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Neurofibromatosis

Posted by on Feb. 5, 2014 at 10:22 PM
  • 7 Replies

Hello everyone, My name is Tina and I have three kids My oldest son is 5 my daughter is almost 4 and my littlest is 2. My oldest was born premature at 33 weeks and after a few months in the nicu got to come home and the specialist and things have kept going on. Though I know some have it much worse and I am very grateful that he's here with me. He's upset right now about all the appointments and think's im mean. They done a few ear surgeries to try to fix his ears but so far no luck. i think one is completely gone now but I won't know for sure until next week, where we decide if he's getting his adnoids and tonsils taken out again because apparently they grew back. Who new but he was very young when they took them the first time. We have other specialist but the new one they caught is Neurfribomatosis, they haven't confermed it because where on a long wait to see a specialist who works with it but he has all the signs and we found out the his half brother has it. Which was only found out because they caught on to the signs with my son and I passed on the news. Has anyone ever had to deal with this? I'm really not sure what to expect all together. And can anyone give me advice on how to get him to think mom's not mean for taking him to these appointments. I try to bring stuff to make him happy and always comfort him but he isn't very happy with me over it all right now. I feel bad I wish i could explain it better to him and his little sister and brother who doesn't understand why he always gets to go with mom why they have to stay home. Any advice I really appreciate it

by on Feb. 5, 2014 at 10:22 PM
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Replies (1-7):
Linagma03
by Platinum Member on Feb. 5, 2014 at 10:52 PM
I wish I could help you. My girl has always been so good about all her tests and doctor visits and has never had a problem getting a blood test done.

Here is a huge Hug for you!
JustaMom86
by on Feb. 6, 2014 at 12:30 AM

He just now started fighting it real bad, especially if there near his ears

darbyakeep45
by Darby on Feb. 6, 2014 at 6:02 AM

Welcome to the group!  I'm not sure to be honest...what is that?  What does it entail?

darbyakeep45
by Darby on Feb. 6, 2014 at 6:03 AM

Maybe his ears hurt him?  Is he verbal?

Quoting JustaMom86:

He just now started fighting it real bad, especially if there near his ears


JustaMom86
by on Feb. 6, 2014 at 9:43 PM

The neurfibromatosis has a lot different things to it, muscle weakness, can have benine tumors that grown, learning disabilities, eye weakness. So far that's all I know still learning more about it we go to the doctors who work with it next month hopefully they can tell us more. It usually isn't found this young but he has alot of cafe au lait spots which are little light tan birth marks unless they get to many and then it's one of the signs of this disorder.


Quoting darbyakeep45:

Welcome to the group!  I'm not sure to be honest...what is that?  What does it entail?


JustaMom86
by on Feb. 6, 2014 at 9:44 PM

Even when they do he won't tell us if they do or not. He had a polup grow on them after his old ear nose and throat doctor ignored the infection. So he had to trim it why he was awake and it has nurves so it hurt. I'm sure that is part of it. I started telling him they where looking for potatoes now and he's calmed down and then just ask if there's potatoes in his ears lol

Quoting darbyakeep45:

Maybe his ears hurt him?  Is he verbal?

Quoting JustaMom86:

He just now started fighting it real bad, especially if there near his ears



Momof4AEMW
by Gold Member on Feb. 6, 2014 at 10:31 PM

I had 27 week triplets, so I understand all that comes with that for you.  The appointments are still never ending at age 5.  But, I still know how lucky I am so we keep moving forward.  My kids do not like the appointments, but we just keep forging ahead.  We try to make some fun out of each of the trips too, take along stuff they find special, a fun meal, whatever.  Just something to keep mixing it up.

I know nothing about the diagnosis you mentioned.  I hope you get your answers!

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