Jessie's spinal pressure was 42. It is supposed to be about 15-18.
Although a rare side effect atra can cause increase in production of cerebral spinal fluid.
They took off 16cc of fluid. Dr Schore said there's a limit to how much you can take off and he said that her body will make more in 2-3 hours. Now that we know what's causing the headaches we can combat them with medicine to decrease her pressure. She was taking a medicine called Diamox to do just that but apparently she's not taking enough of it. He tripled her dose per day and may increase it further depending on how she does. But the good news is that we definitely know what the problem is and now we can fix it!!
Thursday, March 28, 2013
They're back :-(
Atra, atra, atra. Tsk tsk tsk as I shake my head. Apparently atra can in rare cases cause an increased production of cerebral spinal fluid. Of course we all know Jessie is a rare creature who got a rare cancer and now is getting a rare side effect. (Atra is the main chemo med that cures Jessie's type of cancer).
The scene is set at the beginning of the week:
Her headache seemed to be manageable so she went back to college last Monday evening. On Tues afternoon Jessie called me to say that her headache went up to a 5 when she tried to lie down and was not feeling well at all.
I drove to St Marys to get her and took her straight to Children's ER. We got there at 9:30 pm. She was hydrated and they gave her some oxycodone and sent us home at 5am.
She slept most of the day on Wed but her headache continued to get worse. The oncologist told us to come back to the clinic today since it wasn't getting any better and to not take anything by mouth because she would probably be getting an lp. Trying to follow instructions, Jessie didn't even take pain meds overnight and got much worse. At 6 am this morning she couldn't stand it anymore. We came straight to the Children's ER where she is now on morphine and feeling much better. They are getting ready to do the lumbar puncture now to relieve the pressure.
The scene is set at the beginning of the week:
Her headache seemed to be manageable so she went back to college last Monday evening. On Tues afternoon Jessie called me to say that her headache went up to a 5 when she tried to lie down and was not feeling well at all.
I drove to St Marys to get her and took her straight to Children's ER. We got there at 9:30 pm. She was hydrated and they gave her some oxycodone and sent us home at 5am.
She slept most of the day on Wed but her headache continued to get worse. The oncologist told us to come back to the clinic today since it wasn't getting any better and to not take anything by mouth because she would probably be getting an lp. Trying to follow instructions, Jessie didn't even take pain meds overnight and got much worse. At 6 am this morning she couldn't stand it anymore. We came straight to the Children's ER where she is now on morphine and feeling much better. They are getting ready to do the lumbar puncture now to relieve the pressure.
Monday, March 25, 2013
Headaches gone!
Great news! Her headaches are gone. She said, " this is the best I have felt in a week. I think that was it mom". "IT" was probably inter cranial pressure. Her oncologist ordered medicine to decrease the fluid and the pressure in her eyes after hearing that she was still having mild but annoying headaches over the weekend. It seems that the medicine is working! hallelujah!! The pressure is most likely caused by the ATRA medicine that she is taking which is the main "cure" for her type of cancer. She only has to take the ATRA for 2 weeks at the beginning of each 84 day cycle. She is in the beginning of her 3rd cycle. The ATRA will be finished this Friday for this cycle and she will be weaned off the headache medicine.
Friday, March 22, 2013
Fast forward to March 22
So Jessie has been doing ok with her visits at Children's until now. She just had her 2nd bone marrow check last Friday. Afterwards she felt a little bit of a headache which she attributed to coming off of the anesthesia. She rested Saturday and was getting ready to go back to St Mary's College of Md the next day. She was home the previous week for spring break.
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.
6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.
6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!
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