New Autism Cure - breakthrough treatments and cures for autism

Parents - Can you remember exactly what you were doing with your child when they were 47 days old? Seems to be a  random question to ask, and one that I wouldn’t be surprised if you were not able to accurately answer. Scott and Deanna Gromowski will certainly not forget that they were saying goodbye to their newborn baby son, Ian on his 47th day of life.

Ian was born 2 weeks premature. Weighing in at an impressive 8 lbs, 1.5 oz and 20 1/2 inches tall, he seemed to be as healthy as any baby should be. Soon after he was born, the doctor’s decided to move Ian to the NICU due to fear of Meconium Aspiration (MAS), which is the inhalation of meconium and amniotic fluid. This can occur before, during or after birth and is very common. In the most extreme of cases, the infant is placed in ICU for 2 weeks while the fluid drains from the lungs.

After being in the NICU for 24 hours, it was confirmed that Ian had MAS along with a fever and rapid breathing. He had to be fed via a stomach tube. Despite his condition, the doctors remained confident that Ian would be released to go home that day. Scott and Deanna were overjoyed and started preparing to go home with their new baby boy.

Despite the doctor’s confidence of Ian’s expected release, Deanna had something eating away at her - Mommy Instinct. She noticed that Ian seemed to be constantly in pain and wincing at it. The nurses were called and Ian was transferred again to the Neonatal Intensive Care Unit. Mom and Dad waited patiently for news on his condition.

On day 4 of his most recent trip to the NICU, Ian was celebrating his one week birthday. Things seemed to be looking up for the little fighter, and the doctor’s again gave the promise of his release the following day. All that was left was to take a hearing test and receive a Hepatitis B vaccination. He received his shot and by the evening, he had had a severe allergic reaction. He broke out in hives, and the Doctor’s and Nurses had no explanation - except for one: “It can’t be the vaccine. Vaccines don’t cause this type of reaction.”

Over the next few days, Ian became increasingly more ill. His platelet count went down, more hives appeared, his posture was described as “seizure like” and he was no longer eating. In addition, he was having trouble breathing. One doctor believed that Ian had some kind of virus and only had a 50/50 chance of survival. In the days to come, Ian progressed to stopping breathing every so often. Eventually his breathing ceased all together and he became filled with fluid. Scott and Deanna had Ian baptized and on the same day they made the risky decision to have him transported to Children’s Hospital. There was a high risk that Ian would not survive the transport.

To every one’s surprise, Ian kept on fighting and made it successfully to Children’s Hospital where a battery of tests were done, blood was taken, and a bone marrow biopsy was done. Scott and Deanna watched close by in horror as their son was examined, and tested. Deanna says on her website:

“I cannot imagine how my son was feeling at that moment. He was such a good boy. While Scott and I were devastated and exhausted, we would have given anything to have traded places with Ian.”

As he became progressively worse, every department of Children’s Hospital saw Ian, from Dermatology to Infectious Diseases. No one had a definite explanation for Ian’s condition or if it would worsen or improve. The only thing everyone seemed to agree on was that it “definitely wasn’t the Hepatitis Vaccine.” He received blood transfusions, and antibiotics. Rashes continued to develop, and it was found that he was allergic to some of the antibiotics that were being administered.

When Ian was just one month old, he went into surgery to have a tube put into his stomach to drain the fluid that had developed inside of him. This would also hopefully help his kidneys which had also begun to shut down. “Through it all,” Deanna recounts, “Ian remained a peaceful strong boy. He made us proud to be his parents.” After some time, his Kidneys began to work on their own. As wonderful as this was to hear, there was still a long road ahead, and Ian’s liver had swollen so badly, that it was visible through his stomach which was very swollen and looked very much like an over inflated balloon. The liver had began to heal itself, but Deanna and Scott knew that all of the medications were proving to be counter productive for Ian. They requested that he be taken off all pain medication and soon after this decision, Ian began to look better. He would open his eyes, and his movement increased dramatically.

No sooner could Deanna and Scott be given a glimmer of hope, Ian took a turn for the worse. During one of his Bone Marrow biopsies, he was accidentally given one of the antibiotics that he was found to be allergic to. They placed Ian on a Bone Marrow Transplant list, but he became increasingly more sick and his breathing which should have been at 100%, hovered just as 60%. His body was giving up on him, but Ian fought to the very last moment.

His last breath was taken at 1AM on August 10th, 2007. He was just 47 days old.

Deanna and Scott did much research into baby Ian’s condition and soon found documentation that proved that though uncommon, there are such things as allergic reactions to vaccinations. In addition they found that there is no treatment available for allergic reactions to such vaccines.

On their website, Ian’s Voice, Deanna and Scott share this bit of information:

Fact: It is suggested that infants get the hepatitis B shot before they leave the hospital. It is not required.

Fact: You can work out your own vaccination schedule and guidelines with your pediatrician.

Fact: You can order vaccines directly from the drug company with fewer additives and in single doses.

Fact: An infant’s immune system is very weak at birth. The hepatitis B vaccine can cause serious reactions if the system is already compromised, as was Ian’s.

Deanna went a step further and had a professional at Children’s Hospital write a case report on Ian’s condition and submitted it to see if there were any other like cases. It was found that several like cases had been reported - let alone those that had not been reported.

One of Ian’s neonatologists at Children’s Hospital of Wisconsin did report Ian’s case to VAERS (Vaccine Adverse Event Reporting System).  She also wanted to document Ian’s life in a case study for the Journal of American Academy of Pediatrics. Children’s Hospital would not allow her to do this.

It’s important that as a parent to know your rights and be made aware of the dangers of  vaccinations. Though often helpful in warding off illness, the fact of the matter is that vaccines can also be dangerous. If your child has a reaction to a vaccination, be sure to have a VAERS report done so that more parents can be made aware of the ever growing number of  negative reaction cases.

Had Deanna and Scott been made aware of the risks and sometimes fatal side effects of the Hepatitis vaccine, they might have decided against their son getting the vaccine that would cost him his life. Different people have different opinions on vaccines and their benefits - one thing is for certain - Ian was a strong little boy who fought to the end of his short life. He was determined to live, but you can only survive so long when your body is working against you.

Ian’s detailed story and pictures can be found on the website that Deanna created in his honor. The pictures are very difficult to look at, but tell Ian’s story more accurately that anyone else could.

It’s as best time as any to say that Ian is gone, but will never ever be forgotten.

A few weeks back, I discussed how gluten can cause behavioral disorders in children who are incapable of digesting it. Many parents have also found that removing Gluten from their Autistic child’s diet has been very beneficial. The same goes for Casein (dairy).

How does one go about removing this from a child’s diet? It’s unfortunately not as simple as cutting out just bread and milk. Carol Ann Brannon, who focuses on specialized diets for Autistic children notes that gluten can not only be consumed via food, but also through the skin:

“Gluten is found in wheat, rye, barley, oats, spelt, and any derivatives of these grains, including, but not limited to malt grain-starches, malt wash, hydrolyzed vegetable/plant proteins, grain vinegar, soy sauce, and natural flavorings. Casein is found in milk and milk products from mammals….Gluten is in even in Play-Doh, adhesive on stamps and stickers, and many hygiene products. Soy, another common food allergen, is in many foods and hand lotions, make-up, etc.”

Starting the diet is always the toughest part. Should you go cold-turkey; cutting out all bread and dairy products all at once? Or should you slowly omit these foods from your child’s diet? Some parents choose to completely cut out all Gluten and Casein all at once. It is also common that parents and other non-autistic children in the family will feel the benefits of the diet as well. Other parents choose to cut the gluten out of their diets first, and then move on the milk products.

If your child is on the GFCF (Gluten-Free Casein-Free) diet, what CAN they eat? It seems that living without bread and milk takes the majority of food choices away.

“Children can eat a wide variety of meat, chicken, eggs, fruits, and vegetables -– anything that does not contain wheat gluten or casein. It is generally recommended that organic, whole GFCF foods be consumed whenever possible.”

Tuesday mornings were always “Fluoride Day” when I was in elementary school. We’d all pile into the cafeteria and wait anxiously to see which flavor of the often used teeth treatment would be distributed. Some days, parents would be invited to come in and take part in the fluoride festivities.  Why shouldn’t they have? Clean teeth are important in both children and adults.

Could it be that this weekly ritual does more harm than good? Could too much of a good thing actually be detrimental and cause neurological disorders in children?

It’s possible - according to researchers  investigating fluoride and its effects.  Too much fluoride consumed by women who are pregnant lowers their thyroid levels and this may affect the brain and neurological development of the unborn child.  Such disturbance in development can cause ADD, Autism and decreased IQ levels.

This raises the question: “How much is too much?” and “If I stop doing fluoride treatments will this put me in the clear?” Not so fast. Fluoride is found not only in toothpaste and other dental products but in drinking water and some foods as well. Exposure to fluoride from these multiple sources could be enough to cause the lower Thyroid levels that can lead to neurological deficiencies.

As much as 2/3 of the nation’s water sources contain fluoride. There are organizations  such as the New York State Coalition Opposed to Fluoridation whose goal is to omit fluoride from public water sources.

Every time I watch the scene from Rain Man when Dustin Hoffmann’s Autistic character, Raymond has a meltdown, I cannot help but to feel sorry for his new-found brother and caretaker, Charlie (played by Tom Cruise).  As Charlie stands by and watches his brother have a meltdown in a crowded airport, he looks helpless, confused and scared.

We often sympathize with the parents and guardians of autistic children and people because its difficult to imagine being in the overwhelming position of caretaker. We put focus on advocates of Autism, giving them thanks for raising awareness and funding for the cause. We praise the doctors and researchers who are studying this neurological disorder in hopes to find new causes, links and treatments that can help us to better understand Autism. We often wonder how all of these life-changing individuals get through each and every stressful day.

Parents. Caregivers. Advocates. Doctors. Researchers.

We’re forgetting someone. Actually, we’re forgetting thousands of people; those who are living with Autism.  Of course, I say this more figuratively than literally as we all know that the people who are suffering from this disorder are never forgotten.  However, they are often overlooked on the list of people who we wonder “how they have the strength to do it.”

In the years that Autism has been under the microscope, we’ve discovered how it affects the brain, what types of medications help to treat it, what types of things are linked to it, etc. It’s generally known what the symptoms are and what they look like as these are things that can be researched and proven. There are some things that you unfortunately cannot put under a microscope, particularly emotions and feelings. So, we’re left with the often unanswered question: What does it feel like to be autistic?

14 year old Carly Fleischmann was once assumed to be mentally retarded because she was unable to speak. She was diagnosed with Autism and 2 years ago began interacting with people via keyboard. The words that had been caught inside her for years were starting to come out and now she communicates very well using moderm technology.

Carly describes in detail how she feels both physically and emotionally, like no one else other than she would be able to do:

“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t speak…It feels like my legs are on first and a million ants are crawling up my arms……Our brains are wired differently. We take in many sounds and conversations at once. I take over a thousand pictures of a person’s face when I look at them. That’s why we have a hard time looking at people. I have learnt how to filter through some of the mess.”

Carly also “speaks” about the things that any 14 year old girl does, like her fustrations with her siblings and her interest in the  opposite sex.  She has already inquired about when she will be allowed to go out on a date.