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Post by givemehope on Jul 17, 2006 8:49:41 GMT -5
I would love to talk to all the mothers out there with little ones with this horrible disease. Having children with this is very difficult. It would be great to share some solutions.
(L)
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Post by mikey on Jul 17, 2006 8:55:50 GMT -5
I'm a dad, but my four year old is scratching alot, itching his nose. I have this thing but am doing everything to keep from giving it to my kids. I'm hoping that he is merely having a response to me as so many do (morgies cause others to itch when we walk into a room). He did say once he felt like bugs were in his hair, still, he has no other signs.
This is going to be an excellent thread, I pray he doesn't have it but I'm going to make darn good and sure if he does his life is normal.
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linda
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Post by linda on Jul 17, 2006 10:31:33 GMT -5
Mary L. is gathering the people to put together a group of parental support (MAM--mothers against Morgellons). I've got three young children with this disease. They are all doing well now but that was not the case a year and a half ago. My three-year-old had this so bad; I was at such a loss for what to do. Essential oil mixes helped my children the most. Do your kids have neurological problems too?
I'll talk more when I have more time.
Linda
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Post by mikey on Jul 17, 2006 10:35:41 GMT -5
Please change the name to Parents Unit or something? I'm a father and need to help my children, please don't exclude me.
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Post by hannah on Jul 17, 2006 11:31:38 GMT -5
A great idea - we need to know how to help the children as much as possible. Even us grans.
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Post by Carrie♥ on Jul 17, 2006 11:34:31 GMT -5
Oh Mr. Mom...don't like a wee bit of stereo typin' huh!?! I got a wee bit of pirate fever. Ewe...Johnny is just so fine. Mom...Dad...we parents are both...come on Mikey...you wont be left out...I'm sure of it. What about my daughter dog...she's got WHOA...neuro issues. She sits in a quiet room staring at the second hand on my kitchen wall clock and gets a wee bit excited and beginns barkin' and clawin' up the wall to try to take its sword from it's bloody face . Okay...sorry...I'm leavin'.
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linda
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Post by linda on Jul 17, 2006 11:34:40 GMT -5
I don't think the name is supposed to exclude anyone, especially not you Optimistic daddy. The name can be changed; it's not a big deal. It was thought-up as a joke (opposite the AMA) and reads Mam as in "yes Mam." Mary L wanted to use it even though it was a joke. Feel free to brainstorm some different names. I'll email them to her. I don't know about "Parents Unit" though, in which case the acronym would be P.U. (we don't want to give the impression we stink ) Linda
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Post by mikey on Jul 17, 2006 11:58:55 GMT -5
Linda, I have to know, are your kids now leading what you'd call a normal life, do you let them play with other children? I sit here at work and continually almost breaking out crying. My son is such a treasure (as are all of our children). I want him to be so happy, to play and laugh.
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linda
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Post by linda on Jul 17, 2006 12:09:23 GMT -5
My children have no idea that they are infected with anything. They go to school, play with friends, engage in sports. I don't believe that they can pass this on by casual contact, but who knows? I won't sacrifice their happiness because the CDC is dragging its feet. Anyways, I have just as much to worry about them catching stuff as I have to do with them giving stuff. The world is just a dirty place.
Love your kids Optimistic. Don't freak about this thing because it won't do you any good. Stay calm. Live normal. I've changed in that I look at life differently now. I treasure the tender moments I have with my children--who knows how long it will last.
Linda
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Post by mikey on Jul 17, 2006 12:16:54 GMT -5
Okay, thank you Linda, I will do that. I think in many ways the Lord has being calling my number but I was too busy for Him. I already look differently at life. Perhaps now I will be a better father than I would have ever been had this not happened, I feel such love for my children and wife, my cold heart is melting. Somehow, I know everything will be okay, I'm the type that worries and frets. There is a verse I remember from my past and this is "A smoldering wick I will not snuff out" and feel that this is me, a smoldering wick but I think maybe perhaps all is not lost.
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gamom
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Post by gamom on Jul 17, 2006 12:53:18 GMT -5
They go to school, play with friends, engage in sports. I don't believe that they can pass this on by casual contact, but who knows?
I am a mother & totally understand that children need to live a "normal" life in the face of adversity. But I cannot comprehend sending them off to do whatever, if there is even a remote possibility that they could infect another child.
In another thread I read a while back, somebody mentioned going to a water park. I'm stumped as to why someone would do this. There are so many posts, where people say they were infected by another person or animal..or infected their children.
Why oh Why, would you put others at risk?
(Please know that I am just curious & not trying to be an ass)
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Post by Patti on Jul 17, 2006 13:03:45 GMT -5
MFP.......Morgellons Foundation for Parents PAM.......Parents Against Morgellons PFAM......Parents with Fortitude Against Morgellons PPMK......Parents Protecting Morgellons Kids POMKU...Parents Of Morgellons Children Unite CFOM.....Children Free Of Morgellons CPAM......Children Protected Against Morgellons PEMK......Parents Eliminate Morgellons in Kids PUKM.....Parents Unite for Kids with Morgellons (puck 'em.........sorry, couldn't help that one) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Optimistic, I can tell you are a very good Father and your children (and your wife) are so lucky to have you. We all have been a "smoldering wick" at times but as you say, all is not lost when we finally answer that phone call. God bless you and all of the parents trying so desperately to deal with this!
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Post by mikey on Jul 17, 2006 13:10:33 GMT -5
gamom, I have thought of this very thing, but I cannot isolate my children, they have to go to school, and if they can go to school sports and playing with others is no worse. The only alternative would be to put us all on an island, I don't think there is an answer for this, because the alternative is total isolation? How do you isolate a 4 or 6 or 9 year old, you can't?
However, you bring up an excellent point, and one of the things this new group could do is try to suggest guidelines for how to raise our children in this new world and protect the other children and people. You know, it comes down to this. More and more are getting it everyday. And unless the CDC wants 5,000 million people dealing with this they'd better get moving. I've said this before, I think they could solve this pretty quickly if they'd get moving on it. If we can effect the quality of our health so much by herbs and other things by trial and error how much do you think true science could bring to bear on this. I personally think that if they did a true case study of a large group of us they'd find the culprit in our skin and we could begin to eliminate this stuff permanently.
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Post by janedough on Jul 17, 2006 13:24:17 GMT -5
Hi. My small children live normal lives. I don't let them know that they have this. I don't let them know I have this. They could not handle that. As for letting my kids do normal stuff, I agree that until the CDC tells us that for sure it is contagious, Its in their hands. We let them know we had a suspected contagious disease. Hey, we were infected by someone or something. Do you think they are even aware that they spread it to us? What can we do? The CDC knows what they are dealing with. They just don't want to create panic. It shows how much disregard they have for human life. Should I deprive and isolate my children? Should I start forcing drugs that were not prescribed to them down their throats. That I will not do. I am sorry to all of the people that I or we may have infected. You have only ONE place to lay the blame and that is the Unites States CDC.
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gamom
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Post by gamom on Jul 17, 2006 14:49:58 GMT -5
I understand what your saying. I wouldn't imagine a child would be able to "handle" knowing what is wrong with them.
But, if a child has chicken pox, or measles or a bad cold, or mumps, or any other contagious disease...would you still allow them to mingle with other children?
I am so sorry that there are children with this. I truly am. It must be heartbreaking not 'knowing' and not being able to 'fix' it...as is our job as parents.
I would be curious to know how many who have Morgellons, believe it to be contagious..? Person to person, instead of contracting Morgellons through other means. I also read where people say when they go to work or out in public, people start itching/sneezing. If that is the case, then isn't it "doing something" to people?
Please bear with me, I'm only trying to understand a parents reasoning.
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Post by janedough on Jul 17, 2006 15:45:38 GMT -5
gamom, Yes agreed that I would not allow my contagious child out to play with others if I knew that they had a contagious illness. However, I have a 2 yo, 5 yo, and 7yo. What do you think I should lock them up in the house because I BELIEVE them to be contagious, but there is no confirmed diagnosis, no treatment, no protocal what so ever? Until the CDC can publicly confrim that, which I am sure they can, my kids are going to have the childhood they rightly deserve. We did not ask for this. No one will even say it is actually a disease. Yes I think that this is a horrid disease, I hope to God we never infect people. How was I infected? I guess we will never know. So I just do as the CDC likes and pretend it's not there. I hope everyone who works there has a beautiful child that they love more than life at home. I hope they all get what we have. They deserve it (not the kids). I hope they lose sleep wondering if their child can go to storytime, or day care or birthday parties. I hope they lose even more sleep wondering if what they helped cover up will cause long-term neurological problems, or if they will get to see their children grow up. Sorry If I offend anyone with my beliefs. I just know in my heart that they KNOW!!!!!!
Jane
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linda
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Post by linda on Jul 17, 2006 16:10:38 GMT -5
But, if a child has chicken pox, or measles or a bad cold, or mumps, or any other contagious disease...would you still allow them to mingle with other children? I've had this for fourteen years and the only people I know I've given this to are my kids and maybe my husband. Chicken pox or measles can be treated and go away within a short amount of time. This never goes away, but it goes into remission (as it is now). If I don't send my kids to school, I go to jail. So, what do you suggest gamom? I hear ya janedough. Linda
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gamom
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Post by gamom on Jul 17, 2006 16:11:38 GMT -5
I'm sorry Jane, I didn't mean to upset you.
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Post by givemehope on Jul 17, 2006 16:21:20 GMT -5
Optimistic, first i want to say that the intent was not to exclude anyone. that being said. Maybe we can call ourselves "For the Love of the Children" FLoC - this could include all caregivers.
Anyway, the most important task is sharing.
I have not truly explained this disease with my kids. I could barely handle it when I first was diagnosed with this. How can I expect 7 yrs olds and 10 yr. old to understand. We put it in terms of itching and taking meds/vitamins to get rid of the itching. I think protecting the innocence of the kids is most important thing at this time. They have enough to worry about I can't give them more.
I truly agree with Linda -- keep every thing as normal as possible ... limit information re: disease around your kids ... they pick up so much more than we realize sometimes ... love them for who they are. they play sports, have playdates ect.
somethings are out -- ie. sleepovers -- this is getting hard as the kids get older.
As far as being contagious -- I don't know if it is or not. Until there is clinical finding that can prove or disprove this -- I can only worry about my family.
My kids got chickenpoxes this year even though they were immunized. My daughter had them so bad they went into her eyes. The rn practioner at the drs. could not believe her eyes when i brought her into the drs. office. She came close to hospitalization it was so bad. I knew later where we got them -- but that is part of being part of society. You can't protect your kids from everything and everyone; you only do the best you can do with the knowledge you have. I have no intention to give this to anyone but my kids have every right to be a part of society with or without this disease. Did you know that chickenpoxes is most contagious prior to physical symptoms?
(L)
Carrie - how was good old johnny -- did he live up to his part?
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gamom
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Post by gamom on Jul 17, 2006 16:24:40 GMT -5
I've had this for fourteen years and the only people I know I've given this to are my kids and maybe my husband.I joined this board to support those of you suffering. I read how you weren't being believed. I am certainly not here to stir up anything. But, with the quote above, you are basically saying that it IS contagious. There are children in this world with medical conditions that prohibit them from going to school. They are taught at home. My concern, is my own family. My children are being put at risk, because people are angry at the CDC?? The anger is understandable. I have an affliction myself, that is an unknown to the medical community, so I know the despair. I wouldn't wish my pain on my worst enemy. Sorry to bring this topic to this thread, when it is a good thing coming from it. But no, I will not be able to understand putting other children at risk.
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