Seeing a ped for the first time with my 2.5yo with delays - what should I try to watch for ahead of time

[rose]

We've been waiting  a couple of months now to see a pediatricians for our 2.5yo whose experiencing a number of delays and I was thinking that some of you here might have some suggestions for making the appointment for useful. Here's our history. Ds is adopted from my sister. She drank heavily for the 1st trimester, swears she didn't once she decided not to abort at about 12 weeks. She's not trustworthy though so who knows. She claims that she didn't use drugs but she has a history of crack use even in a previous pregnancy and she's a liar. Ds was born via foreceps after obstructed labour. It was nasty. There is also a strong family history of autism (1/2 sister, uncle and at least 3 cousins on the spectrum). His biological 1/2 sister (not with us) is being worked up for suspected autism, executive function disorder and non-verbal LD.

 

What we've seen was low muscle tone and lethargy from not feeding well in first few months. Now we're seeing gross motor delays and language delays. He doesn't run or jump and he has an awkward stiff toe-out gait. He can't go for more than about a 10 minute walk without whining and he's very slow. This has given us thoughts of cerebral palsy.

 

For language delays, he does talk but not much. Most of the day he's just quiet. I kind-of feel like if his ds2 didn't speak he probably wouldn't either. He's learned most of what he says from his brother, not in an echolalia sort of way though. He is putting 2 words together. He's very inarticulate. He also doesn't always respond promptly when I speak. He'll look at me blankly and I'll have to repeat an instruction several times to get a response but he will eventually understand--at least simple one step commands. I don't think that it's hearing related though because sometimes he'll respond first time even when we're intentionally quiet. He doesn't do much of what I would call stimming, maybe a bit though. He's not very tantrumy, average for a 2yo. His sleep is a little wonky but nothing I would think twice about if I wasn't analyzing him. I don't really see any sensory issues. My brother has low functioning autism so I'm pretty familiar with the red-flags.

 

What I'm wondering is if any of you could suggest some things that I could watch for over the next couple of weeks that could help me have some answers to some questions that we might be asked by the paediatrician. Should I try to log his words? I don't want to go and then not know how to answer the questions. Am I over thinking this?

[PeterPan]

I'm sorry it's taking so long to get into the ped.  This is way more than the ped can handle, so what you're really trying to do is explain enough that he can give you good referrals.  Do you know who will pay for complete evals?  Do you have insurance to cover this, or will you be using some kind of state coverage or self-pay?  That's the thing to sort out now, because he's going to need a number of evals to sort this out.  

 

Unfortunately, and not to scare you, but you can have brain damage from the FAS *and* autism.  This is probably going to be a process, with some things becoming more apparent over time.  For instance, he could have an effect on IQ, and that might be more obvious in the next round of evals (age 6/7) than it is now.  I don't know how young they do IQ testing.  

 

I would make your categories of concerns to make sure that you get referrals that reflect all your areas of concern.   (cognitive, behavioral, etc.) You're mentioning physical.  I don't know who does a CP eval, but someone else here on the boards would.  It definitely sounds like you're getting PT and OT evals.  You mentioned speech concerns, so you want to log some things to get the SLP eval.  You said there's a family history of autism, so you're going to want to make notes on things like eye contact, pointing, responding, joint attention.  At this age, joint attention is a really big marker and pointing. So if he's on the playground or somewhere apart from his caregiver and gets scared or stressed, does he look back at the person for comfort?  Does he point for things he wants?  Also make some notes on behaviors (non-compliant, oppositional, dysregulated, extremes of responses, typical responses).  

 

You have enough kids that you know what is typical, my lands.  Anything that is catching your attention, write down.  Trust your gut on this.  My *guess* is where you want to be is a hospital eval with a team.  That way you're getting psych, PT, OT, SLP, etc., all under one roof.  But that assumes insurance is paying for it.  That's why I said your real problem is to figure out who's paying for this.  That way you know what you're asking for.  If you're paying for it yourself, you could go ahead and schedule the evals.  Insurance usually wants referrals or pre-approval.  

 

Fwiw, you're definitely doing the right thing pursuing evals.  It just may be a process.  If your insurance doesn't require the referral, you might even go ahead and schedule the SLP.  

Edited October 20, 2016 by OhElizabeth

[rose]

I suppose I should add that we're in Canada so our state mandated insurance will be paying for all this. The biggest hurtle will be dealing with what's available in our region. The delay for getting into the ped is just that we're in a remote area with distinct doctor shortages. A two month wait is actually pretty good.

[PeterPan]

Oh my.  We've had other boardies from Canada, and it seems like services vary with the province. 

[rose]

Side convo:

 

Oh my.  We've had other boardies from Canada, and it seems like services vary with the province. 

 

Absolutely, my dh is actually an MD. The cities are much better. Doctors tend to marry professionals who tend to work in the cities and they like lots of options for their children. Wait lists can be really bad where we are for any specialist but they will bump you ahead for anything urgent. A hernia can take a year to be dealt with but a heart surgery can get you in right away. We can always go to the US if we're willing to pay out of pocket.

[Crimson Wife]

  He's very inarticulate. He also doesn't always respond promptly when I speak. He'll look at me blankly and I'll have to repeat an instruction several times to get a response but he will eventually understand--at least simple one step commands. I don't think that it's hearing related though because sometimes he'll respond first time even when we're intentionally quiet. 

 

 

You still need to get his hearing checked by an audiologist in the booth because if there's a loss that only affects certain frequencies, it may not be obvious. I went into the hearing test that discovered my daughter's profound high frequency loss totally unconcerned and thinking it was a "check the box" thing. And it wasn't just me because ALL her various therapists and teachers were surprised. Even the school SLP who had suggested maybe there was a mild hearing loss was shocked by the degree.

 

Prenatal exposure to alcohol and/or drugs is a known risk factor for hearing loss.

 

The newborn hearing screening only finds the most severe cases of hearing loss because of the way it's designed. If audiologists made the testing more sensitive to pick up milder cases, there would be a LOT more "false positives" and it's not cost-effective to put all those babies through the follow-up testing. The audiologists would have to follow-up test large numbers of healthy babies in order to find even one baby with hearing loss.

 

Instead doctors wait for parents/caregivers to express concerns and then only test those children. Even then, a large percentage of those kids will have typical hearing and just some other issue like autism or articulation disorder or whatever. I understand why the newborn screening has the threshold it does but the flip side is that then the responsibility falls to parents to recognize the symptoms of milder hearing losses. And those aren't necessarily obvious.

 

Bottom line is have the pediatrician make a referral to the audiologist for full booth testing.

[PeterPan]

Just to ditto what Crimson is saying, I'll say that we took my ds to the audiologist right before his psych eval for the same reason.  Ds wasn't responding, and the patterns were so odd that, when coupled with the phonological problems, it was like wow we really don't want to miss this if there's a hearing component.  I took him to a university so he could have a full, proper eval, not just a screening at the ped.  They saw the same issues with not responding, and of course it caught their attention too!  In our ds' case, it was explained by the ASD, not hearing, but it's definitely a good thing to check off the list.  They never said why are you here.  Not responding is a big deal and deserves to be fully examined.

Edited October 20, 2016 by OhElizabeth

[Lecka]

My son also had non-responding and ASD.

 

For him, seizures also came up as a possible explanation. If he is not responding sometimes it can be caused by a seizure. It can also lead to having skill gaps and knowledge gaps.

 

I don't know much about that as it was obvious ASD with my son, but it did come up and we were asked about other signs of seizures, and if he had them or not.

 

I have heard hearing loss and seizures can both have these similarities where it can look like ASD.

[Crimson Wife]

About 30% of kids with ASD also have seizure disorder. We actually mistook the symptoms of my child's hearing loss for possible subclinical seizures. It was a more plausible explanation but then we got false reassurance when the EEG was normal.