Can I ask where to go from here?

firsttogo

Gwen was a 33 weeker, and had no breathing issues. She is a severe refluxer, and tonight we finally got in with a pedi GI. Until today, she has been on prevacid and zantac, and still is miserable. She also is getting PT for physical delays.

The GI put her on a low dose of erythromyacin and Dx her zantac. He is having her have a kidney US and a swallow study. He also mentioned a head CT "if things were still not going well"

I get the need for a swallow study, he was brisk with me, and rushed us today. I have had the apt for 3 months, and not many options as far as pedi GIs go.  Why the kidney US, and possible Head CT. 

Also, she was not given a head US in the NICU. Was that a gross oversight, or do some babies just not need head ultrasounds at 33 weeks? 

So, should I push for  a neuro, or ask our pedi for a head us? is it too late for that? I feel like I failed her in the NICU by not asking for that.

twoasone1

I am not sure about the head ct, my son didn't have one either, he had an MRI at 6 months though. 

DS genticist did order a kidney ultrasound though.  At the time this was ordered we didn't know what was wrong with DS.  We only knew he had GERD (severe reflux) and that he had had pyloric stenosis corrected at 3 weeks old.  They didn't find anything wrong with his kidneys though.  I think it must be something common to look into when a child has severe reflux.

If you aren't comfortable with your GI I would switch if at all possible.  We drive 8 hours every six weeks to see DS GI, so I totally understand not having many options.  We live in the middle of nowhere and there are no pedi gi here at all.  It is worth the drive though and I would suggest you 'shop around' so to speak. 

I have also found that a lot of doctors get used to dealing with uneducated parents who do not advocate for their kids so they just get in the habit of being brisk and are not used to parents who have questions etc.  I am not sure if that makes sense or not, I am not good at explaining it I guess.  Anyway, maybe if you call and talk to the office manager and explain how you felt the appotintment went it would get better.  I don't think it is right that some doctors do this, just the way it is I guess.  I have had to do this a few times and now have great relationships with my sons doctors. 

Anyway, good luck and keep us updated!

kar5162

Head ultrasounds seem to be routinely done on babies 32 weeks gestation and under since those are the most likely to have brain bleeds and issues from prematurity.  In the research I've done, they seem to be not done routinely on older gestation babies.  DS didn't have any as a 34 weeker, but does have PVL which our Neurodevelopmental team believes is likely from being a preemie + a lack of oxygen from a tight nuchal cord at birth.

In any case, the head MRI/ultrasound can help identify why there are physical delays, but at least in our case, doesn't change the way they are treating DS through PT.  We were also told by Neurodevelopmental that it's also very unclear what they mean.  So we know he has PVL, but they also know that everyone responds differently to brain damage just depending on where it is and how their brain is able to form new pathways.  So it doesn't really tell them what your child will be able to do since they all react and adapt differently. 

Good luck with Gwen's testing.  I hope they are able to help some of her GI issues.  I also agree with the PP - so many doctor's seem brisk because they don't seem to be used to meeting with informed and interested parents.  It's a shame. 

JaysonandKristin

As far as the reflux goes, I can offer my personal experience.

Have they tried giving your LO a dose of one of the major brands (Prevacid/Prilosec/etc) in oral suspension?  Is that currently how it's being administered?  In that form they crush the drugs and put it in a syrup.  They can increase the strength of the medicine within the syrup to avoid increasing the dose.  So, you can have a very dilute or a very concentrated medicine within only 2 milliliters depending how the doc Rxs it and the pharmacist mixes it.

If all else fails, take a look at a Nissen Fundoplication.  At least do some research on it.  It's not a decision to be taken lightly at all, and the more time you have to do research on it -- pros vs cons.  The more comfortable you will be with the decision should you ever have to make it.