Rocky

Rocky's Story
Rocky was born July 9, 1997 on his due date. Rocky is a product of what professionals call an “unremarkable” pregnancy and labor. Within 12 minutes and less then 4 pushes Rocky was out . He took a look to the right and left and made a little noise and a smirk. He did not wail. He was a very content baby. His Apgars were 8 and then 9. He breast fed without any problems. He seemed to be a very aware and content baby.

At his first weekly check up everything was normal. At his one month check up 8/19/97 everything was normal. His head circumference was growing normally along the growth curve. At that visit he received his Hep B vaccine, we thought it was kind of early, but we were told he needed to vaccinated. We did not spend long with the pediatrician because it was very busy. After this visit he seemed a bit more irritable then usual, but nothing out of the ordinary.

Our next appointment was 9/2/97, Rocky was 8 weeks old. His head circumference 14 1/4 inches. He was making eye contact with Ray and I. At home he was tracking Ray and I around the room and he was focusing in on lights. His head control was not quite there yet, but he would lift his head from side to side when he was on his belly and he seemed to be making progress. He was also making a crawling motion on his belly. He had also been turning over about a week or two prior to this appointment. We felt he was turning over early, because we always kept him on his belly. At this appointment his Pediatrician insisted that Rocky be vaccinated. He received the normal routine of vaccines for a 2 month year old: the DPaT, oral polio, and the Hib. On this short appointment we were told we should follow up with the neurologist who had seen him at the hospital where he was born, because Rocky did not wail. They wanted to just make sure everything was going okay .

After going to the Dr. that afternoon, we went to Ray’s Mother’s house. She noticed that Rocky was having trouble breathing. She raised a lot of babies and she said sometimes newborns occasionally do this. She said to keep an eye on it. I felt that she knew what she was talking about with all of her experience. I did not think twice that he had never done this prior to the vaccine. Also that afternoon he started pushing people away and he became very stiff. He wanted to keep his legs straightened all the time. I did not think anything of it I thought it was because his personality was coming out. Before that day, everyone used to joke that he was a Mamma’s boy because he wanted to be held all of the time. I now realize he did not want to be held because he became extremely hypersensitive from the vaccine. I did not realize it at first, but he also stopped bringing his hands to his mouth at that time. I now realize this is an important stage of development. It took me a long time to make the correlation.

That night after the vaccine was horrible, Rocky got a fever of 101.5. I called the Dr. to ask her what to do. She told me it was not really a fever. A fever is 102 or higher. She said to just give him some Tylenol. Prior to this evening Rocky would not sleep through the night, but would wake up breast feed every 2-3 hours, and go right back to sleep. LIKE A NORMAL BABY DOES AT THAT AGE. This night he refused to eat. I even tried giving him a bottle, thinking that maybe all of the sudden he did not like my milk. Nothing would console him. I would rock him, massage him ( he had a huge knot in his leg I applied warm compresses), I tried to feed him and all he would do is arch his head back and stiffen his legs. The sleepless nights lasted for months. Even during the day, he could not sleep for longer then 15-30 minutes at a time.

I called his Pediatrician a few times after this incident, she said he had colic and to give him chamomile tea. His Pediatrician’s office told me he was reacting to my milk. Maybe I was drinking too much MILK or having too much dairy. When I brought up the fact that he was arching his head back, I was told “kids with neurological disorders do that”. His sleeping habits became very erratic. For him to sleep I had to hold him. If I put him down or I moved he would awaken. The slightest bit of noise would startle him out of his sleep. Looking back I do not know how I made it through that period without any sleep. It was very stressful.

The following day after the vaccine we went to see the Neuro for our follow up, because he did not wail at birth. Rocky was not himself due to the night before. Unbelievably he had not falling asleep. He did seem more lethargic then usual. Rocky was not holding up his head nor was he tracking and his head circumference was a slightly smaller then the day before. No one ever notice this in their records though. The neuro recommended we have a MRI done.

Everything got worse at this point. A MRI was done, it showed myelin deficiency or splotchyness, but structurally everything seemed to be “normal." To make a long story short we were told he probably had a Leukodystrophy, Pelizaeus Merzbacher (PMD-Perteo Lipid Disorder). The Neuro said he had a 98% chance he would not be able to walk and because of his head circumference he did not know what his mental capabilities would be, but it did not look good.

Within in the months to follow, they took blood and more blood from Rocky, skin samples and urine samples. They also took blood from Ray and I to use at a later date. There were some mild elevations of organic acids in some of the urine tests that were done. He was retested a number of times each time showing a different acid. It has been ruled out that he does not have an organic acid problem. All of the Leukodystrophies that there are tests for, he has been tested for. All of which came back normal. The skin fibroblast was done to rule out fatty oxidation defects... As I suspected...... Normal.

The seizures came a couple of weeks after the vaccine. Rocky had been having these “Spasms” . I thought it was colic, but they seemed a bit strange. I did not think they were seizures though, because they were not the typical “Grand Mal” seizure you here about. These “spasms” turned out to be “ jackknife seizures” or what the medical community calls infantile spasms with atypical hypssarhythmia. He was in constantly have seizures they were uncountable.

Tried Klonopin... It made him totally wired. His sleeping habits were worse then before. He was so sensitive to sound, anything would wake him up. Then came... Vigabatrin (Sabril), which we ordered from Canada it is not approved by the FDA. He became even more severely constipated. The seizures looked worse he was having 30 of these “jackknife seizures” in a row. Another EEG was done. We were told the seizures were “the same” and we could start slowly taking him off the Vigabitrin.

While we were managing his medical schedule for tests to be done and worrying about the seizures and trying to catch some sleep, we managed to find time for an appointment for Early Intervention for an evaluation to be done. Rocky was 3 ½ months old. He was delayed in all areas. Rocky had a VEP and a BAER. His auditory showed to be normal, even though we still find him to be extremely hypersensitive to noise. He was so sensitive to noise we thought that certain noises evoked seizures and still any noise would awaken him out of his sleep. Living in NYC was a huge problem. The VEP showed that his vision was poor, because the response time was delayed.

At 6 months, he was considered to be neurologically at 2 months. There was no tracking, no eye contact, was not bringing his hands to his mouth, he was not grabbing for toys and had no head control. He laughed occasionally, but we are not sure what he was laughing at or if they were seizures. He was still having jackknife seizures, but was not tiring after them. He had mixed tone. He was now receiving therapy through Early Intervention. He was given physical therapy 2x, vision therapy 2x , and occupational therapy 1x and then later on 2x wkly and Special Ed once a week.

Rocky’s Occupational Therapist suggested we take Rocky to see an Osteopath in San Diego. She felt that Rocky had a reaction to the DPT vaccine and his symptoms were similar to other children she had treated. She gave me names of a couple of parents who traveled back and forth to California to see her. There were some other Osteopaths in NYC, but none of them had the same track record as Dr. Fryman. All of the parents I spoke to had only great thing to say about her. Two of the parents actually moved there permanently, because of the great progress their children were making. Needless to say as a mother I had to go. Somehow because of a cancellation I got an early appointment.

I do not know how we did it, but we got there. Dr. Fryman was very thorough with her evaluation. She took his temperature. His PCP never took his temperature. It was 101 degrees. He seemed normal to me. He always seemed to have these unexplained fevers after the vaccine. He was only about 15 pounds at about 8 months of age. He had been the same weight for 5 months. This concerned me. He seemed to be getting longer, but not wider.

So for my first week out there, I really did not notice any changes. The only really great change was that Rocky was sleeping through almost the whole night. He would wake up once to have milk and then go right back to sleep. It was great. Rocky had only been treated once, since he had his evaluation that week. You can only be treated twice weekly, because the body has to heal in between.

I was on my own for a week and then Ray would come out to join me for the last two weeks. I concentrated on giving Rocky all homemade foods, in their purest form. We went to the pool a lot. We played on his big beach ball, which I used as a therapy ball. We tried to spend as much time outdoors as possible. It was beautiful getting some real fresh air. The relaxing days we had those first two weeks seemed to pay off. Rocky was gaining weight. He gained two pounds those first two weeks. And three pounds within the month.

When Ray came the first thing he noticed was the shape of Rocky’s head. He said it was totally different. I was glad to hear it, Ray was kind of hesitant towards the whole trip. His mind was definitely changed.

While out there we met with a developmental Specialist who was trained in the Doman Delcato Techniques. The Developmental Specialist gave me an exercise schedule for Rocky specifically designed to help repattern his brain. I had read What To Do About Your Brain Injured Child by Glen Doman, before going out to San Diego so I was familiar with the techniques. I was glad I had done my homework so I could ask appropriate questions. As time is very valuable to me, being that I do not have enough it.

By the end of our trip, Rocky had gained three pounds. He had so much energy, we thought he would be crawling by the summer. While there Dr. Fryman gave us two homeopathic remedies to treat Rocky’s adverse reaction to the DPT vaccine. Dr.. Fryman felt that his myelin problems were due to the DPT vaccine. The remedies were started in CA and were continued after we returned to NY.

When we came back to NY in April 98, Rocky’s energy level went down. He was down to having 20 seizures a day in CA and now they were back up to the uncountable stage again. It was so frustrating. He became extremely constipated. I felt like we were having to start all over again. He became so constipated, his intestines became distended and he developed breathholding spells which the Drs. thought were seizures. I knew the breathholding spells were not seizures, because as long as I was holding him he would not have them. As soon as I put him down he would go into it. After 3 weeks of going to Drs. and finally getting the necessary referrals done to have a simple EEG it was decided by the epileptologist that the breathholding spells were indeed from intestinal discomfort, and not seizures. After receiving one treatment from Dr. Bayno, his Osteopath that he sees in NY, he stopped having the breathholding spells. And his seizures started to decrease again. For one week he was seizure free.

Also in April I got results from a Naturopath who was referred to me by another parent. He had done some tests on Rocky’s hair and saliva. The tests revealed that he had a reaction to the DT parts of the vaccine as well as the P. These tests are not approved by the AMA though. My research revealed that the DT parts of the vaccine could cause demyelination. And Drs. have known this since the 1920’s. Everything Dr. Fryman told was making sense. It now seemed that it was definitely VACCINE REACTION.

I had been doing alot of research on the web and various other sources, but I did not have enough courage to get Rocky’s batch numbers from his pediatrician. I finally did, and called the NVIC. There were 20 reactions in his batch, including 12 emergency room visits and 4 unknown recoveries.

The batch numbers are:

Vaccine Number Date Company

DPTa       827A2    9-2-97     Smithkline--      this is the one we think he reacted to.
Hep B      0312E     8-19-97 Merck
Hep B      0312E     11-7-97 Merck
Hib           M0039    9-2-97     Smithkline
OPV/IPV 442725    9-2-97    Lederly

There were so many things that pointed to the vaccine to me

1)   Hypersensitivity to face and hands within hours of vaccine.
2)   Breathing problems within hours of vaccine.
3)   Head arching back within hours.
4)   Inconsolable crying, but not wailing within hours.
5)   Fever within hours 101.5
6)   Sleeplessness within hours.
7)   Head growth stopping within one week and then becoming microcephalic. Early Fontanel closure and then ridging. Bulging fontanel within one month.
8) Cradle Cap like rash over eyebrows and top of head within one week.
9) “Colic Spasms” or “Atypical Infantile spasms” within 2 weeks.
10) Leg swollen at injection site. (left thigh)
11) Myelin problems within one month and half.
12) Lymphocytes revealed in all blood tests taken a month after vaccine.
13) Metabolic Encephalomyapathy type symptoms.
14) Chronic Constipation within One Month, before seizure medication was started.

We are now trying alternative therapies including Bach Flower remedies, Cranial Osteopathy, Energy healing, Homeopathy, Ayurvedic Diet, and supplements (including lecithin, flaxseed oil, multivitamin etc.). We are looking into magnetic therapy and have recently done some sound therapy. HBO I think would be a really good thing to try, but it is not in the budget. We do a home based program based on the Glen Doman program, which includes patterning. He also gets 3 PT, 5 OT, 3 speech and 3 Special Ed in the home weekly and at a facility he gets 2 PT and 2-vision therapy.

I hope this “long story” sheds some light on how a vaccine reactions can happen in certain children and can go undetected, because they don’t always have such obvious symptoms that you have to go to the emergency room for. Still to this day my mother cannot even tell when Rocky is having a seizure. How would a first time mother know? I never knew this could have happened to my baby. I never doubted my Pediatrician. I wish I would have been aware of the side effects, perhaps I would have seen them earlier and made the connection, not that there is a cure for vaccine reaction. Maybe it could have saved me from having my son put through countless tests.

If you are a parent you can e-mail me at Alicia@electric-web.com