Posted 11 March 2007 - 01:46 PM
Could use a little help/advice. I have gone through the medical papers and nothing lists hallucinations as a symptom for sclero. Does anyone have any facts on this possibility or has anyone else suffered the same. Gareth's started as the slapping around his mouth. Now it'smacking the air for bugs (?) or smacking behind his head as if to hit someone standing there. I will take him in tomorrow to have his ears/eyes checked, but wish there was some info to go in with. Of course, when I ask him why he did that or does he see bugs, I get no answer.
Thanks everyone.........take care,
Posted 11 March 2007 - 02:16 PM
Keep us posted.
Posted 11 March 2007 - 02:34 PM
I was thinking the same but the only thing he has been taking is Motrin and Tylenol....all within the recommended dosages, too. Neither one of them list hallucinations as side effects, though. His primary care physician is really good....I am sure he will run a gamet of blood tests tomorrow. I was really hoping someone could come up with an article or something.......
Thanks and take care,
Posted 11 March 2007 - 02:56 PM
It's funny that you mentioned swatting the air for bugs since I was doing that one day! I have "floaters" in both eyes, and a new one turned up suddenly that had me going crazy! For about 10 minutes in the bathroom one day, I sat there trying to get this stupid little gnat away from me before it dawned on me it was my eye. Your son may have floaters, and if he doesn't recognize a new one immediately, he might think it's a bug.
There are a lot of strange sensations that hit the body, and it may be that Gareth is experiencing new ones that he will eventually become accustomed to, but for now they're bothering him terribly. Sometimes it feels like my hair is being touched, or my face, or there are bugs walking somewhere on my body, but when new sensations start it may take me a while to stop looking or swatting. Let's hope it's just a simple thing like this and that Gareth will adjust.
Hugs to both of you,
Posted 12 March 2007 - 09:20 AM
Sherrill, that is intersting that Motrin would cause those side effects. I know............ every med has some side effect......######.....you just don't know. I did have Gareth in to his primary care physician today and he has a whopper of a left ear infection. Drives me nuts.....I asked him all weekend if his ears hurt ("No hurt" he said) and he had no fever. Also, I have an appt with his psych doctor tomorrow to check out the 'schizo' issues. Between the two of them, they will run the gamet of blood work.
Elehos....his primary care physician wants him checked for floaters, too. Gotta find an eye doctor, now!!! He doesn't want him to go to an optomitrist, but a REAL eye doctor, he said.
Thanks, Everyone. I sooooooooooo appreciate your help.
Posted 12 March 2007 - 01:45 PM
Take care, Everyone.
Posted 12 March 2007 - 03:28 PM
BLESS YOUR HEART!!!!!!!!!!! You are such an incredible mom!!! I admire your strength and courage. It is bad enough that I have this stuff. I can't imagine dealing with my child having it. Gareth's plate is too full for such a youngun'. Can you tell I am from the south?
Take care and I hope you get some answers.
Posted 12 March 2007 - 05:55 PM
Is there anyone that works with and knows Gareth's behaviors well outside the home? Did/does he work with an aide at school? I ask because all kids have at home behavior and outside the home behavior. And as parents we see our kids through parent eyes. Someone who works with and knows Gareth well outside the home environment might be able to help you "crack the code" on some of these behaviors he's exhibiting or at least give you some insight to help.
This has to be so frustrating and even frightening for you. I also imagiine you can even lose patience when you've asked over and over does your ear hurt and the answer is no and then you find out that the ear is infected!!! And then that of course, leads to a major dose of mother guilt. There is no winning at that game, so don't play; you're doing an angel's job! And doing quite well.
You've gotten lots of great ideas as to what might be going on...just keep paying attention and your mind open.
Posted 13 March 2007 - 02:40 PM
Well, today Gareth got up and was still swatting at 'things' so I kept him home. He napped from 8:30-11:00 and woke up with puss and fluid drainging from his ear. Blew out his ear drum....again....only the 8-9th time!!! Twice today, I heard him say "ear hurts." Now.......if I can get him to tell me that BEFORE he starts hallucinating and blows it out!!!
Emmie.....he has a 1-1 aide at school and all his teachers have been trying to piece together why he has been acting like he has. They have been great this school year considering his academics have declined dramatically and he's gone from this happy, go lucky kid to a very reclusive kid.
I had him in to his pediatric pscyhiatrist today because of the swatting and hallucinations. His doctor also brought in another doctor that works with autoimmune psychiatric problems. WHAT?? I told him that I was just informed that Scleroderma doesn't affect the brain/cognitive functions and he just looked at me and gave me the reasoning behind why ANY autoimmune disease affects the brain. Has to do with T cells, interferon, seratonin, etc. Sure made sense to me!!! Anyways, they want to wait till Gareth finishes his antibiotics and keep him off the Prilosec. I am to call him in a week or sooner if he appears to get worse. Gareth is already on meds (Luvox) for OCD....another autism 'problem.' He said we may have to change the Luvox to somethign else.
Take care, Everyone, and once again, thanks so much for all the helpful hints.
Posted 13 March 2007 - 05:04 PM
That is wonderful that you have access to a doctor that works with the psychiatric manifestations of autoimmune diseases. There is thinking that autism is possibly autoimmune is there not?
I am also envious...I have what is called Hashimoto's Encephalopathy. It is a rare neurological complication of Hashimoto's thyroiditis (autoimmune hypothyroidism--low thyroid which is fairly common.) It is fairly recently recognized--the late '60's--poorly understood, hard to diagnose (I am fortunate) and difficult to treat. They think that somehow neurons in the brain come under attack. There are different symptoms in different people, sound familiar? And there can be psychiatric manifestations which is why I am envious. I would love to be able to see a psychiatrist who understood the process and who had maybe even heard of the disease. Most of the doctors have to do some research because they've never heard of it!
But anyway, what I want to offer is that sometimes what happens with me is that when I finally give an answer and people say "we've been asking you for days now" my respone is usually something "well, you didn't ask me in those words". In other words, my brain needs to hear certain words in order to be able to answer a question. It cannot make certain "leaps" any more. I can't explain it. It just doesn't do it any more. It works just fine in some ways; I've lost other things. I don't know if that helps or not.
I just feel for you and Gareth. Hugs.
Posted 16 March 2007 - 05:24 AM
Posted 16 March 2007 - 05:40 AM
Welcome to the Sclero Forums, I'm sure sorry it's due to you battling so many diagnosis! You will find a wealth of information, support and friendship here. Welcome!