12 year old with VN can't walk since April - Anyone else?

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My 12 year old son was diagnosed with vestibular neuritis and BPPV in early June (sick since April - diagnosis was delayed since he has congenital nystagmus which made it very difficult for local and ER drs - so we had to wait for vestibular specialist apt)  MRI and blood work all is normal.  He has not been able to walk on his own since April and mainly feels light headed (not spinning) and fatigued.  We started PT in early June and we are seeing very slow progress but at least it is progress. Biggest improvement is that he can now use crutches to walk but it does make him very tired. 

 I know it is very rare for children to get this which is why I am having hard time finding similar stories.  PT says kids bounce back faster than adults and it should be about 8-12 weeks for recovery (I know recovery times vary)

After reading some of these posts and the slow progress that we have seen have me doubting their estimation. I'm just trying to get a realistic perspective as to what to expect especially with a new school year coming and fall sports. 

If anyone else gone thru this with a child could you please tell me about your experience? 

Thanks in advance!

Sandy

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  • Posted

    Regards...

    My name is Freddy Alvarez and like your son, I spent a month without moving and several weeks to steady me when I was very young.

    The otolaryngologist diagnosed me with vestibular neuritis and later determined that I had  vertigo positional benign paroxysmal, now I have 21 years old and I suffer panic attacks... but this is more proof that I have to pass..

    I recommend that you take care much  your son, you have to be very strong and  patient..  and tell your son that he is not alone...

    I send you a lot of good energy And remember that this problem is another proof of life.

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  • Posted

    So sorry to hear your son is having such problems. I have labyrinthitis.....it started 7 weeks ago, and I do know that vestibular disorders are very disabling. I saw my consultant today, he was very reassuring re my progress, but he could not give me any timeline re recovery because he said every person is different. I know, and fully appreciate, that you want the very best for your son, and my heart goes out to you all. My own daughter had a 13 hour operation for a brain tumour and our stress was off the scale. I'm sorry I cannot be more reassuring for you, but your son WILL get well, it's just a case of letting this virus run its course. Good luck and God bless

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    • Posted

      Thank you! My sympathy goes to you for having to deal with this miserable illness.  I hope all went well with your daughter! Good luck to you!  and God Bless you and your family!
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