July '07 Bulletin
(Meeting held: 7/25)
Guest Speaker: Joseph Bandalos
(written by Joseph Bandalos)
From: Ronkonkoma, NY
what is your child allergic to? Literally Everything (Food & Environmental)
Julian is my 13 year old son and has chemical sensitivity disorder. He is literally allergic to everything. It is just to what degree he is allergic to a substance, food and environmental. Two weeks after he was born, Julian was just barely able to reach his head when he was scratching it until it bleed with severe hives and did not stop. Four years before this, Joseph, my older son was born and never had any medical problems. So, still somewhat a new parent with no experience about ailments, I did know that I had to take him to the hospital. Having HIP at the time, the only thing they said was that he had "dry skin". I am no doctor. However, what I am is a concerned parent, and even I knew it was more then dry skin. My wife and I were now somewhat assessing he was having allergic reactions. But to what, we could not pin point nor even have a general idea. We tried so many suggestions, everything from every baby formula on the shelf to never leaving the house being afraid of the environment. Well, after six months of daily and weekly visits to the hospital and no diagnoses, I stopped paying for my HIP insurance plan and started to take him to new doctors hoping for an answer. Still, to no avail, a month later during my older sons b-day party, a family member gave Julian ONE cheese doodle. Within two minutes, his face and body was swelling. My uncle, who was the fire chief and at the party, drove us to the hospital in the fire chief car. I like to see the positive and say we were lucky that he was there that day. Later that week we started discovering after more test that he was being diagnosed as one of the most severe cases of allergies in NY state. At this point, his only intake of food was nutramigen baby formula and beechnut natural applesauce. By this time, we knew most of the nurses in the emergency room by name and all of the nurses on the ICU ped's floor of Stony Brook Hosp. His bleeding from scratching all the time was still so bad, we would change his bed sheets several times a week of blood. Another month later, we noticed he was now having difficulty breathing. After rushing him to the ER, the ER was about to send us home when the doctor on the Ped's floor said to come up when he heard we were there. The doctor could not believe the ER was sending us home because Julian was only getting worse by the minute! One hour later, my wife and I were making a decision to either voluntarily put our son on a respirator or we can wait until he would inevitably go into respiratory arrest by the end of that evening. A voluntary procedure was the choice we made that night. At nine months old, he ended being in ICU and on a respirator for one week. I remember the exact moment I helped to pull the tubes from his throat the same way I was there when I helped the doctor install them. He said at the time, it was easier for him to allow me to help him then for him to wrestle me out of the room. This was the time Julian was now diagnosed with a severe and life-threatening case of asthma. My wife and I closed our glass business stopped working to be home all the time. This situation was becoming a real stress on our whole family life for the four of us. All the specialist we were trying did not take insurance because most of them were holistic. I would try anything and see anybody. Everything from faith healers to a one week allergy testing program in Mt. Sinai Hospital in NYC. Dr. Boris in Syosset was the only doctor in NY we found that was able to test Julian for these allergies. Because of his severity to substances, Julian was also allergic to the serum bases the allergy test were made of. He could not even have his immune shots because of the egg base serums. After about five years, I found one Chinese doctor that helped somewhat with Chinese herbs. Because of the taste, it was very difficult to administer at five years old. It was not until he was about five years old when my wife and I were able to break away and leave the house for any period of time. About three years later I found a Dr. Dulin in Farmingdale who is a bio-chemist. He is very well known worldwide. Well, after his in-depth blood work exam, his diagnosis was that his histamine levels were 19%, the second highest he has ever seen in all his years of practice. The norm is one - two percent. Putting Julian on a vitamin program from Dr. Dulin and raising his pH balance (research I have done on my own) helped somewhat. For thirteen years, we had what we called Julian's med bag which carried all his med's for this life threatening disability. At different times, Julian med's consisted of everything from steroids, hydroxizine, benadryl, zolair, epi-pen, advair, vanceril, cromolyn, albuterol, intal, singulair to about ten topical steriods and creams. ALL of which, he was on the MAX ADULT doses. Having many severe side effects including severe facial and body swellings to hives, vomiting, itching, breathing difficulties and hospitalization. I myself lived in Hawaii 20 years ago and promised the family we would some day take a trip. Because of Julian's health, time and expenses, it took until 2 1/2 years ago when we were able to visit for the first time as a family. The day that we arrived, we noticed a change in Julian's health for the better. We found that this was the first time in his life that we were able to take him off all of his med's. Six months later we went back to revisit and found the same results. We were now thinking maybe this is no coincidence. Another six months later we went back for the third time. It was actually a scary emotion to see or son, for the first time in his life, to be "normal". Needless to say, we went back in August for the fourth time. This time we went for three weeks to try and confirm an uncertain theory. During that time, we were now considering to move there permanently in June of '08 after our older son was to graduate. We came back to NY the first week in September. Less than thirty days later, Julian was almost hospitalized again. I could not take it anymore knowing there was relief and somewhat a normal life for my son. So, we then decided to move there in January permanently. Julian still has severe food allergies to milk, all dairy, eggs, poultry and several other foods. However, because of his lowered histamine levels, we are now able to introduce him to a much greater variety of foods. Although, Julian may never outgrow that handful of severe food allergies and we may never know what the reason Hawaii has made a difference, he is a different child.
Joe's List of Resources:
Dr. Satnik #588-4486 Holbrook allergist
Dr. Dulin #516-293-5429 Biochemist, vitamin therapy
Dr. Menashe #908-906-8866 NJ allergist for the Elisa/Act test
Environmental Health Centers #214-368-4132 in Dallas, TX
Purity First #1-800-696-7017 Allergic free vitamins
Elisa/Act #1-800-553-5472 Delayed reaction Testing
PAK is not a professional or medical organization. It is a group of parents sharing information and supporting each other. The discussions, meeting minutes, handouts, guest speakers, agendas, and other products of our support group do not constitute medical/legal advice and should not be relied upon as such. Always discuss individual health questions and medical issues with a qualified personal physician.
In regard to guest speakers, the purpose of the presentations is to provide a variety of opinions on the spectrum on allergy issues. By no means is PAK adopting the views of its speakers, or endorsing them as medically accepted in the community. It is up to the guests to weigh the persuasiveness and acceptability of the presentations, based on their own knowledge and research.