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Raising Special Needs Kids Raising Special Needs Kids

nf, optic gliomas,bpd and was a primiee any ony know about these

Posted by on Nov. 21, 2013 at 3:53 PM
  • 13 Replies
My son is two years old. He was 7 weeks early. He has bpd of prematurity, which is weak lungs, he gets sick easy, we found out two months ago he has tumors on his brain, two of them is optic gliomas. He also was diagnosed with seizures at three months old. Just got over tab and penauniha 6 different medicines, and therapy a few times a week along with Dr appts, he was also diagnosed with neurofibromatosis at a year old. He been through a lot if the tumors shows Sig've s of through in December he will be started on a low dose of chemo.
by on Nov. 21, 2013 at 3:53 PM
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Replies (1-10):
Momof4AEMW
by Gold Member on Nov. 21, 2013 at 7:01 PM

Welcome Mama!  I had 3 preemies born at 27 weeks with bad lungs, still have issues today and are sick all the time!  I also have one with an epilepsy, but her seizures are not active right now that we know of.  We have not had any brain tumors, thankfully.  I hope the chemo works to resolve them for your son!!  Welcome! 

mrswhittle
by on Nov. 21, 2013 at 7:50 PM

Me to he was born at 33 weeks, he spent two months in the nicu and was reasled and was back in for another week, he aspertes anything thin, so we have to use simpley thick, and no insurence is haveing a hard time approveing it again.! for his seizers he stairs out into space, now today was different, he woke up from a nap crying and shaking, scared me a little bit but i knew he was fine, he has had both sides of his larynix lazered, 

Linagma03
by Gold Member on Nov. 21, 2013 at 8:08 PM

 Welcome to the group. Lina was full term but does have seizures. She has what the neurologist calls lesions and other times refers to them as scar tissue on the left side of her brain. She has no tumors and I've never been through everything that you are with your little guy. I hope that the chemo will work out great for him. Hugs!

mrswhittle
by on Nov. 21, 2013 at 8:14 PM

thank you me to. i am so scard for him to start this, i am also 32 weeks pregnant ! all this is happing at once, he does have a page on facebook called tough liam !

mandee1503
by Amanda on Nov. 21, 2013 at 9:09 PM
Welcome to the group.
mrswhittle
by on Nov. 21, 2013 at 9:15 PM

thank you :) i am glad to joing. i hope to find new friends to be around

darbyakeep45
by Darby on Nov. 22, 2013 at 6:28 AM

Welcome to the group mama...big hugs!

mrswhittle
by on Nov. 22, 2013 at 8:40 AM
Thanks i am glad to join :)
MamaCeleste0722
by Member on Nov. 23, 2013 at 10:00 PM

Hi. I have 2 kids with NF1. One of my kids has an optic glioma, and a plexiform fibroma under her tongue. The other kid has NF1, and has started developing tumors. 

Many thoughts for your little one! 

mrswhittle
by on Nov. 24, 2013 at 4:37 PM

mamaceleste0722. my daughter who also has nf has very littler problems, my son on the other hand, what did the do with your little one

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