it was.

It took me many phone calls, a lot of reading, searching online, contacting blogger friends, talking with specialists, medical appointments and testing. All beside a brand new baby, going back to work full time, taking Tommy to private paid sessions, housekeeping and so on. My tiredness wasn’t enough to stop me for helping my son. I knew the only way to find out what was the "root of the problem" was ruling out the possible cause. We made all the tests suggested for the specialists and I found the cause, so know I can help my son to heal and over come all the challenges came after the hospitalization.

You will find in this page information about how we are helping our son. I just want to help other parents to learn from our experience specially if they have a child with a genetic disorder.

Rescuing my son: Getting the right diagnosis
Rescuing my son: Ruling out the cause
Rescuing my son: Testing for Sleep Apnea
Rescuing my son: Checking for Atlanto-axial instability (AAI) —Neck X-ray
Rescuing my son: Testing for Food Allergy/Sensitivity
Rescuing my son: Finding Answers
Rescuing my son: Testing for Biochemical imbalance in the brain
Rescuing my son: Alternative Therapies
Rescuing my son: No more insolation
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