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I have read older posts and know this has been a subject matter, but still would like to get information on this. My d has had this happen a few times before. Yesterday, she had vision changes while she was at school. She described it as she could read her books but could not read the board and everything far away had a halo or fuzzy looking. She had a headache and took 2 advil and made it through the day. She amazes me at what she is able to do. She is only 12. Has anyone found out what is going on when this happens/ if it happens at all?

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I have read older posts and know this has been a subject matter, but still would like to get information on this. My d has had this happen a few times before. Yesterday, she had vision changes while she was at school. She described it as she could read her books but could not read the board and everything far away had a halo or fuzzy looking. She had a headache and took 2 advil and made it through the day. She amazes me at what she is able to do. She is only 12. Has anyone found out what is going on when this happens/ if it happens at all?

 

Yes, it happens to my son. It is not lack of eye contact but seems like a real aversion to long, sustained gaze. He avoids the TV, need low light, has a hard time looking off in the distance for more than a fleeting look and prefers to play close with small toys not big games that involve large space.

There is an OT on this board who asked about OT related PANDAS symptoms back in August.

I asked her about it at the time.

I should ping her. I'll re-post if I hear anyting.

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My dd8 began complaining of trouble seeing the overhead about a week into school. I took her to an optometrist and said she was so close to 20/20 that glasses were not needed. She also complains of headaches. This morning she told me that all the letters blur together and she can't make the individual letters out. I told her we could try another eye dr and would live more info before we go.

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My dd8 began complaining of trouble seeing the overhead about a week into school. I took her to an optometrist and said she was so close to 20/20 that glasses were not needed. She also complains of headaches. This morning she told me that all the letters blur together and she can't make the individual letters out. I told her we could try another eye dr and would live more info before we go.

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My daughter (16) has had definite, measured vision changes, which began shortly after the PANDAS symptoms began (about 5 years ago.) I didn't really believe her at first, although she kept telling me her vision was getting worse. It was confirmed by the ophthalmologist (and then I felt like a bad mom!)

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My dd8 began complaining of trouble seeing the overhead about a week into school. I took her to an optometrist and said she was so close to 20/20 that glasses were not needed. She also complains of headaches. This morning she told me that all the letters blur together and she can't make the individual letters out. I told her we could try another eye dr and would live more info before we go.

 

 

is your daughter seeing a neurologist for pandas? you may want to investigate migraine headaches with aura. when i have one, i cannot read correctly -- the words are a little off -- some blurry but not really in a straight line. there can be many strange symptoms with the aura.

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My ds18 (who we are currently in the process of screening for PANDAS/PITAND so we don't know yet if that's his dx) has, with our most recent exacerbation, become very sensitive to light & has difficulty looking at things full on - esp. eye contact.

 

He had similar issues years ago, but they went away as we were working on diet & supplement therapies to help him, now they are back & much worse than they were then. :(

 

Whatever is going on in his body, the vision issues are definitely related in our case.

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My dd8 began complaining of trouble seeing the overhead about a week into school. I took her to an optometrist and said she was so close to 20/20 that glasses were not needed. She also complains of headaches. This morning she told me that all the letters blur together and she can't make the individual letters out. I told her we could try another eye dr and would live more info before we go.

 

 

is your daughter seeing a neurologist for pandas? you may want to investigate migraine headaches with aura. when i have one, i cannot read correctly -- the words are a little off -- some blurry but not really in a straight line. there can be many strange symptoms with the aura.

 

Thank you for the information. We have our first appt for her with Dr L the end of this month. Are you able to function and get through your day when the migraine happens?

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Have you looked into Lyme Disease and coinfections? Dr. Joseph Burascano (a well-known Lyme doc) has developed a comprehensive "checklist" of symptoms to help determine whether someone should be evaluated for Lyme. Blurry vision, double vision and sensitivity to light are on the list. Of course these symptoms alone don't mean its Lyme, but it did catch my attention because these are not classic PANDAS symptoms. A number of parents and kids on this forum are turning up positive for Lyme as well as strep and mycoplasma, so it may be worth looking into.

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We have not checked for Lymes but she has never been bit by tic. Or am I being ridiculous there are many ways to get Lymes. We have tested MC test and have PANDAS and are in IVIG treatments We also have high strep titers that continued to drop with antibiotic treatment. Not any other infections with extensive blood work, including some Lymes testing (not extensive). So, should we test for Lymes?

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My son has visual perceptial motor delays. He tests several year behind age level in the Berry VMI testing. We do Visual motor training exercises in OT and at home. He also wear glasses because of eye strengthing not for vision. One eye is stronger then the other and the glasses help to strengthen it. His vision tests good. His use of lines and spacing have always been a challenge. He sizes letters differently. Maybe this is part propriosensory. Word searches, hidden pictures, copying shapes, geoboards with rubberbands, have helped. He does something called Brain Gym. These are activities to wake up parts of the brain. http://www.braingym.org/

His visual issues became apparent about five years into the PANDAS. One problem is when he gets raged he loves to throw his glasses. He broke one pair in half. From day one he used the glasses on the ground when he got mad. He knew he could upset me! At $150 a pair yes I get upset and I can't hide it.

Edited by michele
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Thank you for the information. We have our first appt for her with Dr L the end of this month. Are you able to function and get through your day when the migraine happens?

 

 

awesome! i believe - but don't know b/c we don't see her -- but before Dr. L was so invovled with pandas, she specialized (and probably still does as well) in neurological headaches!

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She could be experiencing optical migraines - where there is actual temporary problems in the visual lobe of the brain. I experienced it myself once and it looked like I was looking through beveled glass in my peripheral vision. It was very odd. It was during the height of one of my son's PANDAS exacerbations and the opthamologist told me they are frequently brought on by stress! (Stressed?? not me!). I would imagine that other things, like inflammation, may also be triggers - but I really do not know.

 

Are you planning to take your daughter to the regular doctor or an opthamologist or a neurologist? It would be good to get it checked out.

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We have not checked for Lymes but she has never been bit by tic. Or am I being ridiculous there are many ways to get Lymes. We have tested MC test and have PANDAS and are in IVIG treatments We also have high strep titers that continued to drop with antibiotic treatment. Not any other infections with extensive blood work, including some Lymes testing (not extensive). So, should we test for Lymes?

 

There are other ways to contract Lyme than a tick bite. For a child, its possible to contract it from mom in utero. For adults, there is evidence that it can be sexually transmitted. I've heard on this forum that it can be transmitted by mosquitoes or fleas, but I've never read that elsewhere, so I don't know. But many people with Lyme don't remember being bitten by a tick and many never have a rash, so this doesn't rule it out.

 

I think the best way to rule out Lyme and coinfections is to have her evaluated (not just tested) by a "Lyme-literate MD." They are the most experienced at doing the testing AND know what symptoms point toward which infections/problems. A good Lyme doc will take a comprehensive look at your daughter, including looking at possible mold exposure, viruses, food allergies, heavy metal toxicity, mycoplasma (which is very hard to test for), Lyme, Bartonella, Erlichia, Babesia, Strep.

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I'm quoting below from Wikipedia/Basal Ganglia. It makes sense to me that vision would/could be affected by PANDAS since the BG has a role in eye movements. I don't know if I have really seen that mentioned as a symptom (everything starts to run together). It does make me wonder how vision therapy works for ADHD & other learning issues if it is a brain thing. (Some of you know from an earlier post that I have questioned OT for PANDAS due to it being abrain thing.)

 

Eye movements

One of the most intensively studied functions of the BG is their role in controlling eye movements.[5] Eye movement is influenced by an extensive network of brain regions that converge on a midbrain area called the superior colliculus (SC). The SC is a layered structure whose layers form two-dimensional retinotopic maps of visual space. A "bump" of neural activity in the deep layers of the SC drives an eye movement directed toward the corresponding point in space.

 

The SC receives a strong inhibitory projection from the BG, originating in the substantia nigra pars reticulata (SNr).[5] Neurons in the SNr usually fire continuously at high rates, but at the onset of an eye movement they "pause", thereby releasing the SC from inhibition. Eye movements of all types are associated with "pausing" in the SNr; however, individual SNr neurons may be more strongly associated with some types of movements than others. Neurons in some parts of the caudate nucleus also show activity related to eye movements. Since the great majority of caudate cells fire at very low rates, this activity almost always shows up as an increase in firing rate. Thus, eye movements begin with activation in the caudate nucleus, which inhibits the SNr via the direct GABAergic projections, which in turn disinhibits the SC.

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