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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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.
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 Sanchez what is it about the Clonidine that causes this?
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.
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.
Possibly a reaction from Clonidine? Check with doctor…
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 for a subsequent comment.) So how do you reconcile that the drug you give him, is PROVEN to cause these maladies? Please address this because I literally cannot wrap my head around how you think each of these issues is somehow a separate, isolated “disease” that needs an emergency trip to some specialist. read the labels of gavin’s meds. It’s pretty awful that he’s even on the medication in the first place. It’s not even approved for use in children. I’m sure you will think i’m attacking you, but the casual way in which you pull your kids on and off meds is startling. Psychotropic drugs are hard for adult, fully formed brains to manage – let alone children’s. Think about getting some new doctors who are less liberal with the dosing.
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 in all that is going on with him, rule out any possibility that medications are behind his decline.
It’s hard not to take offense to the many assumptions you have made.
If you were in the same position we are, you would be forced to make decisions about medications like this as well. We have researched everything before we made a move and unfortunately, Gavin is so complex that the benefits outweigh the risks. I wish it wasn’t like that, but it is and there is nothing we can do about it.
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 search function of your blog, but if needed I can link to the actual posts) where you are pondering how MAYBE SEIZURES could be causing the bedwetting! Again, one of the BLACK BOX warnings clearly states that bedwetting is a side affect of Clozapine. I’m curious exactly how doctors were able to rule out the meds as a cause of the bedwetting. And those so called seizures. Gavin is 12, there is no way that you have exhausted all of his treatment options. I follow your blog and always bewildered by the things you post about your kids and the various meds and specialists you drag them to. Remember when Elliot was having tantrums and really moody? I’m pretty sure you blamed it on Gavin somehow. Gavin was home, gavin wasn’t home, overstimulation. But just a few weeks prior you started Elliot on another psychotropic drug. Adderral? Something similar? I’m sure one of the side-effects was change in demeanor. But that never occured to you… or it did and for the sake of your blog’s popularity (and dramatic effect) it was ANOTHER CRISIS!!! See that’s the thing really. That’s what drives traffic to this blog is that another CRISIS is always around the corner. But most of these medical, emotional, and behavioral problems stem from the decisions that you and Lizzie are making as parents. NOT from unexplained syndromes and reactive attachment disorder.
You claim that the “top experts” have ruled out the meds as reasons for gavin’s health issues. I’m sorry but that’s just not possible. the two are inextricably linked and without a CLEAR diagnosis of an underlying cause (which you don’t have – that’s the problem) occam’s razor is used. I know if no medical professional who would rule out Clozapine as a the culprit. And if they have, and they keep making appointments and ringing up the tab for medicaid, then you should really look for other doctors.
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 where as we are basing our knowledge on personal experience and expert advice, medical testing and scientific proof.
The meds were the very first thing we looked at and one of the very first thing we ruled out. Right now, no one can find a link to connect the dots. The reality is that there may never be a link or underlying diagnosis discovered. We do know for sure that the meds are not the cause. That’s about all we know right now.
You have no idea what you are talking about and I would prefer if you are not going to bring anything constructive to this dialogue, you simply don’t post anything at all.
You present yourself as though you are an authority in the area of Clozapine, and I question your knowledge based on your erroneous assumptions.
Gavin’s decline began long before the medications. The medications DO NOT explain anything that he has going on. There are actually tests to know this for sure. If you were in our shoes, you would know that.
For the record, I would give anything for my kids to not go through any of this. I would give up this blog in a heartbeat.
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 they did it. Well, maybe they committed mass murder because they were crazy, which would also be the reason they were taking psychiatric medication. That sounds like a much simpler explanation to me.
Right now this kind of thing is driving me nuts. I’m arguing with this girl on Twitter who seems to genuinely think it was better to leave my own severe depression untreated and have me chronically suicidal throughout my adolescence (I dropped out of school at 13 in large part because of my severe depression) then to have put me on some kind of medication. Once I got on anti-depressants and realized they actually worked, it felt like I’d been asleep for all my life and had just woke up. I mourned an entire wasted decade, needlessly lost to the fog of depression.
A little-known fact: people with long-term, untreated depression actually have their brains, specifically the hippocampus, shrink. Not down to nothing, but enough for it to get picked up in brain scans. The study of this phenomenon ruled out other causes for the lost gray manner and concluded that the reason was depression. So a person can be literally “losing their mind.” I showed the first signs of depression at age eight and didn’t get proper treatment till I was 22; I wonder if I’ve lost more than time as a result. I’ll never know. And I’m rambling so I’ll stop now.
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.
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!” You live your life online for the “world” to see Rob so have a thick skin and engage in this dialoge with me. i’m a legitimately curious/concerned for your family and actually devote a fair amount of time to thinking about this. Not every comment is all **hugs & prayers!** as much as you wish it would be. Every once in awhile you might run into someone who is going to call bulls&^t. in your words, “does this make sense?”
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 alike – come up with the same answer, “No.”
So, look, I know you’re concerned. I know you *think* you have the full story but the fact remains that we are the only one’s who do. Simply because Rob posts *nearly everything* doesn’t mean he does. Sometimes life gets in the way. Sometimes, like with the bed wetting, he didn’t post anything until it was to a point where we wanted to know if perhaps someone else was experiencing something similar. We were looking for hints, tips, help from those who may have been there before us. That’s why we post most of what we post. Not for ratings, as you put it. Not for attention. But for help, for support and in the rare case that *we* are the parents who happen to be there first to offer an option to those who may need one. (For example, one of my most popular searches is for my posts about my migraine infusions because while many have been through them, few post about them.) That’s primarily what we aim to do, help the few who end up where we are and need some help and support.
Pink eye is going around. 🙁
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.
Just because you’re paranoid doesn’t mean they’re not out to get you. 🙁
MeaghanGood that’s an awesome quote 🙂
MeaghanGood Hey Meaghan! I knew I saw them watching from the shadows! I knew it! 😉
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.