Is this “normal” or something to worry about?



I received a call from Summit Academy this morning.  Gavin is in the office, in tears because his eyes hurt so bad.  The secretary told me that Gavin’s eyes began hurting and we’re really itchy.  Now they were extremely read and he was calm but upset.

I had to go bring him home. 

Lizze was sleeping because she’s not feeling well and I had to wake her up. 

Because of the RAD and the dynamic that their relationship has taken on as a result, I needed to prepare her for him to come home.  She was 100% on board and told me to bring him home quickly so she could give him some benadryl and hopefully relieve his distress.



At this point, Gavin is medicated and sleeping in his bed.

When I got to him at school, he was sitting just outside the office, sobbing. 

His eyes were very, very red.  Around his eyes almost looked bruised from him rubbing them.  Although, it didn’t show up well in the picture. 



Here’s my concern, rational or not.

He’s never had this type of reaction before.  He’s on allergy meds already but I don’t ever remember anything like this before and neither does Gavin. 

I have a million things running though my head right now. 

Is this just allergies, albeit new ones? Is this something else? Should we be concerned? Is this a sign that something is changing within him?

I may sound paranoid but when you have a child like Gavin, that charts new territory with his life threatening and  bizarrely rare health issues, there’s no way to know for sure.

Most of what we know about him was discovered somewhat by accident and because of something random thing that showed up out of nowhere.

Call me paranoid but I’m paranoid for good reason.

We are going to call his allergist/immunologist today and find out what she wants us to do.  All we can do is have him seen so that we can either discover the new chapter in his life or put our fears to rest because it’s just allergies.

My body was not meant to handle this amount of stress. 🙁

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Gilda M Sanchez
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Gilda M Sanchez

Possibly a reaction from Clonidine? Check with doctor…

Colleen Kenny Murphy
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Colleen Kenny Murphy

My Aspie son is extremely sensitive to light and his eyes can get like this if he goes too quickly from darkness to room light or worse even is sunlight. He also takes clonidine but I have not noticed that contributing to this issue. If a doctor shines a light in his eyes…forget it…he cant open up and the water just flows and flows…then the itching and rubbing. Good luck. It’s never easy.

Michael Miller
Guest

I wouldn’t be paranoid unless it happens again. Sometimes shit really does happen. Besides, if you take him to a doctor – odds are he’ll just be put on ANOTHER medication and based on what you’ve posted here during the time I’ve been following, the kid’s on enough meds as it. Be concerned, but don’t jump the gun either.

Katrina Farrah
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Katrina Farrah

Looks allergy related, we’ve got allergy meds but still need eye drops as I believe a film of birch pollen collects on my daughters eyes making them itch. We’ve also experienced eye problems with meds but this was more a build up of pressure making them painful rather than them being itchy.

Rob Gorski
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Rob Gorski

Gilda Sanchez what is it about the Clonidine that causes this?

Gilda M Sanchez
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Gilda M Sanchez

The symptoms he had were excessive eye-blinking (uncontrollable) from too much Clonidine (paradoxical effect). It is called Blepharospasm or eye dystonia. The symptoms are painful irritation and spasms of the muscles of the eye. See http://www.dystonia-foundation.org/pages/more_info/44.php

Gilda M Sanchez
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Gilda M Sanchez

More on paradoxical effects of meds: Clonidine might have effects on dopamine in some areas of the brain. The basal ganglia is implicated in most dystonias. As quoted from emedicineMedScape.com : Although drugs from a variety of different classes have demonstrated some effectiveness in blepharospasm, drug therapy for blepharospasm and facial dystonias usually are based upon the following 3 unproven pharmacologic hypotheses: (1) cholinergic excess, (2) GABA hypofunction, and (3) dopamine excess.” What this means is Gavin may possibly be going through irregular circuit control that functions under these neurotransmitters. Benadryl may help with modulating cholinergic activity (anti-cholinergic)…….-ask his doctor.

MeaghanGood
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MeaghanGood

Just because you’re paranoid doesn’t mean they’re not out to get you. 🙁

lostandtired
Guest

MeaghanGood that’s an awesome quote 🙂

fibromamaby3
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MeaghanGood Hey Meaghan! I knew I saw them watching from the shadows! I knew it! 😉

heatherruark
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heatherruark

Pink eye is going around. 🙁

fibromamaby3
Guest

heatherruark Good point. I think it’s most likely his allergies. When my allergies first surfaced my only symptom was my eyes, both of them, were swollen completely shut. It completely freaked my mother and Granny out, especially because it happened at my Granny’s farm someplace I had been a thousand and ten times before. Gavin had been outside for Martial Arts just before his eyes looked like this. So we’ll likely mention it to his allergist next time we see her to chat about his primary immunodeficiency.

ConfusedConcerned
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ConfusedConcerned

here’s what I find weird – that you have some medical training, you see doctor after doctor yet NO ONE is pointing to the very obvious fact that the medicine you have Gavin on lists the following side effects.  Clozapine also carries five black box warnings, including warnings for http://en.wikipedia.org/wiki/Agranulocytosis, http://en.wikipedia.org/wiki/CNS_depression, http://en.wikipedia.org/wiki/Leukopenia, http://en.wikipedia.org/wiki/Neutropenia, http://en.wikipedia.org/wiki/Seizure_disorder, http://en.wikipedia.org/wiki/Bone_marrow_suppression, http://en.wikipedia.org/wiki/Dementia, http://en.wikipedia.org/wiki/Hypotension, http://en.wikipedia.org/wiki/Myocarditis, http://en.wikipedia.org/wiki/Orthostatic_hypotension (with or without http://en.wikipedia.org/wiki/Syncope_(medicine)) andhttp://en.wikipedia.org/wiki/Seizures.http://en.wikipedia.org/wiki/Clozapine#cite_note-18 Lowering of the http://en.wikipedia.org/wiki/Seizure_threshold may be dose related and slow initial titration of dose may decrease the risk for precipitating seizures. Slow titration of dosing may also decrease the risk for orthostatic hypotension and other adverse cardiovascular side effects.http://en.wikipedia.org/wiki/Clozapine#cite_note-MCQ-19 I’m particularly looking at the orthostatic hypotension. (and many others but that’s… Read more »

lostandtired
Guest

ConfusedConcerned I’m not sure what’s with all the pictures in your comment. First of all, there’s nothing casual about medication given to our kids. I would suggest that you do some research by reading into the Archives before making assumptions like that. As far as Gavin is concerned, the Clozapine was an absolute last resort. He’s schizophrenic and CANNOT go unmedicated. We have exhausted all other medication options first. Gavin has to have bloodwork done, before he can get a refill of the Clozapine in order to ensure that everything is okay. We have had some of the top experts… Read more »

ConfusedConcerned
Guest
ConfusedConcerned

lostandtired ConfusedConcerned  sorry about the pictures – i have absolutely no idea where those came from. Here’s the thing Rob. There’s a logic principle that you clearly aren’t familiar with: Occam’s Razor. Have you heard of it? Boiled down, the simplest answer is usually the right answer. OR When you see hoof prints – look for horses, not zebras. I’ll give you an example of my previous comment that comes from your own blog. Months ago you wrote about Gavin wetting the bed. You took him to the hospital for seizure tests. You have blog posts (my memory is way better than the… Read more »

lostandtired
Guest

ConfusedConcerned lostandtired look I appreciate your concern but you are not in a better position to understand what’s going on than we are. I don’t care whether you believe me or not. This has nothing to do with wanting drama for ratings. That’s just sad that you would even say that. Our doctors are the heads of their respective departments at the Cleveland Clinic and in reality, it quite literally doesn’t get much better than that. I understand what your saying but simply because those are possible symptoms doesn’t mean that why Gavin is experiencing them. You are making assumptions… Read more »

MeaghanGood
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MeaghanGood

lostandtired You go, Rob. Some people who are anti-psychiatry (not saying ConfusedConcerned is one of those people, just speaking generally) will assume that anything untoward that happens is a result of the meds. Someone who is suffering from severe depression and starts a course of anti-depressants and then attempts suicide, for example, must have done so because of the meds, not because they were severely depressed and very possibly suicidal to begin with. You see a lot of anti-psychiatry websites listing people who committed mass murders and pointing out that most of them were taking some kind of psych med when… Read more »

lostandtired
Guest

ConfusedConcerned quoting Wikipedia doesn’t mean that you know more about these things that either myself or my wife. We’ve are all to aware of the risks involved and if we are willing to take them, it is a testament to the dire situation we are in.

ConfusedConcerned
Guest
ConfusedConcerned

lostandtired ConfusedConcerned  The fact that I can look up the meds on wikipedia doesn’t mean I know more. But the fact that I can interpret the medical evidence from a clear, fresh set of eyes should mean something to you. I think that the boys’ drama means more for you to blog about, more popularity for  your blog, more financial incentive for you to be in this “dire situation’. I mean, think of how your popularity would drop if you posted a blog saying “hey! Gavin’s medical drama solved. All we needed to do was take him off the not-approved-for-kids-psychotropic-drugs we have him on! hooray!”… Read more »

fibromamaby3
Guest

ConfusedConcerned  You know I was all set and ready (I even have a list of notes.) to point out the errors of timing in why it ISN’T the Clozapine causing those issues. I was ready to tell you again how every, single time we see a doctor – be it a scheduled appointment or an appointment in the Emergency Department – first, we list the medications and dosages. Then we ask the same question you’re asking, “Could this be from one of his medications?” So they run the tests, they check and they all – Akron Children’s and Cleveland Clinic… Read more »