Wednesday, October 28, 2009

A heath lesson for us all - Read at your own risk

The h1N1 "swine" flu has got the whole medically fragile parents panties in a bunch. It is causing contention really. Kinda LOTS of contention. A few train wrecks have come my way and I can't stop watching it go and go.

BUT I digress. I am going to be giving a little health lesson on immuno compromised VS immunsupressant. And then go from there.

Immunosupressant children Lets call this GROUP A ( most commonly Transplant patients) take medication to keep their other wise healthy immune system at bay because if it not at bay it attacks that pretty little organ that is giving them life. HOORAY that is is doing that. It does wreck some havoc on their bodies when they are sick but GENERALLY a cold or what not can be fought off without MUCH ( not always) but much reason to worry. By keeping in check the med levels for the kiddos and watching for rejection etc they can be generally very healthy individuals.

( immunosuppressant parents correct me if I am giving out false information)

Immunocompromised kids( call this GROUP B) are a little less OBVIOUS. Meaning they look normal ( sometimes) and don't have another persons organ inside of them but their immune systems are sucky. They are not always sick, most are very healthy till that one BIG BUG gets them. They can't fight it off, they don't have the reserves to do so and because of their disability the muscle needed to kick it out of their body.

Where I come across issues is when group A the immunosuppressant group doesn't recognize that group B also has a germ issue. And if we fall into the germ issue with you then maybe that is something to look at :)

Where do we fit in the picture : A group/ family snap shot for you.
Dallas- not in group a or b, generally healthy, few colds, nothing major causing him not to fight of infection.
Nancy- not in group a or b, generally healthy, few colds a few rounds of the pukes NOTHING that I can't fight off.
Tyler- Group B! Yes everyone did you read that HE IS IN GROUP B. Ty is considered by all medical standpoints a kid in group B. He has a good immune system and is able to fight off infections on his own. He has CRAPPY lungs. He was ventilated for about 3 full months which results in a diagnosis for CHRONIC LUNG DISEASE. Though we have been lucky and pneumonia twice has been the biggest we have been back on the ventilator frequently in the last year. He is low weight. He doesn't have the reserves to be sick long because his body mass isn't up there enough to keep him out of the hospital. AND he has cerebral palsy. Some of his muscles burn more energy than we can keep in him. Still doing that when he is sick.This also causes another problem. His drinking when sick is NADA. He will not drink water when he is healthy, he won't drink juice when he is healthy he isn't going to drink it sick. Cerebral Palsy kid usually die of a respiratory infection that they can't get over because their lungs are trash, their muscle tone is crap and they can't help themselves be better. Also Ty has a shunt. Any infection we are entering into his body could cause his shunt to become infected and a series of events to happen, Death, shunt infection, brain infection, and shunt fixes which mean BRAIN SURGERY.

So.. um we are in the immunocompromised group.

Group A in my "family" Include a heart transplant and a kidney transplant. They are also at risk JUST like we are. Same stuff and their organs that they have will begin to shut down.

OK.. So why the health lesson

Each of these groups of people should be taking precautions to keep their kids safe. On of those things is the H1n1 vaccine which I know WE have not been able to get ( though we HOPE our office gets it soon ) The rest of the vaccines are hidden in Hours long lines to "mass" vaccinate those who want it. BUT again. HIGH Risk is suppose to go first. Not MY kid is high risk. Oh good he got it my turn. NO it means EVERY ONES high risk and THEN YOU.

Don't you think that as a parent to my Group B baby is wanting that vaccine. Heck ya we do. BUT do you think that any parent in their RIGHT mind having group a or b would stand in that line to get it? HELL NO! Do you know how many people you are standing by who was probably infected yesterday and hoping to sneak in and save themselves from getting it. You run less risk exposing your germs to your small circle of friends and staying out of public than you do going there.

Not to mention these mass vaccination places don't care if you are group A,B or just want one. They are giving them away. So chances are you aren't going to get it.

Is there a way? I don't know. I wish I did. I even had some tips to help you all stay more germ free but those are kinda crap since we over here in GROUP b land got exposed to the Swine flu.

And in the most loving way we can we are a little upset. Dallas has the aches and a cough and I have the aches and the exhaustion and the other stuff, while our sweet immunocompromised son is laying in the next room.. seemingly fine.

I can honestly say Our team of Docs are amazing... The swine flu vaccine has our name on it. And if Ty gets even remotely sick we are to be in her office. She is determined to keep him hydrated so he can kick it. She knows that without her help we are doomed. Last summer watching him get so sick and us get sick with him made me so ANGRY that he wasn't more healthy. That his immune system wasn't so crappy and that his fragile skinny body doesn't have the reserves to fight it off.

So in whatever prayers you offer for the GROUP A, don't forget the minor detail of Group B. They get sick to. They are important to keep healthy as well.

Please people, if you KNOW your kid is acting weird and funny and could potentially not feel well, or if you have just exposed your whole family to a ass load of germs PLEASE be kind and don't find my Group B family to hang out with. Call us on the phone, tell us you were around a horrifically larger than normal group, stay away from church do what you have to if you want to have us around.

Both groups have fought so hard to keep them here ... lets think about our germs and our safety and not spreading them to others.


Rich said...

What people seem to forget is your body getting exposed to germs is A GOOD THING. It is how your body builds immunity! What do you think that flu shot is, a happy pill? No it's a "dead" virus or "ghost"... Body says "Hey look virie, I'll remember that next time, thanks Dr!" - about > 2-WEEKS < later your immune!

Thus, viruses and germs also build up their own immunity to drugs! This is also why OVER medicating your kids, or OVER prescribing of antibiotics is BAD! - Hey it works both ways for YOU and the germ!

So if you play "boy in the bubble" your body will never build up... If you play Dr Dr 911 your doing just as much harm...

So, go play in the dirt... wash your hands when you come in... or use the bathroom, but there is no need to be silly about it. :-)

Grandma Labrum said...

When people pray for their children or grandchildren to be healthy and not get sick, they usually don't distinguish between Group A, Group B, or anything else. They just want all their loved ones to be healthy. I am also "high risk" but don't qualify for a shot YET, but am thankful for all those around me who have gotten the shot. It helps keep me healthy. And yes, I have had achy body parts, runny nose, cough, cold, stuffy, but life goes on. More Airborne or vitamins, Tylenol cold, cough medicine, anything that will hit the symptoms. All these colds, aches, whatever, are just a sign of being alive. I don't know many people who don't experience a good amount during the year. Maybe we just don't hear about it because they think it is just normal living. We all know that some people just seem to get sicker than other, and more often than others. They are usually called "husbands." :) No need to play the "I'm sicker than you" game. We know who will always win.

Tammy said...

Yes, Tyler has a lung issue that can be an underlying issue when sick and can cause additional problems if it goes too far. Otherwise it is a good thing for him to get a cold so that his body can build up immunities to them. As he grows and matures his immune system will grow and mature also. It may not be able to mature to the same extent as a normal 4 year old but none the less it will mature.

Part of the thing with immune suppressed is that it takes their bodies longer to get over the illness. What should take the normal 7 days usually takes about 14 days. Hopefully in that time they can fight off that virus or sickness. The difference come in the sense that their bodies can never build up immunities because they are given a drug to suppress that in their system. Their bodies can never build up a full fledge army to fight off the virus where as those who are immune compromised can build up that army and their body is not given something to stop their army from being built up. That is the information that we have been given from our docs. So the moral of the story is the same as Rich. We don't need to keep our kids in a bubble and they need to be exposed to things. When they get sick we do our best to help them get better. If they need to have fluids then we find ways to get them fluids. As kids get older I have found that what use to cause a lot of problems when they were young usually isn't so bad the older they get and it is amazing at what a few months will even do for a kid.

Preemie Miracle said...

If they can't build up an immunity at all then why do they get vaccinations. I understand why they don't get the LIVE virus but wouldn't builiding NO imunity be pointless to give them the vaccine at all?

Lacey said...

Well said, I totally agree. We were at the cardiologists office the other day and she asked me if he was immunocompromised. I said well, yeah, like most heart kids he runs the risk of compete respitory failure if he gets sick, but he is not on immunosupressant drugs like transplants if thats what you mean. I do believe they need to build up their immune systems, thats why I don't keep him locked in the house. He comes to the store with me, and to Disneyland, but he can still get extremely sick, and finding the vaccine has been a joke. We've yet to find it for him. I'm not waiting in line for 3 hours around hundreds of people with him to maybe get it. The health dept needs to let our doctors offices have it so we can get it for our medically fragile kids.