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NF1



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amother


 

Post Mon, Jan 18 2010, 10:55 am
Anyone has a child with NF1? Would love to discuss. I have a 5 year old who was diagnosed a year ago.
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jzmom




 
 
    
 

Post Mon, Jan 18 2010, 11:30 am
I do not know about that particular condition but my son has a medical issue and the best thing I ever did was join a yahoo support group for that condition. There is nothing like talking to someone who knows exactly what you are going through (jewish or not). You can search yahoo groups for this topic. Good Luck.
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happyone




 
 
    
 

Post Mon, Jan 18 2010, 11:34 am
Call Chai Lifeline. They would connect you to other parents with the same condition. I know of at least one that gets services through them. Good luck. 212-465-1300.
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HindaRochel




 
 
    
 

Post Mon, Jan 18 2010, 11:48 am
My father has Neurofibromatosis, so does my sister, her son, my brother, his daughter, myself and my daughter.

Ask away!
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amother


 

Post Tue, Jan 19 2010, 9:36 am
Thanks for the reply. Let me give you medical background so you know where I'm holding. The dr sent my daughter so a genetecist June 2008 because fo Cafe au late spots. She was diagnosed with NF1. She does have a very visible soemthing on her face so they did an MRI to find out if it was a plexi neurofibroma. It was. The MRI also picked up an optic glioma. For the first year they did MRIs every 3 months and as everything stayed stable they are now scheduling every 6 months (YAY!). My next MRI is scheduled for the end of January. Other than that she has gross and fine motor delays and is getting PT and OT. Boruch Hashem she is a really happy friendly kid, very laid back so that should help her deal later on.

So, what questions do I have you ask. I guess my biggest question now is if you have a crystal ball I can borrow. I did enough research to know medically what could happen, what might happen, what all the chances of things happening are etc. So, nothing specific. But ussually around the time I am scheduled to go for the MRI I start getting concerned/wondering about the future. I know it is supposed to be one of the most common genetic deseases which should mean that for every downs kid I see there should be more NF ones. But I don't see them and I can't know what happens to them later in life. So I guess it doesn't make sense at age 5 to start thinking about shidduchim and having kids BUT... The plexi and being teased about the way she looks is probably going to be more of an immediate concern. No problems yet. THe optic glioma they said if it stays stable til age 8 then I don't haev to worry anymore. So 1 1/2 years down 3 more to go.

OK, I think I'm just rambling now so I guess I'll end here.
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HindaRochel




 
 
    
 

Post Tue, Jan 19 2010, 10:50 am
Why don't you pm me and then email me? We can talk up a storm.
Crystal ball is broken, and the fear you have is the fear that is normal for us NF moms and dads. We don't know and we worry; in the early years I kept thinking it would have been easier if there was some grave disease where I knew the outcome. Half the stomach ache was not knowing and not being able to say "okay, she is probably not going to have any problems...."

One way I've beaten the worry is by being up front and not hiding. It takes some pushing myself forward...I had to do it, I couldn't just lock it in. And talking helped.

I think that the majority of people who have NF have mild cases. Many parents don't find out they have it until their children have it.

In myself and my family there are various degrees of problems, but for the most part it is mild.
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noratillman




 
 
    
 

Post Thu, Jan 21 2010, 11:30 am
I have a son, 6 yrs old, w/ NF1. We've known this since he was 2. As Hinda Rochel said above, for us the worst part is not knowing what the trajectory of the disorder will be. B"H we have a beautiful bright boy (in his own way), and his plexi fibroma (along the spine) is stable. As I like to say, as he grows and it doesn't, it will, G-d willing take up less "real estate" in his body. He has some delays - but so does his genetically normal twin brother.

BTW, we use Children's Hospital in Philadelphia - a really top flight place. Even when we moved we've continued to use it.
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HindaRochel




 
 
    
 

Post Thu, Jan 21 2010, 1:06 pm
btw, I know I have to answer an email...I just got caught up in other things. Will get to it tomorrow IM"H
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tb




 
 
    
 

Post Tue, Jan 26 2010, 8:07 am
noratillman - My doctor says the same thing - She's growing and it's not. Actually, that may have to do with the fact that we probably have the same Doctor! I use chop too, Dr. Lange & Dr. Lui. And of course there is the purple pajama doctor, which is what she calls the MRI.
I am supposed to go for an MRI on Wednsday. She had a really bad cough and an ear infection last week. It is much, much better but she is still coughing a little bit and is sounding congested. I don't want to travel all the way to Philadelphia for them to tell me that they can't sedate her and I should reschedule! I guess I'll go to my pediatrician this afternoon and ask him for his prediction. Sigh...I guess I won't get to those dishes in my sink after all.
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HindaRochel




 
 
    
 

Post Tue, Jan 26 2010, 10:20 am
I am really glad I found fellow sister's who have this disorder in their family. For so many years we dealt with this on our lonesome. I knew only one other mother who's child has this, and she was a mutation.

Another problem I have is the guilt...did I have the right to have children? I didn't know for the first two...but you know, if I had stopped I would not have had my Meir, or Esther or Tehila...glad I didn't stop.
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amother


 

Post Tue, Jan 26 2010, 10:22 am
join frumgenetics@yahoo.com many moms there face the same guilt and can relate.
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HindaRochel




 
 
    
 

Post Tue, Jan 26 2010, 10:35 am
thanks, just did. Salixj in case you are the monitor. Long story, not necessary here (in re. to the name.)
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tb




 
 
    
 

Post Tue, Jan 26 2010, 11:07 am
My daughters is mutation so that aspect isn't an issue for me. Oh, BTW, I'm the OP. I decided to "come Out of the closet". Just don't tell my husband - he is a little neurotic about people finding out. Hopefully your daughters will stay mild without any issues. And given the choice I'd have my daughter again too!
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shanly




 
 
    
 

Post Wed, Nov 24 2010, 6:33 pm
I recently joined iamamother and I searched for nf1 and found this post. I am a mother of a 10 year old boy with nf1 (new mutation). He also has plexiform neurofibromas (in his neck and chest) and an optic glioma. I also go to Chop. I see Dr. Fishr and Lui. I would love to be in touch with someone else who is going through all of this. I dont know if this will still come up as your posts were a while ago. I guess Ill see how this works.
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tb




 
 
    
 

Post Thu, Nov 25 2010, 6:36 am
Hi! I don't really go to imamother very much any more but it seems I still have a watch on this topic so I saw this. I got your PM and responded with my e mail address so be in touch.

For any one else who finds this topic and is interested in contacting me please PM me. I'm trying to form some sort of "support group" just so we have who to talk to.

Thanks! Looking forward to hearing from you!
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