What's Going On At My House? The Sick Kid Edition
If any of you have been wondering where I’ve been, I’ll tell you what’s going on at my house – the sick kid edition.
About a month ago we went for our annual eye exams. Our youngest daughter wasn’t due to go in until sometime in January or February, but my husband felt very strongly that she should go with me when I went in, so he scheduled an appointment for her about 1/2 hour before mine. I’m so grateful that he did. The doctor discovered that she had Bilateral Optic Nerve (Disc) Edema. This means that he found that there was swelling behind her optic nerves. He immediately wrote out instructions for us and sent the information on to our primary.
This explains the terrible headaches that she has been having, along with her off and on blurry vision.
We were to get to a Neurologist ASAP to schedule a complete work up including an MRI and Lumbar Puncture. We saw our Primary the next day. She ordered numerous blood tests, so that the results would be in by the time we got in to see the Neurologist. When we were able to get scheduled at the clinic to see the Neurologist, he ordered an MRI and MRV (Magnetic Resonance Venography) for the next day – and a Lumbar Puncture for the following week. Our insurance company refused to pay for the MRV, so the Neurologist told us that he would work with the MRI (which cost us $551 Out of Pocket), and wait to see the results before deciding if he needed to push for the MRV. (I can’t even begin to imagine what that would have cost us.) Nothing out of the ordinary was found with the MRI, but with the Spinal Tap, he found that her pressure was twice what it should be. He removed as much fluid as he felt was safe, in the hopes that it would help to relieve some of the pain.
Since her spinal fluid was clear she was put on Diamox.
With the combination of an excess amount of cerebrospinal fluid, and no signs of infection, we were given the diagnosis of:
Pseudotumor Cerebri.
This condition is found in about 1 out of every 100,000 people. It is said to be 20 times more likely to occur in obese women of childbearing years. Although our daughter is in her early 20’s she is not obese, nor does she suffer from any of the conditions or diseases that are linked to this condition. Oral Contraceptives are one of the drugs which have been linked to Pseudotumor Cerebri, so she can no longer take them.
Now it’s a waiting game. She got no relief from the removal of spinal fluid and the medication has not helped either. The dose has been increased and she will go back to see the Neurologist in a couple of weeks. The big risk now, is the possibility of permanent damage to her eyesight and complications from the constant vomiting.
It is so hard to watch a child suffer – no matter what age. I’ve watched this previously active healthy young woman, steadily deteriorate over the last few months. Her headaches are often so severe that she is often incapacitated.
Further treatment may be necessary if the increase in Diamox isn’t successful. Surgical possibilities include Optic Nerve Sheath Fenestration or a Spinal Fluid Shunt, neither of which give me any warm fuzzies. The Optic Nerve Sheath Fenestration isn’t always successful and can actually lead to worsening vision, and a Spinal Fluid Shunt often requires additional surgeries, and has a high risk of clogging and infection.
PLEASE PLEASE PLEASE – don’t put off having regular eye exams.
It could save your vision, and just possibly save your life.
I must thank my blogging friends. They have surrounded me with an outpouring of kindness.
Sponsors have been gracious about late posts, and in many cases have offered their assistance in various ways.
My family has been so wonderful during this difficult time.
I am truly grateful for the love and support that I’ve received.
I will be praying for her that things go well and she can get it to a manageable level. As you know, my mom has this as well, if you ever need to talk with someone who has “been there, down that”, I can have her call and talk with you. Much love, Libby!
Libby, my daughter, Melanie told me about your daughters diagnosis. I know it is a lot to take in. I was diagnosed with PTC about 14 years ago.
As I was reading your story I felt like I was reliving my story of how I was diagnosed except my family doc was my starting point and my eye doc told me that the most common cause of the edema is a brain tumor. In that way, the PTC was almost a welcome oddity. I also was started on diamox. I was very fortunate to have it work for me and after a year and a half I was in remission and off my pills. I have had to go back on them for short periods of time. I have a standing prescription that I take for a few days when I wake up with bowling ball head, as I call it when my head is too heavy to hold up and it is hard to move my neck from the pressure.
I was told there was other meds besides diamox. Maybe something else would work for her. If she does end up having a brain shunt, although it is scary, there is nothing that feels better than the relief of that pressure.
I will keep your daughter in my prayers. Praying that they find just the right thing to relieve the pressure for her and protect her eyesight.
If you have any questions or just need to talk you can get my number from Melanie.