Friday, March 25, 2016

Somewhere on the Spectrum. Written by Andrea Penamora

Somewhere on the Spectrum

I was asked to think about sharing our story. Well, here it goes. Our first son was born December 2012. He had some medical issues from the beginning. He swallowed meconium at birth and had to spend a couple days in the NICU. We spent a total of 3 nights and 4 days at the hospital. We were finally discharged and we could take our bundle of joy home. This is when his gastrointestinal issues started. Our (hippy) doctor kept telling us it was colic, but I knew that it was not. Our baby would scream bloody murder when he was trying to go number 2. There was something going on. Come to find out he was suffering from chronic constipation, which he still does to this day. He also suffered from Acid Reflux as a baby and we had to put him on a special formula and add cereal to his bottles.

Fast forward to when he was six months old. This is when I noticed some odd behavior. It wasn’t anything too crazy but it did concern me. I mentioned it to the same (hippy) doctor and she disregarded it and said it was just him learning how to use different parts of his body. I let it go and enjoyed our baby. He was a happy baby and did not cry much. The only times he really cried is if he wasn’t feeling well or when we had to go to bed. 

He was hitting milestones, for the most part. He sat up and crawled around 6-7 months. He didn’t start walking until around 14 months. We moved from Hawaii to South Texas when he was 12 months old. Things seemed to be good. He was speaking, saying the normal mama, dada, waving hi, smiling, nothing that would really make anyone concerned. As he started walking this is when things started to pick up. He was running all over the place, never wanting to sit still. We saw it as him being a typical toddler exploring and being happy. He was always smiling. As time went on he got more and more hyperactive and fidgeting while we would try to hold him. He just wanted to run around. It was April 2014 when things really started to change. 

Our son started to get monthly fevers. His fevers would range from 102-106. He would become very miserable and did not want to eat or do anything. Going from the hyperactive little boy to this sad little boy with no energy was scary. It wasn’t until October 2014 that we found out he has PFAPA (periodic fever syndrome). Between April and October he became more and more out of control. Not listening to us, running off, fighting us when we would try to hold him, throwing toys. We thought that with his fevers tearing him down so much that when he was very hyper it was because of bottled up energy. We really did not think a lot of it. We just wanted him to be well. 

As time went on things just seemed more off. We started noticing that his speech was not accelerating. In May of 2015 we had Bentley evaluated through ECI. This confirmed a speech delay and a cognitive delay, later he was evaluated for sensory issues. He started to receive therapy and then he also got accepted into Early Head Start. We did see some improvement with his speech, but not enough. We went and saw our first developmental pediatrician in July and she was useless, she asked us a couple questions and just looked at our son and basically said that he had “hyperkinesis with speech delay,” Yea I could have told her that. So that was a waste of time. We continued with therapy through ECI and bringing him to Early Head Start. 

As time went on when start noticing more and more. We did give birth to our second in April 2015. Some thought that our son may have been jealous and some of his behaviors were from that but he was always wanting to help with his baby brother and always wanted to give kisses and hugs. We got referred to a child psychologist for help with his behaviors. The behavioral psychologist diagnosed him with ADHD w/anxiety. We did not 100% agree with this diagnosis but we were willing to listen to his parenting tools as to how to help our son in certain situations. We have applied the tools and still do to this day. Sometimes it works and sometimes it does not. Because we were not 100% okay with that diagnosis we ended up asking for a second opinion to see a developmental pediatrician. We saw him in November 2015 and we had high hopes of this being it so we could move forward and get him the behavioral therapy that he needs. NOPE! This doctor basically told us it was our fault that our son is the way he is because he doesn’t have meltdowns at head start and only has them at home. And because he’s sociable and has eye contact that he could not possibly have ASD. So here we sit with no ASD diagnosis even though we strongly believe he has it and his primary care doctor agrees with us but there is only so much she can do.  

Our son does have medical issues they do play a part in some of his behaviors. He was diagnosed with Hypothyroidism in February 2015. So, he suffers from PFAPA, Hypothyroidism, ADHD w/anxiety, and SPD. OH, and the last developmental pediatrician does not believe in SPD so he told us to have the OT stop doing sensory therapy (brushing, etc.). I just laughed at him. We did not tell the OT to stop any kind of therapy that she was doing. 

We have had the Microarray genetic test done and it came back “negative.” And because he is having issues with temperature and his body regulating it correctly he is going to have an MRI of his brain done. Once we get the results from that his behavioral psychologist wants us to contact him to discuss a treatment plan for him. We have told him that our son has been showing more and more signs of ASD and we want him reevaluated. 

In the meantime our son has been accepted into a Special Education Pre-K at a local public elementary school and he continues to go to Head Start in the afternoon. We absolutely LOVE his Pre-k teacher. And our son has been learning a lot in her class. He has learned his colors and he’s learning new songs. He’s such a bright little guy and I see him accomplishing so much throughout his lifetime, we just wants what is best for him. 

So this is our story as of right now. We are still awaiting an ASD diagnosis and hope that some day soon a doctor will actually listen to our concerns and take them seriously.


Bentley and Andrea


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