bierman Posted February 2, 2008 Share Posted February 2, 2008 A couple of weeks ago, my 11 year old daughter Samantha complained of sporadic blurry vision, mostly first thing in the morning. Then, on Wednesday the 23rd she went momentarily blind. Only lasted about 4-5 seconds, but was still cause for concern. The following Sunday, the 27th, it happened again. She was also having more blurry vision as well. We had checked her blood sugar, which was normal, as was her blood pressure. I took her to her optometrist on Monday the 28th. She had an eye exam in September and had better than 20/20 then. As the eye exam on Monday progressed, it became apparent that her vision had really deteriorated. The doctor dilated her eyes and checked her retinas. Samantha had large papilledema in both eyes. The optometrist told me to get her to an emergency room immediately. He did not even want me to stop to pay him. He called ahead to Children's Medical Center in Dallas to give them Samantha's information while I was enroute. When I got her there, they immediately brought her back and started evaluating her. Well, to make a VERY long story short, a CT, MRI/MRV, a Lumbar puncture and two days in the hospital ater, she was diagnosed with Pseudotumor Cerebri. It sounds really scary but really has nothing to do with tumors. The way I understand it is her body produces more cerebral spinal fluid than it gets rid of and this causes a lot of pressure to build up behind her eyes. The pressure causes part of the back of her eye to pinch the optic nerve, causing the blurred vision and sometimes temporary blindness. If left undiagnosed and untreated, it can lead to permanent eye damage, including blindness. Apparently this is a fairly rare disease, affecting about 12,000 people in the US. After her lumbar puncture (which took 4 tries by the way ) some of the pressure was relieved and her eyesight improved somewhat. She is now taking Diamox in hopes this will keep the pressure down and get her eyesight back to normal. There is some chance that she may sustain some permanent nerve damage to her optic nerve, but that remains to be seen. Many follow up appointments in the next several weeks with neurologists, opthamologists, nutritionists and our family doctor will help deterimine her long term prognosis. While I hate what my daughter had to go through this past week, I am very thankful that our optometrist, Dr. Marvin Brown, was astute enough to recognize what he was seeing and helped us get through the red tape at Children's ER much faster than normal. I am also thankful that we have one of the best children's hospitals in the country here in DFW in Childrens Medical Center. With only one or two exceptions, everyone we dealt with was great. My only complaint is the number of times they had to stick my daughter when doing the lumbar puncture. My wife told me it was good I was not in the room when they did it, as Samantha was in considerable pain. They were finally successful when they went to radiology and used a fluoroscope to line up the needle. I am not very happy about that. Fortunately, my daughter was a trooper through it all and is recovering fine. I am also thankful that, of all the things that could have caused her vision problems, this is the least scary. Some of the other things mentioned were a lot more ominous and quite frankly, scared the living crap out of me. I hope and pray that my daughter completely recovers her sight as this is affecting her favorite subject: art. She is quite a cartoonist and is not able to see well enough at this time to really be able to draw. I hope that her medication will start to giver some relief soon so she can again do what she loves. Link to comment Share on other sites More sharing options...
mdstihl Posted February 2, 2008 Share Posted February 2, 2008 Dang. Good luck with everything! Link to comment Share on other sites More sharing options...
GentlemanJim Posted February 2, 2008 Share Posted February 2, 2008 We will keep her in our prayers. Jim and Nanci Link to comment Share on other sites More sharing options...
3quartertime Posted February 2, 2008 Share Posted February 2, 2008 Best wishes... Link to comment Share on other sites More sharing options...
kimel Posted February 2, 2008 Share Posted February 2, 2008 People like to not think highly of optometrists but good ones know just how much they can tell about your overall health by looking at your eyes. My prayers are with your daughter and your family in hopes that a suitable solution can be found and that there is no permanent damage! Link to comment Share on other sites More sharing options...
SiG Lady Posted February 2, 2008 Share Posted February 2, 2008 "...and quite frankly, scared the living crap out of me." My thoughts exactly. Gah, what an episode. We wish her well... and wellness. Link to comment Share on other sites More sharing options...
Johann the Horrible Posted February 2, 2008 Share Posted February 2, 2008 Me and my family will pray for you and your daughter. Illness with one`s youngsters hit us in the softest place. You just have no defense there. Tell her we`re praying for her down here in South Africa and we are good at it since we are still around in-spite of all the bad things happening here. And least I forget, my youngest daughter, Amaryne, says I better tell you that she worries about your daughter and she is 11 year old as well. ( Apparently it is some girl thing that works between 11 year olds) and us dads are clueless about it. Link to comment Share on other sites More sharing options...
Greg Bell Posted February 2, 2008 Share Posted February 2, 2008 Best wishes for Samantha! Link to comment Share on other sites More sharing options...
RogerT Posted February 2, 2008 Share Posted February 2, 2008 (edited) I hope that your daughter gets well! I feel your pain and worries. I have a daughter (13 yrs) and I'm thankful she only complains about pain in her knees now and then after bouncing on the trampolin we have in the back yard. That easy to cure, just stay off it! Edited February 2, 2008 by RogerT Link to comment Share on other sites More sharing options...
bierman Posted February 2, 2008 Author Share Posted February 2, 2008 Thanks to all for your prayers and support. You have no idea how much it means to my family and I. Link to comment Share on other sites More sharing options...
6-shot Posted February 2, 2008 Share Posted February 2, 2008 Bierman, hope your daughter is doing better. Scott Link to comment Share on other sites More sharing options...
dajarrel Posted February 3, 2008 Share Posted February 3, 2008 bierman, I can't imagine what you are going through. Be strong for your daughter! Prayers and best wishes to Her. dj Link to comment Share on other sites More sharing options...
bierman Posted February 5, 2008 Author Share Posted February 5, 2008 (edited) Follow up appointment with the opthamalogist at Children's yesterday. Samantha's field of vision had deteriorated somewhat so they consulted with neurology who wanted another lumbar puncture. We were in the ER for 8 hours waiting for radiology to get set up with a flouroscope before we could get it done. When they did the LP last week for the first time she had an opening pressure of 40 mm/hg. Normal is supposed to be around 20. Yesterday, after a week on medication, her opening pressure was 37. We are doubling her medication and she is at the opthomologist as I type this (I am about to leave to go get an MRI on my back). We are hoping that her vision will improve with the higher dose of diamox. Trying to do everything we can to avoid surgery. I will post more later. Edited February 5, 2008 by bierman Link to comment Share on other sites More sharing options...
DEADEYE Posted February 5, 2008 Share Posted February 5, 2008 I personally have dealt with a tragic injury to my daughter 10 years ago and there is nothing remotley close to it. I will pray for you and your family and daughters well being Stay Strong, Pray Long and believe, he will get you through this... Link to comment Share on other sites More sharing options...
racerba Posted February 5, 2008 Share Posted February 5, 2008 Wishing your daughter well and hope that everything will turn out all right. Wishing well to you alsofor whatever you need the MRI for. Link to comment Share on other sites More sharing options...
bierman Posted February 6, 2008 Author Share Posted February 6, 2008 The saga continues. Samantha saw the opthamologists yesterday at Childrens for another follow-up. She had a lumbar puncture Monday and so they wanted to check her vision again. She came in at 20/80 and her visual field had not improved any despite the fact that her pressure had decreased. She will go back this morning for another full vision check up. If her vision has deteriorated yet again, they will probably want to do yet another lumbar puncture to check the pressure. If it is high again, odds are the neurologist is going to recommend a shunt. My wife has been doing a ton of internet research on this disease and it looks like Samantha is in a pretty advanced stage. Surgery is looking like a distinct possibility. Samantha is starting to get beat down by all of the doctors and students poking and prodding her and she is to the "just leave me alone stage". We have explained to her that we can't just leave her alone, but she is still weary and ready for this to be over. Link to comment Share on other sites More sharing options...
CreapyCrawler Posted February 6, 2008 Share Posted February 6, 2008 I pray for your daughters comfort, your strength, and the doctors knowledge and wisdom to treat her condition. Link to comment Share on other sites More sharing options...
bierman Posted February 8, 2008 Author Share Posted February 8, 2008 A positive day yesterday. We went for Samantha's 3rd LP yesterday. On her first two her opening pressure was 40 and 37, roughly double what they should be. Yesterday, her opening pressure was 17. She goes back today for another opthalmalogy workup, we are hoping that her vision will have improved with the reduced pressure. If things go well she shoudl be able to continue on with medication instead of surgery. Link to comment Share on other sites More sharing options...
kimel Posted February 8, 2008 Share Posted February 8, 2008 Hurray! Here's hoping things will level off here and give you all some smooth sailing! Prayers continue. Link to comment Share on other sites More sharing options...
Catfish Posted February 8, 2008 Share Posted February 8, 2008 A positive day yesterday. We went for Samantha's 3rd LP yesterday. On her first two her opening pressure was 40 and 37, roughly double what they should be. Yesterday, her opening pressure was 17. She goes back today for another opthalmalogy workup, we are hoping that her vision will have improved with the reduced pressure. If things go well she shoudl be able to continue on with medication instead of surgery. Great news! How's your back?? Link to comment Share on other sites More sharing options...
GentlemanJim Posted February 8, 2008 Share Posted February 8, 2008 This news will brighten my whole day Continuing Prayers and best wishes from the Lambert family Jim Link to comment Share on other sites More sharing options...
Johann the Horrible Posted February 8, 2008 Share Posted February 8, 2008 Add to that the prayers of the Buys family, from young to old, from big to tiny. Our prayers will be with you. Link to comment Share on other sites More sharing options...
ima45dv8 Posted February 8, 2008 Share Posted February 8, 2008 Keith, that's great news! (I needed some this morning ). Link to comment Share on other sites More sharing options...
JThompson Posted February 8, 2008 Share Posted February 8, 2008 Prayers sent your way bro.... Jim Link to comment Share on other sites More sharing options...
bierman Posted February 8, 2008 Author Share Posted February 8, 2008 (edited) Great news! How's your back?? Had an epidural steroid injection this morning. Hopefully in a few days I will see some improvement. Thanks to everyone for all of the prayers and well wishes. they have been working. Samantha went for another eye exam today and her color vision improved from 50% to 100% and the rest of her vision improved as well. They did not test her visual field as she is suffering from a low pressure head ache and was pretty miserable before and during the exam. Another follow up Monday, but things are looking very hopeful. Edited February 8, 2008 by bierman Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now