Neurodevelopmental Disorders and H1N1

[degarrettjones]

I'm sure most of you have seen the latest AP article reporting that two thirds of the children lost to swine flu had neurodevelopmental disorders of some type. According to the article, during a regular flu season, a third lost to flu fall into this category. Scary and confusing! DS, who has dyspraxia, SPD, and CAPD, may also have inherited my asthma. We've been working hard on improving his immune system, but are not sure it's strong enough to weather this. We've decided against the vaccine. Now what? Do we take our chances and keep him in therapy and preschool, or pull him out for the flu season? Tough call.

For those of you whose child(ren) have a neuro disorder, what, if anything, special are you planning to do?

[kittynurse]

I haven't seen that article - would you mind posting a link? I would love to read it.

Martha

[degarrettjones]

Sure, Martha! I searched for "swine flu and neurodevelopmental disabilities" and found it copied on several sites. Here's one:

http://media-dis-n-dat.blogspot.com/...-who-died.html

[degarrettjones]

Disability News also commented on it and posted a link to Special Ed guidelines during a swine flu outbreak:

http://www.patriciaebauer.com/2009/09/09/cdc-swine-flu/

[Mamatohaleybug]

Thank you for asking this question and posting the links. I hadn't heard this. That's a bit alarming to me. I need to digest it a bit.

[degarrettjones]

You're welcome, Momtohaleybug. Thanks for taking the time to reply. I hope you'll come back and post your thoughts once you've had time to digest the information. I'm not normally an alarmist, but I do know that poor immune systems and neuro disorders seem to go hand-in-hand, and that my little guy has trouble even kicking a cold, so I'm very interested in hearing everyone's thoughts and plans and even immune-system boosting regimens.

[2boyzmama]

I think that it's more of the horrible catch-22 I'm experiencing constantly with my son His syndrome and accompanying immune deficiency put him at greater risk of contracting an illness and of having serious side effects. I know that. I'm not being an ostrich with my head in the sand. BUT, his syndrome and accompanying immune deficiency ALSO make him more susceptible to serious reactions to vaccines, AND leave him less able to mount an appropriate immune response to the vaccine!

I'm envisioning a lot of missed school/therapy for him this winter, unfortunately, but so far our decision is NOT to vaccinate him. I would consider vaxing him against the regular flu before I'd consider vaxing him against H1N1, just because that vaccine is way too new and undertested for my liking.

I'm going to be adding extra garlic to our food, finding him good sources of natural Vit C (apricots, spinach, broccoli), and getting him as much natural Vit D as possible. I am even considering supplementing him with Vit D possibly, I hate supplementing with anything aritifical, but if I can't get him outside enough to get natural Vit D exposure, then I will do it.

I'm definitely not looking forward to this winter

[QueenOfTheMeadow]

I honestly don't know how good this sight is, but I was concerned about asthma and whether I should get the vaccine for ds1. I found this link regarding the risks.

http://www.sciencedaily.com/releases...0519172045.htm

It also contains thimerasol, so I know tbat my son has a very sensitive system and has trouble in detoxing his system, so I worry about that as well.

[degarrettjones]

Thanks, 2boyzmama! I'm sorry you're feeling the same anxiety I am, but happy we have the internet to help us share ideas and agnst! There's NO WAY we're getting the swine flu vaccine. We just cannot do it. DS's immune system has been damaged enough, and I just cannot take anymore chances with it. We've worked hard over the past few years to try to boost DS's immune system and we've made great strides, but we're not there yet. His undereye circles are gone and he's not getting sick every other (literally!) week, but every virus he gets goes straight to his lungs and this flu scares us. We've already rejected his doctor's suggested plan of giving him a preventative daily dose, via nebulizer, of a steroid (are you kidding me?!!!), but I know first-hand (I have asthma myself) how hard it is for someone with weak lungs to kick an upper respiratory virus once it settles in.

We're doing garlic, vitamin C, multi vits, fish oils, probiotics, and have recently started vit D after realizing that daily exposure to sunlight due to swimming every day this summer stopped the constant illness. We're taking Dr. Mercola's advice to take 2,000 IU (5,000 for adults) of vit D daily for 2 months and then have our vit D levels checked. We think we'll order the vit D testing kits via the Vit D Council for this. Does anyone have any experience with these? Also, does anyone have advice or experience with olive leaf extract as an antiviral?

[degarrettjones]

Thanks, QueenofTheMeadow! That certainly strengthens our decision not to vax against this bug! I have had asthma all of my life, and DS is suspected of having it, so we really don't need to risk this!

Now, if only I could decide whether or not to stick with preschool! So hard!

[heatherdeg]

We're doing vit. C, probiotics, fish oil, vit. D and daily dose of Sambucol (black elderberry extract--proven in two double-blind clinicals to tackle flu).

Running now but will be back to read everything else. Disturbing.

[degarrettjones]

Heatherdeg, thanks for posting! How much vit D are you taking? Have you had - or will you have - your levels tested? If so, how and where?

[QueenOfTheMeadow]

Originally Posted by heatherdeg

We're doing vit. C, probiotics, fish oil, vit. D and daily dose of Sambucol (black elderberry extract--proven in two double-blind clinicals to tackle flu).

Running now but will be back to read everything else. Disturbing.

Sambucol is awesome!!

[Eman'smom]

Originally Posted by heatherdeg

We're doing vit. C, probiotics, fish oil, vit. D and daily dose of Sambucol (black elderberry extract--proven in two double-blind clinicals to tackle flu).

Running now but will be back to read everything else. Disturbing.

Do you have a link to the Sambucol studies/trials?

[Wendydagny]

Based on reading the article about flu shots and hospitalizations, it's a flawed comparison. It says that there is NO difference in hostpitalization rates for children with asthma who do/don't get the shot. The difference is between ALL children who do/don't get the shot. The percentage of children with asthma and other chronic health conditions is (probably significantly) higher in the vaccinated than in the unvaxed group, so it follows that there would be more hospitalizations for the vaxed group because it contains far more at risk kids. The at risk kids are also the least likely to develop good immunity from a vaccine because their immune systems are often compromised. Clear as mud?

In other words, the vaccine is not the cause for the increased rate of hospitalization. Being a member of the risk group that "requires" the use of the vaccine is the cause.

[OMama]

Subbing. . .

[sbgrace]

I think my kid with the metabolic condition is less at risk than his healthy but asthmatic (not well controlled this summer at all) asthma.

We're limiting contact to some extent.

[degarrettjones]

Originally Posted by Wendydagny

Based on reading the article about flu shots and hospitalizations, it's a flawed comparison. It says that there is NO difference in hostpitalization rates for children with asthma who do/don't get the shot. The difference is between ALL children who do/don't get the shot. The percentage of children with asthma and other chronic health conditions is (probably significantly) higher in the vaccinated than in the unvaxed group, so it follows that there would be more hospitalizations for the vaxed group because it contains far more at risk kids. The at risk kids are also the least likely to develop good immunity from a vaccine because their immune systems are often compromised. Clear as mud?

In other words, the vaccine is not the cause for the increased rate of hospitalization. Being a member of the risk group that "requires" the use of the vaccine is the cause.

Thanks! A good distinction to make.

For people with compromised immune systems, especially, this seems to be a darned if you do and darned if you don't scenario. We know we won't be getting this vaccine, and I'm heading over to the H & H board to start educating myself more about boosting our immune systems more. Looks like a lot of discussion over there about Sambucol/elderberry, etc., that I need to read.

Anybody thinking about just hunkering down and skipping preschool and/or therapy? DH just talked to DS's developmental preschool this morning (can you believe we're all home sick with some kind of virus?!) and they were unaware of the stats I quoted in my original post.

Thanks so much to all of you for posting.

[QueenOfTheMeadow]

Originally Posted by Wendydagny

Based on reading the article about flu shots and hospitalizations, it's a flawed comparison. It says that there is NO difference in hostpitalization rates for children with asthma who do/don't get the shot. The difference is between ALL children who do/don't get the shot. The percentage of children with asthma and other chronic health conditions is (probably significantly) higher in the vaccinated than in the unvaxed group, so it follows that there would be more hospitalizations for the vaxed group because it contains far more at risk kids. The at risk kids are also the least likely to develop good immunity from a vaccine because their immune systems are often compromised. Clear as mud?

In other words, the vaccine is not the cause for the increased rate of hospitalization. Being a member of the risk group that "requires" the use of the vaccine is the cause.

Good point. I hadn't thought of that. So they would have to do a study of kids with asthma that got the vaccine to kids with asthma that don't to really make the comparison, instead of kids in general who get the vaccines.

[degarrettjones]

Originally Posted by sbgrace

I think my kid with the metabolic condition is less at risk than his healthy but asthmatic (not well controlled this summer at all) asthma.

We're limiting contact to some extent.

Yeah, I know the asthma factor makes it even scarier. I was diagnosed as a toddler and any virus always shut me down much longer than for most folks, but have since gotten it under control, for the most part. Best wishes to you for getting a handle on it soon!