Mastokids.Org

[Peanut_07]

So I like my daughter to experience many fun things, going swimming and going on family vacations, I am always very nervous she will go into shock again that I will not notice in enough time to prevent the shock from happening. Today I took my daughter adn my two wonderful step kids swimming, it was aways away from town, I was so nervous on our drive there as I am anywhere we go. If i go 20 minutes away I am always checking on her to make sure she is still breathing in her car seat. I usually have someone to go wtih me to watch her while I drive. How has anyone else managed this fear? I know that not many of hte masto children here have gone into schock before but, if you have any advice for me to keep my sanity I would appreciate it. p.s the swimming went very well and no shock occurred, just my worried self.

[Cris R]

I am a chronic worrier myself! Having my first child diagnosed with a rare disease sure didn't help that! However, I am learning some important truths that I constantly remind myself of when worry rears its ugly head in my brain!

First, the truth, a harsh one, is that worry doesn't do anything effective. I can worry all day long and it isn't going to keep my kids disease free, or safe, or whatever. Prevention and common sense are important, of course, and I remind myself that I do everything possible to keep my children safe and well. Yet, there is SO MUCH that is beyond my control, and with that, I have to just try to let it go. Life will be what it will be, and most likely, it will be fine. Should it not be, I know that each of us finds the strength inside at that moment to handle it.

Second, I try to remind myself what a waste my worry is. I have thrown away so many opportunities b/c I was worrying over all the maybes. Of course, that doesn't mean I throw caution to the wind, but I am trying to find a personal balance between living life joyously and carefully.

Finally, one technique that has worked in simple mind manipulation. When I start worrying about "What if this bad thing" or "What if that bad thing", I force myself to ask, "Well, what if nothing bad happens?" "What is everything turns out well?" It helps me to realize that there are just as many good outcomes possible as hard ones.

I hope this helps. You are not alone in your worries!

Cris
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UP with Jake!
3 year old cutie pie! (Urticaria Pigmentosa)

[Peanut_07]

Thank you for your hlep and your support! i really appreciate it, my daughter is beginning to get blisters again which worry me, she hasnt had blisters in so long besides a few times on her eyelids... so i am trying to calm myself.. thank you

[chrissy123]

hi, i know this post is late but thought this might still help. my son, colin, is three. he has been going through severe hypotension and shock nearly on a regular bases due to heat and over heating. i feel your fear i was and still am at times just as fearful. i too make people ride with me in the summer months if it is more than a 10min ride. i also have an 18mo old with masto. i can tell you it gets easier, you become more in-tune to their signs so you can tell when they are reacting sooner and are more likely to stop it.
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chrissy

[Peanut_07]

wow thank you so much, this is such a big releif to hear that someone understands and knows what I am going through and talking about.. I do not wish this upon anyone,, I am just saying that it is nice to hear from someone who understands... I was beginning to worry I was the only one.. the scary thing is my daughter does not necesarrily have anything certain that will cause it, it will just happen out of no where.. the other day I combed her hair and put it up into pig tails.. the next thing I knew she was beginning to go into shock! its so scary!!