We are having some serious problems with Luke and our pedi now wants us to see a neurologist. I’m confused and think it has to do with his reflux but the pedi is adamant that it has nothing to do with it.
A little background:
Luke was diagnosed with reflux at 6 weeks (in August ’05). He was put on Zantac and sent to a GI doctor. We’ve tried Prevacid, but he had a terrible reaction so the GI doctor put him on a higher dose Zantac. He would raise it according to his weight gain and we had no problems.
Fast forward to the first week in February ’06, we saw the GI doctor and he said everything looked great and he was going to wean Luke off the Zantac over the course of a month (in essence he just wasn’t going to raise the Zantac dose according to his weight gain). The very next week I took Luke into his pedi because I thought he had an ear infection. He was very fussy, doing a weird head tilt, and arching his back in pain. Pedi said it was probably due to his reflux and gave him an upped dose of Zantac (1.5 ml 2x a day). I told the pedi the GI doctor was trying to wean him off and she pretty much took over the care of his reflux. His symptoms cleared up within a few days.
Fast forward to a few weeks ago (May ’06)… Luke is now 11 months and we thought he was outgrowing the reflux. We used up the little Zantac we had left and all of sudden he started to get more silent reflux episodes. To the point that he would come running to my husband and I screaming and crying and trying to catch his breath. I don’t know if he’s in pain or scared or both. He started holding his ear (mainly his right) like he was hurting. He would tilt his head and just hold his ear in his hand. Then the head “tics” started. He will sit/stand there and bob/nod his head back and forth. I am aware and have read up on Sandifer’s Syndrome but he doesn’t look like he’s having seizure type episodes. He’s very aware of what’s going on when he goes through an ‘episode’ and his eyes don’t roll back into his head. He started refusing solids meals so we took him into the pedi (Note: this is a new pedi, the old one retired.) She didn’t think it had anything to do with reflux (and was glad we weaned him off) but instead checked his ears (nothing, they looked great) and listened to his chest. She was convinced he had mild bronchitis (he was congested) and put him on nebulizer treatments every 4 hours, a decongestant, and ear drops for pain and inflammation. As you can imagine after 10 days of treatment he wasn’t better, but worse. I had my husband call the pedi this past Monday and tell her he was getting worse (his right ear was bloody from him scratching at it). He was in serious pain. After much convincing she refilled his Zantac dose.
We went in today for a recheck appt. Most of his symptoms have cleared up. He doesn’t hold his ears but a few times a day, he doesn’t arch his back, hardly silent refluxes anymore, but the head nodding is still going on. I’m concerned. I asked her if it was normal, she said no. I asked her if maybe there’s some type of damage if it could take a while to repair, she said no. I asked if his Zantac dose was too low, she said no. I disagree. He’s on the same dose at 20lbs as he was at 18lbs. The pedi wants us to see a neurologist in a week if the heading tilting/nodding/bobbing hasn’t gone away. I’m thinking about going back to the GI doctor because I’m wondering if it does have something to do with Sandifer’s Syndrome. I don’t know. I’m so lost.
Anyway, does anyone have any advice or insight. I’m driving myself crazy trying to connect the dots because we seem to have a pedi who doesn’t understand or “get” reflux and seems thrown off by his symptoms.
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! Go to the Ped GI and take it from there…if the zantac seems to work, well then it is working…
