Jump to content

anyone have any ideas? UPDATE saturday morning


Recommended Posts

Hi everyone, I know I have been absent for a long time. Just trying to keep my sister going and cope with life's ups and downs.

quick update, my sister has only two chemo's left on her second go round with breast cancer. Keeping fingers crossed.

anyhoo here is where I need help.

my nephew, my sisters son, is 16. two weeks ago he passed out in gym class. he was like elmers glue he was so white when the nurse brought him out in a wheelchair to my sisters car. He also had a terrible headache and his right leg was painful above the knee and numb below the knee.

a few days later he fealt better so he went back to school.

this past monday 1/15 he woke up with a severe headache again and since it was a school holiday he went back to bed. tuesday he got up for school and in the shower he was so dizzy and his head pain was so bad he had to sit in the shower. my sister let him stay home again from school.

tuesday night the pain was so awful she took him to an urgent care facility and they rushed him to a hospital thinking meningitis. they did a cat scan and labs and they were both negative. we have not had a lumbar puncture done on him yet because of the pain lever involved in it. today he saw three more doctors who made more guesses and friday he has a MRI of the head scheduled. they say its a gentler way to confirm or rule out meningitis again.

the wierd thing is his feet are now freezing. they are like ice. we put 4 pairs of socks on him and wrapped his feet and they are still cold, so cold to the touch. his head pain is between 7-9 out of 10 even with meds.

does anyone have any avenues i can research? i have been on the internet for three days and to google headache and freezing feet is getting me no where.

love to all


ok, the kid woke up with no pain and went to school, 1 hour later he was on the floor again. cant remember how he got there, doesn't know if he passed out or just sat down, has no memory of it.

my sister and i took him to childrens hospital and the quarinteened him and kicked my sister out due to her diminished immune system so i stayed with him. they did the spinal tap and gave him a pain cockatil through IV he was asleep in 2 minutes. i thanked above for his pain being gone. 4 hours later the spinal tap was negative and now were waiting on an MRI in the morning to see if its an aneyrysm or something else in the brain the cat scan missed.


ok. we have a dx. he has a Chiari Malformation of the cerebellum of his brain. He is Level 1 and i am reading how thats the level to be if you have this. Surgery is the only real treatment to remove a piece of the skull and medication can reduce the symptoms like pain and balance problems and things like that.. we see a neuro surgeon thursday to see what he needs to have done. I guess people with level 1 most times dont know they have this because the symptoms mimick migraine headaches.

knowing is good, now we can fight it.

Link to comment
Share on other sites

What are they doing waiting on the MRI...they should have done that first, and if the kid is in pain, he should be in there getting it BEFORE Friday.

Sorry...I'm getting heated...I don't ge the wait and see approach.

I also think Don might be onto something though!

Link to comment
Share on other sites


There are different forms of meningitis...normally in a teenager it is meningicocal and shows up as a severe rash on the legs....if you do a search there are some excellent websites that will show pictures and give the signs to look for. My brother had meningitis and it started as strep b pneumonia. Meningitis usually strikes quickly (like within hours)and patients are severely ill before it is sometimes taken seriously. It is a good thing the doctors are on to it but sounds to me like there is definitely more to it. Hope all works out.

Link to comment
Share on other sites

Shellie....I don't have any answers that might help but I do want you to know that I often think of you, miss you and wonder how you are doing. I will continue to remember your sister in my prayers and will add your nephew to my prayer list.

Link to comment
Share on other sites

I'm bumping this, since the way you're doing your updates aren't getting you to the top of the list for folks to easily find your new news these days.

I'm so glad they finally got a dx. I looked it up as I had never heard of it before...I was encouraged to see that tx success is very, very bright.

Hang in there and keep us posted.



Link to comment
Share on other sites

Praying for the best for your nephew. So glad to see that they know what the problem is and can plan for treatment. I would definitly see a specialist in this area. Prayers


Link to comment
Share on other sites

I saw something on TV with a young girl who had that same diagnosis. Only thing was she was sick a very long time before anyone figured out what was wrong. She had the surgery and a renewed sense of well being. I know this surgery sounds so scary but I am happy they found out what was wrong and I am happy it was not something even worse!


Link to comment
Share on other sites

I'm so glad they know what's going on...as you said...Now you can fight!

I know of a family in the Chicago area with both children in the home diagnosed with Chiari Malformation and I know that there are some exceptional Dr.s out there that specialize in treating them.

Prayers for the best!!

Link to comment
Share on other sites

I am so glad they got a diagnosis on your nephew. I know he will be fine. He is so young and he has that on his side and also is staged at 1.

Please keep us posted on his progress.

Hang in there, you are stronger than you think.


Link to comment
Share on other sites

Shelly, I've taken care of adults with this condition in the ICU after surgery. They have done quite well. This link from the NIH might be helpful:http://www.ninds.nih.gov/disorders/chiari/chiari.htm

There is a link to clinical trials near the bottom of the page.

Best wishes to you and yours, Teresa

Link to comment
Share on other sites


Good to see you post, sorry your nephew is ill. From what Theresa says, this is a known thing, treatable, and non-malignant. And kids heal very well. That's all a plus.

I feel badly for your sister who must feel stretched pretty thin about now.

You are all in my prayers.

Don't wait for desperation to say hey, I could use a prayer or three...



Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use.