Activist Letter!
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| Wed, 05-25-2005 - 12:02pm |
Hi all: I was talking to a friend of mine who has an Asperger's boy and she is also a Doula. She suggested the name of a local doctor who is very involved with the DAN! movement, etc. She thought I should get "our story" out because it makes a lot of sense with the history that she's seen over the years with kids on pitocin and GBS drugs. So, here is a "names protected" version of my rather long letter. What do you think? Feel free to send it around....
"Goodmorning:
I was just speaking with my friend, (Bx, about our sons and some ideas I've recently developed, and she suggested you might be interested in hearing our story. My husband and I have a 13 year old Asperger's boy (he is my step son) and a 5-3/4 year old severely SID boy, but seemingly not "on the spectrum." There are days you might wonder about that, though....
Anyway, ever since I've been involved in my step-son's life (since he was 2) I have been reading and researching a lot about different autism, ADHD, etc. issues. As you might be aware, Aspergers, especially 8 years ago, was a very difficult thing to understand. (Jx) was "diagnosed" with all sorts of things at first.... I'd say we have a pretty good understanding of him, his unique abilities and his issues with communication and what we call a "sense of other."
When our 5 year old came along, we were pretty well informed regarding differential diagnosis of different traits. Our OT says that (Cx) has 10 areas in which he is severely affected by sensory issues (what she calls "double red flags) and 4 areas where he is strongly affected (red flags). Life with these 2 boys is a complicated mixture!
A strange turn of recent events caused me to do some searching last week regarding possible "causes" for SID and autism. I came upon an interesting consistency in other mom's stories of birth antibiotics for GBS or heavy antibiotic use in the child in 1st year.
(Cx) has been making wonderful improvements due to recent dietary/supplement support and OT. But, he caught strep throat 10 days ago and went on antibiotics. It was like watching my boy get lost. He slowly became more hyper, more manic/goofy behavior, more accident prone, more aggressive, less likely to be able to sit still, less likely to listen to us. This set off a huge light bulb in my head. It seems once toxins are increased (as happens in the gut on antibiotics) (Cx)'s behavior deteriorates. We saw the same thing this winter when he had a Hep A shot to go to Mexico. For 3 days he was like Ricochet Rabbit on crack!
Why is his little system so precariously balanced? I believe it is due somewhat to heredity - something in him sets his brain up for changes to occur. Possibly the fact that extreme to profound giftedness exists on both sides of his family. Gifted brains work like a faster processor, and use more "food." (Did you know that Einstein's brain was found to have a huge number of additional cells that carry food in the brain?) I simply think more is being "injected" up there in the 1st place. I realize this is pure conjecture on my part, but it's a complicated puzzle.
But, then there is (Cx)'s birth history. (Cx) was breech. At 8 days before due date, I went to the hospital and they turned him around. Then they induced labor so I could have him before he turned back breech. I was group B strep so they immediately started an IV penicillin drip. Every 2 hours I got a new bag. They also started pitocin to induce labor. It was not working - I was having very strong contractions but no dilation. It seemed obvious to me (Cx) wasn't ready to be born. The hospital increased my dose of Pitcocin to the point where we were 5 times the maximum dose! After 36 hours, about 10 bags of penicillin and my poor baby being squeezed to pieces, I signed myself out of the hospital. They were VERY unhappy with me. I think now this salvaged part of (Cx)'s brain.
I remained in the 1st stage of labor for 8 days. Contractions every 5 minutes. (Cx) was born on his due date with 4 easy pushes, unmedicated - but with 2 more bags of penicillin! He tried to nurse and kept going off. I didn't realize then that my breast milk was probably useless after all those drugs and antibiotics. I kept trying but by 3 weeks, he was on a bottle. That's when the bad stuff started. Formula caused instant hives to break out on (Cx)'s face, he would start wheezing and coughing and projectile vomiting. I was told to get a hypo-allergenic formula. That did the same thing.
We visited Dr. (Fx) and he told us that children who are seriously allergic to milk are even allergic to the broken-down proteins in hypo-allergenic formulas and we switched to soy. That did work better. But, at 4 months old, (Cx)had another round of vaccines. These made him so sick, and his wheezing and coughing were so bad, that I was constantly in the bathroom with him with the shower on. We took him to Dr. (Kx) (on advice of Dr. (Fx)) and Colin started a regimen of nebulizer treatments with Albuterol and cromoline sodium up to 6 times a day plus Atarax - an antihistamine that was good for calming the hives. We did this for 3 years. Rast tests were done and the Dr.'s conclusion was simply that (Cx)had no immune system. He thought that it would develop in the next 3 years and advised us to be careful to ensure that he was fed nothing that could cause a potential allergic reaction. I became such an expert on every single ingredient in food! Once by accident, (Cx)was fed a children's biscuit and had a bad asthma attack. It turned out it had whey in a minor ingredient. We ended up at the hospital. We had to keep Jr. EpiPens with us at all time.
True to Dr. (Kx)'s prediction, at 3 years old, as (Cx)s immune system was hitting the normal "next stage" of development, his allergies suddenly went away. It seemed impossible - but now looking back I can see that this is just another proof that he was simply born with a destroyed immune system.
As for the vaccines - we are convinced that vaccines and particularly the MMR caused (Cx)'s older brother to become "more" autistic. Despite arguments with the pediatrician to the contrary, I insisted that we stop the normal vaccine routine and I did take him for shots, but only if they were done separately, everything was at least one month apart and only if there was no sign (not even a runny nose) of any illness. It was obvious the vaccines were a stress to his system and we spilt them up so they would be as little stress as possible. Honestly, he's had almost everything typically required, but by an odd course. Funny, his pediatrician thinks I'm "nuts."
So, 3 years old and allergies are gone. We started pre-school. It became very obvious once (Cx) was away from our rather structured and safe home environment that he had "issues." We couldn't quite place it - he was calm and quiet at home and mostly so in church (do you know any young children that actually sit through an hour + service?) so we really couldn't fit the ADHD thing. Aspergers didn't seem a fit because (Cx) had an early and very good sense of humor, good eye contact, very pragmatic use of language and was very observant (almost psychically so) of people's body language, voice tones, etc. There simply were none of the communication deficits we saw in his older brother.
This is when I started researching SID. Boy, did that fit. And truthfully, he has more sensory issues than his brother. However, the autism spectrum lurks close and I do believe that controlling vaccines, using dietary supplements (DHA, EFA, vitamin B, Zinc, A/C/E, magnesium and acidophilus) - and also avoiding food dyes - has helped a lot to keep him functioning more typically. Why would so many SID and autistic kids respond to these kinds of diet and supplement interventions?
I posed a question to a SPD/SID board which I have frequented for a few years. 70% of these moms with SID kids had either had GBS and IV antibiotics or their children had developed issues that required many antibiotics in the 1st year of life. Others had birth trauma. This seemed like too big a consequence for me - so I did a little more research. According to the CDC and other resources, autism started increasing at an alarming rate in the 1990s. Actually they have tracked it to pin it down specifically to "refute" the link to Thimerisol in the MMR. But, guess when they started routinely giving mothers with GBS large doses of antibiotics? Yup - the 1990's. And to add to that fact that strikes me squarely between the eyes, as the use of antibiotics for GBS has increased, strep-related infections in infants has decreased but gut infections have increased in the same proportion!
I read this stuff and said "DUH!" Perhaps the vaccines alone don't cause the damage - but piling vaccines, or food dyes or the many other toxic possibilities in today's life into a child who is born with a wiped-out immune system: What do they think is going to happen? I have only to see how far backwards my son has slipped these last 10 days to be CERTAIN that had I allowed them to pile on the vaccines in normal fashion during the time his gut was so severely compromised we would have a fully autistic child.
I tried e-mailing CDC about this. Of course no response. I tried talking to a good Dr. friend of mine (a Rheumatologist) and she says she really doesn't know how to get this information to the attention of the right people. I mentioned this to (Bx)and she suggested I tell you my story.
So there it is, a long story from a dedicated, been-there-done-that mom who has enough of a brain to want to research these things for herself and get answers. If you have any ideas about how I could get this information out, how we could find out how many more GBS moms have neuro-affected kids, or how we could get someone who mattered to listen, I would surely appreciate it!
Best Regards,
(Jx)

It's a possibility worth exploring.
Our family happens to be the opposite!
My child with ADHD, Aspergers, SID and such had a completely natural childbirth--no drugs or antibiotics. He is also a very healthy child, very rarely on antibiotics. He just never gets sick, even when the rest of the family is!
My last child was born with the help of Pitocin, and also since I tested positive for GBS I was on antibiotics during labor. He had MANY ear infections his first two years, so he was on antibiotics quite often. Yet he is the most wonderful, perfect child--no developmental or behavioral or learning problems.
I personally think it's just genetic. But good luck with your letter.
For the most part all the information that is needed is already collected by doctor's, schools, etc and reported to many different agency's like the CDC and such.
The pure fact of the matter is that a vast majority of children in special education in general had difficult and complicated births and difficult 1st years. To go along with your information, it hsouldn't suprise you that in the same time frame premature birth rates have gone up significantly, the number of c-sections performed has gone up significantly, and the survivial rate of preemie babies has also increased significantly (baiscally smaller and younger preemies are now surviving where 20-30 years ago they didn't make it). You further add in better understanding of many different conditions and a more willingness to label or treat conditions and the picture drastically changes.
It is often wondered in my family if the experience in having my oldest DS is the direct cause of what's going on. Long story short it was a mess, I was very very sick and no one will ever know how exactly how my condition, the pitiocin, the mag sulfate, etc ended up affecting him besides the low body wieght etc... he also had heavy doses of antibiotics his first year (periorbital cellulitis at 5 months old and then 5 months of ear infections following that).
In a way we blame some of it. We figure all the ear infections as a baby made him ultra senstivie to having his ears touched, which made it difficult (or impossible) to brush his hair, wash his hair, or get his hair cut (but we did finally make it through it) It has also been brought up many many times that becuase of my illness his brain was not able to develop fully and thus certain areas were denied oxygen/blood in order to send it to more needed areas. Other parts of it are simply just hereditary.
There are always studies being done on different things through research hospitals, NIH, CDC, etc... They are started by researchers stumbling onto something who want to see where it goes and also organizations pursuing avenues. It is also quiet possible that a study has been done or is underway on your subject right now.. It can be difficult to track down the information.
Jackie,
This rocks. Thanks for sharing. You need to re-"name protect" the doc though. You missed a few "Colins"!
OMG what a nasty experience you had during labor! I had GBS, IV anitbiotics and picocin during Peter's (17.5 hr) delivery. He is definitely my most impacted child.
Food for thought. Much, much food. Thanks.
-Paula
visit my blog at www.onesickmother.com