Friday, November 7, 2008

FluMist: A (very) Cautionary Tale


As the flu season is upon us, I want to share our family's terrible experience with the nasal FluMist so that hopefully other children and families can be spared from a similar nightmare.

Last year we gave our 4.5 year old son the new nasal FluMist which is being marketed aggressively to young children as a seemingly "safe" alternative to the flu shot. It supposedly does not have Mercury like other flu shots and is very easy to administer as it is simply inhaled, avoiding a painful shot (which could seem to be a good thing with young children). What we did not realize is that it is a very powerful live virus and has some very, very bad preservatives, such as MSG. Worse of all, it contains Polysorbate 80 which breaks through the blood/brain barrier in order to penetrate the brain directly!

One week after receiving the FluMist, my son had a very severe Autistic regression. Previous to the FluMist, our son had some very mild sensory integration issues, mild fine and gross motor delays and a slight receptive/processing language delay. His expressive language was very strong (huge vocabulary, non-stop talker…). He was a very happy, affectionate, completely related little boy who loved creating complex imaginary play scenarios, did a great job sharing with other kids and did well in a general ed school environment. He never had tantrums or any real behavioral issues. Many professionals highly experienced in developmental issues with children had told us that he was no where near to being on the Autistic spectrum...

Days after taking the FluMist, our son suddenly began seizing and became completely non-verbal. He had severe explosive tics, began stimming (hand flapping, spinning, chewing on everything), he completely stopped playing with peers (and began grabbing toys and hitting), had severe and frequent meltdowns for no reason at all, he mindlessly ripped up all his favorite books. Previously potty trained, he totally lost the ability to control his bowels and he refused to wear clothes and shoes, unable to understand the need to wear them even in public. He lost eye contact and refused to acknowledge the presence/gestures of affection of even mom and dad with whom he previously had an extremely loving relationship. Before, he constantly asked for us to play with him—now he did not even recognize our presence and would not allow us into his play, which suddenly consisted mostly of lining up and stacking objects. At the playground he had great difficulty navigating equipment he’d been playing on for years, he misjudged distances, banged his head, slipped and fell constantly—even more troubling, rather than play he preferred to lie on the ground and stare at and stim on patterns in the sidewalk. A good sleeper before, he virtually stopped sleeping at night, waking constantly, often with terrible nightmares. Day and night he was riddled with unreasonable fears and anxieties, he had episodes of self-injury and could not stand any kind of noise, crowd, lights, etc. As he slowly began speaking again, he referred to himself in 3rd person (before he always said “I”). These were ALL new behaviors. It was horrifying and heartbreaking beyond belief. He was a completely different child! He had had a very strong, pretty well formed personality and I felt as though someone had snatched his soul away overnight. Needless to say, we rushed him to many doctors and all the best neurologists and we did a full EEG testing at NYU which was clear. No one had any answers. We were told he was now Autistic and that was that (by the way, none of the many doctors had ever themselves seen a similar case of a 4.5 year old suddenly becoming completely Autistic…it is VERY rare at such an advanced age.)

When we found some excellent holistic doctors, we began to understand better what was happening to our son. His first urine tests showed a level of 188 for glutamate. A normal level is between 12-30 as well as many other very interesting results. His brain was on fire. MSG is a very harmful, known excitotoxin* (see below for a little more information on excitotoxins)

I am thrilled to say that through a very aggressive bio-medical program (GF/CF, detox, enzymes & supplements, cranial-sacral, LOD and more to come!), just one year later, he has now almost completely recovered from this awful regression. He is now once again a delightful, fully verbal, fully related, mostly regulated and happy little boy who plays very well with other children and does extremely well in school in a mainstream inclusion environment. It's hard to believe the transformation and we thank God everyday.

Of course it has taken a tremendous emotional and financial toll on our family and it remains to be seen if there will be any permanent, long-term damage to our son. There are still a few certain elements of his personality that have not fully returned (he was VERY empathetic before, and now I’m happy to say he’s regaining this ability, but it’s still not at the same level as before) and there are certain skills (drawing more detailed pictures) which he has not fully regained… His ability to self-regulate remains somewhat diminished, comparatively speaking. On a good day he is regulated, overall. On a bad day he needs help with a sensory diet, and even then sometimes he loses it a bit in the harder transitions/moments. His immune system is clearly much more fragile than it ever was before and we do not know what the future holds…. We will never know how far along he would be developmentally today without this happening. It is also clear that he carries some pretty serious emotional scars from these events—he has many bad/scary memories of hospitals and doctors and a lot of fears about something being wrong with him…

But really, we count ourselves extremely lucky. And now we are very concerned for other families who might face the same terrible consequences of the FluMist. We feel honor-bound to warn other families of the potential danger and hope that something good for someone else can come from our awful experience. Of course it's a very personal decision for each family, and we respect that. I just want to ask people to consider the decision very carefully, particularly if their child has any sensory issues or developmental delays. I have heard so many parents say they are so happy that now there is a flu vaccination option that does not contain Mercury, but just beware that there are other very dangerous components to the FluMist! Also, one of the reasons that I decided to give the flu vaccination is precisely because our son had a weak immune system…he seemed to get sick at the drop of a hat. But I did not realize that that logic is faulty and one that causes many parents to make a similar mistake. If a child has a weak immune system, vaccines are even more dangerous as the body cannot deal with them in the proper way. Now I understand that a weak immune system in a child can seriously effect the brain and result in worsening neurological issues, therefore the focus should always be first and foremost, about strengthening the immune system—which does NOT mean bombarding it with a live virus, foreign proteins and a host of dangerous preservatives such as MSG….

I am certainly not an expert. I am learning all this stuff as fast as I can and pretty much flying by the seat of my pants as we go, but please, feel free to contact us anytime if anyone has any questions about our experience. We would be really happy to try to help!
clarkalisa@yahoo.com

*An excitotoxin is a name that is given to one of these neurotransmitter chemicals that comes from outside of the body and has an excitory effect. Over stimulation of the neurons causes them to fire repeatedly and can be damaging to the neuron such that it can die and types of brain damage will occur. Excitotoxins are not foreign, man-made drugs administered to the body but rather natural compounds identical to the brain chemical that are at levels above that normally found in the brain.

The most problematic excitotoxins are those that are amino acids, the chemical building blocks of proteins, such as glutamic acid, usually referred to as glutamate (monosodium glutamate or MSG is the commercial preparation used by the food industry), aspartic acid and L-cysteine. All are neurotoxic, but glutamate is the most potent.

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