All the Disorders and the Moon Too

ghost of a boy

This was the week of doctor visits for Max.  On Tuesday night we took him to his physician.  The same one that did my horrible exam this past fall.  We went to discuss his stomach aches, his leg pains, and his occasional dizziness.  Here is what the doctor thinks:

1) He has some kind of stomach problem and she thinks it’s H. Pylori.  His blood is being tested for it.

2) Leg pains are being caused by the early development of plantar fasciitis due to the wearing of CRAPPY-ASS SHOES.

3.) He has the “angriest” interior nose landscape she’s seen in a long time and a cobbled throat due to severe allergies which she says would account for occasional dizziness and sore throats and headaches.  Also: nosebleeds.

All of his complaints, you see, seem to have physiological explanations and are NOT psychosomatic.  We knew he had seasonal allergies but didn’t realize they were so bad.  He’s taken allergy pills before and it didn’t seem to help him much.  I need to find out if he needs to get tested for specific allergies in order to address this.  But if his allergies are so severe – how the hell did he manage to be examined by an ear-nose-throat specialist for nose cauterization and not have this problem brought up?

I suspected bad shoes might be the issue behind his leg pains because he used to complain a lot more about foot pains when exercising (also considered by most and sometimes even me to be due to his dislike of certain activities) until I could no longer find the Vans-style slip on shoes in his size which were the ONLY shoes he’d wear.  When he was forced to wear tie-up shoes that had more cushioning he complained a lot less of foot pain.  These tie up shoes are crap, of course, but you can’t just force a kid like Max to switch what he wears – it takes care and prepping.  I was working on finding support inserts for his shoes but he just rejected the first pair last week.  Doc says he has to wear better shoes.  So we will buy him better shoes with our next paycheck.

To the P.E. teacher who accused him of lying about his pain: FUCK YOU.  Sometimes kids can both hate you and your class but not be lying about the pain they feel when you make them walk fast or run.

The stomach pains do so often show up at times when he’s stressed out so that I’m only hating myself a little bit (a lot) for not looking deeper into them a long long time ago.  He may not have the H. Pylori bug but the doctor is certain that his complaint is not psychosomatic due to the tenderness he feels in his upper abdomen.  So yeah, I am actually kicking the shit out of myself for not making a doctor look into this 3 years ago.  All this suffering?  Jesus!

The only thing that pissed me off about this new physician that we all share now is that she did give the obligatory shaming speech about Max’s diet.  “If you only have good food in the house he will eat good food.” I started to explain that, actually, my kid will starve himself to death – but Max piped up and did it for me.  I gave up.  Why the fuck bother to explain that his food issues aren’t because of an indulgent parent but a product of his body and mind being very different?  Everyone thinks what they think and I’m always going to be the bad junk food eating parent (though I hardly eat any junk food) cramming her kid ignorantly with fried and packaged crap and Max is always going to be the spoiled power-hungry kid determined to die of diabetes.  Luckily she didn’t go on and on about it like the pediatrician did.

But it still hurts and makes me want to pry my  kid’s mouth open and shove every fruit and vegetable down his throat in desperation because I fucking know how bad his diet is and it has been the source of incredible stress and worry since he was two and began the great food rejection.  The real kicker is that he’s actually eating some produce almost every day again and trying new things – he’s making a fucking effort.  But we are always going to be the willfully unhealthy people to all doctors and all people who don’t have extreme picky eaters of their own – the only people in the world who understand the truth of the situation.*

Yesterday morning we had an appointment with Max’s new psychologist.  It was a fantastic change from the previous psychologist.  He’s willing to give Max the ADD testing now – he says that Kaiser prefers to rule out all other possible issues before giving the testing but that Max definitely shows enough indication that he may have ADD to warrant the testing.  The other doctor made the decision to insist on making the school do testing that the school was not going to do – putting me in a bad place.  But this guy is willing to go to bat for Max which earned my trust immediately.  The last doctor decided (without bothering to discuss it with me) that Max does not have anxiety or OCD but that he has Sensory Processing Disorder.  Since Max’s original psychologist ruled that out early on I have not been willing to consider that as a possibility.  Dr. Carey’s explanation for why he didn’t believe Max had SPD was really clear and I agreed.  Dr. Disney** thinks Max may have Non-Verbal Processing Disorder which is related to SPD and is a learning disability.  So he doesn’t completely disagree with the previous psychologist but I’m willing to listen to him because, like Dr. Carey, he made a very good case for this and it doesn’t really negate Dr. Carey’s assessment but I can see how some behaviors can become more clear when kids are older.  Dr. Carey saw Max between the ages of 7 and 11 and in a totally different environment.  Dr. Disney is seeing Max at 12 years old and there’s no question that differences in the natural development at different ages can show you different aspects of a person’s whole psychological makeup.

I have never heard of NVLD.  After talking to us and Max for an hour and going over Max’s self-assessment paperwork (first time he’s been old enough to fill that out and it may make a significant difference in the diagnostic process) he showed us a checklist with 3 columns, one for ADHD, one for something else I didn’t catch, and one for NVLD and showed us that there were more behaviors related to NVLD checkmarked than for ADHD though both show strong enough indication that he may have both (they can be co-morbid).  He definitely thinks Max has anxiety but isn’t convinced he has OCD.  In digesting all these different disorders it’s important t to note that they all share some clusters of behaviors in common and most of them can present like OCD and complicating matters more is that they can ALL exist co-morbidly.  It is most likely that Max doesn’t have one thing or another but a mish-mash of different issues to varying degrees.

The trick is to sort out the groupings of behaviors and issues and figure out which are brain based and which are personality based because this is the most important thing to know when it comes to treatment.  ADHD is brain based and can usually be treated very effectively with medication.  NVLD is personality based and is not treatable at all with medication but with behavioral and occupational therapies.  Very very different treatments.  OCD is anxiety based and can be treated with medications but the medications that are effective for it are completely different than the meds that treat ADHD.  We know Max has anxiety – that is the only thing we know for sure.  The anxiety medication (and he’s on a very low dose and is probably in need of increasing it soon) has worked well for him and proved therapeutic.  He has not self harmed since starting on it and he has been less high strung about most of the things that stop him in his tracks and his sleep has been better as well.

You will observe that until yesterday my one goal was to get Max tested for ADD so we can get a 504 plan in place.  That has been a huge goal of mine.  And this new psychologist is willing to start that process right now.  But we’ve decided to wait a little longer.  No doctor or psychologist that Max has seen has doubted he has ADD, every last one of them has concurred that it’s a likely diagnosis.  But now that we finally find ourselves in what seem like careful and capable hands – we feel like we should wait to do the testing and give the new psychologist a chance to get to know Max and work with him and sort through all these issues of his and see if patterns emerge that will help clarify what we are dealing with before we launch into official testing.  It might seem a little surprising that given the green light for the testing AT-FUCKING-LAST I would suddenly back off of it – but my only real concern is to figure out how I can help my son navigate successfully in a world that is acutely uncomfortable to him.  The only reason why I’ve been fighting so hard for a diagnosis and the testing that determines it is because at least in the school environment I can’t make many demands without that stupid 504 and I need all the available tools at Max’s disposal to help him succeed – that’s my job as his parent.

But at the moment he’s doing very well in school (except for flunking P.E. but I hardly count that) and now we finally have a psychologist who I feel we can trust – and he has given us new food for thought and homework to do and so I feel we can afford to slow down now and let a professional guide us.  I had no one to repose confidence in since we left Max’s last psychologist in Oregon.  I feel some profoundly deep relief right now.  I spent yesterday reading about NVLD and it was a bit of a revelation.  I got to talk to a friend whose son was diagnosed with this and it’s remarkable how much this processing disorder can look like OCD but with some significant differences.  I am too new to reading about it to explain what it’s all about.  If you happen to be curious I read two articles yesterday that seemed pretty good:

Non-Verbal Learning Disabilites: A Primer

What are Non-Verbal Learning Disabilites?

So we have the next appointment in two weeks and I am feeling hopeful and so relieved that I was a basketcase all of yesterday and got nothing at all done and couldn’t think of anything else.  I have been carrying so much stress over the health and well-being of my kid (I always do – but it’s been exponentially worse in the last few months) and the stress of no one listening to me or helping me – that now it’s leaving my body I feel like I’m in shock.  A good kind of shock, but shock none-the-less.

Meanwhile I have been saying “FUCK YOU!” and “FUCK OFF!” to a whole lot of people in my head like I’ve got a Greek chorus in there.  It hasn’t stopped since yesterday.  It’s directed at people who think all you have to do is force kids to your agenda and they will bend, to people who think my kid is just fine as he is and doesn’t need any help (get your damn self in my shoes and you will see why he seems okay to you and you will die of exhaustion), to everyone who doesn’t believe in ADD or OCD or other mental disorders, to every fucking fucker out there who believes that all you have to do if you have depression is “change your attitude” and “snap out of it” and that all you have to do if you have anxiety is “stop worrying so much”, and to all those smug parents with kids who eat massaged kale salads who think the reason my kid doesn’t eat good food is because I don’t make him, and to all those people who think that my kid is a lying lazy-ass.

Fuck you all.

As for the rest of you – all I can say is thank you for constantly holding me up when I get frustrated and for understanding what it’s like to raise a kid who is really different – awesome and cool but really different – whether it’s because you’re raising one of your own or because you have that amazing thing called empathy and imagination.  You guys are the ones who get me through all the rough days.

Thank you.

*Not totally true.  There have been a few pediatricians and a few fellow parents with kids who eat normally who DO understand that this eating issue of Max’s isn’t something he’s just doing so he can eat crap food.  And I’m deeply thankful for each and every one of the exceptions to the rule of assumptions surrounding extreme picky eaters.

**Don’t even say it.  Shhhh!  Yes, that’s his real last name.

6 comments

  1. Aimee says:

    I am so happy you’re getting action & moving forward. Will continue to cross my fingers that everything falls into the correct place!

    As an SPD parent (and an SPD’er myself), the thing that stuck in my craw is that psychologists have been telling you whether Max has SPD. This is NOT a psych issue! Only OT’s diagnose that one properly. Good gods. How ridiculous.

    Of course I always go back to the sadness that a child must have a specialized plan in place to get the teaching tools he needs. Sigh…

  2. angelina says:

    Hi Aimee – I think you will be happy to know that Dr. Disney told us he’s not qualified to diagnose SPD and he may even have said he’s not qualified to diagnose NVLD either – but he IS able to figure out if it is likely and he did explain that the other psychologist we had was trying to get the school to do the OT testing because Kaiser doesn’t actually do it. The school is refusing because his grades are too high and their stance is that the testing is expensive and they only do them when a kid is failing to thrive in the school environment and they think the kid may need special education – like separate classrooms. So they won’t test Max because we all know he doesn’t need separate classrooms. But if the psychologist can make a good case for Max having NVLD maybe we can either convince the school to do it – or maybe we’ll have to dig deep in our pockets to pay for an OT to see Max ourselves. That would suck but would be worth it IF there was strong indication that he would benefit from it.

    But Dr. Disney definitely made it clear he’s not able to diagnose SPD. The other doctor explained NOTHING to me. The first psychologist felt very sure that SPD wasn’t the issue so he didn’t recommend sending Max elsewhere for OT testing. That may not have served us well but at the time his assessment seemed pretty in tune with my own reading about SPD and ADD.

    I agree about finding it sad that any kid has to have a specialized plan in place to get the tools they need – I will say that Max’s teachers have done really well by Max. There’s more I wanted to put in this post about why Dr. Disney suspects Max has NVLD more than ADD but I know I’m going to say it all wrong – but there was a lot more information and clues that the doc saw that were really interesting and definitely got my attention. I really want to come over to your house or meet somewhere for coffee so we can talk more about this and I can ask you all kinds of questions.

    • angelina says:

      Nicole – for some reason I didn’t see that you had included a link and reading it is AWESOME. Thank you!!! I’m sharing it on fb right now and I just might print it out as you suggest. I would like to have been able to give a copy to Max’s PE teacher this morning. I’m thinking about your old dog right now – is he still hanging on or has he died? Sending you all a huge hug, you know, mentally. XOXO

  3. NM says:

    Angelina,
    I’m glad you liked it. It was fascinating to read it, and see her describing all the behaviors you’ve described Max exhibiting. I hope it helps to get the information out.
    We had our dog euthanized about a month ago. That was hard, but it was time. The vet came to our house, which was great. We buried him (the dog, not the vet!) in the back yard, next to his previously deceased best dog friend, under a cherry tree.
    So now we have one small dog and two cats, which I’m finding very peaceful.
    Saw on Facebook that your mom’s dog is now dying; I’m so very sorry. Those are hard times.
    Hugs to you, too.

  4. angelina says:

    I think being buried under a cherry tree would be really nice. I mean, you’re dead, but cherry trees bring happiness to people and beauty to the world so I think having one’s bones beneath one would be sweet and peaceful. The vet is coming to our house tonight to put Nadia to sleep. She’s stopped eating and is skin and bones and we all realized last night that she looked like she was ready to go. I have honestly thought she might die in the night the last couple nights. My mom will have the vets cremate her. So it’s a heavy day and my mom is losing her best companion.

    I’m so sorry you had to say goodbye to your old friend but I’m glad that at least your house is more peaceful with fewer pets.

    So many dogs have been dying in the last month – what’s up with that?!

    I started laughing when I read the part about examining food and rejecting it for any kind of dark specks or wrinkles – do you know how impossible it is to find hamburger buns that don’t have wrinkled on the top?!! So funny (except for when it makes me want to tear my hair out).

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