Swineflu / Influenza A (H1N1) and PANDAS

[PANDAS_Denmark]

Hi all )

 

Does any of you have any thoughts or knowledge of how to cope with the swineflu/Influenza A (H1N1) epidemic in relation to your PANDASchildren ?

 

My concerns in relation to the flu (epidemic) is two :

 

1)

According to the experts (see for example Centers for Disease Control : http://www.cdc.gov/flu/professionals/fluga...in_medical.htm) people with immunological and/or neurological diseases are at greater risk of severe complications if infected with the influenza A (H1N1). I assume - but has not been able to verify this in details - that this i partly due to the cytokine storm, an (auto)immune reaction, that the flu is able to provoke/start.

As such our PANDASchildren is at higher risk than other - healthy - people if infected, due to the flu itself.

 

2)

On top of that, it must be reasonable to expect/fear, that the flu - as it is the case for many PANDASchildren when infected (and often also when just exposed) with other bacteria and/or vira) - might cause an explosion in PANDASsymptoms as well.

 

I have only had the opportunity to discuss my concerns with my sons doctor very briefly. The conclusion was, that I was right, that my 9 year old PANDAS son was both at greater risk of severe complications if infected with the influenza A (H1N1) AND it was reasonable to expect/fear, that the flu might cause another explosion in PANDASsymptoms as well !

 

Based on these conclusions we briefly discussed, if it was/is wise/safe to send my son to school, knowing that :

 

* the flu experts recommend to "limit contact with crowds and avoid crowded places" in an attempt not to get infected

* it is well known that schools are "perfect places" for bacterias and vira to spread

* several states/contries have decided - or still discuss whether - to close the schools for the very same reasons

 

However we didn´t reach a conclusion. Stated briefly the doctor on one hand stated, that he thought it would be wise to hometeach my son to try to avoid him from getting infected/exposed - on the other hand, that it is not a sustainable situation.

 

Does any of you have any thoughts or knowledge of how to cope with the swineflu/Influenza A (H1N1) epidemic in relation to your PANDASchildren ? And has any of you had the opportunity to discuss it with your PANDASexperts ?

 

Best regards

PANDAS_Denmark - a concerned mother to a 9 year old boy with PANDAS

[FallingApart]

I am so glad that you asked this question! I am scared to pieces about this. Our newspaper said that 1 in 2 will be affected by the swine flu this season. I hope that is being blown out of proportion, but I'm still terrified. My child is only 3, so we are just starting school for the first time next week. I'm looking forward to what others have to say.

 

But, I do have one thought/question. For those who are doing IVIG in the midst of this, do you think that will offer any additional protection for your child through this winter?

[dcmom]

I have also been thinking about this. I am trying to talk myself into remaining very calm though. I feel the media and the gov't tend to blow these things way out of proportion. They sound like drug pushers with this vaccine, and I am not buying.

 

I am going to do my best to disinfect the house, and us (when we come home) daily. I am going to keep my eye on how many kids are getting sick at school - if at any time it looks like a larger than usual percentage- maybe we will take a week or two vacation. My kids are young, 6 and 9, I have no worries about keeping them out of school if necessary.

 

I am trying to remain as clear headed and positive as possible- which is a challenge for any pandas parent

[thereishope]

Right now, in order to keep my sanity, is too try to believe the new pediatrician who think the swine flu will not be as bad as they think. I will send my kids to school (kindergarten and third grade), I will not send my 3 year old to any type of classes. The younger they are the more they put fingers in their mouth, sneeze everywhere, etc. I will not be frequenting play areas. My son will continue to pack lunch to minimize who touches his food.

 

I would suggest to limit flying so you are not breathing recirculated air. Remind your kids to cough in their elbow, not in their hand. And be aware of your child's overall health. Even though you need to bring your child to the doctor if they are sick, also use judgement. The doctor's waiting room is a breeding ground for spreading illness.

 

Finally, no one in my house is getting the swine flu vaccine. Even if PANDAS wasn't in our life...I don't trust it.

[EAMom]

I am pretty sure that both my kids (my husband and I may have had it too, but relatively mild symptoms) got the H1N1 from Disneyland in June. The kids had had all the symptoms (cough, 102 fever, etc.). When we got home and made it to the Dr., that was the first day the CDC had stopped testing...so we don't know for sure. My dd9 (pandas) did seem to take 1-2 days longer to recover than dd6. I would say she was sick about 5 days. PANDAS dd was pretty mellow during the actual illness, but once she was recovered she defintely had a PANDAS exacerbation. It was bad enough that we drew another Cunningham blood test (was really high at 247, was 165 in early April/no exacerbation) and started a 6 day steroid burst. I believe the steroids helped nip the exacerbation in the bud (perhaps keeping it from getting worse and worse.) We saw an improvement from the burst after about 2 weeks.

 

The funny thing is, it looks like H1N1 (we live in Northern CA) also just went through my PANDAS dd's class last week. On Tuesday, 9 of the 33 kids were sick with the flu. (I heard a couple tested positive for H1N1, but can't confirm...since my medical group isn't testing...don't know about others?). She also had IVIG 3 weeks ago...don't know if that helped too (in case it was a different strain of flu.)

[colleenrn]

We will not be getting the H1N1 vaccine. I am also worried about the flu, but much more worried about the vaccine.

 

For the past three years one or all of my children have had the type A influenza and I never noticed an increase in PANDAS symptoms (I know some PANDAS kids react a lot to viruses though). My 3 youngest had pertussis (whooping cough) and chicken pox last year and I also did not see and increase in PANDAS symptoms.

 

I highly recommend using oscillococinum at the very first signs of the flu. I have used it while pregnant with the flu and have given it to a 1 year old child. It is amazing- it cuts the viral load in half. It does not have any of the side effects you get from anti-virals (tamiflu).

 

I am using xylitol nose spray, toothpaste and gargle once a day with all of my kids. Xylitol has anti bacterial (strep) and anti-viral properties. We began this regimen on the first day of school last week. There are already several cases of strep in our elementary school. A bunch of my daughter's friends (8th graders) had H1N1 this summer and all recovered fine.

 

I am very afraid that they will try to mandate the vaccine. I think they are not going to say that until they have the vaccine in hand, which will be coming very soon. I am also afraid that when they start giving the nasal H1N1 vaccine which is a "live attenuated vaccine" that the kids getting it will have "viral shedding" b/c it is a live vaccine and my kids will be even mored exposed to the flu. I know they say you "cannot get the flu from the live vaccine", but I am not 100% convinced of that. I would LOVE any input about this issue!

 

Thanks,

Colleen

[thereishope]

You can spread the virus w/ a live vaccine. That's also why one should not get FluMist. That's why handouts for certain vaccines say do not get vaccine if around someone w/ a compromised immune system. I don't think they will mandate the swine flu vaccine. I thought they might pull it off, but the school district sent home a letter and it was very carefully worded. It sounds like they might offer the vaccine at school, but not require it.

 

In a personal conversation w / the kindergarten teacher, she remembered how when she was in school, they handed out the oral polio vaccine to all the kids in class to drink. My response, "yeah, now they know it can cause polio, and in turn, paralyze children".

 

If they do mass vaccinations at the school, I will pull my kids out for a week or so to let the contagious period run its course.I didn't realize it would be given as a live virus.

[colleenrn]

That is what I have been wondering about, researching about and agonizing about. If they give the nasally inhaled H1N1 vaccine at my elementary school, will it be as if I am throwing my children into a building filled with H1N1?? And if so, should I keep them at home and for how long?

Colleen

[Megs_Mom]

Hi - we worry a lot about the flu, the vaccine, and strep, now that school is back in session. But I am trying very hard to keep in perspective, that we have some tools to help now - and doctors that we can work with. And while I will never give her a live vaccine - there is no telling which child next to her may have just gotten it. But then again, they might also be a strep carrier. For now, I am living one day at a time, although I have asked the school to notify us of all illness, so that we can just be watchful. I think that most of the time, by the time I know that there is an illness, she will already be exposed - so I am going to try not to pull her out of school unless there is literally an epidemic. If you feel this is way off base, I'd love to hear about your thoughts. But for now, I have so much to worry about already - and there are no clear answers on the flu. I gave her Tamiflu a few years ago, with no ill effects other than the disgusting taste of the liquid.

 

By the way, the Prevacid has worked miracles on Meg's tummy - we forgot it this am (first week of school!) and she has the first tummy ache in 2 weeks today. We are heading home to take the missed dose! She is so much happier.

[thereishope]

I agree I will not pull him out every time I find out someone is sick. I'm not really sure what my overall "game plan" is. As for strep, I guess once the whole class is sick, it's may be too late to try to prevent it in my son, but at least if I know something is going around, I can keep a closer eye on him. Also, if the # of kids is high in the class, I may be able to convince the ped to give him an antibiotic. As it stands, the ped will not give a propholactic antibitioc nor will he give one if just a couple of kids are sick or if the teacher is sick.Since he's a sitting duck right now, I admit, I am paranoid.

 

As for the swine flu, if they do a mass vaccination day at the school, that's different than just possibly one child being infected, especially if what they give at the school site is the live virus. The numbers would just be too high against him. But, right now no one knows what will happen until the vaccine is available. The school said they will follow CDC directions. Maybe it's also my way to do a silent protest.