Some little girls want to grow up and become doctors, dancers, or singers. As a child, I often thought of what I wanted to be, and the only thing I could remember ever wanting to be was a mother.
At the age of 17, three months before I graduated high school, I found out I was pregnant with my eldest daughter, Alyssa. My pregnancy was complicated by hyperemesis; however, Alyssa was born full term with no complications. Hyperemesis is a severe form of morning sickness, with “unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids. When I was 23, I met my husband, Juan. Juan had twin daughters from a previous relationship. Within our first year of marriage, we had a daughter, Alexandria. My pregnancy with Alexandria was also complicated by severe hyperemesis; luckily, she also was born full term without any complications.
With four children between us, we had no plans on extending our family; I planned on having my tubes tied when I learned I was pregnant with Gabriella. During this pregnancy, the hyperemesis was mild and I spotted on only a few occasions. At 38 weeks, my pregnancy was induced due to having too much amniotic fluid. Gabriella was born without any complications on January 7th 2009, weighing 6lbs 14oz.
Within the first few hours of Gabby’s birth, I felt something was not right. When she breathed I heard a very distinct sound, a sound that was so familiar. Both my older daughters had acid reflux and Alexandria’s was the worse of the two. I brought it to the attention of the nurse who informed me she couldn’t have acid reflux because she was too young. She stated that is how new babies sound when they are first born. We stayed in the hospital the required 24 hours then we were released to go home.
From the very first day Gabby came home, she always needed to be held and cried whenever she was put down. After being home two days, I noticed her eyes had a yellowish color to them. I contacted the pediatrician, brought her in and was informed Gabby had a mild case of jaundice and that she would be fine. I was advised to call him in 24 hours and let him know how she was doing. No blood tests were taken, and within 24 hours the jaundice started to disappear.
After a few weeks, the crying seemed to be getting worse as did the acid reflux. Gabby had major screaming fits every night around the same time. She cried for hours at a time and nothing seemed to help console her. She vomited with every bottle she had and it seemed as if she was vomiting almost as much as she was eating. We tried dozens of formulas and nothing seemed to help, although some were worse than others. By two months of age, Gabby was taking 2 different acid reflux medications. We decided to keep her on Enfamil A.R. I also began adding oatmeal and bananas to the formula despite the doctor being against it. By doing this, the vomiting was not as severe. Knowing this was abnormal, I requested a consultation with a GI specialist. The specialist did not run any tests; he examined her and spoke with me. He wanted to add more medication to her daily regimen.
As the weeks and months went on, Gabby became sensitive to baby food that once did not bother her. It was no longer just the formula that bothered gut; she actually vomited while eating baby food. She also acquired eczema all over her arms and legs.
Gabby seemed to never sleep, when she was awake she needed to be held. I did hold her more often because of the acid reflux because I was fearful she would choke.
The only time Gabby sat in something was if it was moving. She sat for short periods of time in her vibrating bouncy seat; she would not sit in a baby swing. I found sometimes the only way I could get her to stop crying and to fall asleep was to put her in her car seat and rock her very fast, back and forth, and back and forth. Once the seat stopped moving, she woke up instantaneously. At around 9-10 months, I noticed Gabby became very overwhelmed whenever we went into a store. She screamed and tried to jump out of the cart if she noticed someone in the aisle with us. This soon escalated and she began banging her head on the cart.
As the acid reflux continued, Gabby’s behavior got worse. At 10 months old, I was told by a nutritionist some doctors have babies stop formula if they have major issues with it. That was all I needed to hear. At that point, I stopped giving her a bottle and formula, and started to give her cow’s milk in a sippy cup. This did seem to help the vomiting immensely.
At 10 and a half months, Gabby learned to walk. In fact, she hit all her milestones on time or even early (3.5 rolled, 4.5 sat up, 5.5 held bottle, 6.0 put self in sitting position and learned to crawl, 7.0 pulled self to stand). Even though she hit her milestones, I was concerned about her behavior. I had brought it to the attention of my husband and other family members; they all thought she was just being stubborn. I also discussed it with the pediatrician. He told me not to feed into and ignore it, making light of the situation. What did I have to worry about? She was growing and hitting all her milestones, right?
As the behavior progressed, no one besides me found it abnormal. I started to question myself, am I being a crazy parent? Was all this really not happening? Why did I find myself crying every day? I did my first Google search to see if any of her behaviors match any kind of anxiety disorder, but I didn’t find anything that really applied. Why did she pull her eyelashes out, and pick her ears until they bled? Why could I not find any answers? We slowly stopped going to visit friends, attending birthday parties, and only went to the store when it was a necessity. Gabby would become so overwhelmed that the simplest things became major tasks.
I also noticed I started blocking off the “real world”. When my friends called and I always have to go because Gabby was into something or crying; it got to the point that I just stopped answering the phone. I started to wonder if I was the one with the problem. Was I having a nervous breakdown? One night my husband came home and I was crying. I kept repeating I needed to leave for a few hours. I had to get out of the home, Mommy needed a time out. I felt like I had lost all self control. Juan and I ended up in a major fight ,and I wound up in fetal position rocking back forth; I had finally cracked. I was unable to handle any more. Juan was angry and left with the kids to get something to eat. After he closed the door, I had my own personal meltdown. I walked out of the house and roamed the streets for several hours. I could not go back; I had failed at being a mother. I had failed at the one job I took such great pride in!
By 14 months, Gabby started to talk. She said, “Mom”, “Pa”, “Sissy”, “Goliath” (our dog), and attempted to identify each one of her sisters. At 16 months, she learned to take off her clothes, and it seemed like she always wanted to be naked. Often, she cried when I put clothes back on her. My little girl was growing, and once again hitting her milestones. The only thing that did not seem to grow with her was her coping skills. I also noticed that she was unable to make eye contact with anyone outside of our home. Once again, I started researching her behaviors but was not able to find any answers. I just could not shrug the fact that something was not right, even if others didn’t seem to believe. I had to do something; I couldn’t just let it go any more.
When Gabby was 19 months old, I contacted Easter Seals Birth to Three program. Two women came to my home to evaluate her. At one point during the evaluation, I was asked simple questions. Did she point? Did she try and repeat anything? Did she have any play skills? Did she try and interact with other children? Did she line things up? At that moment, I realized the problem stemmed way beyond anxiety and behavior. It was at that moment I realized she had stopped pointing, that she did not attempt to repeat anything I had said, that she didn’t play with toys. Asking Gabby the same question twice was off limits in our home because sent her into a meltdown. I told the evaluators how Gabby never played, she just pulled everything apart. She was fixated on the computer and wanted to sit there and push buttons most of the time. Gabby followed her sister, Allie, and attempted to play with her, but she did not have much opportunity to play with other children because it was too much for her to cope with. Did Gabby line things up? No, however, she did take her sippy cups out and match all the tops for hours. Wait, she was lining them up! How did I not see that before? The meltdowns become so overwhelming that I missed the more subtle things. I was amazed how well she did during the evaluation; she allowed them to invade her space more than any stranger had been able to do in a very long time. Their evaluation concluded Gabby has some developmental delays, and at that time I was offered 7 hours of service from them. Shortly after this, Gabby began losing the minimal words she had acquired. She had one teacher who came out and attempted to work with her. I quickly bonded with her and explained my desires to help my daughter. She then told me of a friend who was doing biomedical with her son, and was having great results with it. I needed to meet her, I needed to know more. Patty was my introduction into the biomedical world. She welcomed me into her home and explained what she was doing with her son. It was wonderful; the only problem was I did not understand any of it! What in the world was a probiotic, and why did she put him on a gluten and casein free diet? I went home and researched everything she told me.
While researching, I can across Jenny McCarthy’s story about how she recovered her son Evan. I went and purchased her book “Louder than Words.” The book was so empowering to me, and it was a major stepping stone believing I could help my daughter. I finally convinced Gabriella’s doctor to send us for testing to see if she fell on the spectrum. He gave me a referral to see a neurologist.
October 6, 2010, Gabby was seen at Children’s Neurology Services. The report read, “Gabriella had global developmental delays particularly in speech and language and a significant sensory integration issues. I do not feel that she is in the Autism Spectrum at this time, although it is very hard to assess due to very poor cooperation during visit. She is a child with very difficult temperament. I would suggest that she begin to receive speech and language therapy as well as occupational therapy for sensory. The family also needs a behaviorist to be working with them in the home setting.”
This doctor was unable to make eye contact with her; she also was unable to do any testing on her. Anytime she spoke to or looked at my daughter, Gabby banged her head against the chair. She was unable to do anything besides measure the circumference of her head. She did inform me Gabriella’s head was only in the 3rd percentile for her age and she was very small for her age. When the doctor touched my daughter, it sent her into a violent meltdown. Not once during any of these meltdowns did she look for me to console her. I sat on the floor with her and held her while counting and applying deep pressure hugs. Because Gabby allowed the deep pressure hugs, the doctor told me she was too affectionate to be autistic. She also did not seem interested in the fact my daughter had daily diarrhea.
On October 15, 2010, I asked my mother to come over while Easter Seals did an ADOS assessment on Gabriella. I think I just needed someone to be present; I needed to know things were not distorted in my head. The test was going very well until Gabby was asked not to pull the petals out of the play flower. This spiraled into a very violent meltdown; Gabby spent the next forty five minutes smashing her head into walls, the floor, anything around her. Nothing we did seemed to help. This was the first time my mother saw the behaviors that I had been telling everyone about. I can still recall the pain I saw in her eyes. Based on the assessment, Gabby received an educational classification for autism and was given 20 hours of services.
I had heard that some children with ADD or ADHD did well when dyes we removed from their diets. Having never researched this, I just went with my gut and started removing dyes; what did I have to lose by attempting it? Within days, I found the meltdowns were decreasing so I began removing high fructose corn syrup. To my disbelief, they decreased even more, and the head banging became a rare thing! My husband even noticed the difference; at that point I knew I was onto something. I took that idea and ran with it. I started to remove gluten from her diet. I also recalled Patty telling me she used a holistic physician, Bear Walker, to help her son. I needed to try something different because modern medicine seemed to offer me no answers. I had never seen a holistic doctor. I always thought those kinds of doctors were for the “go green, granola kind of moms”. I brought up the idea of seeing a holistic physician to my husband, he was completely on board.
On November 3rd my husband and I took Gabriella to see Bear Walker. He administered a test called the Bio Tracker. I remember this day as if it were yesterday. My poor little girl kicked and screamed; when her tights were removed she acted like a rape victim. I had never seen this behavior from her; to this day it still brings me to tears. The Bio Tracker’s results showed Gabriella’s large and small intestines, throat, ears, sinuses, nervous system, liver, stomach, bladder, and kidneys were all abnormal. She was given intact digest, Chlor Oxygen, Sublingual B6 (which contains zinc and magnesium), fish oil with Vitamin D, colostrum, probiotic, and trace minerals. After 3 days on these supplements, she gained 7 new words! This was the first point in my journey I did not feel like the “crazy mom.” Instead, everyone around me jumped on board! After a week on the supplement regime Gabby’ gut started to heal, it was the first time in months that my daughter did not have daily diarrhea (which I later learned was called leaky gut and was common in many autistic children).
I took the idea of helping my daughter a step further, and added a mini sensory room in our home. My mother made weighted blankets, and we introduced picture cards to help her understand and cope. We also used OT techniques like a brushing protocol and joint compressions.
December 15, 2010, Gabby had a follow up appointment with the Holistic Physician. Her tests showed her nervous system and lung results were elevated and her sinuses, IIeocal valve, adrenal gland, pituitary gland, fibrous tissue, skin, essential fatty acids, and spleen were not working to full capacity. She was given pituistat, hypothalmupar, anacom A.M, myrrhcom, and GABA, M.C.T oil. The Bio Tracker test done on her also showed sensitivity to wheat, whole grains, white flour, soy, dyes, and peanuts, yeast, and apples. Milk also showed up as a very mild sensitivity. At the end of the visit, my daughter not only let Bear Walker touch her, but she allowed him to help put her coat on. The changes were positive and happening very fast, I was elated. The changes my Gabby was making were beyond my wildest dreams and I was so very proud of her.
On December 17, 2010 we removed, all the above trigger foods and the more we removed the more I saw her change. GABA stands out to me, and I think it will forever be my favorite supplement. I watched the meltdowns cut in half, and the head banging completely disappeared. For the first time, she started to randomly sleep through the night. The more we removed, the more I watched her body heal, she no longer had any GI issues.
There were answers, real answers and they were working! I needed to know more, I became obsessed with learning as much as I could. I knew I could help my daughter. If Jenny McCarthy could, why couldn’t I? I did not lack ambition, just money. During this time I started blogging about our journey and telling others that even though I have never seen a recovered child, I was going to do it! I also started a Facebook page called The Autism Puzzle (alternative medicine). I started connecting with other parents; I started sharing how diet and supplements helped with her behavior, and how much I have seen her progress.
On January 4th 2011, I took Gabriella to a developmental pediatrician at CCMC. I explained how much Gabby changed, how she was now started to gain speech and coping skills, she was able to sleep through the night, and started to make eye contact. Even with the positive changes, Gabriella did receive a diagnosis of PDD-NOS, her CARS score was 34.
I now had a diagnosis which only empowered me more to recover my daughter. As much as I loved and trusted Bear Walker I could not afford to go back and see him. It was up to me to finish the recovery process. I knew I couldn’t do it with our limited funds. I started a fundraiser in honor of my daughter. I sold rubber bracelets. The money went to supplements, diet, and to help purchase an iPad for her.
I started to fine tune the diet. I also limited corn because it is hard for the body to digest (some also consider corn to be a form of gluten). I went a step further by looking at what was in her bath soap, shampoos, and lotions. I also stopped buying any food in a can, watched the amount of plastics used, removed MSG, avoided processed foods; I watched her sugar intake so that it did not feed the yeast in her body. I stopped using aluminum foil and began to stop using non stick pans or cooking with anything aluminum; I started cooking almost everything in glass. Every day, I watched Gabby do new things, I watched her change, I watched her recover.
Gabriella was making amazing progress, but as she progressed I felt like we were missing a vital piece to the puzzle. I guess it was just a gut instinct, but something was missing and I had to find out what it could be. In my attempt to find my missing link, I requested my daughter’s records so that I could review them. I found in the medical records that Gabriella had failed her organic and fatty acids tests at birth. Why wasn’t I told this? Not only was I not made aware of it, I had no idea that the Department of Health recommended my daughter see a geneticist. As I started reading the files more I noticed my daughter was retested by her doctor during her vaccinations. Why didn’t anyone tell me? I contacted the board of health and they told me there was nothing I could do about this because the doctor chose to retest her himself! I knew that I needed to find a new doctor. I needed someone who trusted what I said, believed in what I was doing. I needed a team player, if you were not willing to be part of the Gabby recovery team then, you needed to step aside so I could find someone who could be an active player.
In August of 2010, I took Gabriella to see the geneticist. He found raised colored, bumpy patches on my daughter’s body. I explained to him they were becoming more and more frequent on her body. He wanted to test her further for tuberous sclerosis. We had sleep studies done, body scans, and a bunch of other tests. They all came out normal (I am still waiting on the latest blood work of her fatty acids and organic acids tests results).
I began to question the diet and supplements on many different occasions, did she still need it? I either stopped the supplements or gave her something out of her restricted diet. EVERY single time, the meltdowns came back, the crying all the time, not being able to sleep, and her speech became unclear. I tried this 4 or 5 times before I really comprehended how profound the diet and supplements were. I started giving Epsom salt baths every day to every other day to help detox the body. In order to keep the toxins out of body I also chose to stop vaccinating her. I made it my mission to finish the recovery process. Gabriella is now 3 years old, she still is on a restricted diet and takes daily supplements. We are still working on her anxiety, but all other signs of autism are gone. If someone met her today they would never believe she has traveled the journey she has been on. Our goal is to finish rebuilding Gabriella’s immune system so one day she can function without such a restricted diet and supplement regimen.
I have not only learned to be an advocate for my daughter, but also for others. This journey has taught me to trust my instinct, and follow my heart. Life is not a one size fits all. Question everything, you are your own best resource.
Love will help you do things you never knew you were capable of!