Amanda and Sam

I have a 4 year old daughter and a 2 year old son. I now know that both of them had gut dysbiosis and dysregulated immune systems which presented in very different ways for each child. Learning  that they had gut dysbiosis and immune dysregulation was like finding the missing link. Learning about these conditions and how to overcome them was what really put us onto the path of healing.
Soon after Amanda was born, she developed oral thrush and was treated with Nystatin. This seemed to clear up the thrush, yet Amanda had “foamy” diarrhea and painful gas constantly. Nursing became increasingly difficult as Amanda struggled to stay latched on as if she was choking on the milk. My pediatrician at the time instructed me to reduce my diet to chicken, rice and a couple of vegetables.  She also told me to remove dairy from my diet and put the baby on reflux medication.  I tried it out and nursing didn’t improve, so I found a new pediatrician and a lactation specialist that diagnosed oversupply of milk. With their help, the baby was able to nurse properly and seemed healthy. But then the thrush returned and a new round of Nystatin was used.
At about 8 months of age, Amanda began having periodic fevers often accompanied by an ear infection. The fever episodes lasted about 5 days, the fevers would always reach 105 and were accompanied by severe vomiting and lethargy. The fevers started coming regularly every month and were often treated with antibiotics and high doses of acetaminophen and ibuprofen. Several times, I opted not to use antibiotics and the fevers took the same course as when they were used. Routine vaccines were administered and the fevers began coming every 2 weeks instead of every month. Repeat blood tests showed inflammation in the body but doctors could not pinpoint where the inflammation was coming from. We took her to specialists in genetics, gastroenterology and infectious diseases in hopes of finding the cause. All of the time spent and tests performed led nowhere as their tests could not determine anything. After waiting over 4 hours for a scheduled appointment at a very prestigious hospital, the doctor reviewed the tests and files and actually scolded me for bringing such a healthy child into such a busy place.
The periodic fevers continued and at 18 months of age, white spots began presenting in Amanda’s tonsils. On recommendation from our pediatrician, I began bringing Amanda to an ENT.  He diagnosed her with exudative tonsillitis.. At 2 ½ years old, her tonsils were removed and the fevers stopped. Although the fevers were now gone, Amanda had a severely distended belly, pale skin that wouldn’t tan and dark circles under her eyes. She was slightly anemic and began having rashes and hives.  An IgE test was done which showed her to be allergic to eggs and wheat. These were removed from the diet and the hives decreased. Amanda also had severe reactions to spider and mosquito bites. When she got a bug bite, it would remain swollen for weeks and often become infected because the bite wouldn’t drain on its own. This resulted in more rounds of antibiotics to clear up the infection. At that time, I thought that these remaining symptoms indicated that she just needed to “catch up” on nutrition. I had never heard of gut dysbiosis or immune dysregulation and I didn’t connect these conditions to Amanda until after my son was diagnosed with autism…
By six weeks of age, Sam was very gassy and constipated.  (This was chalked up to babies commonly having colic…) By 3 months old, he was constipated to the point of stooling only once a week and it appeared to be very painful for him. My pediatrician advised me to add fiber and prunes to my own diet to help Sam’s condition through breastfeeding. The constipation continued and the baby was only sleeping for an hour at a time and had to be held, even while sleeping. He seemed uncomfortable most of the time.
He also spit up or vomited after feedings and the pediatrician suspected mild reflux. She recommended that we try introducing solid foods when Sam was about 5 months old.  He seemed to like the food and we were hopeful that it would help the vomiting and constipation. Sam enjoyed eating fruits and vegetables and ate them happily. He didn’t really take to the baby cereal and it constipated him even more. I didn’t make the connection at the time that the dairy and wheat might be affecting him and so I continued to feed him these foods. By the time he was twelve months, he had given up eating all fruit and vegetables. He would only nurse and eat bagels and goldfish crackers. The constipation continued to get worse. He was stooling every 7 to 12 days. I know it was extremely painful as he would cry and shake every time. I was frightened but I didn’t know where to look for an answer.
There were other signs that something was wrong with Sam but I was in complete denial about it. He did not smile or make eye contact. Sam seemed like he was in a fog most of the time. He did not respond to our voices at all. I almost thought he had hearing issues except that if I ran the vacuum or hair dryer he would run around screaming and banging his head. I would put my nose to his nose and scream his name repeatedly and he wouldn’t flinch or look at me. I felt like a bad mom because it seemed like my son had no interest in being with me. I would try to play on the floor with him and he would walk away and put his back to me. The only thing he seemed to like doing was spinning wheels on a truck. Over and over again.
We wanted to hear words from his so badly. At his 15 month check-up the only words he had were “da” and “bye”  and he didn’t use them consistently. The pediatrician mentioned that he  might have  a speech delay and told me to track his words until his 18 month check-up and if he started to gain words, then we shouldn’t worry too much about it. Well, at his 18 month check-up he no longer said “da” or “bye” or anything else. He had no words. He was flapping his arms constantly and moaning. Sam could not handle any transitions. Just going from the car into the house caused a complete tantrum. Waking up in the morning and from naps was an instant tantrum. He would tantrum if people came to our house or if he was anywhere crowded. Sam was constantly miserable. At his 18 month check-up, the pediatrician introduced us to the M-CHAT (Modified Checklist for Autism in Toddlers) test. It is a series of questions to determine whether a child should be evaluated for autism spectrum disorder. Sam failed every question on the test.
I went home and called Birth to 3 to set up an evaluation. I read Jenny McCarthy’s book that night and the comparisons between her son and mine really hit home to me that we were dealing with autism.  This was my first introduction to autism. I really knew nothing about it prior to this day. I felt completely powerless waiting for the evaluation. The gluten-free/casein-free diet from Jenny’s book really stuck in my head. I thought I would try the diet since it couldn’t hurt and it made me feel empowered. It was something that I could do while I waited the endless wait for an evaluation.
To ensure that Sam was 100% gluten and casein free, I had to go on the diet myself because I was still nursing him. When you have to do something for your child, it is easy. I would do anything for my kids. Give up gluten and dairy? No problem. For Sam, it was not so easy. His whole diet consisted of bagels and goldfish. I found some gf/cf alternatives and hoped he would like them. Sam went through terrible withdrawals for about a week. Screaming, crying, shaking and nursing constantly. It took every ounce of my will power to not give in. After that first week he decided to try a gluten free pretzel. I could have chosen to wean him slowly from gluten and casein but once I realized that these foods were hurting him, I just couldn’t ever give him another bite. We were very lucky in that a couple of weeks into the diet, Sam made eye contact with me for the first time. I took that as a sign that we were on the right path.
Our pediatrician gave us the name of a registered dietician that had experience helping children on the spectrum. She walked us through the gluten free/casein free diet and how to implement it. She also gave us an education on food sensitivities, nutrients often missing from diet and labs we could do to get a baseline of Sam’s issues. With the combined information from Sam’s medical history and labs, our registered dietician was able to give us a diet plan and a supplement protocol. I tracked everything I could think of – food and supplements taken, stool and sleep patterns and behaviors. Sam began stooling every day and didn’t seem to be in as much discomfort. Over time, he stopped banging his head and throwing himself against walls. He consistently made eye contact and kept gaining new words.
Today, most of his autistic “behaviors” are gone.  He is able to connect emotionally and is beginning to speak in 3 word sentences. In nearly 12 months of diet modifications, and other healing approaches he’s gone from a child severely affected by autism to a normally developing 2 ½ year old.  He is now indistinguishable from other children his age. Much of this tremendous progress is attributable to early intervention and sticking steadfast to diet and supplement protocols. We are still working on healing his gut dysbiosis by working with a BioSET practitioner and a DAN doctor.  Through these additional healing modalities we have made significant progress in healing his reflux and food sensitivities and we feel confident that he will continue to make great gains.
Also, Amanda is really thriving now. Thanks to all we have learned about gut dysbiosis and immune dystregulation through Sam’s healing journey, we were able to apply similar healing protocols to Amanda with miraculous results. Her distended belly is completely gone and she is not anemic. We have recovered her from her food allergies and she no longer reacts to bug bites.  She is truly a happy, healthy little girl.

I have a 4 year old daughter and a 2 year old son. I now know that both of them had gut dysbiosis and dysregulated immune systems which presented in very different ways for each child. Learning  that they had gut dysbiosis and immune dysregulation was like finding the missing link. Learning about these conditions and how to overcome them was what really put us onto the path of healing.

Soon after Amanda was born, she developed oral thrush and was treated with Nystatin. This seemed to clear up the thrush, yet Amanda had “foamy” diarrhea and painful gas constantly. Nursing became increasingly difficult as Amanda struggled to stay latched on as if she was choking on the milk. My pediatrician at the time instructed me to reduce my diet to chicken, rice and a couple of vegetables.  She also told me to remove dairy from my diet and put the baby on reflux medication.  I tried the diet change but refused to use reflux medication. When nursing didn’t improve, I found a new pediatrician and a lactation specialist that diagnosed oversupply of milk. With their help, the baby was able to nurse properly and seemed healthy. But then the thrush returned and a new round of Nystatin was used.

At about 8 months of age, Amanda began having periodic fevers often accompanied by an ear infection. The fever episodes lasted about 5 days, the fevers would always reach 105 and were accompanied by severe vomiting and lethargy. The fevers started coming regularly every month and were often treated with antibiotics and high doses of acetaminophen and ibuprofen. Several times, I opted not to use antibiotics and the fevers took the same course as when they were used. Routine vaccines were administered and the fevers began coming every 2 weeks instead of every month. Repeat blood tests showed inflammation in the body but doctors could not pinpoint where the inflammation was coming from. We took her to specialists in genetics, gastroenterology and infectious diseases in hopes of finding the cause. All of the time spent and tests performed led nowhere as their tests could not determine anything. After waiting over 4 hours for a scheduled appointment at a very prestigious hospital, the doctor reviewed the tests and files and actually scolded me for bringing such a healthy child into such a busy place.

The periodic fevers continued and at 18 months of age, white spots began presenting in Amanda’s tonsils. On recommendation from our pediatrician, I began bringing Amanda to an ENT.  He diagnosed her with exudative tonsillitis.. At 2 ½ years old, her tonsils were removed and the fevers stopped. Although the fevers were now gone, Amanda had a severely distended belly, pale skin that wouldn’t tan and dark circles under her eyes. She was slightly anemic and began having rashes and hives.  An IgE test was done which showed her to be allergic to eggs and wheat. These were removed from the diet and the hives decreased. Amanda also had severe reactions to spider and mosquito bites. When she got a bug bite, it would remain swollen for weeks and often become infected because the bite wouldn’t drain on its own. This resulted in more rounds of antibiotics to clear up the infection. At that time, I thought that these remaining symptoms indicated that she just needed to “catch up” on nutrition. I had never heard of gut dysbiosis or immune dysregulation and I didn’t connect these conditions to Amanda until after my son was diagnosed with autism…

By six weeks of age, Sam was very gassy and constipated.  (This was chalked up to babies commonly having colic…) By 3 months old, he was constipated to the point of stooling only once a week and it appeared to be very painful for him. My pediatrician advised me to add fiber and prunes to my own diet to help Sam’s condition through breastfeeding. The constipation continued and the baby was only sleeping for an hour at a time and had to be held, even while sleeping. He seemed uncomfortable most of the time.

He also spit up or vomited after feedings and the pediatrician suspected mild reflux. She recommended that we try introducing solid foods when Sam was about 5 months old.  He seemed to like the food and we were hopeful that it would help the vomiting and constipation. Sam enjoyed eating fruits and vegetables and ate them happily. He didn’t really take to the baby cereal and it constipated him even more. I didn’t make the connection at the time that the dairy and wheat might be affecting him and so I continued to feed him these foods. By the time he was twelve months, he had given up eating all fruit and vegetables. He would only nurse and eat bagels and goldfish crackers. The constipation continued to get worse. He was stooling every 7 to 12 days. I know it was extremely painful as he would cry and shake every time. I was frightened but I didn’t know where to look for an answer.

There were other signs that something was wrong with Sam but I was in complete denial about it. He did not smile or make eye contact. Sam seemed like he was in a fog most of the time. He did not respond to our voices at all. I almost thought he had hearing issues except that if I ran the vacuum or hair dryer he would run around screaming and banging his head. I would put my nose to his nose and scream his name repeatedly and he wouldn’t flinch or look at me. I felt like a bad mom because it seemed like my son had no interest in being with me. I would try to play on the floor with him and he would walk away and put his back to me. The only thing he seemed to like doing was spinning wheels on a truck. Over and over again.

We wanted to hear words from his so badly. At his 15 month check-up the only words he had were “da” and “bye”  and he didn’t use them consistently. The pediatrician mentioned that he  might have  a speech delay and told me to track his words until his 18 month check-up and if he started to gain words, then we shouldn’t worry too much about it. Well, at his 18 month check-up he no longer said “da” or “bye” or anything else. He had no words. He was flapping his arms constantly and moaning. Sam could not handle any transitions. Just going from the car into the house caused a complete tantrum. Waking up in the morning and from naps was an instant tantrum. He would tantrum if people came to our house or if he was anywhere crowded. Sam was constantly miserable. At his 18 month check-up, the pediatrician introduced us to the M-CHAT (Modified Checklist for Autism in Toddlers) test. It is a series of questions to determine whether a child should be evaluated for autism spectrum disorder. Sam failed every question on the test.

I went home and called Birth to 3 to set up an evaluation. I read Jenny McCarthy’s book that night and the comparisons between her son and mine really hit home to me that we were dealing with autism.  This was my first introduction to autism. I really knew nothing about it prior to this day. I felt completely powerless waiting for the evaluation. The gluten-free/casein-free diet from Jenny’s book really stuck in my head. I thought I would try the diet since it couldn’t hurt and it made me feel empowered. It was something that I could do while I waited the endless wait for an evaluation.

To ensure that Sam was 100% gluten and casein free, I had to go on the diet myself because I was still nursing him. When you have to do something for your child, it is easy. I would do anything for my kids. Give up gluten and dairy? No problem. For Sam, it was not so easy. His whole diet consisted of bagels and goldfish. I found some gf/cf alternatives and hoped he would like them. Sam went through terrible withdrawals for about a week. Screaming, crying, shaking and nursing constantly. It took every ounce of my will power to not give in. After that first week he decided to try a gluten free pretzel. I could have chosen to wean him slowly from gluten and casein but once I realized that these foods were hurting him, I just couldn’t ever give him another bite. We were very lucky in that a couple of weeks into the diet, Sam made eye contact with me for the first time. I took that as a sign that we were on the right path.

Our pediatrician gave us the name of a registered dietician that had experience helping children on the spectrum. She walked us through the gluten free/casein free diet and how to implement it. She also gave us an education on food sensitivities, nutrients often missing from diet and labs we could do to get a baseline of Sam’s issues. With the combined information from Sam’s medical history and labs, our registered dietician was able to give us a diet plan and a supplement protocol. I tracked everything I could think of – food and supplements taken, stool and sleep patterns and behaviors. Sam began stooling every day and didn’t seem to be in as much discomfort. Over time, he stopped banging his head and throwing himself against walls. He consistently made eye contact and kept gaining new words.

Today, most of his autistic “behaviors” are gone.  He is able to connect emotionally and is beginning to speak in 3 word sentences. In nearly 12 months of diet modifications, and other healing approaches he’s gone from a child severely affected by autism to a normally developing 2 ½ year old.  He is now indistinguishable from other children his age. Much of this tremendous progress is attributable to early intervention and sticking steadfast to diet and supplement protocols. We are still working on healing his gut dysbiosis by working with a BioSET practitioner and a DAN doctor.  Through these additional healing modalities we have made significant progress in healing his reflux and food sensitivities and we feel confident that he will continue to make great gains.

Also, Amanda is really thriving now. Thanks to all we have learned about gut dysbiosis and immune dystregulation through Sam’s healing journey, we were able to apply similar healing protocols to Amanda with miraculous results. Her distended belly is completely gone and she is not anemic. We have recovered her from her food allergies and she no longer reacts to bug bites.  She is truly a happy, healthy little girl.