Friday, September 4, 2015

Being the Squeaky Wheel and a Referral to a Neuro-Ophthalmologist

I've been in the midst of attempting to hammer out Maggie's schedule for the last five weeks.  I thought it would be easy when we came back from being gone for two months, because we'd already done it once and I thought that everything would fall into place.

After all, we'd been doing this for almost two years.

It hasn't been the case at all and I've been trying to balance being patient with making sure that referrals have gone through and that insurance companies are on track for approving therapies, since I've been told that this time of year they're reluctant to approve anything no matter how desperately it's needed.

A while back I met a woman at one of Sadie's activities.  She was very loud and extroverted, and her manner held a certain bravado that was immediately off putting to this introvert.

We ended up talking though, while the kids were off together and Maggie came up, and suddenly her manner changed entirely.  Her son, who's accomplishments she'd proudly been telling the group about, is autistic.

She went on to tell me that she used to be quiet and shy, but that years of advocating for her son had changed her and had made her into a different person.

In a way I understood already.

But in this last month and especially in these last few days, those words have come back to me again and again.

I spent a lot of the time on the phone with and in doctor's offices.  I try to always be super nice, even when I'm not getting great news.  But I've also learned that I have to be persistent.  Especially when I'm being told different things by different people in the same office.

The squeaky wheel gets the grease, and I don't really want to be that squeaky wheel, but I also know that I am Maggie's number one advocate and that no one else is going to do it for me.

Which brings us to this past week.

I've been worried about Maggie.  I can't even remember if I have written about this, but we went to the doctor's office back in April, they made room for us to come in immediately, because while she was at therapy her eyes did a thing where one was totally dilated and the other was a tiny pinprick and two of her therapists saw it and were concerned.

We saw the doctor and she said that if it happened again to bring her right in and they would order an MRI, but to wait and watch for now.

When we were California for the summer it started happening repeatedly, often when Maggie was having meltdowns.  When we got home I noticed that there were times when she was calm, in a bright room, and her pupils would both totally dilate and she would get a blanket and put it over her head and lay down in a corner and I would know that she must be in pain, and couldn't tell me. Even at OT evaluation the OT noticed that, in the bright play room, her eyes weren't responding to the light and were completely dilated.

I took her back to the doctor, asking for the doctor we saw that first day, who was so incredibly good with Maggie, and after finding out she wasn't in the office very often we went to see her regular pediatrician.

Maggie's regular doctor told me that she wasn't worried, and she would send us to an optometrist  (we just went this spring), but I was skeptical that an optometrist would even be able to get a look in Maggie's eyes, since optometry appointments have had limited success in that area in the past.  It's not like optometrists sedate their patients and it's not like she can clearly tell one what letter is on the board when she's panicked about being in a doctor's office (which is pretty much her reaction to 90% of doctors).

That appointment was a month ago, and since then I'd heard nothing from either office.

It is, however, probably why I was so shocked when James immediately got the neurology referral that I was so desperate to get for Maggie.  I barely kept myself from saying "so dragging his leg gets him sent straight to neurology but pupils of two different sizes for months on end don't?!?!!"

This week, after talking with Maggie's social worker, I began to formulate a new plan.  I found out that the first doctor that just happened to be on call that day when we went in, is actually a well known autism expert, who's on the governor's autism council, and that that's why she's hard to get in to see.  It explained why she was so fantastic with Maggie, and I figured it was the one chance I had at anyone getting a good look at her.

And a small part of me remembered how, when we first began to realize Patch had allergies, none of the doctors we saw believed me initially because he was "too little" at two months old, but they finally sent him to an allergist after realizing I would be back after every single scary episode, and that it was better to just write the referral, while letting me know they didn't think we needed it, than have me calling to bring him in every time his face swelled up to a frightening size (for those who haven't been around that long, we did need that referral, because he was in fact a two month old with allergies as our first meeting with his allergist immediately confirmed).

If I couldn't get anyone to take me seriously maybe I could squeaky wheel my way into some answers.  Or if I was really lucky, maybe I could get in to see the right doctor.

So I called the university's main pediatrics office and explained that my daughter is autistic and terrified of doctors and that this doctor had been amazing with her and the receptionist told me the next date that she would be working and to call at 8 am on the dot to get in to see her on that day since they couldn't book any more appointments ahead of time.

I called at 8 on the dot yesterday.  By the time I made it through the phone tree I was put on hold.  Someone else had made it through faster.  All the appointments were gone.  The receptionist offered to transfer me to the other clinic, where she was working after hours, to see if they could get her in last night.

I called and got a 4:15 appointment.  And this time I asked that we immediately be put in a room since for some reason exam rooms are okay, but that particular waiting room is terrifying to Maggie (it is very, very busy as the waiting room for four offices).

The doctor came in to see Maggie.  I explained that there were some things going on, and that they could be entirely unrelated, but that I was concerned.  Besides her eyes being frequently different sizes, or dilated altogether, she's suddenly stopped sleeping (she was my champion 12-15 hour sleeper until a few months ago) and is exhausted much of the time.

And she's clumsier.  She fell down three times at therapy on a single day and came home with a scraped elbow and a little cut across her nose.  If this were any of my other children I wouldn't be worried at all but Maggie is by far the most coordinated person that lives in this house (she may be the most coordinated person that I've ever met) and so it worries me.

Sometimes, with some doctors, I've gotten the impression that it can be hard to see past Maggie's autism to see if something else is going on that needs to be addressed.  I felt like that was what was happening last month.  So it was a huge relief when the doctor immediately said. "I think she needs to be seen by a neurologist, immediately.  Don't you?"

When she opened Maggie's file she found a referral placed for a neuro-ophthalmology appointment that had gone through this week and I explained that I had no idea how that was possible.  Reading back she found that the optometrist had refused to see her and had said she needed to be seen by a neurologist with the symptoms she's showing.  But it had taken a month for all that to happen and in that time I'd heard nothing and so we'd ended up back in the office.

The doctor we saw yesterday wrote up a second referral, this one marked urgent and sent it through last night.  She hugged me and assured me that I should hear from them soon.  So now we wait.

And hopefully I'll be hearing from them soon and that we'll get to the bottom of whatever is going on with her eyes.


  1. Many prayers that you hear from them very soon! Today! Many prayers for your family. Good for you squeaking to get your babies the help they need.

  2. ((HUGS)) My daughter has a variety of "issues" - not as severe as Maggie's, but none the less.... sensory issues, depression, big time anxiety issues, etc. To make a hugely long story short - she quit eating this summer, the reason seems to be she had a genuine tummy bug but then her unconscious brain became petrified of throwing up.. so even when the initial problem was gone, her brain kept telling her she was sick - nausea and belly pain. She lost so much weight she ended up in the hospital for two weeks and is now home with a NJ tube in place getting food 24/7 until she "fattens up" and the intestinal problem that developed as a result of not eating heals itself. All that to say - I UNDERSTAND that feeling of wanting to be nice and work with the professionals, honestly and truly. I was one of them years ago. So I was so patient even through times I was gritting my teeth.

    But one night... I lost it and told the staff in the hospital that I refused any medical care relating to increasing her feeding rate. I know they thought I was psycho mom at that point. However, this was after the head doc had a heart to heart with DD about how her brain was causing this and SHE needed to decided to get better and he would give her the rest of the day/night to think about things.... but other wise he might need to send her to an out of state facility to deal with eating issues. That scared her big time and she decided that she would allow a tiny increase in her feeding rate. The residents wanted to go up more, even tried sneaking it up in her sleep. I had to put my foot down that if we completely lost her trust we would be making backwards progress mentally and that was a huge issue right then and I would not allow it. The next day the head doc understood completely why I refused the feeding rate change, said it was the right decision after all the emotion of the day, and yes DD needed to be onboard with the changes if she was going to actually get better.

    And now.... three weeks later, she is home and gaining weight. It was a slow and rocky course (Oh the stories I could tell......), and she has a long way to go, but is making progress.

    OK, I didn't mean to go on so long. That feeling of needing to fight on so things aren't missed or the wrong thing happens - I know that so well right now.

    I know you will keep us updated about Maggie - I will be thinking about all of you. Try to take care of yourself in all this. I know from painful experience how easy it is to let oneself get exhausted and a bit cranky (in my case anyhow).

  3. That is very worrisome. I hope you can find out what is going on soon!

  4. Praying that you get seen right away and that they can quickly determine the problem!

  5. Hugs and Prayers. I hope they figure out what's going on with her.

  6. Ahh good! Small victories. I'm glad for you and for Maggie. Keep on squeakin'. :)

  7. Maybe Maggie needs glasses? Make sure that they perform a retinoscopy under cycloplegia.
    It would be very unprofessional to attempt a diagnosis via internet. Nevertheless I would like tell you that a high percentage of pupillary dysfunctions is harmless.
    Susanne, (neuroophthalmologist)

  8. Most probably Maggie will have to have eye drops and they will shine a penlight into her eyes repeatedly – comparing the right eye and the left, doing in in a well lighted room and in a dark room.
    Pharmacolgical pupillary testing is done by giving eye drops, waiting for some time (30 minutes/60 minutes) and measuring pupillary reaction before and after.
    You might want to prepare her by showing her a penlight and harmless over the counter lubricating eye drops.
    Take her sunglases with you, her pupils might be parmacologigcally dilated for up to 24 hours after the examination. Susanne

    1. Hi Susanne,

      Thank you for your reply! Do you have any idea what they might attempt if she's not able to cooperate with the exam? She's pretty terrified of doctors and tends to completely panic when they try to look in her ears especially. Usually from a distance they can look at her eyes, but mostly any attempts at touching her end up with thrashing on the floor.

      I have asked that one of her two favorite therapists come to help me coax her into cooperating but I'm not super optimistic. We have to have her heavily sedated to do dental exams. It makes everything so much more complicated!

      I'll definitely try to prep her (she loves all the toy doctor's office toys she has) but she's so resistant to all things exam related when we're actually in the office.

    2. Me holding Daniel in a death grip generally works for eye exams though our peds opthalmologist here has a bunch of optometrists on staff that do the exams while the kids watch videos. He also does a bunch of Disney impressions and sings silly songs to the kids.

  9. I had to squeak at the orthopedist today when Daniel was melting down in the exam room and they couldn't give us an ETA on when the doctor would be in. Thankfully, they were able to bump us up to next in line and I was able to go change Daniel outside but I was definitely not happy. Making it even "better", the orthopedist told me before he examined Daniel that he doesn't usually see kids with this particular problem and would have to make a referral to someone that does. *facepalm* Thank you for wasting a chunk of my afternoon!

  10. Sorry, didn´t look at your blog during the last few days.

    I am from Austria –but the basic principles of examination won´t differ too much between the countries.
    There is a nice series of very short videos on youtube:
    enter: ORTOPAD Sehschule
    You can see some techniques that are used in strabological and neurophthalmological testing. Not all of them will be needed for Maggie, especially not diagnostic patching.
    Teil 7 (part 7) shows retinoscopy.
    there are modern gadgets that measure refraction from a distance of 2-3meters – they are not very precise but maybe precision won´t be need, so maybe retinoscopy won´t even be neccessary.

    This shows pupillary testing – piece of cake – simply shining a light at her eyes and watching the pupils ;-)
    the fifth picture - “indirekte ophthalmoskopie” shows a good picture how the examination of the retina and the optic nerve can be done.

    Yes, it may be difficult to win Maggies cooperation.
    Well - what do we do?
    We do not do everything in one session.
    A lot of the examinations can be done playfully or swiftly.
    All ophthalmological examinations can be done with handheld devices.
    Good pediatric neuroophthalmologist take their time, have an impressive bag of tricks at their command, are patient, have a sense of humorand know that not everything can be seen or decided at the first appoinment.
    Small children can be fixated for the ophthalmological examination and for retinoscopy (one hold the child, one holds the head and opens the eyes, one does the examination) but that would be absolutely inacceptable for Maggie – either she cooperates or she might need sedation.

    best regards

  11. by the way - i don´t to silly songs - to everybody´s relief, be assured - but i have ben seen crawling on the floor, blowing soap bubbles, being deadly afraid of toy dinosaurs, telling stories about cats and more cats and why i would never eat spaghetti on a tree....and it´s fun to have a wonderful excuse to have lot of toys at your wokplace


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