While I was originally really stressed out and worried about rescheduling Gavin’s day at the Cleveland Clinic, it’s actually worked out for the best.
I have the appointments rescheduled already and this time there’s only an hour between each one.
This will work loads better for Gavin and it’s only 2 weeks out. This is a really good thing and I feel much better now that it’s all figured out.
Later on I’ll share what happened at our wraparound meeting this morning but right now we have more pressing matters.
Gavin has an emergency appointment with Dr. Reynolds and this is really important appointment because it appears that Gavin is inside of a psychotic episode and we need to address his meds ASAP before this gets any worse.
Historically, when this has happened, it goes downhill rapidly and he ends up in the psych unit at Akron Children’s Hospital.
I’m so desperately praying that A) we’re wrong, which I don’t think that we are, or B) we can correct what needs to be corrected and pull Gavin back into reality.
This is a topic that is very difficult to understand unless you have experience with it. Please rest assured that we are doing everything that can possibly be done. This is one of the reasons we were trying to get Gavin into residential treatment.
With Gavin, reality and fantasy has always been a very, very fine line. At this point, that line is at minimum, blurred, at worst, broken.
Please keep Gavin in your thoughts and prayers today.
Thanks
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I’ve been reading the many posts and I don’t know the best place to share this thought, but here I go…
We all (including Rob) need to keep in mind we don’t see EVERYTHING that takes place in this family. In my opinion, we don’t see many posts about good days (or meals) but we don’t know if that is because they don’t take place or because they aren’t shared.
Take the meals for example. Without looking at the blog, how many food / meal posts can you describe? I’ll try. Gavin had oatmeal – Rob made chicken soup – the kids like pizza – foods can’t touch – ramen noodles. Now I have to ask myself if I believe that they have only eaten oatmeal, ramen, pizza and chicken soup for the past year??? Of course I don’t, I just haven’t heard the rest (nor am I owed a dietary journal) Now, if we don’t see EVERYTHING, we really can’t judge ANYTHING.
I hope that Dr Patti ‘sees’ everything, but if something was hidden from her – she wouldn’t be able to set the correct treatment plan. Same way with other doctors or teachers. Rob and Lizze owe them 100% honesty and cooperation. They don’t owe us anything at all.
I’ll admit, I read and wonder ‘what are they thinking?’ then I remember that I can only relate on my terms and I shouldn’t respond out of my ignorance to the subject or the situation. I hope we all keep that in mind when we are reading and posting.
Although, I’ll say it again Rob – A tree nut allergy and peanut allergy are two different things. You can’t use the terms interchangeably. 🙂
MBee 🙂 As far as the allergy goes, it’s labeled as a treenut allergy. Our allergist has banned him from all nuts, including peanuts and peanut oil. I’m not sure what else I’m suppose to call it.
The paperwork we have lists peanuts as part of his allergy.
Thank you for your above statement.
lostandtired MBee When I had my first allergic reaction to tree nuts at 2 years old, the allergist also banned me from peanuts. It was a smart move because later on, when I had skin prick allergy testing, I was also found to be allergic to peanuts too. I’m not exactly sure why the Allergist said no-peanuts after the tree nut allergy event….but I’m glad we did. I guess I now have a question for my allergist! 😀 Thanks MBee!
mkosmicki1 lostandtired MBee it’s because there is a high probability of cross over allergies. Meaning that if you’re allergic to almonds, there’s a good chance that you can or will become allergic to other nuts as well. They call it crossover.
It’s also safer and easier when explaining to people what’s going on, if you just say treenuts and peanuts because they are banned from his diet anyway due to that high risk of crossover.
Gavin is always in my thoughts, as is your whole family. I too hope that you are wrong or can correct this episode quickly. Love to you all.
Gavin is always in my thoughts, as is your whole family. I too hope that you are wrong or can correct this episode quickly. Love to you all.
Gavin ends up having a psychotic break just a couple of days after you permanently ban him from Legos. But I guess that you consider that to be just a mere coincidence. Seriously, I have a degree in psychologly with a Freudian empahsis–so I know this stuff inside and out. Legos serve as Gavin’s link to the real world. He spends less time in his fantasy world if he focuses on building things with Legos. Believe me, if you restore Gavin’s Lego priviledges, Gavin will become more in touch with reality again.
Dwayne Murphy I wish you would just stop. Our psychiatrist is widely considered one of the only specialists in childhood schizophrenia. You have no idea what you’re talking about as it pertains to Gavin. If you were a true professional, you would never tell someone what to do without having seen the person in question.
Please stop. This has absolutely nothing to do with Legos and has been something that has been of concern for awhile now.
All you are doing is adding confusion to the mix and.
The problem is that he’s hit puberty, gained weight and has autonomic dysfunction. All of these things affect how his medications work. We knew this was going to happen, we just didn’t know when.
lostandtired Dwayne Murphy Since you feel that I’m “adding confusion to the mix,” you must, deep down inside, know that I’m on to something but you’re so determined to control every aspect of Gavin’s life that you’re just going to continue on your stubborn path.. I never said that I’m a professional–but I do have knowledge and experience, which is what truly counts.
Dwayne Murphy Spoken like a true Freudian. Back down Dwayne. You’ve said your piece.
mkosmicki1 Dwayne Murphy I never back down.
Dwayne Murphy Well then, if you are truly a licensed psychiatric professional, you would understand that diagnosing a patient you do not know and have not seen is highly unethical.
I’m an autism mom and cognitive-behavioral scientist. I don’t back down either. You pick on one of us, you pick on all of us.
mkosmicki1 Dwayne Murphy Yeah. . .you’re a real hero. Now tell me which character and which movie I’m quoting from, and I’ll behave. I promise. LOL
lostandtired Dwayne Murphy Since when do people have psychotic breaks when their toys get taken away? It reminds me of that old “refrigerator mothers” theory with schizophrenia and autism. And the whole “blame the parents for kids’ mental illnesses” school of thought in general.
MeaghanGood lostandtired Dwayne Murphy Anything can cause a psychotic break, and in this case, the evidence suggests that Gavin would be doing better if his Lego priviledges were restored.
Dwayne Murphy MeaghanGood lostandtired How does “the evidence suggest” this? So he had a psychotic break after being banned from Legos. Well, he also went to the park recently and another child made fun of him. Maybe he had a psychotic break because of THAT. Oh, and school ended. Maybe it was because of THAT.
Dwayne Murphy MeaghanGood lostandtired Seems you don’t pay too close attention to things. He’s been having these increasing symptoms for at least a year or more, if you read through the blog posts. He’s always been talking nonstop about Sonic this and Sonic that. That line between fantasy and reality became blurred, and it wasn’t until they had him home long enough to get him seen by his doctors did they realize that it was past just a typical autism fixation. You should really just stop, you don’t seem to know anything helpful. Legos are just toys, kids don’t have psychotic breaks just because a toy was taken away. Gavin I’m sure has many other ways to keep himself busy and happy during the day, and as Rob stated he doesn’t even seem to mind that he can’t use legos right now. Why are legos such a big thing for you to get hung up about?
hmm…..maybe he had his legos taken away as a child??? lol
MeaghanGood Dwayne Murphy lostandtired You may be onto something about school and the mean kids just as I am on to something about the Legos. . .
Dwayne Murphy MeaghanGood lostandtired I was being sarcastic. I just meant there’s as much “evidence” to support a school theory or bully theory as legos theory. I bet Gavin consumed water, and also pooped, within 24 hours of his psychotic break too…
Hang in there Rob. Praying for the best for Gavin.