Ryan was a healthy, active seven year old boy. He started complaining of headaches one day. We didn’t think too much of it at first. He started asking for Tylenol a couple of times a day. Then it increased to every four hours, and we started having to send it to school.

We took him to the pediatrician, and they thought it was a sinus infection. Then he needed to be on the antibiotics longer. They thought it was rebound headaches. This went on for two weeks, and I knew something was not right. I took him to the ophthalmologist to see if it was his eyesight. He said that I needed to see my pediatrician and get him an MRI immediately because of his swollen optic nerves.

Now if you Google severe headaches and swollen optic nerves, the first thing that pops up is brain tumor. I was in a bit of a panic. In the mean time, the school nurse called and said to pick him up, that he wasn’t doing well at all.

I took him straight to the hospital. They did an MRI/MRV and ruled out the brain tumor. They said they wanted to check for meningitis and this rare disease– but not to worry, he didn’t really fit the criteria (it is usually diagnosed in overweight women on some type of medication). So I watched as they performed a spinal tap on my little boy.

The spinal fluid literally spouted out of the tube and the doctor said, “Well, we know what it is. Your son has Intracranial Hypertension.” A rare disease, intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high.

“Intracranial” means “within the skull.” And “hypertension” means “high fluid pressure.” So basically, he produces too much spinal fluid or doesn’t drain it properly, pushing it on his optic nerves and affecting his vision and causing severe headaches. He was immediately hospitalized and thus our journey began.

Over the next four years, he was hospitalized over six times, had over 20 spinal taps, traveled to Ohio for treatment, and been on more medications than you can imagine. He had Optic Nerve Sheathe Fenestration Surgery where they cut slits in the sheathe surrounding the optic nerves to protect his eyesight. He had a VP shunt placed in his brain to help drain the fluid.

He has had complications with the shunt and been placed back on medications. Ryan has tried controversial high doses of steroids with a slow taper, which seems to have put him into a “remission” of symptoms for now. He is an active, strong, healthy 11 year old boy, who is in the gifted program at school in the fifth grade. He has also been known to tutor his eighth grade brother on his Algebra now and then.

He is on the local rock climbing team and has made it to Divisionals and even the National competition and was one of the top 36 youth rock climbers in the nation. This boy has been a fighter from day one. Words cannot express how proud we are of him and thankful that he has done as well as he has. We know his health is precious, and we hope and pray that he continues to stay in this remission.

1 thought on “Diagnosed at Seven with Intracranial Hypertension, Ryan Excels in Remission”

  1. Lucia says:

    Good morning,
    My son was just recently diagnosed with IIH at the age of 14. Would love to be able to talk to you. Have been having a real hard time finding other boys who are suffering from this.

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