Doc is offering developmental ped referral - can I get some opinions?

[CallMeMommy]

So a little background, my DS2 (18 months) has a diagnosed gross motor delay and has been receiving physical therapy for about 6 months now. At 9 months (or maybe it was a year?) he couldn't even get to a sitting position by himself, and now he's inches away from walking unassisted, so he's definitely making progress. He had his 18-month checkup yesterday and confirmed what I suspected, he's *tiny*. 5th percentile for height, 2nd for weight. He started out around the 25th percentile for both height and weight so it's a bit of a drop off the curve. DH and I are both average-size so being small doesn't run in the family. In fact, my 31-week preemie was bigger than him at this age unadjusted and was also ahead developmentally (go figure!). So when you combine the delay and the small size, my family doc is kinda putting it out there that this is beyond his comfort zone and is offering us a developmental ped referral at Mayo Clinic. He says he's concerned but not enough to send us there tomorrow or anything, it's up to us if we want to go. I'm just wondering if it's worth it. What exactly does a developmental ped do? Am I going to waste that time and money (insurance won't cover it) to hear them tell me yeah, he's small, but there's nothing wrong? Should I take him to see a regular ped in our clinic first and see what they say? Anyone wanna chime in?

[Linda on the move]

Because there are two things off (size and gross motor skills) my vote is to set up the appointment. Where we live it takes months to get in, so a parent has plenty of time to back out of the appointment if they decide they don't want. On the other hand, if you don't set up the appointment, but decide in 6 months that it really is a good idea, you could wait another 6 months to get in. Setting up the appointment just gives you options.

[betsyj]

Wow I could have written this post. We had a WBV for my 20 mo old yesterday and he fell off the chart weight wise and has dropped from the 25th to the 10th in length. He had a stroke so he also has gross and fine motor delays.

We have been referred to a ped endocrinologist and I have to admit I am worried. He looks great but I worry that he isn't really growing at all.

In your shoes I would absolutely make the appt. And fwiw, if your insurance won't cover it, it might be worth it to talk to the billing office first-our PT offers a discount if you pay in cash. They may have something similar.

[LauraLoo]

Originally Posted by CallMeMommy

Am I going to waste that time and money (insurance won't cover it) to hear them tell me yeah, he's small, but there's nothing wrong?

Quick question - does your family doc. know that your insurance will not cover a trip to the dev. ped?

[askew]

I would go. Better to have it all checked out than to find out later that something was wrong and lost time to treat it.

[mrsfru]

I'd go, b/c ALL problems are best treated early on in the game....and sometimes, much can be done to prevent further damage or problems by seeking early treatment PLUS if you don't go now and find out later that many problems could have been avoided or lessened by early treatment, it could be a huge source of guilt and stress for you (even if right now, you are "pretty sure" that everything's fine). Now, that's not to say that I'd totally right off any Mama's intuition telling her that everything is really fine...just the same as I'd never right it off if she felt that it wasn't.

I'd go, I'd spend the $$. It may be fine to be smaller than average, but if he actually is dropping down in his own growth pattern, esp to where he isn't growing much at all, AND he was a full term/full size baby and his development is delayed, it bears looking at by a professional.

hths

mrsfru

[Pookietooth]

If you can find the money, I'd go, because the early things are detected, the better outlook. Have you had him tested for celiac yet? It can cause growth issues and is treated with a gluten free diet.

[LynnS6]

Does it have to be the Mayo? Is there another clinic that will accept your insurance?

I would definitely look into things further, but if you're near the Mayo, there might be other good options for you at the University of Minnesota or UW-Madison (depending on where you live).

[sbgrace]

Sounds like my kiddo at that age. I would go. Has anyone mentioned low muscle tone stuff as a cause of the gross motor delays?
My kiddo was smaller than that at that age. But because he's always been proportional weight/height no one ever wanted to look into it. I'm glad your ped. is more proactive.

[CallMeMommy]

Originally Posted by LauraLoo

Quick question - does your family doc. know that your insurance will not cover a trip to the dev. ped?

Probably not, we have the same insurance (I work at the clinic) but I doubt he's ever had to take a trip to the dev. ped before. And I don't think it's something that would cross his mind.

Originally Posted by Pookietooth

If you can find the money, I'd go, because the early things are detected, the better outlook. Have you had him tested for celiac yet? It can cause growth issues and is treated with a gluten free diet.

OMG, I just remembered my MIL's cousin has celiac...

Originally Posted by LynnS6

Does it have to be the Mayo? Is there another clinic that will accept your insurance?

Yep, I work for a subsection of Mayo, they won't pay for anything else. Which bites, because my mom has specialists up at the U and I really trust those guys. Even if I did go up there the costs would be applied towards my out of network deductible, which is like twice as high as my in-network, so it'd cost me more in the long run.

Originally Posted by sbgrace

Sounds like my kiddo at that age. I would go. Has anyone mentioned low muscle tone stuff as a cause of the gross motor delays?

From the start his PT has said his muscle tone looks good. And he is making progress, he seems (as far as gross motor goes) caught up except for walking.

Another thing I'm worried about, and it's stupid because it's not a make-or-break thing, is how much sh!t they're going to give me about him not being vaccinated I've got a whole list of responses in my head already, but I don't do well with confrontation.

I'll probably just ask for the referral, like a PP said it'd probably be 6 months or more before we could get in and I can always cancel it later...

[LauraLoo]

Originally Posted by CallMeMommy

Probably not, we have the same insurance (I work at the clinic) but I doubt he's ever had to take a trip to the dev. ped before. And I don't think it's something that would cross his mind.

I'd let him know this and see if there's something that can be done. Likely you may need to talk to the billing dept or something (at the clinic) -- or maybe he can refer you out to another specialist first that your insurance does cover (depending on what he thinks may be the problem) and see if that helps your case. There was a thread on SN awhile back about definitely talking to the billing dept first to see if there was a way to adjust the billing when costs were going to be out of pocket. Maybe another mama here can pull that thread or knows more about how this works.

In any case, I'd go ahead an make the appointment (and ask to speak to their billing dept. at Mayo, too, to see what can be done) and then you have time to see if something else can be worked out.

[kme]

If it was my son, I would go. My son's issues were brushed off a lot and I wish I'd been more forceful. I often wonder how much time we lost not getting started on therapy at a very young age. Other than the money (which I know is no small thing), it is a win-win. If they find "nothing" wrong, then you have peace of mind. If they find "something", you can get started on therapy or whatever is recommended at a very young age.

I think this is worth spending money on.
Good luck!!

[Linda on the move]

Originally Posted by LauraLoo

I'd let him know this and see if there's something that can be done. Likely you may need to talk to the billing dept or something (at the clinic) -- or maybe he can refer you out to another specialist first that your insurance does cover (depending on what he thinks may be the problem) and see if that helps your case.

Agreed. See if you can get a similar appointment that is paid for.

I hate working on that kind of thing. My DD has an eval coming up that I started working on arranging nearly a year ago, and I spent a full hour last week on the phone with my insurance. At this point, the particular doctor is more imporant to me than the insurance payment, but I'm getting both the doctor I want and the insurance is paying for it!!!!

[mrsfru]

Another thing I'm worried about, and it's stupid because it's not a make-or-break thing, is how much sh!t they're going to give me about him not being vaccinated I've got a whole list of responses in my head already, but I don't do well with confrontation.

I used to worry about this, too, and my answer or response is different depending on who I'm talking w/and what it seems their opinion is or how receptive they are. I usually just go with, "We have made our decision after extensive research, and we realize that it is neither the most common or most popular decision and that it comes w/risks. We are here today about X, Y, Z."

We try to move along to why we are there pretty quickly, b/c whether he's vaccinated or not isn't going to change why we are there that day...and we aren't going to change our opinion that day either. LOL

I've only gotten flak about it twice--both in illness situations, one w/a different ped and one at the ER--and both got backed down by me pretty quickly. Don't let them sidetrack you--I actually had to remind the ped that we were both under a time crunch, him w/a lot of sick patients waiting on him and me w/another child w/me who was getting hungry. "We don't have time to discuss this right now, and neither of us is going to change the other's mind anyhow, so could we please focus on why we are here today? DS needs his medication for X refilled. Thank you."

I've decided that being a B***h about it is sometimes required. I'm polite, but I won't be derailed from why we are there or what I'm paying for (and it AIN'T a lecture on vaccines!!!)

GL! Don't worry too much about it--the dev ped's office is the most supportive of our choices in this regard!

mrsfru

[kathrineg]

Are you sure your insurance won't cover it? Sometimes you have to have your doctor call or submit certain forms but then the insurance company will cover it. You might also have "out of network" benefits that may apply.

Mayo Clinic has really good financial help (meaning they help walk you through payment and ways to get different forms of payment). When you call to make an appointment they can talk to you about that. Or you can just call without making an appointment.

Also see their financial assistance info.

I really can't say enough about how accommodating and professional they are.

They only make appts 12 weeks ahead of time so you won't be waiting for 6 months. However, they do make appointments based on need, instead of first-come-first-served.

That means that if they think your son needs to be seen right away they will schedule an appointment for right away--no arbitrary waiting list.

[kathrineg]

Oh and when you call and make an appt you're talking to a registered nurse, who I'm sure could tell you about their vaccine policy.