MSmom Posted June 7, 2010 Report Posted June 7, 2010 Just curious if anyone here has ever been diagnosed with uveitis (autoimmune inflammation in the eye.) I was diagnosed with it about a year ago, at about the same time my daughter became very ill with her post strep problems. I was referred to our big retina institute, treated with steroid eyedrops, and told that usually, no reason for the uveitis is found---it's just idiopathic. Recently I stumbled across several journal articles online, referring to "post streptococcal uveitis," which I find particularly interesting, given that the eye specialists I saw were apparently ignorant of it. I just think it's interesting that my daughter's PANDAS and RF like issues were happening at the same time as my initial uveitis problem, and I'm now in the midst of a uveitis flare at the same time my daughter is having a flare of PANDAS symtoms. Maybe it's a coincidence...
Phasmid Posted June 7, 2010 Report Posted June 7, 2010 (edited) From my conversations with Dr. Trifiletti, I learned that many of the PANDAS kids he has seen have eye problems. This includes eye pain, blurred vision, and inflammation. My mother had scarlet fever. She later developed severe, recurrent uveitis. Later, developed a tremor which persisted. My son, during the onset of his troubles with chronic pharyngitis/tonsillitis at age 3, was soonafter found to have a devastating disease of the retina, no known cause, called Coats' Disease. It left him blind in one eye. I have recently been researching the strep connection to eye disorder, especially of the retina. What I have learned is that not only Strep implicated, but also Mycoplasma pneumoniae- my son had both. Both bacterial infections are associated with retinal exudative retinopathy, where the capillaries of the retina swell, allowing plasma with cholesterols to leak out. These cholesterols damage the retina. DO NOT IGNORE EYE SYMPTOMS IN YOUR CHILDREN, HOWEVER MILD, AND DEMAND A DILATED EXAM OF THE RETINA BY BOARD CERTIFIED OPHTHALMOLOGIST, NOT AN OPTOMETRIST!!! Edited June 7, 2010 by phasmid@earthlink.net
parents4eyes Posted June 7, 2010 Report Posted June 7, 2010 (edited) x Edited July 17, 2010 by parents4eyes
sf_mom Posted June 7, 2010 Report Posted June 7, 2010 (edited) Our children were exposed to a child with RF and got sick. My younger son that was diagnosed with Kawasaki's has it and is clearing with antibiotic treatment. My older son, who had similar symptoms to my younger but never diagnosed with Kawasaki's.. recovered on his own, went untreated, now PANDAS, has floaters, blurred vision in left eye, uneven dilated pupils which is also resolving. Edited June 8, 2010 by SF Mom
Kay Posted June 8, 2010 Report Posted June 8, 2010 For anyone who has the uveitis, can you tell me if one of the symptoms is a swollen eyelid? I have read about it and looked at pictures and I seem to have some of the symptoms of it the bloodshot eye as well as feeling like there is something in it, I have floaters some that are rather large and also feel like there is a film once in awhile that covers the eye. My biggest symptom though. one that is persistant is the swollen eyelid. I sometimes have to rub my eye before opening it in the morning to get it to open but it is unlike another condition that is swollen or crusty around the eyelash are, I do not have that. I just had my titers done for strep and did not show anything but I am wondering if this could be contributing to my daughters illness. Thanks for any information. Kay Just curious if anyone here has ever been diagnosed with uveitis (autoimmune inflammation in the eye.) I was diagnosed with it about a year ago, at about the same time my daughter became very ill with her post strep problems. I was referred to our big retina institute, treated with steroid eyedrops, and told that usually, no reason for the uveitis is found---it's just idiopathic. Recently I stumbled across several journal articles online, referring to "post streptococcal uveitis," which I find particularly interesting, given that the eye specialists I saw were apparently ignorant of it. I just think it's interesting that my daughter's PANDAS and RF like issues were happening at the same time as my initial uveitis problem, and I'm now in the midst of a uveitis flare at the same time my daughter is having a flare of PANDAS symtoms. Maybe it's a coincidence... My daughter has both uveitis and PANDAS. My son also has uveitis but no PANDAS. My daughter has had uveitis for a few years now, but as far as we know, has only had pandas since February. I did some research on the strep connection with uveitis. Unfortunately, there is no way to tell if the strep triggered the idiopathic uveitis, and it would not change treatment. I.E. Antibiotics for strep will not treat the uveitis. The studies on this are decades old, but I’d have to agree as my daughter’s uveitis is not doing well with her on antibiotics. I hit a wall trying to find more information on this. In some instances, uveitis has a genetic link but not always. So, do don't fear that your child will get uveitis, but do keep an eye on it. It is very common for uveitis suffers (as with most autoimmune diseases) to flare when they are sick regardless of the bacteria or virus. We see that our pandas' children flare/ get worse when they are sick. The interesting thing in my children’s case is their uveitis actually gets better when they are sick. For my daughter, our pandas doctor thinks that when she got sick the t-cells decide to leave the eyes and attack the brain… only temporarily. Her immune system is chaotic. If you are interested in natural remedies for your uveitis, I invite you to join my yahoo board uveitis_patients_helping_patients. May
kimballot Posted June 8, 2010 Report Posted June 8, 2010 Kay - my daughter (non pandas) had swollen eyelids last year - it turned out to be Mono. Apparently, this is common in mono. She has had them a few times since, but not as bad. She seems to get them with allergies or when she is run down. When I was researching swollen eye lids I learned that Blepharitis is usually due to a local infection of the eye lid... but this was not the case for my daughter.
Kay Posted June 8, 2010 Report Posted June 8, 2010 I have had the swollen eyelid for quite a few years I had it checked out twice and they seemed to think it was allergy due to pollen or what have you. It never goes away and I did see that blepharitis but it is not that, that is the one with the swelling of the eyelid by the lashes and or crusty stuff, I don't have that. My daughter was quite small the first time I got it and I think it came and went for years but now it seems here to stay for the last 4 or so. Thanks for the info. Kay Kay - my daughter (non pandas) had swollen eyelids last year - it turned out to be Mono. Apparently, this is common in mono. She has had them a few times since, but not as bad. She seems to get them with allergies or when she is run down. When I was researching swollen eye lids I learned that Blepharitis is usually due to a local infection of the eye lid... but this was not the case for my daughter.
MSmom Posted June 8, 2010 Author Report Posted June 8, 2010 Kay, my main uveitis symptoms are discomfort, irritation, redness, and there is a discharge from my eyes, especially at night. It's watery during the day, but does leave a crusty residue in the morning when I wake up. I haven't had a swollen eyelid with it, but I don't know if that is a symptom of uveitis or not. Pam For anyone who has the uveitis, can you tell me if one of the symptoms is a swollen eyelid? I have read about it and looked at pictures and I seem to have some of the symptoms of it the bloodshot eye as well as feeling like there is something in it, I have floaters some that are rather large and also feel like there is a film once in awhile that covers the eye. My biggest symptom though. one that is persistant is the swollen eyelid. I sometimes have to rub my eye before opening it in the morning to get it to open but it is unlike another condition that is swollen or crusty around the eyelash are, I do not have that. I just had my titers done for strep and did not show anything but I am wondering if this could be contributing to my daughters illness. Thanks for any information. Kay
MSmom Posted June 8, 2010 Author Report Posted June 8, 2010 It's interesting to read the replies. My daughter has had decreased vision and blurred vision, and she has thought all along that it was related to the strep problems. She is 16 and is both a little nearsighted and farsighted now. Pam
Kay Posted June 8, 2010 Report Posted June 8, 2010 Thanks Pam, my daughter too had eyesight problems, hers seemed to decline quickly through the last few years and now that she had been on the antibiotic for awhile, they were able to decrease her prescription...so it is interesting. My eye however I think I should have checked again, I just kind of live wtih it but like right now I know it is swollen which is normal for me now but I can feel it on my eye. So I don't know if it swells from the outside or it is something under the lid that is causing it and if it is in any way related to this whole deal I would want to know. Kay It's interesting to read the replies. My daughter has had decreased vision and blurred vision, and she has thought all along that it was related to the strep problems. She is 16 and is both a little nearsighted and farsighted now. Pam
parents4eyes Posted June 9, 2010 Report Posted June 9, 2010 (edited) x Edited July 17, 2010 by parents4eyes
Kay Posted June 9, 2010 Report Posted June 9, 2010 Thanks May, I have had it checked twice it is not painful to me, sometimes like I said have to rub it in the morning to open but I don't even have discharge from it. floaters yes. I have had it checked twice (both said allergies and or one said not enough tears) before but when I saw this I thought well something else to look into with a pandas kid but thanks so much for all the info, it was very helpful. Thanks. Kay For anyone who has the uveitis, can you tell me if one of the symptoms is a swollen eyelid? I have read about it and looked at pictures and I seem to have some of the symptoms of it the bloodshot eye as well as feeling like there is something in it, I have floaters some that are rather large and also feel like there is a film once in awhile that covers the eye. My biggest symptom though. one that is persistant is the swollen eyelid. I sometimes have to rub my eye before opening it in the morning to get it to open but it is unlike another condition that is swollen or crusty around the eyelash are, I do not have that. I just had my titers done for strep and did not show anything but I am wondering if this could be contributing to my daughters illness.Thanks for any information. Kay Hi Kay, I have never heard of a swollen eyelid being a symptom of uveitis. I would get your eye checked out ASAP but not fear that it is uveitis. Yes, some of your symptoms are consistent with uveitis, but uveitis is very rare. I suspect an eye infection, cataracts, or allergies in your case. The definition of uveitis is white blood cells (inflammation) in the uvea. The only way to diagnose uveitis is to go to an ophthalmologist who has experience with it. It can be difficult to see the white blood cells darting around and can easily be missed in a routine exam especially if there are only a few cells. The doctor uses a machine called a slit lamp that allows her/ him to see white blood cells darting around in the eye. My children have painless uveitis. However, most adults have painful uveitis that is unbearable. Symptoms are pain in the eye, redness, blurry vision, floaters, and sensitivity to light. Uveitis can be caused by infection but is most common in persons with autoimmune disease. It is recommended that children with autoimmune disease (esp. JRA) be checked every three months. This is because children are less likely to have pain. We did not discover that my children had it until my daughter suffered vision loss. Unlike pandas, the white blood cells in uveitis are destructive and can cause permanent damage to the eye. I was glad to read that in pandas the white blood cells only interfere with the brain and do not permanently damage it. May
kim Posted June 11, 2010 Report Posted June 11, 2010 I thought this was a pretty interesting regarding the effect of Glucosamine sulfate in treatment of uveitis In Buster's thread titled Coolest paper on how T-cells cross BBB, New Nature paper http://www.latitudes.org/forums/index.php?...c=6063&st=0 He pointed out how ICAM 1 seemed to be involved in the T cells crossing the BBB QUOTE(kim @ Nov 26 2009, 09:56 AM) What's different about the vessels of the CNS that allows the T cells to start sticking? From the paper it seems like LFA-1 (lymphocyte function-associated antigen 1) was implicated in recruiting the T-cells to the site. LFA-1 is produced by Eicosanoids and by Leukocytes that are on the "brain" side of the BBB. The endothelial cells then seem to present "footholds" known as ICAM-1 (intercellular adhesion molecule-1) on the inner surface of the bloood vessel (see fig22b ), and then the T-cell seems to squeeze through similar to the leukocytes (see fig22c). My guess (no data/reference yet) is there is some chemical near the site of the macrophage on the brain side that has high concentration of the chemical near where the T-cell should push through. Paper on uveitis http://www.iovs.org/cgi/content/full/49/12/5441 Inhibitory Effects of Glucosamine on Endotoxin-Induced Uveitis in Lewis Rats PURPOSE. Glucosamine sulfate (GS) is a naturally occurring sugar that exerts immunosuppressive effects in vitro and in vivo. The authors investigated whether GS modulates the inflammatory reaction in endotoxin-induced uveitis (EIU) of rats and the mechanisms by which it exerts its effects. and RESULTS. Cell counting and analysis of protein concentration in aqueous humor revealed that GS suppressed EIU in rats treated with a high dose of GS (1000 mg/kg). Immunohistochemistry showed that treatment with GS reduced ICAM-1 expression and suppressed activation of NF-B in the iris-ciliary body. The main inflammatory cells in the iris-ciliary body during EIU were macrophages. In LPS-stimulated macrophage RAW cell culture, GS inhibited the production of NO and PG-E2, the expression of iNOS and COX-2, and the activation of NF-B. CONCLUSIONS. GS suppresses EIU in rats by blockading the NF-B–dependent signaling pathway and the subsequent production of ICAM-1 and proinflammatory mediators. This study has extended the authors’ previous observation that GS is a potentially important compound for reducing ICAM-1–mediated inflammatory effects in the eye.
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