Ongoing Preemie Followups - Toddlerhood+
Ok, so I'm not totally sure how to phrase what I'm looking for so bear with me. I have 18 month old twins who were born at 31 weeks. So far they have been doing fantastic and are catching up beautifully with only minor issues that we've been able to resolve (reflux, plagiocephaly, torticollis). We are very lucky, but I always live in fear that something will pop up unexpectedly. We currently live out of the country for my husband's job (military) and are in a place with fantastic health care so we've been fortunate to have a preemie follow-along clinic here. We'll be moving soon (internationally again...location TBD) and are trying to make the argument that our twins need to receive continued care by someone who knows what to look for with preemies, and not by just a generic GP who generally sees adults and the occasional kid.
So, my problem is that I can't find any legitimate seeming information that gives general recommendations on how long preemies should receive follow-up checks and what types (motor skills, cognitive, auditory, vision....). I know I'm not finding anything because it's so specific to each kid but I just wish I could find some general recommendations. I've been searching journal articles, hospital and clinic websites and so on.
So I'm just wondering if anyone has ever seen anything like this or if you'd be willing to just share what long-term followups have been recommended for your kid(s).
Oh, and I should add that we did get a general set of recommendations from the preemie clinic here but it's not being taken seriously because it's not "from a US facility."
Re: Ongoing Preemie Followups - Toddlerhood+
DD was born just shy of 24 weeks, and we saw a neonatologist for regular evaluations until she was 2, which is when preemies are usually expected to catch up.
Is it possible for you to find a neonatologist at a US military hospital? At least for an evaluation?
DD was born at 33w5d, but has had no preemie specific follow ups. We moved out of state when she was 4m old, but even before then the hospital (best in the state) didn't do anything specific for us. We had a referral for hip dysplasia, but that was it.
This might be the minority opinion here, but I think that regular pedi appts and your watchful eye are probably enough.
Personally, once DD started talking I felt like she was pretty much caught up. Sure she's weaker in some areas than others, but all kids have different strengths and weaknesses.
BFP(4) DD2 born 2.14.13 @ 35w5d due to pPROM
If they don't have any problems is there a reason you need to continue the check ups?
We do a follow-up clinic every 4-6 months until she turns 3 years old. It's not for anything specific, just to look at developmental milestones. We were referred by our NICU, athough the follow-up clinic is at a different hospital.
I would ask your pediatrician once you move if there are any possible programs. If they don't know, then I'd call a neonatologist and ask. There might not be one available, but it can't hurt.
Also,the doctors at our clinic call themselves Developmental Neonatologists. You could search for one of those, as well.
Thanks for all the feedback. I totally felt this way until we went to our first follow-along appointment and realized how much more intensive their tests were than at the pediatrician's office. That's not to say that it's necessary, by any means....but now that I'm used to all the extra stuff it's a comfort thing for me. I'm sure a lot of my fears are simply driven by being in a foreign country (where I don't speak the language well) and not being totally familiar with the healthcare system. So getting this long detailed report verifying that my kids are on track just calms my nerves.
That being said, some of the potential places we may end up don't have any pediatricians. If we have to fly back to the States occasionally for a preemie clinic appointment, fine, but I'm not comfortable with someone who rarely sees kids, let alone those born 9 weeks early, making all the judgement calls on their development. We have requested a recommendation from our current pediatrician and I'm going to google a few of the things listed above. Thanks!
DS was born just shy of 31 weeks; he's 20 months now. Our NICU has a developmental follow up until 2 years. Thankfully he has no delays and hasn't needed any intervention but they still see him until 2. I don't mind going every few months but they don't really tell us anything different from the reg pedi.