Dylan before Autism
Dylan After Autism
Dylan During Recovery
Our son Dylan was a planned pregnancy. Before getting pregnant I had some medical issues: endometriosis, cervical pre-cancer, thyroid cancer, and P.S.V.T’s (Paroxysmal Supraventricular Tachycardia) which was triggered from my thyroid issues. I would have more than ten surgeries before becoming a Mom.
I knew that having a child may be a struggle for me, but my desire was very strong. We finally found out we were having a child on Thanksgiving morning 2004! It was a “high risk” pregnancy and I had to prepare by coming off medications and each trimester I had some sort of complication; Placenta Abruption, elevated heart rate & passing out, the flu for the first time in my life and was in the hospital, contractions or dehydration so I was on bed rest most of my pregnancy until his C-section delivery on Aug. 1, 2005.
When Dylan was born it was totally miraculous! He was the most gorgeous baby ever!! Had so much color and weighed 8.5 lbs. His health by the Apgar scores was perfect. When I think about the hepatitis B shot my son received in the nursery, it makes me sick to know how his behavior changed overnight. Dylan was always a fussy baby, crying uncontrollably for hours, but he did not show this behavior during his first day of life; that day I breastfeed him and he was so quiet, tranquil and would only sleep right on my chest. Each time they would bring Dylan to me for a feeding I could hear him screaming/crying all the way up the hallway and I would say “Is that Dylan” and the nurse would say “oh yes, that’s Dylan”. This continued during my boy's first months of life and the pediatrician said that was colic. Then, when he was 5 months we went to the gastroenterologist for the first time and he said he had acid reflux and prescribed zantac.
Dylan would soon be up for his next shots – 2 months; Hep B, DTaP, HIB, IPV, Prevnar. This is when I noticed the reactions. At this point, the sleeping stopped. Almost completely, he would sleep in 1-2 hour intervals. After each round of shots he got he would get a low grade fever, rash, high pitched screaming, projectile vomiting – he would eat and within seconds he would projectile vomit, his weight would not get above the 10 percentile, he would become irritable, and get nodules at the injection sites. I would call the Drs. Office tell them how he reacted and they would say “give him Tylenol and then 1 hr. prior to his next shots, give him Tylenol”. I had this horrible feeling, I felt bad for Dylan and also I felt guilt because I let this pediatrician do this to my son. I trusted someone who was supposed to care for my child's health and never imagined all this.
He never would just get (1) shot, sometimes there w 2 and sometimes he would get 5 in one visit. Never realizing what I – his MOM - was doing to my child. I would hold him and pace the floor back and forth trying to get him to sleep. Still, our child would be up all night long screaming & crying every night. I used to call my husband’s Aunt and my Mom and ask what to do? I would call the Dr.’s on call, and they would say “put him on the dryer, or drive him around, he is probably Colic”.
From 3 months to 1 yr. Dylan would have RSV (Respiratory syncytial virus) – a severe lower respiratory virus, pneumonia, bronchitis, lots of ear infections, Coxsackie virus, numerous URI’s & ER visits due to breathing issues and dehydration. He would have lots of testing done from blood work to upper barium, at 2 ½ he had a surgical procedure to rule out celiac and take biopsies of his ileum for food allergies and also to see if in fact he had reflux. It turned out he did not have reflux. He had severe constipation one day and terrible diarrhea the next. But still kept up with his 4 month shots; Hep B, DTaP, HIB, IPV, and Prevnar. This type of health continued with RSV 3 more times, two more ear infections, severe sinus infection 2’xs, pneumonia 2’xs, and many URI’s to present. Even though Dylan was in the Drs. Office with some kind of illness about every other day and sometimes with a fever, we still listened to the professionals and continued to get his shots on schedule.
Then came the flu shot at 6 months old. Dylan would have the flu shot 3x’s in 2 months. Two shots in one day along with Prevnar and DTaP, and then another flu shot we switched offices a month later and no one saw the records. All filled with Mercury. This went on until he was up to date on all shots to age 3 with Hep B, Hep A 2x, MMR, Varicella. And later we found out the Prevnar shot never took, his titers were low and that was part of the reason he was so sick. They re-injected him with the Pneumovax Vaccine in 2008!! And still sick.
Dylan held his head up at 3 months. He was eating “normally”, although there were things I at this time I noticed say that was odd for me, was that Dylan never liked to be dirty, he never liked to have food on his face, or walk or lay in the grass or sand with bare feet. He would cry and have terrible bellyaches, I would pick him up to comfort him and he would just arch his back and just about fall out of my arms. He wanted to be comforted but not want to be held. It was heartbreaking to know your child is in pain, but not be able to comfort him. He would be up all night long crying and vomiting with pain and discomfort but for the longest time we had not idea what the cause was. Eventually we learned, we had to give suppositories to relieve his pain. He had dark circles under his eyes, extremely pale in color, as much as we would go to the beach and our ethnicity was Italian, he would never be able to get a tan over the years.
As time went on I would see Dylan line up everything he possibly could, take everything apart that came apart, spin all the wheels or anything that spun, and would and still does toe walk. In fact, I remember the first time I saw Jenny McCarthy on Oprah talking about her son Evan and Autism. My Aunt, (my husbands Aunt) called and told me to turn it off! But Dylan still managed to hold his head up by 3 months, started talking – he had a vocabulary of about 10 words by the time he was 1 yr. and then he skipped crawling and went right to walking by 10 months!! So I figured he was ok, even though in the back of my mind I knew there was something ‘off’. Then time for the MMR shot that was 14 months old – by the time he was 18 months old the words began to diminish. Then at his 2yr. check had no words at all. The Dr. said “I believe your son has Autism”. Even though I had a “clue” no parent is ready for those words. We went to a Neurologist at CHOP for a series of tests, and then a Development Pediatrician for 6 hours in two visits – testing – both concluding the same result – Autism. The Final Diagnosis on Sept. 21, 2007
That is the day our lives changed forever.
After digesting the diagnosis, I remembered reading Jenny McCarthy’s book "Louder than Words" and in it was an organization TACAnow.org (Talk about Curing Autism) I went on the website for some information. That group was and is my support system from that day to this day for everything I need help with. They saved me from complete insanity.
The next thing I did was call Early Intervention and start my son with services within a few weeks. From the time he was in the system we had to do nothing but fight. Everyday was emails, phone calls, advocates, logs etc. To get what my child needed to recover and deserved by law.
In June of 2008 Dylan went back to the Dev. Pediatrician and she said he regressed. Dylan was having major meltdowns – almost daily, he was self injurious, he was hitting me, and his eye contact has diminished along with his attention – focus. We had lost hope at that visit. I came home got back on my TACA board and decided that this was the day I was going to make the DAN appt. (Defeat Autism Now) and start the diet that so many people had talked about and had success with. And I did. I went cold turkey! I went and bought a bunch of foods and started it. Financially this would become a strain for us, but when we saw how much this would help Dylan, it was something we would have to keep in our budget. Insurance doesn’t pay for the DAN Dr.
I called Dr. Prociuk in West Chester and made an appt. for that next week. From that point on we were GFCF and EF (Gluten=Wheat, Casein=Dairy, Egg free). We later did testing and found out he was allergic to Egg, Dairy and intolerance to Wheat. It took us about 4 months to see a difference in Dylan. Today, at 3 ½ we see a big difference in Dylan. Stimming is less, (flapping, spinning, hitting self etc) his focus is so much better, and his eye contact is there on and off.
We then started the biomedical’s (supplements & enzymes) through the DAN Dr. we have or are using; zeolite (detoxify heavy metals), tri-enza (enzyme for his digestive system), Probiotics (theralac for gut issues), MB12 shots (increase speech), spectrum support (vitamins & minerals), cod liver oil (focus), melatonin (sleep), P-5-P (pyridoxal 5- Phosphate) with Magnesium Glycinate (bowels), vitamin D3, Epsom salts & baking soda baths, Enhansa, Gaba with Niacinamide & Inisitol, Charcoal (as needed), Elderberry (boosts immune) Homeopathic remedies as needed.
Dylan still has a battle with not only autism, but medical illness as well. He gets sick quite often and very easily. He has the rosy red cheeks, ears and feet (some of you reading this will understand what that means) He wakes up in puddles of sweat. He suffers from Asthma, eczema, complex partial & febrile seizures, essential tremors, on and off anemia, chronic sinusitis, color blindness, severe sensory processing disorder, Apraxia, and severe OCD. He takes Trileptal, Singulair & Veramyst for these conditions. And he still doesn’t get tan! Dylan has major fear issues and extremely anxious and fidgety, issues we are working on.
Since starting the biomedical’s and GFCFEF diet, we have seen a completely different Dylan. He slowly started making sounds saying about 4-5 words consistently. Then about 6 months later, August 2009 he started to speak. He stills tantrums and has meltdowns but not nearly as much and we have learned how to help him through them. He loves to be cuddled and cuddle me now. He has daily bowel movements and when he goes he is not in pain like before. His eye contact and attention have gotten much better. There is hope and he will recover. J
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