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Seeing black spots?


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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

 

In Healing the New Childhood Epidemics by Dr. Bock he talks about vision issues with what he calls spectrum disorders (he has a very broad definition of what is on the spectrum, including PANDAS) and mentions a Vitamin A deficiency. Here's a quote from the book,

 

"Vitamin A deficiency affects they eyes' cones and rod, and contributes to the tendency...to rely upon their peripheral vision. This reliance-the classic autistic sideways glaze- often results in poor eye contact."

 

Maybe his center vision is impaired? He recommends cod liver oil, 1-3 t. per day.

 

I have had what is called an "aural" migraine. No headache, it just started with a spot in my vision that I couldn't see, like I had looked at the sun for a minute. Within 15 minutes I was in my car and realized that I couldn't see a whole spot in front of me and pulled over and called my mom. Now and again I get floaters and realize that I might be headed toward a migraine and take an extra dose of magnesium. That seems to do the trick for me.

 

My son, on the other hand would get another form of migraine, which would manifest in a nauseous feeling. Then his head would hurt, he'd puke and feel better.

 

Other people on the board have talked about "the headaches" that seem to accompany this whole thing.

 

So my thinking is maybe he is having some sort of migraine? Is it all the time? I would definitely try documenting what leads up to the spot episodes if they aren't all the time. By doing that we finally figured out that the stomach migraines were triggered by foods with nitrates, or too much TV, or a movie that had a lot of action. Since we started the magnesium in the Fall he's only had one which was after going to see Avatar in 3D.

 

Another thought I had was that on occasion my son will go through a phase where one of his OCD/tic things is to look at the sun for a minute. After reading a post by Chemar I realized it was one of those tics that they seem to do to cause a little pain which then stimulates a feel good chemical. I guess L-phenylalanine also produces the same chemical, reducing the need to do the tic. My son isn't doing that right now, but if he starts again I will certainly give that a shot so he doesn't wreck his eyes. Maybe your son is actually looking at the sun for a minute or a bright light, causing a blind spot in his vision for a minute?

 

My son goes through periods of reassurance seeking. Now that he is older he is more clever about the way he words it and sometimes it will take me awhile to realize that is what he is doing. And now it usually only takes one confession or checking to make sure what he did was OK or normal or whatever, instead of the over and over and over he did when he was younger. I think this may have been his first symptom but I didn't realize it was one until after he started having contamination issues. And people still tell me they have noticed the tics or OCD. It's not uncommon for them to hold it and then explode when they get home.

 

I'm always amazed at how similar these kids OCD issues are. You would think that each person would come up with their own unique issues because we are all so different. That is another reason I don't think it is a psychological issue. All these kids do and think the same things. It reminds me of the experiments where surgeons touch one part of the brain and the subject cries, then another and the subject laughs. It's like an imaginary brain surgeon going, "we touch here and we get worry that we told a lie, we touch here and we get worry that we didn't get all the pee out, we touch here and we get the need to even things up..." It's bizarre.

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hi. yes, my son's first sign of pandas was that he saw a "big black ball" in his eye. took him to every kind of eye specialist and there was nothing there. later learned that it is due to pandas. my other son (his twin also with pandas) tells me his eyes hurt like there is an eyelash in there. both kids pull at their eyes and stretch their faces to try to "clear" what they see or what hurts.

 

Kari

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I agree that the black spots might be something that he is seeing - sort of a floater.

 

Just to offer up other thoughts - my daughter also looked for black spots - but she is very focused on food, as she had severe contamination fears. So she did a lot of checking & a lot of reassurance seeking. While we found that abx was the best support to dramatically reducing PANDAS symptoms, we also did pretty extensive ERP for all facets of the OCD.

 

Even if he is seeing spots, after you explain once or twice, the excessive reassurance seeking & need for an exact response - that is OCD. If you need any behavorial tools to help with this, let me know & I'd be happy to write up a "brain retraining" suggestion for this situation. Most here seem to find that ERP works best after the majority of an exacerbation is done - or on the down side. We found it to help, but not cure, at every stage.

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My dd saw blue or green dots and flashes of light. She would actually duck when the flashes would come. They have gone away now since being on abx. Her dots were different though because she was aware that they were in her vision and not actually out in the world.

 

Susan

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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

If he stops when you respond to him it may just be a ritual he feels he has to do. I use to go crazy with my daughter when she would ask me questions like "is the dog in the house" and the dog would be right by her. I soon realized she would want me to respond with just Yes If i responded with "Can't you see the dog is right in front of you" she would repeat the same question.

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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

 

 

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious.

 

However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects.

 

Wishing you the best. Keep us posted on how the steroid burst goes.

regards,

amy s

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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

 

 

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious.

 

However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects.

 

Wishing you the best. Keep us posted on how the steroid burst goes.

regards,

amy s

 

 

Amy- Very interesting about the vision. My son actually just got glasses recently. His vision was very bad. Also interesting you mentioned "flashy lights" because he also talks about "sparks". He literally jumps and says "Oh- did you see that spark- I hope it does not start on fire". Sometime I worry that this could just be plain old OCD but then I hear all of the similarities and I truely believe that it has to be PANDAS. Your daughter had IVIG? Did you see improvement? How long ago and how are her symptoms now? Is she on antibiotics now? Sorry so many questions.

 

Thanks

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Just curious if anyone else out there has experienced this. At first my sons constantly obsessed with fuzzies. Feels the need to tell me everytime he thinks that a fuzzy might have fallen on me, etc. Now he has added "black spots". "There is someone black on you. There is a black spot on the wall and on and on and on". He will not stop until you ackowledge that you heard him. Very tiring to listen and respond to. There is obviously nothing to be seen. I was wondering if it was just another irrational thought/confession like soooo many others that he has or if there is actually something going on with his eyes.

 

I am sooo thankful for this forum. We are new to this. I have a difficult time dealing with this because when my son goes away from home people don't seem to notice anything (I notice hints in public) but wow when we get home the confessions, needing CONSTANT reassurence, etc start and don't stop. I can see how people would think I am nuts saying that he is not good because they do not see it. It also plays tricks with MY mind as well. Just got done with a steriod burst and uncertain what we were supposed to learn from that. It almost seemed to make things worse but I am documenting and maybe I am just not seeing the big picture yet. I get discouraged at times but then get hope by reading other peoples experiences- good and bad- but at least I know we are not alone.

 

Thanks for listening!

 

 

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious.

 

However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects.

 

Wishing you the best. Keep us posted on how the steroid burst goes.

regards,

amy s

 

 

Amy- Very interesting about the vision. My son actually just got glasses recently. His vision was very bad. Also interesting you mentioned "flashy lights" because he also talks about "sparks". He literally jumps and says "Oh- did you see that spark- I hope it does not start on fire". Sometime I worry that this could just be plain old OCD but then I hear all of the similarities and I truely believe that it has to be PANDAS. Your daughter had IVIG? Did you see improvement? How long ago and how are her symptoms now? Is she on antibiotics now? Sorry so many questions.

 

Thanks

 

My son sees these "floaters" EVERY time he is having an exacerbations -

The first two or three times, I thought it was some kind of OCD, but as my son has grown older, he has been able to explain in a better way, what he sees, and that he is fully aware, that it is not spots of light, that is actually there, but that it seems as if they are there.

The floaters disappears every time he is getting better -

By the way the floaters are allways associated with light sensitivity -

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