Drooping eyelids, sensitivity to sunlight?

[fiveam]

I'm trying to make a list of PANDAS symptoms that I see frequently in my son. One thing I have noticed is that his pupils seem to be dilated even in the presence of light. Some times they are widely dilated, other times not so much but still more so than w/my other 2 kids. I'm assuming that this makes one more sensitive to sunlight. My son gets extremely anxious when going out on a sunny day. It always hurts his eyes. I've read that this can be a symptom, or something to look for w/PANDAS. I've also noticed that his eyelids tend to be very droopy. About 75% of the day his eyes appear to be half closed...has anyone else ever noticed this w/their PANDAS kids? My son tends to have little energy, is pale and I would guess anemic. This is puzzling to me since he gets a multivit pill everyday that contains 111% RDA. I am always a little reluctant to supplement iron because I don't want to exacerbate constipation which he also has. Maybe it's the B vitamins?

 

We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results?

 

Sorry for rambling I am really grasping at straws these days!

[kim]

We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results?

 

I would really recommend that you call the office and go and get a copy of the results or have them faxed to you. Then ask questions here, or start researching what those highs and lows could mean.

 

I don't want to add to your anxiety and don't know how likely this might be, but thought you might want to take a look at this. Seems like these transient neuromuscular symptoms go right over most Dr.s heads when they are present!

 

http://www.nlm.nih.gov/medlineplus/ency/article/003035.htm

 

Both eyelids drooping:

 

Medical problem, such as myasthenia gravis

 

http://www.nlm.nih.gov/medlineplus/ency/article/000712.htm

Myasthenia gravis

 

If you feel that there are medical issues that are going unaddressed, keep at those straws!

Edited April 23, 2010 by kim

[fiveam]

We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results?

 

I would really recommend that you call the office and go and get a copy of the results or have them faxed to you. Then ask questions here, or start researching what those highs and lows could mean.

 

I don't want to add to your anxiety and don't know how likely this might be, but thought you might want to take a look at this. Seems like these transient neuromuscular symptoms go right over most Dr.s heads when they are present!

 

http://www.nlm.nih.gov/medlineplus/ency/article/003035.htm

 

Both eyelids drooping:

 

Medical problem, such as myasthenia gravis

 

http://www.nlm.nih.gov/medlineplus/ency/article/000712.htm

Myasthenia gravis

 

If you feel that there are medical issues that are going unaddressed, keep at those straws!

 

Kim,

 

Thanks for your reply. I actually had an appt w/Dr Latimer this week but she canceled and we rescheduled for next week. We got the CBC results from the ped GI because we wanted to take a copy to Dr Latimer. So we have the results and we faxed a copy to the ped so that they could interpret the results for us. The numbers seem to have been indicating to us (as parents) that Michael was fighting an infection. However, he is homeschooled, doesn't go out much and hasn't in the last week been exposed to any apparent infections so though the highs and lows weren't terribly dramatic they were not in the normal range. If Michael has a neuromuscular condition do you think Dr. Latimer would be able to dx this or do we need to yet another specialist?

 

The symptoms for MG do ring a bell but Michael is not a typical candidate for this is he? He's only 6.5.

[Stephanie2]

My 2 year old is at times sensitive to bright light (since he came out of the womb). He puts his arm over his eyes when it happens. I have not made a connection to his pandas exacerbations, though. Also, he has Chiari Malformation and sensitivity to light is one of the symptoms. I have never seen the droopy eyelids, though.

 

Best of luck,

Stephanie

[fiveam]

My 2 year old is at times sensitive to bright light (since he came out of the womb). He puts his arm over his eyes when it happens. I have not made a connection to his pandas exacerbations, though. Also, he has Chiari Malformation and sensitivity to light is one of the symptoms. I have never seen the droopy eyelids, though.

 

Best of luck,

Stephanie

 

Thanks for your reply Stephanie. Michael has for as long as I can remember had sort of a "sleepy" look about him. He gets tired easily too and the sun has been bothering him more than usual. I think I read about dilated pupils, wide eyed look and sensitivity to sunlight on another PANDAS website.

[Suzan]

My dd7 had droopy eyelids and I used to read up on myasthenia gravis too. Her eyes are much better now though so I am thinking they were a symptom of her pandas or gluten intolerance.

 

Susan

[fiveam]

My dd7 had droopy eyelids and I used to read up on myasthenia gravis too. Her eyes are much better now though so I am thinking they were a symptom of her pandas or gluten intolerance.

 

Susan

 

 

Thanks Susan,

 

I'm hoping that PANDAS is our answer too so I can stop all this googling....I'm driving myself up the wall with anxiety

[pixiesdaddy]

Not sure about drooping eyes, but we saw the sensitivity to light.

 

From my understanding, pupils that won't stay constricted in the presence of light can be a clear indicator of adrenal failure, which is basically an overworked immune system. I know that PANDAS DD9 of ours had that.

 

It wasn't something we treated directly. Rather we saw it as a sign of the underlying immune challenge.

 

Pixiesdaddy

[kim]

Did anyone ever look at

 

Autonomic ganglia, acetylcholine receptor antibodies, and autoimmune ganglionopathy?

http://www.ncbi.nlm.nih.gov/pubmed/18951069

 

The articles to the right are worth reading too.

 

Susan, if there is any connection here, I think you're right on with different things being able to set off "anti bodies behaving badly."

 

I have not seen droopy eye lids, but these symptoms of children falling down, limb weakness etc, possibly gastrophresis (?) make me wonder. Rapid onset of severe autonomic failure, with orthostatic hypotension don't fit the bill, but gastrointestinal dysmotility, bladder dysfunction, sicca symptoms, impaired pupillary light reflex? Might be something there for some of our kids??

 

These antibodies recognize the alpha3 subunit of the ganglionic AChR, and thus do not bind non-specifically to other nicotinic AChR. Patients with high levels of ganglionic AChR antibodies typically present with rapid onset of severe autonomic failure, with orthostatic hypotension, gastrointestinal dysmotility, anhidrosis, bladder dysfunction and sicca symptoms. Impaired pupillary light reflex is often seen. Like myasthenia gravis, AAG is an antibody-mediated neurological disorder

 

fiveam,

 

I'm sure Dr. Latimer, being a neuro will be very sensitive to any visable symptoms. You could always ask her if she thinks there is any correlation

Edited April 23, 2010 by kim

[fiveam]

Did anyone ever look at

 

Autonomic ganglia, acetylcholine receptor antibodies, and autoimmune ganglionopathy?

http://www.ncbi.nlm.nih.gov/pubmed/18951069

 

The articles to the right are worth reading too.

 

Susan, if there is any connection here, I think you're right on with different things being able to set off "anti bodies behaving badly."

 

I have not seen droopy eye lids, but these symptoms of children falling down, limb weakness etc, possibly gastrophresis (?) make me wonder. Rapid onset of severe autonomic failure, with orthostatic hypotension don't fit the bill, but gastrointestinal dysmotility, bladder dysfunction, sicca symptoms, impaired pupillary light reflex? Might be something there for some of our kids??

 

These antibodies recognize the alpha3 subunit of the ganglionic AChR, and thus do not bind non-specifically to other nicotinic AChR. Patients with high levels of ganglionic AChR antibodies typically present with rapid onset of severe autonomic failure, with orthostatic hypotension, gastrointestinal dysmotility, anhidrosis, bladder dysfunction and sicca symptoms. Impaired pupillary light reflex is often seen. Like myasthenia gravis, AAG is an antibody-mediated neurological disorder

 

fiveam,

 

I'm sure Dr. Latimer, being a neuro will be very sensitive to any visable symptoms. You could always ask her if she thinks there is any correlation

 

Ok googling some more....my son had "orthostatic hypotension" a couple of days ago...he said the floor was moving up towards him. Sicca, I don't think so but he's got the the rest of the symptoms including anhydrosis. He always drops his shirt because he gets too hot....he never sweats even with a high fever. I don't think it's AAG because it's not a sudden onset but def. autoimmune something....

[fiveam]

Not sure about drooping eyes, but we saw the sensitivity to light.

 

From my understanding, pupils that won't stay constricted in the presence of light can be a clear indicator of adrenal failure, which is basically an overworked immune system. I know that PANDAS DD9 of ours had that.

 

It wasn't something we treated directly. Rather we saw it as a sign of the underlying immune challenge.

 

Pixiesdaddy

 

Probably a question w/an obvious answer but....I swear my son's CBC's in the past have shown him battling an infection....nothing major, just elevated slightly out of the normal range. Let's say he has some chronic infection that has never caused any major probs but the body is continuously in attack mode....could this cause adrenal failure? Is there a specific test for adrenal failure?

[MichaelTampa]

I'm trying to make a list of PANDAS symptoms that I see frequently in my son. One thing I have noticed is that his pupils seem to be dilated even in the presence of light. Some times they are widely dilated, other times not so much but still more so than w/my other 2 kids. I'm assuming that this makes one more sensitive to sunlight. My son gets extremely anxious when going out on a sunny day. It always hurts his eyes. I've read that this can be a symptom, or something to look for w/PANDAS. I've also noticed that his eyelids tend to be very droopy. About 75% of the day his eyes appear to be half closed...has anyone else ever noticed this w/their PANDAS kids? My son tends to have little energy, is pale and I would guess anemic. This is puzzling to me since he gets a multivit pill everyday that contains 111% RDA. I am always a little reluctant to supplement iron because I don't want to exacerbate constipation which he also has. Maybe it's the B vitamins?

 

We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results?

 

Sorry for rambling I am really grasping at straws these days!

 

 

fiveam,

 

Sorry to anyone on this board that may be sick of hearing about lyme, but must say, from my perspective, as I read about lyme, I hear about drooping eyelids as a lyme symptom, can't remember hearing of it as a PANDAS symptom. I know sensitivity to sunlight is also a lyme symptom, but imagine it is PANDAS too, as I think they both come with a variety of sensory sensitivities. Just hoping you have lyme on your radar as a possibility, unless you have done a good job to rule it out...

 

Michael

[lyme_mom]

I'm trying to make a list of PANDAS symptoms that I see frequently in my son. One thing I have noticed is that his pupils seem to be dilated even in the presence of light. Some times they are widely dilated, other times not so much but still more so than w/my other 2 kids. I'm assuming that this makes one more sensitive to sunlight. My son gets extremely anxious when going out on a sunny day. It always hurts his eyes. I've read that this can be a symptom, or something to look for w/PANDAS. I've also noticed that his eyelids tend to be very droopy. About 75% of the day his eyes appear to be half closed...has anyone else ever noticed this w/their PANDAS kids? My son tends to have little energy, is pale and I would guess anemic. This is puzzling to me since he gets a multivit pill everyday that contains 111% RDA. I am always a little reluctant to supplement iron because I don't want to exacerbate constipation which he also has. Maybe it's the B vitamins?

 

We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results?

 

Sorry for rambling I am really grasping at straws these days!

 

 

fiveam,

 

Sorry to anyone on this board that may be sick of hearing about lyme, but must say, from my perspective, as I read about lyme, I hear about drooping eyelids as a lyme symptom, can't remember hearing of it as a PANDAS symptom. I know sensitivity to sunlight is also a lyme symptom, but imagine it is PANDAS too, as I think they both come with a variety of sensory sensitivities. Just hoping you have lyme on your radar as a possibility, unless you have done a good job to rule it out...

 

Michael

I agree. The sensitivity to light comment caught my attention because it is a red flag for lyme disease, as is sensitivity to noise (by the way). Low energy is also a common lyme symptom. Lots of kids with PANDAS symptoms have lyme disease (I know at least a half dozen who do) so I would get a lyme literate doctor to rule it out because you really don't want to go too long without treating it if it is lyme disease (or another tick-borne illness). It is not hard to get lyme and the symptoms can be very subtle, especially in the early stages. It is such a widespread epidemic that I cannot emphasize enough how important it is to have a knowledgeable lyme expert (one trained by ilads.org) evaluate your child. There are certain red flags for lyme in the bloodwork too. I am not very familiar with them but my ilads lyme literate doctor's checklist of lyme symptoms includes this question "Do you have any abnormal labs (low white blood cell count, low platelets, high liver enzymes, elevated sed rate?" They must be indicators of lyme disease to be on the checklist. I am pasting a complete list of lyme symptoms below from ilads.org. website. Good luck!

 

ADVANCED TOPICS IN

LYME DISEASE

 

 

 

DIAGNOSTIC HINTS AND TREATMENT

GUIDELINES FOR LYME AND OTHER

TICK BORNE ILLNESSES

 

Sixteenth Edition

Copyright October, 2008

 

 

 

JOSEPH J. BURRASCANO JR., M.D.

 

 

 

Board Member,

International Lyme and Associated

Diseases Society

 

 

MANAGING LYME DISEASE, 16h edition, October, 2008

Page 9 of 37

SYMPTOM OR SIGN NONE MILD MODERATE SEVERE NA NEVER OCCASIONAL OFTEN CONSTANT

Persistent swollen glands

Sore throat

Fevers

Sore soles, esp. in the AM

Joint pain

Fingers, toes

Ankles, wrists

Knees, elbows

Hips, shoulders

Joint swelling

Fingers, toes

Ankles, wrists

Knees, elbows

Hips, shoulders

Unexplained back pain

Stiffness of the joints or back

Muscle pain or cramps

Obvious muscle weakness

Twitching of the face or other

muscles

Confusion, difficulty thinking

Difficulty with concentration,

reading, problem absorbing

new information

 

Word search, name block

Forgetfulness, poor short

term memory, poor attention

Disorientation: getting lost,

going to wrong places

Speech errors- wrong word,

misspeaking

Mood swings, irritability,

depression

Anxiety, panic attacks

Psychosis (hallucinations,

delusions, paranoia, bipolar)

Tremor

Seizures

Headache

Light sensitivity

Sound sensitivity

Vision: double, blurry, floaters

Ear pain

 

Hearing: buzzing, ringing,

decreased hearing

Increased motion sickness,

vertigo, spinning

Off balance, “tippy” feeling

Lightheadedness, wooziness,

unavoidable need to sit or lie

Tingling, numbness, burning

or stabbing sensations,

shooting pains, skin

hypersensitivity

 

Facial paralysis-Bell's Palsy

Dental pain

Neck creaks and cracks,

stiffness, neck pain

Fatigue, tired, poor stamina

Insomnia, fractionated sleep,

early awakening

Excessive night time sleep

Napping during the day

Unexplained weight gain

Unexplained weight loss

Unexplained hair loss

Pain in genital area

Unexplained menstrual

irregularity

Unexplained milk production;

breast pain

Irritable bladder or bladder

dysfunction

Erectile dysfunction

Loss of libido

Queasy stomach or nausea

Heartburn, stomach pain

Constipation

Diarrhea

Low abdominal pain, cramps

Heart murmur or valve

prolapse?

Heart palpitations or skips

“Heart block” on EKG

Chest wall pain or ribs sore

Head congestion

Breathlessness, “air hunger”,

unexplained chronic cough

Night sweats

Exaggerated symptoms or

worse hangover from alcohol

Symptom flares every 4 wks.

[T_Mom]

Fiveam--Our d had huge dilated pupils when in an exacerbation -- for essentially about a year! We asked doctor after doctor about it and got the "may be activation" , "fight or flight" reaction, explanations over and over again.

 

Many Pandas children appear to have this symptom.

[justinekno]

Just thought I would add our experience in regards to sensitivity to light. My son tested very low in his zinc levels and we are currently supplementing. We have been supplementing since November and he is still measuring low so we have recently raised the amount of zinc. We don't know the actual cause of low zinc but at least we know the the cause of the sun sensitivity. It has made a difference in his sensitivity although he still requires sunglasses while outside. Our neurologist told me to make sure he wears "polarized" sunglasses and not the cheap kid glasses because polarized blocks more light. I searched high and low for kid's polarized glasses that didn't cost an arm and a leg and ended up at LL Bean (nice because they will take them back if the break or get scratched!).

 

As an aside, I have always needed sunglasses which I read is common for people with blue eyes. My son's eyes are brown so that rationale didn't work with him though.

 

Fiveam--Our d had huge dilated pupils when in an exacerbation -- for essentially about a year! We asked doctor after doctor about it and got the "may be activation" , "fight or flight" reaction, explanations over and over again.

 

Many Pandas children appear to have this symptom.