Monday, September 7, 2009

Swine flu and kids with cerebral palsy, epilepsy and developmental delays

Hope everyone's enjoying the long weekend! Max is back to school tomorrow. He shakes his head when I ask if he wants to go to school; the kid's had an entirely too-fun summer. He's gained a few pounds, and I'm sure it's from all the chocolate ice-cream; it looks way better on him than it does on me.

I'm a little worried about that damn flu and all the lovely germs that will surely be flying around school. As a kid with cp, Max is in the high-risk category; a report came out this week that kids with "neurodevelopmental conditions"—including epilepsy, cerebral palsy or developmental delays—are at higher risk for getting it. I'm feeling a little envious of homeschooled kids right now.

I've already gotten both kids the regular flu shot, and I've made sure Max will be at the top of the list when the swine flu shot arrives at the doctor's office, supposedly sometime mid-October. To quote a doctor from the U.S. Center for Disease Control and Prevention, kids with underlying medical conditions "are at the front of the line for vaccination when it becomes available."

So, I'm concerned, but I'm not panicking; most kids get only mild cases. The CDC is saying complications from the H1N1 virus are similar to ones from the typical seasonal flu. The main difference is that the swine flu has a higher rate of affecting kids five and older.

A while ago, I did a post on how I'm not germphobic. On Saturday, I went to Costco and got The World's Biggest Bottle of Hand Sanitizer. I'm not going to bathe the kids in it or anything, but you can bet I'll be slathering it onto their little hands and mine pretty regularly.

Like we don't have enough to worry about!!!


  1. I hear you on the swine flu. Being pregnant I've been double worried.

    We've been lucky around our way and kept ourselves flu free. I am hoping now that our winter is over we can start to breathe a sigh of relief!

    I hope you're able to avoid it too.

    Hope Max has a great day back at school tomorrow!

  2. Hi im really worried about swine flu aswell im in the uk and my son has cp and my daughter has asthma, so where ever i go my hand gel goes with me.

  3. The flu shot scares me more than the flu...we we will be risking it this year. I am nervous about it, but only because there is so much hype about it...I believe there is some sort of conspiracy theory with the drug companies...lets freak everyone out about the flu so they will come in and get our *experimental* vaccine!

    Plenty of handwashing and sanitizer gel goes a long way!

  4. I agree, scarey stuff this flu with underlying neurological conditions.

    I have been dreading this flu season here too!

  5. I'm a little antsy about this flu too... and it takes a lot to get me antsy. We see Graham's surgeon next week, so I'm gonna pick his brain about it.

    I know Graham will get the vaccine, and as a nurse, I will too.

    I just wish he wasn't such a grubby little thing always with his fingers in his mouth, up his nose, etc....

    I'm always on the lookout for that 100 gallon bucket of Purell in which to dunk the kids.

  6. Are you reading my mind or what? These very issues have been on my mind in a big way lately!

    I am with those who are worried about the shot (or will it be shotS??) because it's been rushed into production with abbreviated testing, but what can you do? You have to be proactive when it comes to taking care of your kids, unless you want to lock them into a sterile environment and not allow them to live. It's a risk either way, I guess. Cross those fingers, do what needs doing, and hope for the best, I guess.

    I just hope they do a better job on the vaccine this time than the last time they tried to produce a swine flu vaccine.

  7. I think I'll need to get another giant bottle of hand sanitizer before school starts, too. I will admit that I AM a bit germaphobic.
    I am worried about the swine flu, but really not any more than I am about the regular flu. A high fever for Daniel means higher risk for seizures, even though he doesn't have epilepsy. I don't know if bathing him in hand sanitizer is going to do the trick, though. Did you see any human - sized hamster balls at Costco? I may need to pick one up before Daniel starts school on Wednesday.

  8. I am nervous too...Kennedy starts school tomorrow and that makes me more nervous. I am glad she is in tiny classroom, so that helps. We already pulled her last year when it was going around. I am nervous with the vaccine too...She will probably get it though, as I would feel really guilty if she got sick and I skipped it.

  9. I just bought the big three pack of antivirus towel wipes at Costco. You just feel better holding that baby in your arms! I think everyone has concern, but the hype scares us too. I have gone on line and read the facts from quality medical web sites. I believe the media tells us the "scary" things only. Like I just heard a college in our state had 2,000 cases (they also said in the town). However, they never said if anyone was hospitalized, etc. I say be prepared, have a plan, talk to your doctor and use common sense. Before this I saw MANY kids pushed onto the bus in the morning with fevers! Maybe some parents will actually be responsible???

  10. Something to think about: I read about the swine flu "issue" in the seventies and more people died from the vaccine than the actual virus. I am a nurse and a mother of a child with special needs.. and we have been vaccinated for EVERYTHING... but that "everything " has been tested and around for a while. It scares me that they are shelling these vaccines out so quickly!

    What do you think?

  11. Thanks for posting this. I didn't know. My husband and three kids all had swine flu after a trip to DisneyWorld. Luckily Jake didn't get it.

  12. I'd like to throw in two cents here:

    1. Washing your hands with warm/hot water is even better than the hand gel.

    2.I'm going to buy elderberry extract NOW because it's supposed to reduce the length of symptoms by up to half.

    3. I'm not comfortable with new medicinces/vaccines--I want someone else to be the guinea pig.

    We thought Charlie had the flu, but I'm kind of doubting it now. HE had a fever, but it didnt' really seem bad enough to be the flu. Of course, he's a tough cookie so maybe it just didn't bother him that much.

  13. Found your blog via 5 Minutes for Special Needs. Love your Mommy Confessions.

    I am not a germaphobic person by any means but then again I do not have immunosuppressed child.

    The Swine Flu does not worry me anymore than the flu. Handwashing is one of the biggest keys in my humble opinoin.

    Question: You said children who are development delayed are part of the high risk group for Swine Flu. Really? I am curious as to why, could you please send me in the direction of where I can read more info on this. Thanks.

    Great blog, btw.

  14. Thanks, ibeeeg. I do not know much more about developmental delays; I think the bottom line is the developmental delays CAME from having an underlying condition like cerebral palsy. Here's another article from US News & World Report that mentions the delays (though it doesn't explain why):

    You raise interesting questions and doubts about the new vaccine for the swine flu, and the fact at how rush-rushed it's been. I am still leaning toward getting it. I guess you have to know what kind of kid you have, and Max picks up colds and other viruses relatively easily. Thankfully, neither kid had any side effects from the regular flu shot they got this past week.

    Katy, thanks for the elderberry extract tip—homeopathic remedy, right? At your advice, I'll get some, I'm all for natural medicine.

  15. I'm delurking to say that I'm terrified of my special needs child getting swine flu as well, but also wanted to point out it's important to be be careful with the hand sanitizer. Children can actually get alcohol poisoning from it very quickly and with small amounts. It's actually killed a few toddlers from alcohol overdose. Sorry, I know, just one more thing to worry about.

  16. Forgive the length of this comment, but I thought I'd share with you a letter from our pediatrician. I have a daughter who developed severe epilepsy after her first round of shots when she was two months old. As a result, our two boys(neurotypical)have not been vaccinated (on the advice of physicians who agree that there might be a genetic proclivity toward seizures, etc.) And lest you think I'm some sort of anti-vaccine freak, I'm not. All three of my children get normal colds and flus and all that stuff. The daughter with neurological issues might suffer more than my sons, but because her general health is strong, she usually fights through it. They visit the doctor but, more importantly, the osteopath, and take preventive and natural medicines and herbs. As a result, they have never been on an antibiotic (despite ear infections and the usual childhood illnesses).
    Because the letter is long, I actually can't post it here but you can read it at

    I think all parents, especially those with special needs, should educate themselves about all of these things and read everything they can. I do know, as well, that as mothers of special needs children we will make the most informed decisions for our children. I hope you find this helpful as you navigate the flu season! And may everyone stay healthy!

  17. Ellen,
    I had the H1N1 (swine flu) 2 wks ago! I was soooo sick, but when I was dxed we went straight to the ped. and got a prov. dosage for Faith and Carl! Neither one of them got it! It was Tamaflu and they had to take a dose every day for 10 days! But I was sooo worried! My sister and her whole family had it and I got it from them. Now I heard that Carl's sister's baby boy has it, too! Scary!


Thanks for sharing!

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