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Post by steffipoo on Feb 12, 2009 22:33:07 GMT -5
Hi folks... Long time no write here.... I feel horrible for not catching up but sheesh life is crazy right now. Anyhow wanted to ask a few questions. Olivias eye dr. today gave me some referrals and paperwork to give her ped and sending her to another eye doc. She was very detailed and great for Olivia during her long long exam. But afterwards when we talked she stressed I take(fax and call) these papers to her ped and eye doc tomorrow . Here's what it says wondering if anyone here has encountered the same with their child. inflammation of the optic nerves OD>OS , vessel tortuosity, papilledema she seemed to want me to call tomorrow instead of monday so well I come here first. lol... the true experts... Thought maybe some of you have had similar diagnosis with their kids or whatever anything throw me a bone lol. Hope all is well in unoland. Jeffs been quite unhealthy recently so I have been away and tending to him at the moment so feel bad just coming on asking for help AGAIN.... But must jet now. Thanks in advance for any responses. (((HUGS))) Steff ;D ;D btw Olivia is so funny lately she loves to take lines from shows she watches and using on me or the general public. I asked her the other day Olivia are you LOVING IT? ? here's her.... "MOM... I'm not just loving it I'm EMBRACING IT!!!!" me HUH I let her know she can go on the computer as we leave the long line at the grocery store..... Olivia to mom... " AHHHHHHHH FREEDOM BLOWING THROUGH MY SCALP!!! " mom HUH ;D hee hee gotta love her she is a trip and a half.She's growing up to be such a sweet funny gal.
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Post by wrblack on Feb 12, 2009 23:10:49 GMT -5
Don't know that one but sounds scary. Needs to be checked out. Better you should see what the ophthalmologist says. This link might be helpful but could just be more scary www.nanosweb.org/patient_info/brochures/OpticNeuritis.aspLet us know what they find out. Nervous doctors make me nervous. Good luck, Bob
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Post by laurasnowbird on Feb 12, 2009 23:20:57 GMT -5
We always love to hear Olivia stories, and we miss you when you're busy, but NEVER apologize for coming here and asking for help!!! I don't know a LOT about papilledema, but have had some experience with it recently. My BF's daughter was diagnosed with pseudotumor cerebri, which increased her intracranial pressure, leading to papilledema. Pseudo means false, so her symptoms falsely mimicked a brain tumor. Hers was caused by a medication, a type of tetracycline. As I understood it, it can be caused by some benign conditions, but it's important to seek treatment quickly, because even though the underlying cause can be benign, it can cause damage to a person's vision. The sooner it is caught and treated, the better. My friend's daughter experienced some significant vision problems for about six weeks, and had double vision so severe that she had to wear a patch over one eye, and was unable to drive. She is not suffering any after effects or damage to her vision, but she had a whopper of a headache for about a week because of buildup of excess spinal fluid. I would not waste any time checking this out because some of the things that cause it are not so benign. Not trying to scare you, and I'm sure it's something that's no big deal, but I'd follow up quickly. Please let us know how it turns out. Hugs, Laura
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Post by steffipoo on Feb 12, 2009 23:51:26 GMT -5
thanks u 2 and she has been getting lots of headaches lately come to think of it.... will find out more tomorrow..... gonna take Jeff to the docs so will walk over the paperwork to her peds and the eye doc. God the child could not get worse vision. Well she could but..it's still the same farsightedwise. I hafta get those expensive lenses or she'd end up looking like me old Grandma Saga with those GIANT eyes behind the specs. Grandma what big eyes you have. Otherwise Olivia's eyes would resemble grandma sagas.. lol (((HUGS))) and thanks Steff
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Post by Googsmom aka Jennifer on Feb 13, 2009 10:24:53 GMT -5
{{{{{{OLIVIA}}}}}}}
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Post by carolyn on Feb 14, 2009 10:33:11 GMT -5
Eye Expert Here!!!! My oldest daughter had this exact same thing when she was around 11 -12 years old. Showed up during a routine eye exam, and she had lots of tests to determine exactly what is was. She required a spinal tap to relieve some of the pressure by draining some of the spinal fluid, and then was on a daily medication ( can't remember what it was) for about a year. It completely resolved, she no longer requires any other follow up. It was a pain, I am not going to lie. Lots of blood work to check med levels, lots of eye exams to track progress, ped. neurologist, optical neurologist... we took a full tour of specialist at the University of Michigan. It was never determined why it happened, she did not fit the usual criteria. Good luck, and the sooner you get your tx plan the better! Hugs to you all!
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Post by steffipoo on Feb 16, 2009 11:54:57 GMT -5
Hi Thanks for all the responses... Olivia gets her referrals for the ped neurologist and opth tomorrow. Fingers crossed they send her to UCLA in Westwood and not the one thats Faaaaaar away and crowded as all get out. I am gonna get on the horn myself and see if I can find one opth or neuro at the westwood location cause it's like night n day between the 2. Wish me luck (((HUGS))) Steff
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Post by CC on Feb 17, 2009 20:58:32 GMT -5
YIKES Steff, PLEASE update us as soon as you can. Prayers going out that all is well CC ~
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Post by steffipoo on Feb 18, 2009 10:56:43 GMT -5
waaaaaaaaaaaaaaa must go faaaar and wait hours after appt time.... Westwwod was out. Dang. Oh well...Hopefully this other opth will have an appt before next st. swithens day. UGGG Steff
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Post by Googsmom aka Jennifer on Feb 18, 2009 11:02:26 GMT -5
{{{{HUGS}}}}}
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Post by laurasnowbird on Feb 19, 2009 21:59:51 GMT -5
Hey Steff,
I've been waaay busy working out of town again, but checking here often to see what's going on with our own dear Olivia. Hope you have some news soon!
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Post by steffipoo on Feb 25, 2009 21:11:07 GMT -5
Hi!!!!! Guess what? Olivias ped at UCLA applied for CCS which is extra ins for kids with sp needs when their insurance won't cover the costs of the apt and she got it for a whole year at Opthamology at UCLA. YES we don't hafta drive and wait for hours upon hours upon hours. AND like it MUCH better there. Dawn I can't believe they actually accepted it she has been denied by ccs so many times but Dr. F must have some pull cause she got it only 3 days after he applied for her.So If you can get CCS for Opthamology try it and you can go to UCLA k? Ask Jelanis ped to request for it and see what happens. I am so excited can make her appt tomorrow after I fax in the authorization. They said they's get her in by next wed if I do the fax manana. YAY (((HUGS))) Steff
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Post by jelanismom on Feb 25, 2009 22:53:13 GMT -5
Wow Steff that's GREAT! We did see Dr. Joseph Demer at UCLA and used his CCS...but that was when he had retinopathy of prematurity..now it's resolved and CCS has stricter criteria now. I requested his Ped to submit for CCS to cover his eye exams but Jelani's condition doesn't fall within CCS criteria, so he was denied. Jelani has nystagmus, retinal degeneration, high myopia and is probably legally blind yet he gets good correction with glasses. I've heard that CCS does cover conditions such as cateracts and glaucoma, but not his condition. His ped has referred us to an Optho who then referred us to the Center for the Partially Sighted on Wilshire and I have to pay for it. But it's reasonable, only 45 bucks and they are well experienced in children with special needs they said. We go on 3-11. Jelani doesn't do well in the exams and may need to be sedated to have his retinas checked if he won't allow them to during this exam.
I'm really very happy for you guys...are you going to the Jules Stein or Dora Stein? Who is Dr. K? When is your appointment there? I can't wait to hear what the doc says...i pray it's better news than the last doc gave. Hugs xx
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Post by steffipoo on Mar 23, 2009 23:02:28 GMT -5
Hi everyone... Well Olivia finally went to her opthamology appt today. Sheesh we spent the whole day there. Her appt was at 9 30 am and by 12 00 we were going to another bldg for an ultrasound of her eye as we got to go in front of the waiting room full of people waiting to get theirs.Her doc was very adamant about her getting it today so off we went. The child who would rather get a blood test than drops in her eyes hasta have em done twice. First time the dilation the second time the numbing drops but she was a HUUGE trooper with the added incentive of her fav after any eye appt banana smoothie.Thankfully we only go every few years. We love Robeks smoothies here. Anyhoo... she was going to see the ped opth neurologist in a couple weeks but her doc called this afternoon and somehow someway got her 3 separate appt choices for thursday as he said this is nuthin to mess with and he got her an appt for this thursas opposed to the almost 3 weeks from today the office appt bookers got her. . Also they are going to schedule thursday for an mri of her brain so as to see why her optic nerves are so swollen. Thankfully she has her old records from 10 months till she was 8 years old at UCLA as well so he could check and see if she had this prior which she hadn't. Olivia was a great patient and the guy who did her eyeball U/S said laughing that she was actually her best patient of the day as I look out to see a waiting room full of adults. lol She was a great kid did I mention that??? Anyhow will know more Thursday just wanted to thank all you eye experts out there for your advice. Thanks and will write back Thursday. (((HUGS))) Steff
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Post by steffipoo on Mar 23, 2009 23:09:49 GMT -5
OMG Dawn we walked all over the place today from Doris to Jules back to Doris then back to Gayley where we park by the frats as the parking there is now 11 dollars a day so Liv got loads of walking in to her dismay.lol In the end she wanted me to give HER a piggy back ride. Yea right I tried and that girl just collapses once I get her on there I mean just melts then so do I as she is heavy. I got about hmmmm 10 steps then was DONE she was mad but OH WELL. Must get the gal to bed . (((HUGS))) Steff
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