Neurodevelopmental Disorders and H1N1 - Mothering Forums

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#1 of 52 Old 09-11-2009, 12:34 PM - Thread Starter
 
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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?
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#2 of 52 Old 09-11-2009, 12:59 PM
 
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I haven't seen that article - would you mind posting a link? I would love to read it.

Martha
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#3 of 52 Old 09-11-2009, 01:05 PM - Thread Starter
 
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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
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#4 of 52 Old 09-11-2009, 01:16 PM - Thread Starter
 
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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/
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#5 of 52 Old 09-11-2009, 03:06 PM
 
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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.
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#6 of 52 Old 09-11-2009, 04:37 PM - Thread Starter
 
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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.
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#7 of 52 Old 09-11-2009, 05:05 PM
 
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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

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#8 of 52 Old 09-11-2009, 05:29 PM
 
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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.

 
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#9 of 52 Old 09-11-2009, 05:31 PM - Thread Starter
 
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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?
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#10 of 52 Old 09-11-2009, 05:36 PM - Thread Starter
 
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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!
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#11 of 52 Old 09-11-2009, 07:24 PM
 
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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.

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#12 of 52 Old 09-11-2009, 07:48 PM - Thread Starter
 
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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?
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#13 of 52 Old 09-11-2009, 07:53 PM
 
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Originally Posted by heatherdeg View Post
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!!

 
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#14 of 52 Old 09-11-2009, 09:12 PM
 
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Originally Posted by heatherdeg View Post
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?

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#15 of 52 Old 09-11-2009, 09:56 PM
 
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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.
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#16 of 52 Old 09-11-2009, 11:22 PM
 
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#17 of 52 Old 09-12-2009, 12:46 AM
 
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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.

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#18 of 52 Old 09-14-2009, 11:38 AM - Thread Starter
 
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Originally Posted by Wendydagny View Post
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.
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#19 of 52 Old 09-14-2009, 11:44 AM
 
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Originally Posted by Wendydagny View Post
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.

 
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#20 of 52 Old 09-14-2009, 11:45 AM - Thread Starter
 
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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!
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#21 of 52 Old 09-14-2009, 11:50 AM
 
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Hmm,actually, as I am re-reading the article it looks to me that they did do this comparison.

Quote:
They found that children who had received the flu vaccine had three times the risk of hospitalization, as compared to children who had not received the vaccine. In asthmatic children, there was a significantly higher risk of hospitalization in subjects who received the TIV, as compared to those who did not (p= 0.006).
So they did compare asthmatic children who got the vaccine to asthmatic childre who did not.

 
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#22 of 52 Old 09-14-2009, 11:55 AM
 
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Can I just say that this one has me really nervous?

I am highly ambivilent about the vax, although I am currently on hold to get my pedi's office reccomendations!

DS, 7, has asthma, which was great all summer, but he's very slightly wheezy in the mornings now and probably needs nebs. He already has a cold which is hanging on. Ughhh.

I am overwhelmed by the articles, and I just can't be totally in the no-vax camp yet. We do everything possible to protect immune systems here, but asthmatics get SICK with resp. illnesses. I will be following this thread.
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#23 of 52 Old 09-14-2009, 11:59 AM
 
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Can I just say that this one has me really nervous?

I am highly ambivilent about the vax, although I am currently on hold to get my pedi's office reccomendations!

DS, 7, has asthma, which was great all summer, but he's very slightly wheezy in the mornings now and probably needs nebs. He already has a cold which is hanging on. Ughhh.

I am overwhelmed by the articles, and I just can't be totally in the no-vax camp yet. We do everything possible to protect immune systems here, but asthmatics get SICK with resp. illnesses. I will be following this thread.
It is so hard to make this decision. My 10 year old is home from school right now with a cough, cold, sore throat, and lst night he had mild wheezing. He is also the one with special needs. My other two boys got the cold, and are already feeling better. Neither of them needed to stay home. So I worry too. I'm leaning toward no vaccine, but I need to do some more research.

 
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#24 of 52 Old 09-14-2009, 12:13 PM - Thread Starter
 
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Thanks, Karne and Queen! Would you mind coming back here to post any other thoughts and decisions, and to share anything else you find that might help the rest of us make decisions? I'm truly freaked out! DS only seems to have a cold right now and even so hasn't been able to sleep, due to coughing, for the past 3 nights. I want to hide him and his weak little lungs until next spring!
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#25 of 52 Old 09-14-2009, 12:15 PM
 
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Well, my pedi's office doesn't offer a reg. flu vaccine until Oct. Flu is already here, so that timing, should you want to vax, seems odd. They have no established position on the H1N1 vax yet, and said they are waiting for firmer guidelines. I had heard that if you have the flu now, it's likely H1n1, so what good would a reg. flu vax do anyway?

I am not a pro-vaxer. But, my child has gotten very, very ill with just regular colds, while we use all manner of immune boosting interventions. Such a worry.

Thanks QueenoftheMeadow for the hug!
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#26 of 52 Old 09-14-2009, 01:19 PM
 
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I am getting the vax for my asthmatic kid. I just have been too frightened by the reports of secondary bacterial infections, since DD is very prone to these.

Quote:
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?!!!)
I don't know how severe your son's asthma is, but you may have no choice but to give oral steroids at some point, and trust me, those are much, MUCH scarier than the inhaled kind.

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#27 of 52 Old 09-14-2009, 01:33 PM
 
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I have asthma ...

My oldest son has cp and autism. I'm confused as to why the flu would be worse for kids with neurdevelopmental disorders.
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#28 of 52 Old 09-14-2009, 02:11 PM
 
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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?!!!),
This is actually a routine tx., in our experience, for kids w/serious asthma. I agree w/loraxc. Inhaled are a lot easier on my ds than oral. Albuterol is really a "rescue" medicine. The steroids keep the airways open and less inflamed. If your child needs them, he needs them. I know these meds are scary, but at least they are there.
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#29 of 52 Old 09-14-2009, 02:17 PM
 
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I'm also curious about the link between neurodevelopmental disorders and being more prone to this illness or any other. Maybe my DD is just not the norm, but besides the neuro problems and food allergies, she is extremely healthy! She's maybe had two colds in her life, and that's about it. And I'm probably one of the most lax mom's about handwashing and things like that. Am I just extremely lucky or has she just not been exposed to much?

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#30 of 52 Old 09-14-2009, 02:29 PM
 
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I'm also curious about the link between neurodevelopmental disorders and being more prone to this illness or any other. Maybe my DD is just not the norm, but besides the neuro problems and food allergies, she is extremely healthy! She's maybe had two colds in her life, and that's about it. And I'm probably one of the most lax mom's about handwashing and things like that. Am I just extremely lucky or has she just not been exposed to much?
I was going to say this as well. My autistic/cp son is more healthy than my other two kids. Other than one type getting strep, and several colds (years ago) ...he is now in school, exposed to a lot, and is rarely sick. He seems to get stomach viruses more than resp. infections, too. I do give him a lot of supplements (lots of emergenc) ... maybe that is why???
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