Autism and regressions - where do we fit in?

[k1p1ssk, BSN, RN]

Ok, this is a long one, so hang tight...

Our school has an 8y.o., 2nd grade student with severe autism - non-verbal (for the most part), barely toilet trained, hypotonic, with an unspecified seizure disorder (he had one grand mal seizure at age 2 and is on maintenance meds and has rectal diastat ordered).

The parents have very strange ideas about helping their son - he gets no services outside of school (no ABA or Behavior therapy of any kind), they hardly ever follow through with any recommendations from the service providers here despite copious amts of evidence that what they are doing has positive outcomes for him (I fully believe that he could at least be somewhat verbal and totally potty trained if given the opportunity), and they don't ever answer the phone or respond to emails.

Recently - the last 3 weeks or so? - the student has been "holding his saliva" - letting it collect in his mouth and refusing to swallow it unless prompted by his 1:1, and sometimes just letting it drool out of his mouth. Now, I have evaluated him multiple times at this point. I can't really get a good look in his mouth, but he has no lymph node enlargement, and from what I can see, his throat looks fine. He's been afebrile every time I've seen him. One of his ears was completely impacted with wax and he has seemed congested in the last few weeks as well. Last week, he nearly choked on a carrot because he also has stopped chewing certain things.

The service providers keep coming to me to report that all this is happening. We have reported our concerns to the parents through voicemails, in person, and via email, recommending MD evals (at first for the spit-holding and impacted ear) and a swallowing specialist (specifically after the carrot incident), but they are basically refusing to take him to any of it, I think partially because their pediatrician has retired and they don't want to find a new one right now and they truly don't see anything wrong with him.

On top of this, Mom is between 6-8months pregnant.

So, I'm trying to suss this one out - is he sick or does he have allergies? Is this a regression due to the impending baby? Or is it possible he has had some neurological damage due to an un-witnessed or unreported seizure? I do not have permission to speak with his neurologist and as I said before his PCP has retired and there are no other providers familiar with him that we're aware of. The big question for me is what is going on and what can I do about it? Does anyone have any thoughts? I kinda feel like the service providers are all looking to me to solve this and I don't know what else I can do other than file for neglect. Am I missing something or is that what needs to happen?

[UrbanHealthRN, BSN, RN]

Oh my.

Before anyone goes chasing zebras, let's start with the horses back at the corral.

The rule of thumb is to rule out any medical reasons for the change before moving on to psych care. Maybe he has a cavity or other dental problem; maybe he caught hand, foot, and mouth and has some resolving mouth sores. Maybe there's just a canker sore on the inside of his cheek. Basically, it could be any minor thing going on that could be resolved in no time, but the parents are choosing to follow their own agenda and let this turn into a possibly bigger mess. Or, maybe nothing's wrong medically, and this kid needs some serious psych help. Which again, the parents are in their own la la land instead of doing what needs to be done for their kid.

Do you have any policies in place that allow you to exclude this child due to safety, contagious disease, etc. concerns until he is evaluated by a medical provider? And remember- we're nurses, not MDs. We don't have to know exactly what's going on with a kid; we just have to reasonable suspicion that they have something that could infect other kids or be a safety hazard to themselves (this whole choking/airway thing is what's making me think safety). Maybe you have a release to speak to another pedi in the retired provider's practice, and can call directly?

If you don't have any policies or releases like that in place, his quality of life is certainly starting to go down the drain, his parents are doing nothing to remedy that, and yes, I would call CPS for neglect. This child is completely dependent on the adults around him to identify and provide for his needs, and pardon my french, but it disgusts me that helpless kids like him are being neglected like this.

[k1p1ssk, BSN, RN]

Its such a delicate situation.

On the one hand, I'm trying to foster a more positive relationship with this family. The previous nurse and service providers seem to have "scared" these parents off by adopting a hard line of "if he isn't behaving normally, he needs to go home" even without any concrete reason other than he was seeming sleepy. This is why they won't answer the phone any longer. If he's actually sick, they get here ASAP.

On the other hand, I want what is best for the child and IMO that means at least a PCP eval, but I'm worried that if I call to at least report my concerns to the former PCP's office, this will break what little connection I have with the parents, not to mention I don't have permission to do so. I feel so stuck!

55 minutes ago, k1p1ssk said:

I don't know what else I can do other than file for neglect. Am I missing something or is that what needs to happen?

At this point this is what I would do. I would give mom a courtesy call and tell her why she is being reported.

[NutmeggeRN, BSN]

Yup..that may spur them into action.

[tining, BSN, RN]

I agree with Urban Health and could not have said it better. I can only imagine what is going on in this student's mouth. At the spectrum level this student is at I suspect poor oral care. Maybe find a dentist that specializes in autistic children, and help parents with doctor's names. Do you have other autistic students? Ask those parents for resources.

[SaltineQueen]

I agree that this it teetering on medical neglect. I would call CPS. If they say it's not anything they can do a visit on at this point, I'd keep calling. Better yet, ask the other professionals involved in his care to call. The more calls they get the more likely they will eventually get out there.

[k1p1ssk, BSN, RN]

I actually got a great look in his mouth, just not his throat, and his mouth looks clear of sores; And he actually gets great dental care through an experienced dentist, so I am less likely to suspect an oral/dental problem.

I'm wary to just go ahead and file, as I don't think he is in any real danger as of yet and I wonder about the level of undue stress that would cause - he has no signs of infection or other signs of illness and I kinda get why they don't want to take him to the doctor... I myself kinda think they're just going to say there's nothing wrong, it would just make me feel better to hear that coming from a doctor. There aren't really any other safety concerns, other than the choking hazards, but we literally told the family what happened and they stopped sending foods like that, so in a lot of ways they are listening to us.

Sigh...

[RNTadaaaa]

I understand your dilemma.

Does your school have any policies regarding yearly physicals/check ups and the like? I ask because perhaps they would then HAVE to find a health care provider to follow up with their child for reentry to school for the next school year. I know he seems in good condition at present, however it may not continue if he isn't being proactively cared for.

I am glad that they stopped sending hard foods...however he could aspirate on the saliva he's holding in his mouth. Its a change in behavior worth looking into.

Also, it seems like you may be ignoring that little intuitive voice we Nurses have inside, that is making you pause to consider whether this child needs more assistance. I think your thoughts were correct and you're right to want to have a Provider assess him even if they say nothing is wrong.

[k1p1ssk, BSN, RN]

We don't require physicals between kindergarten and 4th grade, so I can't enforce that. It's like pulling teeth to get the med orders for the diastat each year, too. We also don't have exclusion policies that cover this type of situation.

I'm basically gearing up for a call to DCF. Especially with the baby on the way. I think all staff involved are ready, but they're waiting for me to say so. T

Thanks for the ongoing advice and support!

[Flare, ASN, BSN]

i am left wondering if it's something very simple, given the age, like a loose tooth that he is much more sensitive to, so it may not look even all that loose, but in his world, may be very troubling. There is not much else you can do other than document the heck out of everything - and i mean everything. Save emails, document when you called, document content of calls... That way when you feel your hand is pushed into making the cps call, you will have all you need. (oh, and it's CYA!) I agree with the thought that it may not be safe for him to be at school, but with a 1:1 assigned to him, an IEP and presumably being a public school, you likely can't exclude because he's not swallowing properly. Do you have an OT involved with his care? Have they put their 2 cents in yet?

[UrbanHealthRN, BSN, RN]

3 hours ago, k1p1ssk said:

I actually got a great look in his mouth, just not his throat, and his mouth looks clear of sores; And he actually gets great dental care through an experienced dentist, so I am less likely to suspect an oral/dental problem.

I'm wary to just go ahead and file, as I don't think he is in any real danger as of yet and I wonder about the level of undue stress that would cause - he has no signs of infection or other signs of illness and I kinda get why they don't want to take him to the doctor... I myself kinda think they're just going to say there's nothing wrong, it would just make me feel better to hear that coming from a doctor. There aren't really any other safety concerns, other than the choking hazards, but we literally told the family what happened and they stopped sending foods like that, so in a lot of ways they are listening to us.

Sigh...

I think I'm a little confused now. In your OP, you were saying that the child receives no outside services, the family hardly ever follows through on school recommendations, they haven't found a new doctor for their child, they never respond to school communication...it was painting a picture in my mind of a very neglectful and uncaring family. But learning about more of this child and family's details, I can totally see how you must feel, wanting to build a relationship with this family and be reasonable in your health expectations for this student.

I'm still very doubtful, though- when the family has been spoken to in person about this saliva issue, what do they say? Do they walk away silent, or do they try to have a conversation? Have they seen the saliva issue happen at home, and have they said what they think it is? Why do they think it's ok to never respond to school communication? Is something else going on at home that's very stressful (pregnancy complications, etc.)? Do they think that your health assessments are a substitute for actual medical care, so they don't need to see the doctor? Don't get me wrong, we all do amazing clinical work with students, but we're not dentists, or ENT specialists, or pediatricians who can do a full workup. Something's just not adding up here.