PH probe anyone? And update on the ABR.

zxifnswdjdfn

DS has to do a 24 hr ph probe soon (possibly next week, we are trying to coordinate between four departments) to see if maybe the shaking/poss. seizures are linked to reflux events. All I'm hearing are horror stories. Anyone done this? What's it like? He's mostly Breastfed, and just starting solids. Will be 7 months old next week. I don't want them to have to restrain him because he has tone issues and needs to be able to move to work on them.

As for the update, they couldn't do the ABR. He wouldn't stay asleep. The doctor was running WAY behind and they tried to start an hour after they were supposed to. Instead they repeated the OAE and soundfeild stuff and he failed again. So that's another department we are trying to coordinate with on this next hospitalization.

The developmental pedi. appt went well too. He has higher tone, some abnormal reflexes and altogether faster reflexes on the right. His tone fluctuates from too low to too high in general. He has trouble picking thing up with the left hand, and can't transfer. The right heel cord is tighter than the left (although both have been too tight before) and his cortical thumbing is greater on the right. His army crawl is lopsided. The PT from EI doesn't feel he needs therapy but the dev. pedi thinks it would be appropriate, along with OT and splinting his thumbs.

ToastieSimons

We were THISCLOSE to doing a PH probe.  Basically they just put tube up your LO's nose and into their throat.  It's kind of like having an NG tube in.  The end of the tube has a monitor that transfers and measures the acidity of the environment.  usually they leave it in for 24-48 hours.  Ours was planned to be placed outpatient and we would take him home. After x amount of time we would return to the hospital have it removed and go home.  A dr would then evaluate the results and call us.  

Other hospitals require you to stay inpatient, but they shouldn't have to restrain him for the test.  Afterall, they want to measure the PH of the esophagus while doing ordinary activities.

Sorry about the ABR.  I hate when dr's don't 'think of stuff like that.  We did a swallow study on DS1 at 2 months old and he couldn't eat for 3 hours prior.  Well they were running late and it ended up being about 4.5 hours which was ridiculous for a kid eating 8-10 oz/day total.  That was fun.

EmAre

My daughter had a pH probe at 10 weeks and an impedance probe at about 3yrs. They weren't fun, but in no way horrible. It was mostly just nerve wracking trying to keep the cords from pulling/tangling.

Best of luck. The probe gave us some insight into just how significant my daughter's reflux was. So, difficult while it was happening but overall very beneficial. Feel free to PM if you have any other questions.

EmAre

I forgot to add, both probes were done outpatient.

zxifnswdjdfn

We will definitely be inpatient. We are going in for another EEG since they weren't able to capture any of the episodes last time. We are just trying to coordinate the EEG, which is already scheduled, with the pH probe, and hopefully sedation and Audiology can team up and handle this ABR the same time too.