H1N1 and CP

• By Sasori
• Posted September 5, 2009 at 6:20 am
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If it makes you feel any better, I know of brothers, both with very severe CP (no seizures tho, seems they have an extremely rare form of CP caused genetically), neither are mobile, and one suffers terribly with anything that effects his lungs - he'll have chest infections for weeks. The other (elder) brother got the swine flu and was quite bad but got through it without hospitilisation. As soon as the Mum recognised it was most likely swine flu (as opposed to a cold etc) she took Tamiflu along with the younger brother as soon as they developed the first symptoms and they both had only very minor symptoms (compared with older brother and Dad). Same thing in NZ - CP sufferers more likely to be severely effected or die. These kids are sadly more susceptible to these kinds of problems, but as I understand it, the more mobile they are, the better. Be vigilant, get hold of some Tamiflu if you can (hate to say it, as I reckon it's overpriced and a bit of a scam but it's the only thing out there) and keep the kids up with their hygiene (washing hands, coughing into elbows etc etc). Good luck!

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• By Dancie
• Posted September 8, 2009 at 4:48 am
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My older son came home from school yesterday with flu symptoms and of course I am pretty paranoid about him passing it onto my younger son who has CP. I asked advise from the health line and was told that unless Joseph (older son) had symptoms of an additional complications such as problems breathing, swallowing, extremely high fever or discharge from nose or mouth that was very green, that I should just look after him at home, but as my younger son was in a high risk group, if he developed any flu symptoms I should get him checked out straight away. The statistics are pretty small of anything going really wrong, but I guess as parents of children who have had something go really wrong we're entitled to be a little paranoid!!

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• By lalacakes
• Posted September 8, 2009 at 8:23 am
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Thanks for you replies ladies! I talked with a friend of mine who is a Physician's Assistant and she explained things much like you did Sasori...that the limitation of mobility has such an effect on the lungs that they are more susceptible than those that are more mobile. My son army crawls all of the place so he is somewhat mobile but nothing like what a 2-year-old without issues would be doing. When it was explained to me like that then it was like the lightbulb went off. I wasn't thinking about the connection that CP would have on mobility and how that would impact the respirtory system...I was trying to figure out how the damage done to my son's brain would have anything to do with H1N1. Now I get it!

The thing with my son's seizures is that we don't know all of the things that could set one off. He doen't have a seizure disorder and his doctor said that he is really too young to start on medication (not that he couldn't start but that they have a really hard time finding the correct combination of meds work for children as young as Jacob) so we are holding off on doing that. We are also holding off because the meds given for seizures cause developmental delays and he is already delayed. So, knowing that lack of sleep has brought one on and that a stomach virus did as well, we get really worried if he gets a fever of any kind, even low grade. The really hard part about the seizures are, aside from seeing your child have one, is never knowing when it could happen. His were both at night. The first time he was laying next to me in bed and I heard it right away and the second one I wouldn't have heard if I hadn't gotten up and was standing right next to his monitor. I heard a very faint, repetitive sound and knew right away what it was. I am so worried #1 about him getting the swine flu and #2 if he were to get it, could it bring on a seizure.

I am going to need to be extra, extra cautious this year. I have already started with my older boys. They have been really good about washing their hands before they touch him. They have been washing their hands as soon as they get home and I am going to have them change their clothes when they get home too. Yea, more laundry! Oh well, anything to keep everyone safe!!!

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• By halog
• Posted October 19, 2009 at 1:03 pm
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I am very fortunate to have a 12 year old son with very mild CP. He has a vp shunt that has only been replaced twice in 12 years. Where we live, the H1N1 nasal vaccine is being offered to him. I keep reading different information regarding the safety of the nasal for children with CP. I don't know what to do. Should I wait on the shot form that may or may not get here soon enough or get him the nasal?? I appreciate any help that can be offered. My son runs and plays and rides bikes, swims, rides horses, etc. Just not as well as others.

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• By Sasori
• Posted October 20, 2009 at 5:55 am
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A friend of mine with a very severe CP boy got swine flu. The dad got it too. As soon as they realised, the mum and the brother (even more severe CP sufferer) took tamiflu (capsule form) and neither got it, or got a much reduced version - but she was pleased she'd taken the tamiflu.
i'd wait till he gets swine flu and buy then, but guess it depends on how much of a 'scare' is happening over there with you guys going into winter now. Not cheap either I suspect....hmmmm.
Perhaps some American mums can help?

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