"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Tuesday, December 7, 2010

Another Diagnosis

Conway's headaches have continued and intensified so we followed up on Dr. Bromberg's referral for a neurology consult. On Saturday, it got so bad he was going limp, getting very tired, sensitive to light and finally vomited. Dr. Davis was able to see him and ruled out any illness. Today we got in to see a neurologist at St. John's, Dr. Altman. He looked over Connie's CT scan from April, listened to his history and examined him. It's his conclusion that Connie is experiencing migraine headaches. As someone with a history of them myself, this news was devastating because I know how I suffered so with them. Dr. Altman was quick to point out that of the other things it could be, though unlikely, this is the best problem to have. The other things include the possibility that he's having mini seizure-like activity or that he's got a growth in his brain. We'd rather it not be either of those, for sure! He did schedule an EEG just to rule out any seizure activity but wants to hold off on any more testing. If Conway complains more than usual or they get much more severe, he'll schedule another CT scan, this time with contrast. Ideally, he'd love to see results of an MRI, but Conway's pacemaker takes that option away. His CT from April shows four calcifications, or "stones" in his parietal occipital region of his brain. While unable to be proven, the likely cause is his time on the pump (5.5 hours) during his first open heart surgery.

So for now we treat with Ibuprofen until the frequency increases to 2 or more times per week to the point where they inhibit his ability to function fairly normally. If that happens, we will start him on a daily maintenance drug if cardiology clears it. That option isn't too appealing though because the side effects of the drug include fatigue and weight gain. I don't think it would be good for his heart for him to carry around extra weight and my fear with the fatigue thing is that one sign of heart problems is fatigue so I'd be afraid that if he were tired, we'd just write it off as a side effect and miss a potential heart issue.

Dr. Altman quickly became a fan of Connie, just like everyone else who meets him. He had that look in his eye when he told me, "Mom, your son is really a special boy. You sure got a good one." On a side note, as we were leaving he asked, "You call him Connie, right?" I hadn't written that on any of the forms or anything! Turns out he was in the doctor's lounge the other day and ran into Dr. Bromberg and they were discussing him. At that time, Dr. Altman didn't know that the CT scan he was carrying in his back pocket and looking over was the same patient Dr. Bromberg was talking about sending his way. Anyway, it made me feel so good and confident in his care that once again, Dr. Bromberg has our boy on his mind and goes the extra mile to look out for him.

3 comments:

Nurse Caren said...

I will have them keep a headache log in preschool. Keep me posted. I was not able to "subscribe?"

Hola Connie!!!!!!
Be cool in school!
Nurse Caren

Anonymous said...

God is asking much of you, dear Erin. Count on my prayers for you, Connie, and the whole family. I am positive God will send some special grace to you all this Christmas. Love, Sister Josephine

Wendy C said...

Sorry I am reading this post a little late but wanted to comment that Andrew (also l-TGA) started having migraines around 5 yrs old also. i don't know if it has anything to do with the CHD as there is family history both in Connie's and Andrew's cases.
We ended up only treating Andrew's with Tylenol and letting him sleep them off. He still gets them sometimes.

Heres his carepage if you want it. Carepages.com and his carepage name is andrewjosephspage.

Heart hugs,
Wendy