Is a developmental pedi worth it?

ToastieSimons

I asked this a long time ago before we had DS1's diagnosis and put it on the back burner.

DS1 and DS2 both have an x-linked intellectual disability.  They have microcephaly, hypertonia and marked cognitive impairment. 

Is it worth it to see a devel pedi?  I always read on here about people getting evaluated for ASD from them, but what exactly do they do for rest of the children that have issues developing?

Is it worth it for me to take the boys to one despite having a diagnosis?  I'm guessing that it wouldn't take the place of their regular pediatrician.   

EmAre

In our experience, pediatricians are great at "typical" childhood concerns like cough, cold, chicken pox, etc. Our ped is very reluctant to discuss our specific concerns because it is over his head. We will be going to a developmental ped to oversee my child's atypical concerns and development. They also can be helpful in getting more services for your child above and beyond what EI or the school district is willing to give. They also tend to be more knowledgeable about the more complex issues and may know what issues to address before they become bigger problems.

If your child is not developing "typically" I don't see the harm in having another specialist on your team. Our developmental ped had a very strict screening process in order to even set up an appointment.

sorry for errors. Mobile Bumping.

macchiatto

I'm not sure. I feel like it's probably a good idea, but part of the reason we pursued a dev pedi for my son was because he'd just been through evals with EI and the school system but did not have any "official" diagnoses yet, and that's what we looked to the dev pedi for. She basically confirmed what the other evaluators said but it was good to have someone looking at the whole picture and seeing if there were other concerns or issues going on and making recommendations that addressed the whole picture rather than the more specific recs we get from PT, OT, etc.

Assembly_Reqd

We see ours on a yearly basis mainly to have someone available if we need help managing care or therapies. We want someone who is familiar with Nate and his "typical" self in case the sh!t hits the fan later. So for us, he is an insurance policy of sorts.

If you a really orgainized and have a handle on your child's diagnosis you don't "NEED" one. Some parents just aren't equiped to deal with certain diagnosis and perhaps find that the dev pedi helps to drive their bus. Some parents have no explaination for their child's delays and the dev pedi hooks them up with the specialists needed to get a diagnosis.

At our last appointment, we mentioned how Nate seemed so ready to walk but just needed some additional help, he hooked us up with an intensive therapy program we had never heard of before. 4 weeks later Nate was walking unassisted. He also wrote a perscription for hippotherapy for us which insurance denied, of course. Had we been willing to fight insurance on coverage he would have been the one to write the letter regarding the therapy as a medical neccessity.

ToastieSimons

-auntie-:

Hard to say.

Developmental pedis do see kids with all kinds of developmental delays- FX, autism, global delays. They don't generally manage well child or sick care. But since you already have a firm dx, I don't know what they could bring to the party that you don't have covered. Were your boys dx'd by a neurologist or geneticist?

In theory, a dev pedi could help with making therapy and educational choices, but I suspect you know as much about your son's needs as most dev pedis would at this point. I adore DS's dev pedi, but much of the educational advice we got from him was sort of removed from the reality of IDEA at ground level.

they were diagnosed by a geneticist.  it's a rare mutation so it seems like most drs don't have a clue with the what to expect.

ToastieSimons

Assembly_Reqd:

We see ours on a yearly basis mainly to have someone available if we need help managing care or therapies. We want someone who is familiar with Nate and his "typical" self in case the sh!t hits the fan later. So for us, he is an insurance policy of sorts.

If you a really orgainized and have a handle on your child's diagnosis you don't "NEED" one. Some parents just aren't equiped to deal with certain diagnosis and perhaps find that the dev pedi helps to drive their bus. Some parents have no explaination for their child's delays and the dev pedi hooks them up with the specialists needed to get a diagnosis.

At our last appointment, we mentioned how Nate seemed so ready to walk but just needed some additional help, he hooked us up with an intensive therapy program we had never heard of before. 4 weeks later Nate was walking unassisted. He also wrote a perscription for hippotherapy for us which insurance denied, of course. Had we been willing to fight insurance on coverage he would have been the one to write the letter regarding the therapy as a medical neccessity.

i'll keep that in mind that they're a valuable resource for that aspect. 

mopdop2000

We originally went to see a dev pedi to get a diagnosis. We had done genetic testing and were told that everything was normal so went to the next level. Dev pedi took one look at our son and asked if we had tested him for Fragile X. I thought we had, but that was one of the tests they didn't run. Arg. So they took more blood, and sure enough, he has it. So she did diagnose him with that, and autism.

She is a 5 hr drive from us, but we still go up to see her every year. The 2nd visit felt like a bit of a waste of time, but this last one was well worth the time. She said it was time to formally diagnose with with ADHD as well, and changed his meds, which has made a HUGE difference at preschool and therapy. She also set up a sleep study - we are pretty sure he has obstructive sleep apnea - and suggested a consult with assisted communication.

The other thing I love about her is that she is only a phone call away. I can call her throughout the year with questions and get answers from a Dr who really knows about my sons needs and who has the whole picture. Actually, we call her the Queen Dr since she sits on high in Denver and helps with the high level stuff. For example, I called her last week b/c ds has started some weird eye tic/seizure thing and she set up an EEG and neuro appt for when we are up there getting the sleep study.

So we find her very helpful and will continue to see her on a yearly basis as long as she is there

light52

I think a lot of it has to do with how great you regular docs are.  We had a horrible pediatrician at first and he didn't think there was a thing wrong with DS1.  We couldn't get him to listen to us at all.  The closest decent dev ped is 3 hours away and we were beginning the process of getting our name on the 6 month waitlist when our insurance changed.  We moved to a much smaller hospital system but it turns out they had the best ped for us.  He runs a small autism and ADHD clinic for the system, along with his regular ped practice.  His own daughter has ADHD (DS1 has this as part of his diagnosis) so he is very current on the research.  We've had a ton of help and direction from him so we didn't feel we needed to pursue the dev ped route.  If we had one local we might have considered still going but now that we've had an indepth testing and diagnosis, I'm not sure what else they would be able to do for him.

realisticdreams

The developmental pedi P see's is also the head of the CP clinic so that worked out great for us in the beginning.  I don't know for sure if they could offer you anything you don't already know, but generally wait lists are huge..and it is one of those things where you could gain something or just waste your time.  Either way you just never know, i'd almost venture to see what would be required to get in and see one.  We just do yearly follow-ups now but he was pretty valuable in the beginning even though we really already know what was going on with P.

mommytoconnor

I would say yes.  Your peds is great for colds, booboos, and reg well visits, but they aren't as tuned into developmental issues as a devel peds is.  They look at things much different and you will get better services prob if you also have a devel peds as well as a regl peds.