Namine has been complaining of headaches for over a month now, so last Friday we called the hospital to have her seen. While there is a headache clinic at the hospital, Namine’s doctor wanted to see her himself before just sending her off to the clinic.

Namine has always been a good sport about doing what the doctors and nurses ask, and yesterday was no exception. After doing the standard weight and height stuff — although with Namine’s caudal regression, her arm span is measured instead — it was on to the actual appointment.

Namine has complained of headaches many times in the past, but until fairly recently we were unsure that she was telling the truth. It’s not that Namine lies, but rather we suspected that sometimes she was copying us. Both Jessica and I are susceptible to headaches ourselves, and we thought for a while that it might have been a case of Namine wanting to be like us (flaws and all).

But as Namine has gotten older, she is able to not only tell us that she has a headache, but she is also able to describe what her headaches are like. And her headaches are nothing like the ones I get. Mine are usually behind my eyes, and they throb, as though a hammer was pounding. Namine describes her headaches as a constant pressure, a squeezing, and they manifest around the sides and top of her head.

When he was examining Namine, Dr. Gordon was impressed at how cheerful and cooperative she was, even despite having a headache. That’s Namine, though; she rarely complains of pain, and when she does, then you know it must be awful. Dr. Gordon examined her eyes, her nose, and her ears, finding nothing suspicious of causing these horrible headaches.

You might ask, “But Paul, if Namine doesn’t show signs of being affected by these headaches, how do you know they’re so bad?”

Good question, Random Internet Citizen. Two things. First of all, my wife and I know our daughter. During her six years on this earth, she has on numerous occasions exhibited an incredibly high pain tolerance. She simply does not show that she is in pain, and when she does, it is so bad that it is nearly incapacitating. On many occasions, it has called into question whether or not Namine has feeling — that is to say, that her nerves are conducting signals properly and that her brain is properly interpreting those signals.

I am happy to say that every nerve test (even ones so simple as “close your eyes and tell me what you feel”) has resulted in the conclusion that Namine’s nerves are firing and her brain is interpreting without failure or malfunction. Doctors have concluded, then, that she simply chooses to ignore the pain until it is too great to bear on her own.

The second reason is because occasionally — not always, but occasionally — Namine will complain of a headache and not want to do anything. She won’t scoot, she won’t crawl, she’ll just lay on the floor. One day last week, Namine had a headache so bad that she told Jessica, “Mommy, my head hurts. I need to go lie down.” And she did. She went in her room and lay in bed.

There are several possibilities that could result in headaches, but none of them seem to apply to Namine.

Diabetes runs in both my family and Jessica’s, and this would be especially suspicious because Namine has told us on several occasions that her headaches tend to fade (if not disappear completely) when she eats. But being diabetic herself, Jessica occasionally checks Namine’s blood sugar level and every single time it’s fine.

You’ll recall that Namine was born with a single ventricle heart. Last year she underwent the third stage in its repair, the Fontan; the procedure was slightly modified, deliberately leaving a hole (called a fenestration) in her heart to relieve some of the pressure. Over time, the fenestration closed on its own, which was expected, but it’s possible that the higher blood pressure in her heart could be causing headaches. However, this would also result in an enlarged liver, and Namine’s liver is perfectly normal, as far as Dr. Gordon could discern.

Because of the abnormal physiology of Namine’s heart, she’ll always have a blood-oxygen percentage lower than 100. Most post-Fontan kids range between 80 and 90, but Namine has an added complication. Having caudal regression syndrome, her heart does not have to work as hard to pump out oxygenated blood, so she consistently sits at 95%. I mention all this because if Namine were to desat (short for desaturate, which means to significantly drop her blood oxygen level) at night while she sleeps, it could result in headaches. However, we have occasionally spot-checked her with the pulse-ox (pulse oximeter machine, used to check heart rate and blood oxygenation) since the Fontan, and have done so more frequently since the frenectomy (partial clipping of her frenulum, the webbing under her tongue that made her tongue-tied). Every single time, without fail, she’s well above 90. Even last night I checked a few times, and she was never below 95.

There are more possibilities, most of which can be checked in the blood. So before sending Namine to the headache clinic, Dr. Gordon sent Namine to the lab to have a couple vials of blood drawn. I went with Namine while Jessica got the car. We knew the draw wouldn’t take long.

As usual, Namine was bossy about her blood draw. She’s not afraid, she just wants it done on her terms. So she told the lab tech, “I’ll count one, two, three, go, and you can go.”

“Okay.”

After the vials were filled (which went without incident), I held the gauze on her arm. Namine wanted to do it herself, but she tends to be a gusher. After a little while, I let up and the bleeding seemed to have stopped.

The lab tech went to get a band-aid, and then all of a sudden Namine’s arm started bleeding again. I said jokingly to Namine, “Your blood heard ‘band-aid’ and got startled.”

Namine said to the tech, totally serious, “You scared the crap outta my blood!” Then she started laughing.

The second time around, it really did stop bleeding. As the lab tech put the band-aid on Namine’s arm, Namine looked at her arm and said, “It’s okay, blood. It’s just a band-aid.”

  • Michele

    She is so cute. Even while having blood drawn! What a witty kid!

  • Kristi

    My son, Jaya who also has CRS/SA, has Chiari I Malformation. It causes bad headaches, and can be associated with Neural Tube Defects. Just a though…hope she feels better soon!

  • Kristi – Finding Ninee

    Did they find anything out? Her attitude is inspiring and fabulous! I love “it’s okay, blood. it’s only a bandaid.” :)

  • @kristifindingninee:disqus Namine has had a couple blood labs done, but she has not been seen by the headache clinic. We just received a summary report from the lead doctor in the special needs department, but it’s the equivalent of a twenty-page “I dunno.”