Questions???

[Super Man's Mommy]

My 22 month old was diagnosed with CRMS on Febuary 26, 2013. I was told this is CF, they call it CRMS until they identify the mutations. He has been screened for the first 39 mutations and now we are waiting on insurance approval for the full panel that will be sent to Ambry Genetics and a CT scan. I was also told that he needs to take every precaution to stay healthy. Along with this he has be diagnosed with Transiant Hypo IGG Deficiency. His IGG levels will not stabalize at a normal number and when he is sick they drop, two of the subclasses are below a 1. They say there is nothing they can do for this, that some children may grow out of it by the age of 8yrs old while others then recieve IGG therapy. He also has Asthma and a number of Allergies. As I try to explain things NUMBEROUS time to my family members some over react while other do not take this serious. I have had notes posted on both doors of the house requesting that people do not enter if they have: been smoking, been around smoke, coughing, been around certian animals, been around anyone sick, or if they are just dirty! I ask that everyone washes there hands, that they do not share his drink nor food with him and not to kiss him in the mouth!!!!!! I am to the point I am done being Nice and the Evil MOM is about to unleash on everyone! I have more concerns with my childs health then what everyone elses needs are! I think this is all very reasonable apparently some think these rules do not apply to them. I have sat down and had two NICE talks trying to explain how important this is because we just had a PICC line removed (not even Three weeks ago)! I am trying not to be that crazy over protective mom, but as his Pulmunologist and Infectious Diease Doctors have explained.... He has several health issues and I have to be very careful to what he is exposed to!

So my question is....

Any suggestions on dealing with the family memebers?????? AND...... Has anyone else been diagnosed with CF and Immune issues.

 

[Aboveallislove]

Dear Mom, I am so sorry. First, I am assuming it is folks not living in the house (if it is that's a separate issue). For those, if you have already given parameters and they have ignored, my doors would be looked and they would not come in. And I might post a nice note saying "I'm sorry we are unable to have visitors at this time. We love you and look forward to talking on the phone." Period. I wouldn't even open the door to "check" if they have complied because if they have ignored you they will lie too. I know this is hard and unfair on you because you love and will miss those folks, but your son needs this. Hopefully your husband is on board, so you canhandle your family and he his. If folks want to scream, yell, debate, "I'm sorry you feel that way, but the doctor has told us x and I am following the doctors directions. I will talk to you later when you are more calm. I love you too much to argue, etc. etc. etc." I am so sorry b/c no one should have to face their child having CF, much less their family this way.
Hugs and prayers,
Love

 

[Printer]

I don't have any suggestions for you. I think that you are right on target, your child's health has to be your prime concern.

Stand strong and if you weaken, come back for reinforcement.

Bill

 

[JENNYC]

Aboveallislove you always have the nicest way of putting things!!! I wish my brain would come up with such fantastic ways of wording things! And totally agree with Bill too "stand strong and come back for reinforcement!" Love this CF community!! And if your family wants to come ask me about it I will very nicely help them to understand how serious this is by sharing Abby's horror stories! And I have plenty!! And I know I have talked to a few of them before about Abby and they were very sympathetic....so I am really shocked and saddened that you are having these problems I am very opinionated when it comes to Abby's CF just ask the smokers at soccer games

 

[Ratatosk]

We didn't really have to deal with the smoking issue, other than not attending a wedding reception as the venue was at a VFW and allowed smoking. Otherwise most people were considerate in that aspect.

We had more issues with people showing up at holiday events claiming they "just had a cold" only to find out they had pneumonia, bronchitis... We finally just stood our ground and said if someone shows up ill, we will leave. My MIL at first was embarrassed; however, we laid it out on the line that it wasn't just a worry that DS would get sick, but that he might get sick with a particularly nasty bug and get LUNG damage. There was a relative by marriage that kept hinting she wanted to come stay at my inlaws lake home who had COPD and MRSA and we actually consulted our doctor because while we weren't going to go anywhere NEAR that place if she visited, but we had concerns with germs staying on surfaces, plus my FIL has chronic sinus issue and we were worried that maybe he'd contract it...

We've just learned to stand our ground. We want DS to live a normal life, and he does; however, we're not going to mess around and knowingly place him in a potentially harmful situation.

 

[Super Man's Mommy]

Thank you all!
Everyone in the house follows the rules! They understand and comply without complaint! It's those not living in the house but simply visiting! However one of the smokers is attempting to quit, I pray he does!!!
Jenny C, it is just a matter of time until one comes to you so be prepared!!!

 

[Aboveallislove]

well thank God the household is all on board so at least a locked door is a solution...not a fun one or a fair one to you but at least you can protect ds until others get on Board. hang in there.