Pseudotumor Cerebri, are two nasty words to me. When I first heard them (just a little over one month ago) I could barley pronounce them. I remember talking to our Pediatrician (Dr. Baily) the morning after we first saw the Nero Dr. (Dr. Cook). I had to explain the condition to her because I couldn't remember the name.
Dr. Cook gave me a few papers to read on this condition. But, its basically when a person has to much brain and spinal fluid. This creates a lot of pressure, and as a result......... headaches.
Callie has had headaches for about a year now. Over the course of the year they progressed in frequency until they got to be daily, and even further until they became a 24/7 problem.
This is Callie's scale of pain.
3-4~ mild headache, normally she can ignore these and still do school work, play sports, watch t.v., hang out with friends, and so on.
5-6~ she can kind of ignore these, and do somethings like watch t.v., or visit with friends. Its just hard to focus on school work.
7-8~ she cant do anything with a headache this bad. No loud noises, no t.v..... Nothing.
Callie has never had a headache that she has described to be above an 8. I hope she never does.
Up until about the beginning of October her average headache was either at 5 or below. (75%) 5 or below. (25%) above a 5. Then, suddenly the tables turned and she started having bad head pain 75% of the time and mild pain 25% of the time.
In the last 4 weeks, Callie has been in the hospital 2 times. After 2 Lumbar Punctures (spinal taps) She has been "solidly diagnosed" with Pseudotumor Cerebri.
Here are some things I have learned about the condition....
1. It is VERY uncommon in children and teens.
2. It is scary. Her vision has been affected to a small degree. One of the bad side affects of this is vision loss.
3. If medication doesn't work...... Well, I'm just going to pray that the medication works.
4. Its depressing to read other peoples stories associated with this condition.
Callie is on a medicine called Diamox. It is suppose to help her body get rid of the extra Cerebral fluid. We were told that it would take a while before we notice a difference in her headaches. For now though, her head and eyes hurt really bad. I talk to Dr. Cook about it today and he told me to try to get her into an eye Dr. (hopefully tomorrow) to make sure her vision hasn't changed.
She hasn't gone to school in over 3 weeks (maybe 4, I'm loosing track of time). I have a meeting with her principle and teachers on Thursday to figure out what to do for her.
Today Callie and I were talking about how crazy it is that she went from being my biggest helper, right hand child, to one that needs me the most. Dr. Cook said that when kids develop this they normally out grow it. I am praying so hard that Callie does so that she can have a normal life.
So many people have helped us. I don't even know how to express my gratitude for all the acts of kindness people have shown to our family. Both while Callie was in the hospital, and since she has been home. I almost cry every time I think about it.
Callie was given a blessing when she was in the hospital the last time. She was told that trough this, she would gain experience. She was also told that her body would heal. I felt the spirit so strong, I believe that she will.
Soon, I hope :)