But I can say after 7 years with him and his health and development challenges, I'm feeling more positive then ever! This journey has made us (and our marriage) stronger, wiser, more compassionate and most of all, even more grateful for this special little boy God has blessed us with. I feel the need to share our story, to offer families hope, who are placed in similar situations and share what we have done to help our son reach his highest potential.
As a precursor to our story, we moved to a new state, due to a job transfer, when my son was 2 weeks old, I also had a 22 month old. I did not know a soul in the town we were moving too and family lived a couple hours away. As an infant, my son was tiny, 1% in height and weight. He suffered from severe acid reflux and from the time he was a few weeks old we started seeking medical treatment. He would throw up huge amounts after every feeding and at night he often choked on his vomit, leaving me too many sleepless nights. He slept on me the first 4 months, simply, so I would awake with any choke, cough or quiver.
We sought treatment for his acid reflux and tried medication and special formulas, even though he was breastfed, thinking he was allergic to my milk. Nothing really helped, but time. Then to everyone's astonishment, he contracted Salmonella at 5 months old. He was only breastfed during this time. Doctors were baffled how he could have contracted this. The best scenario they could come up with, was it was during the peanut butter Salmonella outbreak and I ate PB all the time, they think I got it, but didn't have a bad reaction and passed it in my breast milk to him. He had 10 days of bloody diarrhea, but no treatment was given. One week after he recovered, he was given 5 vaccinations. At the time I remember asking my doctor if we should wait until he had fully recovered and his reply, was, "do you want him to get sick again?" I uncomfortably agreed to give him his vaccinations, but to this day I regret it.
Do I think vaccinations caused my son's health issues? The short answer is yes, I believe they played a part. I believe because my son had digestive problems from birth and the Salmonella exasperated his gut problems. Then, when given the vaccinations on an already stressed immune system, his body struggled to recover, causing developmental issues. I have recently read the book by Dr. Natasha Campbell-McBride called Gut and Psychology Syndrome. For me, it was like all the pieces of the puzzle falling into place, including my health prior to getting pregnant. You can read more about it here. I highly recommend it if you have a child with digestive and development issues. Now, before you freak out, I want to say, I believe vaccinations are fine for healthy babies. My older son has had all his vaccinations and my daughter is on a revised schedule. But, in telling you my story, I do believe they played a role.
At his 9 month checkup, they checked his iron and found it very low, they were supposed to do this at 6 months and "forgot". They had us come back immediately for further testing and prescribed him with extremely high doses of iron supplements. At 12 months, they were concerned at his delayed language skills and his continued 1% growth, they called him failure to thrive. At 1 he weighed 17 lbs!! We had started seeing a new doctor after the iron incident and she wanted to start testing him for many different issues, including Cystic Fibrosis, Celiac disease and liver problems. For 5 months my poor little baby was subjected to pokes and testing that made me cringe and all the tests came back normal. I spent hours researching his symptoms and praying. I remember the night before he had an upper GI, holding him in my arms crying out to God to heal him or find answers. This was my hardest stage to date as a mother. I had no control and my little baby could not tell me what was wrong, it was a very hopeless feeling. I couldn't give up and not keep searching for answers, when clearly something was wrong.
After the upper GI, which caused my son to stop breathing and they had to give him a tracheal intubation, the doctor came out with the wrong test results (this was at a very well know children's hospital! ). After finding the correct records, they gave us a diagnosis, Eosinophillic Gastroenteritis. I was overjoyed, we finally had a diagnosis. I immediately found the leading hospital in the country that dealt with Eosinophilic disorders and made an appointment. Before accepting my son as a patient, they wanted to review all tests and medical records. Two weeks later I received a call from the head doctor's office, that they WOULD NOT see us, because my son, did not meet the criteria for Eosinoplillic Gastroenterisits. I felt crushed. I went back to the Children's hosptial in our area and they basically disagreed with the leading specialist in the country. They said they have run every test they can and if it's not this, they don't know what it is. I was discouraged and upset and stopped seeing them.
Meanwhile, my son was still not absorbing ample iron even with massive doses. After receiving his 18 month vaccinations he stopped waving and playing patty cake.(yes, I gave him more vaccines, after another gut feeling I shouldn't, the doctor said, he would be fine and I believed him.) I felt like I was, "damned if I do, damned if I don't." He had constant dark circles, cligned to me at all times and sucked his fingers. He was very loving, content and easy going, but I could tell he didn't feel well. I made an appointment with a Developmental Peditrican and when they heard his symptoms a 6 month waiting time, shrunk to a 2 week wait.
When we arrived at the doctor, we sat on the floor and the doctor graciously spent 2 hours talking to me and interacting with my son. His impression was:
"A language delay possibley due to a nutritional/allergic component, which would be difficult to confirm. He does not meet or even approach criteria for Autism Spectrum Disorder at present. Cognitive delay is not present."
I breathed a sigh of relief, but was still frustrated because we did not have any answers. We called the birth to three program in our area to see if we could get services in the form of speech therapy and my son did not qualify. We then took the liberty of hiring a developmental therapist out of pocket, who came once a week and worked with him.
I spent all my free time researching and watching episodes of Mystery Diagnosis, looking for answers. Then, around 20 months, I started noticing his right eye drift in every once in a while. I can remember being embarrassed to call yet another doctor, but I also new I couldn't ignore it. I made an appointment with a Pediatric Ophthalmologist. I made the long trip with my 2 kids in tow, hoping for a "he's fine, you are overreacting." I was not at all prepared for what they were going to tell me.
Click here for part 2.............................
What a journey. And what an amazing and open post! To say I can't wait to read part 2 seems weird...but I think you know what I mean.
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