Joe's EEG - Wed July 12thDaddy here.
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Joel and I stayed at Children’s Hospital last night. Joel was hooked up to the EEG machine again for overnight monitoring. EEG hook up is quite the ordeal as the EEG tech has to glue each of twenty nodes on his head. This is a multi step process that includes, electrode gel, gauze, metal leads, glue and compressed air to dry the glue. As you can imagine, it makes Joel nervous, but he was very brave.
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We stayed up watching movies and playing with the iphone till near midnight. I set an alarm for 5am to see if waking him up would prompt a seizure so that they could measure it and tell us the diagnosis. Joel and I quickly fell back asleep at 5am and I woke at around 7am to Joel experiencing his normal head nodding seizures while tucked in my arms. I marked the start of the seizures on the EEG computer with my little red button and then a few minutes later fell back asleep.
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I woke again to Joels neurologists confirming what we didn’t really want to hear, and that is that Joel does indeed, without question, have infantile spasms. This appears to be a rather serious diagnosis as it is tied to long term developmental delay and damage and requires that we treat as soon as possible.
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The best treatments are fraught with side-effects, but the steroids seem the best place to start. This will involve injecting Joel’s muscles with a strong steroid. We will know within a few weeks if the steroids are having a positive effect. In studies, the Neurologist tells us that this treatment is successful (meaning an end to seizures) in 70% of cases.
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As with every thing that happens to Joel, we found out that Infantile spasms is a rare diagnosis and that Children’s Hospital in Denver only sees around 30 cases a year.
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I just learned that in 40% of infantile spasm cases, the child ends up with some level of mental retardation.  Talking to our Neurologist, I got the sense that Joel could experience that even if the treatment is successful.  Early intervention upon onset and less-severe symptoms seem to give him a better chance of escaping that, but there it is.
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We, as always, covet your prayers. Please pray that Joel escapes severe damage or developmental regression and retardation. That these seizures resolve. That Amy and I are able to spend time together with the boys and safely administer these steroids over the next 4 weeks. That Joel will not exhibit symptoms of high blood sugar levels or blood pressure issues. And that we continue to take ground in the face of yet another enemy assaulting our little boy.
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The plan is to stay in the hospital until Tuesday so that Joel can start meds and arrangements can be made to ship a supply to our house. For now, Joel and I are going to play in the play room.
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-Ryan

Comments

There are 2 comments for this post.

  1. Jess Baller on July 14, 2012 2:03 pm

    another obstacle…another way i anticipate seeing God do a mighty miracle! gonna keep on praying for you all.

  2. Megan K on July 14, 2012 5:58 pm

    Praying for protection for Joel’s brain and for the effectiveness of the medicine. So sorry it is hard news. Thank you for the update.

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