My beautiful little girl, at the ripe old age of 6, has had a headache for 24 days. This morning was the first painless glimpse we have seen in 24 days. Don’t get me wrong, we have seen some periods of time with less pain, times when she was actually playing. In 24 days, though, we have seen way more of our beautiful Spike in our bed with the lights off, fan off, air conditioner high enough to give noise that drowns out that of her siblings playing down the hall.
We have tried countless medications to stop the pain, so many that I have to keep a written list now. We have tried these medications in even more combinations. There have been combinations that gave her enough relief to allow her those times of play, but they were short lived and she paid for the happy times with excruciating pain.
She has been in such pain that some of the most beautifully heartbreaking words have been, My head almost doesn’t hurt at all today. She also said to the pediatrician one day, I just like you and I want you to see me happy, so I pretend my head doesn’t hurt so much.
I have spent a lot of time frustrated with the pediatrician’s office, but finally realized late last week that they were just as frustrated. Not with me, but because one of their precious patients was in such pain and they could not seem to stop it either. During the last 24 days, we have been in their office 2-3 times a week and have been on the phone with them most of the days in between.
They worked hard to get us in with specialists as quickly as possible and when it wasn’t as quickly as they wanted, they talked to one of those specialists on the phone almost daily, even to the point of calling her personally on her time off at one point. When all of the options were exhausted with them and they could not help our sweet girl anymore, they called the neurologist again and said, Please? This child needs to see you asap! And, the neurologist rearranged her schedule to get us in less than 24 hours later.
It has been so hard to watch my baby girl in so much pain and not be able to do anything but sit, hold her, and massage her head while I prayed for God to relieve her pain.
Today, we finally got in to see the pediatric neurologist and pediatric ophthalmology.
The ophthalmologist was to determine whether there is pressure on her optic nerve, or any other reason why she would have headaches caused by vision issues. She got a relatively clean bill of vision health. She is slightly far sighted and has an eye that turns in just a bit, but neither are affecting her vision or causing headaches. In fact, they are both so slight that there is nothing necessary to treat them.
The neurologist is another story. She looked at her MRI and wasn’t able to find anything out of the ordinary. She asked lots of questions about family history (and there is a good bit with Pouty having seizures, chiari malformation, and a syrinx – Chad and I having migraines, and a couple of other family members with similar issues). She asked a couple of times about things relating to Pouty, but there is very little similarity between the two girls.
She gave us a new pain medicine, a new emergency medicine in place of Imitrex, and put us back on daily maintenance medicine, Propranalol. I asked about a different daily medicine since the propranalol caused so much weight gain in the past. Her words were carefully chosen, lovingly spoken, and deafeningly hard to hear… Lena, this is an urgent and serious situation. I don’t want to try anything else until we know what is going on. She has had success with this medicine in the past, it is the only thing I am willing to try right now. It is an urgent and serious situation that we need answers to now.
Hearing urgent and serious made my heart sink.
In addition to the medications, we have an MRV tomorrow morning at 8am to check the blood flow through her veins in her brain. The point of the MRV is to see if there is a blood clot or any other vein complication that can be causing the headache. If the results from the MRV come back clear, she will have a spinal tap to determine the pressure on her brain.
I haven’t asked, nor have I been told what will happen if all of these tests come back clear. At this point, I’m not sure my mama heart can take it.
As we walked out of the neurologist’s office this morning, she looked up at me with her big chocolate eyes and said…
Mommy, I just don’t know what is wrong with my head. I can’t figure out why it hurts so much, but if I could I wouldn’t have to keep feeling like this and hurting all the time.
I think a part of me died when she said that…Oh, my sweet baby girl, if only I could figure out what’s wrong and take your pain away, I would.
Rejoice in hope, be patient in tribulation, be constant in prayer.