Ack!! We need a Care section.

So, how worried should we be about swine flu and our boys? Especially those of us living near documented cases. I admit I haven't read a whole lot about it, so am not sure of how bad it can be.

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Tamiflu is an antiviral medication that does not contain live virus. It works by binding to the neuraminidase glycoprotein and prevents the neuraminidase from cleaving the haemagglutinin that is attached to the sialic acid, thereby preventing the virus from budding.

It is used to "contain" the virus by preventing replication, giving the immune system time to mount an effective response.

The side affects are noted, and are severe in some cases, but so are the side effects of prednisolone, and that has not prevented us from making EDUCATED decisions as to whether the treatment is worth the risk. It is also important to remember this is a numbers game - find out the percentage of patients affected by individual symptoms when assessing the risk of side effects, and compare it the risks of not using the treatment. Discuss the matter at length with your doctor before your son is at risk, and come up with a prevention strategy if you are concerned.

I am not pro Tamiflu or anti Tamiflu, I am pro common sense and following your gut instinct. I see what precautions we have to go to when working with Influenza (and what additional precautions we take because I have a son with DMD), and as such I have a very healthy respect for the virus and its ramifications,

In times like this it is very easy to buy into scare tactics both for and against early intervention. Just remember - you are all fantastic parents, and making tough decisions is sadly a part of daily living when Duchenne enters your life. Follow your gut, and don't be worried about what other people think - at the end of the day you are charged with making the hard decisions, and you have to live with the consequences of your actions, stay true to yourself, and you can't go wrong - no matter what decision you make.

Polly Sundeen said:
I could be wrong, but aren't our boys supposed to stay away from Tamiflu? I thought it had a "live" flu virus in it. Please correct me if I am wrong.
After talking to our pedi, nurse at the neurologist office, and the school, we decided that if we get a probable case in our school district, then we will pull our kids from school for at least a week. justins lung function is already at 84%, I dont want to take the chance. his teachers already are on high alert for anyone with symptoms. We will pull all three of our kids since they are at three different schools. Also, my oldest daughter and I(she is 16) work at a daycare in town and we will stay out of work if we get a case there.

-=-Samantha
So I contacted the school and let them know that I too wanted to be notified immediately if they so much as suspected a case. I'll contact Cinc. and see what there recommendations are as well. I would really like to know more about the Tamiflu and if they can take it. Daniel is already having trouble bringing up secretions and just started using a cough assist.

The news this morning again upped the suspected cases. It's at 39 now.

This is the email that our school district put out on Fri. This is how they are handling it so far.

Howell Public Schools continues to monitor developments about the much reported Swine Flu virus. We are in contact with the Livingston County Health Department, the Central 911 Center and with other Livingston County school districts to develop approved and consistent strategies to deal with this problem. As was the case with the first MRSA news reports, a great deal of anxiety is caused by non-stop media coverage. At this point in time, actual confirmed cases are very limited.
Prevention is best handled through good hygiene. Please encourage your student(s) to practice the following:

• Wash hands frequently.
• Avoid touching your eyes, nose and mouth.
• Avoid close contact with people who are coughing or otherwise appear ill.
• Children and adults with respiratory illness should stay home from work or school to avoid spreading infections, including influenza, to others in the community.
• People experiencing severe symptoms including cough, fever, fatigue, sore throat, chills, headaches, and body aches, possibly along with diarrhea and vomiting, should contact their physician.
• Practice other good health habits. Get plenty of sleep, be physically active, manage stress, drink plenty of fluids and eat nutritious food.

Howell Schools has contracted with Grand Rapids Building Services for additional disinfecting service to take place this weekend in all buildings as a simple precautionary measure. The particular disinfectant that is used in our district is Green Solutions Neutral Disinfectant Cleaner which is manufactured by Spartan Chemical. No products on the market currently have a "kill claim" on their label for this particular strain of influenza because it is so new. The soap that is located at all hand sinks throughout the district is a disinfecting product as well.

Please be assured that we will continue to keep parents informed and to provide a healthy atmosphere for the children of our school district. For further information, please visit the website for the Centers for Disease Control and Prevention at http://www.cdc.gov/flu/.
My pharmacist said taking either flu medication is safe with .20mg Prednisone (daily) but I still want to hear from Dr Flanigan's office about this before I start, should the need arise.

And, I sent my boys to school with those little face masks in their backpacks. I instructed them to be used if their teacher announces the school will close because of the flu, with the thinking the masks might help a bit until I can get there to take them home. Although I think a lot of this is over-kill -probably it's best to take a conservative approach. If nothing else...this can be a good practice in the event another virus comes along in the future.

Karen Barnett said:
So I contacted the school and let them know that I too wanted to be notified immediately if they so much as suspected a case. I'll contact Cinc. and see what there recommendations are as well. I would really like to know more about the Tamiflu and if they can take it. Daniel is already having trouble bringing up secretions and just started using a cough assist.

The news this morning again upped the suspected cases. It's at 39 now.

This is the email that our school district put out on Fri. This is how they are handling it so far.

Howell Public Schools continues to monitor developments about the much reported Swine Flu virus. We are in contact with the Livingston County Health Department, the Central 911 Center and with other Livingston County school districts to develop approved and consistent strategies to deal with this problem. As was the case with the first MRSA news reports, a great deal of anxiety is caused by non-stop media coverage. At this point in time, actual confirmed cases are very limited.
Prevention is best handled through good hygiene. Please encourage your student(s) to practice the following:

• Wash hands frequently.
• Avoid touching your eyes, nose and mouth.
• Avoid close contact with people who are coughing or otherwise appear ill.
• Children and adults with respiratory illness should stay home from work or school to avoid spreading infections, including influenza, to others in the community.
• People experiencing severe symptoms including cough, fever, fatigue, sore throat, chills, headaches, and body aches, possibly along with diarrhea and vomiting, should contact their physician.
• Practice other good health habits. Get plenty of sleep, be physically active, manage stress, drink plenty of fluids and eat nutritious food.

Howell Schools has contracted with Grand Rapids Building Services for additional disinfecting service to take place this weekend in all buildings as a simple precautionary measure. The particular disinfectant that is used in our district is Green Solutions Neutral Disinfectant Cleaner which is manufactured by Spartan Chemical. No products on the market currently have a "kill claim" on their label for this particular strain of influenza because it is so new. The soap that is located at all hand sinks throughout the district is a disinfecting product as well.

Please be assured that we will continue to keep parents informed and to provide a healthy atmosphere for the children of our school district. For further information, please visit the website for the Centers for Disease Control and Prevention at http://www.cdc.gov/flu/.
cheryl cliff said:
My pharmacist said taking either flu medication is safe with .20mg Prednisone (daily)

You meant 20 mg, not .20 mg, right? My son's on 17.5 mg...
yea, sorry for the mistake, I was posting while trying to get the boys off to school and that usually messes me up.

thanks Keith!

Keith said:
cheryl cliff said:
My pharmacist said taking either flu medication is safe with .20mg Prednisone (daily)

You meant 20 mg, not .20 mg, right? My son's on 17.5 mg...
And now there's this story about the brand new swine flu vaccine:
http://www.dailymail.co.uk/news/article-1206807/Swine-flu-jab-link-...

So what is everyone going to do? Risk swine flu? Risk Guillain-Barr? Move to Siberia, 300 miles from the nearest person?
If you read the report carefully it is basing its assumptions on the issues encountered with the 1976 swine flu vaccine (a different strain), not based on trials from the current vaccine. And when you run the stats on the 1976 vaccine programme, the risk of contracting GBS was very low:
• over 40,000,000 patients were vaccinated
• based on the frequency stated (1 in 80,000) 500 contracted GBS (0.00125%)
• and 25 died (0.0000625%).

Now when you look at these numbers in a statistical context, the risk is low. The reason why the vaccination programme was stopped was because the particular strain of swine flu in 1976 was found to be non-transmissible, therefore the risk (albeit low) of contracting GBS from the vaccine was considered higher than the risk of contracting swine flu from day to day contact.

What this current news story did not quote was the figures for risk of complications from contracting the current bout of swine flu (which is transmissible). Based on the latest CDC figures, globally there have been 1,462 deaths from 177,457 reported cases (0.824%) These figures clearly show that the vaccine poses less risk that the virus itself.

Now while it can be argued that there are a lot of cases that are now going unreported, which will “water down” the stats, the figures now reflect the risk to the sector of the community that is considered “at risk” (as they are now the only ones being tested).

2nd point for consideration: As the risk of GBS varies with each strain of influenza in the vaccine, there are no current stats on the risks of contracting GBS from the current vaccine. However, given that the current strain has resulted in substantially more deaths that the 1976 strain (only 1 person died in 1976) it would be fair to assume that the risk may be higher.

However even on this assumption, the risk would have to be as high as 1 in every 121 people developing GBS from the vaccine before it outweighed the risk of dying from the virus. If the risk was this high, it would have been detected in the trial groups that were vaccinated during development of the current vaccine, so we have to assume that the risk of contracting GBS remains lower than the risk of dying from the current strain of swine flu.

If I were debating the vaccine for a healthy child, I would take into consideration the current findings that even if they did develop the virus, it is a relatively mild strain that should pose no problems – even without the intervention of Tamiflu. In this instance I probably would not use the vaccine.

However our boys are in the “at risk” group, and therefore the fatality rate of the current strain bears much more relevance. So I personally will consider vaccinating our son, as the risks of the vaccine are far less than the risks to his health if he contracts the virus.

Knowing there is a risk of him contracting GBS post vaccine I will ensure that his health is monitored, and if he shows the slightest signs of progressive paralysis (above and beyond the “norms” for Duchenne) I will call an ambulance and have him transferred to hospital without delay – as early intervention of GBS offers the best success rate for a full recovery.

There will be some that don’t agree with my personal opinion, and the vaccination debate is no different to the ongoing debate over steroids and their associated risks.

As with any treatment, there is no right or wrong answer - it is a matter of personal choice. Parents should always make the decision that is right for them, and not feel pressured (either way) into making a decision they are not comfortable with.


Jerry Dallapè said:
And now there's this story about the brand new swine flu vaccine:
http://www.dailymail.co.uk/news/article-1206807/Swine-flu-jab-link-...

So what is everyone going to do? Risk swine flu? Risk Guillain-Barr? Move to Siberia, 300 miles from the nearest person?
I think I am just going to move to Siberia......


--Samantha
On a more serious note....we have talked round and round about wether we will get Justin the swine flu vaccine. School here starts a week from tomorrow. I am already very worried about Justin. He is having very low blood pressures(averaging 95/54). he has had full blood work-up and check-ups. The only thing that come back off was his vit. d level was one point lower than the normal. Noone can figure it out. He takes 5mg lisinopril daily. His bp stays low on or off the meds. We tried him off the meds and with the med halfed. Bp stayed the same, heart rate jumped from the upper 80's to the 130's. He is very tired all of the time. He seems to have lost strength in his shoulders,hands and arms, but we arent sure if thats muscle or he is just exhausted from low blood pressures. The first few days of school are hard enough on him. I dont know if he is going to make it with all of this. Then we also have to consider the germs that will be passed around and the flu season coming up and the swine flu still present!! It all makes me want to scream and run and hide!! Ok, sorry. I went off topic there and started a small rant.....


--Samantha
Hey Samantha,

Rant away I say, because swine flu is just another complication in our lives that we really don't need. :(

WRT to the low blood pressure, there could be another reason, but I will send you an email rather than discussing it over the public forum......

Hope you are keeping well

Jules :)



Samantha Dearing said:
On a more serious note....we have talked round and round about wether we will get Justin the swine flu vaccine. School here starts a week from tomorrow. I am already very worried about Justin. He is having very low blood pressures(averaging 95/54). he has had full blood work-up and check-ups. The only thing that come back off was his vit. d level was one point lower than the normal. Noone can figure it out. He takes 5mg lisinopril daily. His bp stays low on or off the meds. We tried him off the meds and with the med halfed. Bp stayed the same, heart rate jumped from the upper 80's to the 130's. He is very tired all of the time. He seems to have lost strength in his shoulders,hands and arms, but we arent sure if thats muscle or he is just exhausted from low blood pressures. The first few days of school are hard enough on him. I dont know if he is going to make it with all of this. Then we also have to consider the germs that will be passed around and the flu season coming up and the swine flu still present!! It all makes me want to scream and run and hide!! Ok, sorry. I went off topic there and started a small rant.....


--Samantha
I posted this on another thread, but my son's kindergarten teacher put in his IEP that he should have separate school supplies from the rest of the class as a way to isolate some of the circulating germs in his classroom. I thought that was really smart...

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