Last week we visited the neurologist with my youngest son. He is four years old, vivacious, smart and generally healthy, but he does not really talk. He mostly babbles and communicates with gestures. he has a history of nocturnal seizures, which had been under control but which recurred over the holidays. There is (thankfully) no apparent physical cause (such as a brain abnormality) for these problems.
It was an extraordinarily frustrating visit with the neurologist because she told us nothing new. The school where my son gets speech therapy had been “holding off” on a broader treatment plan until the neurological visit. The neurologist, however, seemed surprised by this, and bounced us back to the school. I know these people are trying to do their jobs as best they can, but meanwhile my precious little boy is not learning how to overcome his speech disability, and we are not being trained how to help him. Days, months and seasons go by with no firm diagnosis and nothing for us to hook into.
We need patience and support. There’s nothing more I would want than for my little boy to be healed. If that’s not God’s will, I want to do everything I can to help him become the person God wants him to be. If he is disabled his whole life, he is no less precious as a person. The hardest thing isn’t the shock that everything isn’t “perfect.” It’s the waiting for some concrete understanding of the “imperfection.”
Before I start to sound like I’m crying in my milk, let me say that I’m deeply thankful for my little boy and for all the other blessings I’ve received. Even when I despair that he’ll never learn to speak, or when I give in to the “big black dog” worries about deeper undiagnosed problems with his health, I’m grateful that God entrusted him to my wife and I, just as he is. There is so much pain in this world and so many people I know who have dealt with more immediate and severe losses, such as cancers and tragic fatal accidents. God is good; all His purposes are good; all His ways are good; and everything in this short life of mine is His, until we rejoice together in that better country He is preparing.
7 replies on “Prayer for Patience and Healing”
David,
Your faith in God and love for your son are beautiful things to see. Thanks for sharing this – it is an encouraging and edifying thing.
I will be praying for your son and the rest of your family as well as the doctors and other professionals. I do hope for healing as well and that God be glorified through everything.
David, have they looked for chromosomal abnormalities? I ask because a friend got the same runaround (different symptoms in the child, tho) and eventually the child turned out to have a chromosomal disorder, Somebody’s Syndrome, with treatment protocols and everything. You can’t count on doctors checking all these things.
Thanks guys. The tests they’ve done so far are I guess typical for the neurologist — MRI, CAT scan, and EEG. The MRI and CAT scan, thankfully, were negative — no lesions or tumors. The EEG shows abnormal spiking on one side of the brain, which is consistent with the seizure patterns, but not otherwise useful diagnostically. The current diagnosis is “benign Rolandic seizures,” which as far as I can tell means “we don’t know what the heck the problem is.” We haven’t had genetic testing done, but thanks for that thought. After the last doctor visit, I realize I need to become more of an advocate for my son, and I’ll ask about that.
It’s got to be hard when it’s your kid. You want to know what’s wrong, but at the same time you don’t want bad news. I imagine that could have a paralyzing effect when you are dealing with a doctor who you suspect isn’t asking the hard questions. Your mind is saying “ask them” and your heart is saying “don’t go there”. Ideally the pediatrician does all that for you, but sometimes, as in the case of my friend, the ped. falls down on the job.
Dear sir,
I am no doctor (though I did graduate from your alma mater, which makes me, well, at least a genius). Can I ask you whether your son understands what he hears? Is his issue, besides the seizures, merely a speech problem? No doubt his ears have been checked, but that is always a difficult thing if the child can’t really communicate what he is hearing (or not hearing).
About 30 years ago (am I that old?) I knew a young child who suffered from something similar. His parents finally got him to Crotched Mountain Rehabilitation Center in Greenfield, NH as a day patient. There he underwent therapy that primarily focused on covering his face, then uncovering it, and so on. Somehow it was determined that the child was deeply anxious, perhaps about smothering or having his face covered (I think certain reactions to scarves and bedsheets tipped his parents off). Anyway, the therapy was quite miraculous. The boy certainly learned to speak, and to speak quite well.
So I don’t know if the “anxiety disorder” thing is the right track. And I don’t know where you are, but a place like the Mass. Eye and Ear Infirmary might be helpful. Other ideas that come to mind are heavy-metals toxicity, or some food allergy. Has he been tested for heavy metals or allergies? Of course, as I get to know you a little bit through your blog, you appear to be the thorough and diligent type of father.
My hunch is that this requires swift diagnosis, at least for you and your wife. You need some peace about this, even if it comes through bad news. I pray that good news is what you find.
Peace to you,
Bill Gnade
Class of 1984
Bill, thanks for the comments. The doctors’ most recent thinking is that his condition is something called audio nueropathy — a disconnect between the signals sent by the ears and the signal received by the brain. But we’re still in the middle of lots of testing. Meanwhile, we’re thankful that or son is a happy, otherwise healthy and fun-loving boy.
David,
Your son and your family are in my thoughts and prayers. I realize this is an older post, and your son is now undergoing EEG Testing. This may sound a bit off the wall, but has your son been tested for celiac disease?
Janice