Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Georgina everything seems to be busy here lolol a moms job i think lolol melissa went for a pediatric check up today and we will see her in a month shes very concerned about melissa so this is melissas schedule for may may 3rd foot dr - may 4th eye dr - may 7th child psych to see that shes doing ok with this chronic situation and have this dr see if she can advise on anything then may 11th she will be admitted into the hospital for the 3rd spinal lumbar punture may 15th dentist appt may 22nd neurology appt june 1st back to her pediatrician during the off days is schooling at home lololol she dont get out of lessons much the headaches seemed to ease up after the 2 unsuccessful lumbar puntures so they are still on the thinking she does have Pseudo Tumor Celebri also the dr said that shes going to stick with retin A on melissas acne which is very mild but melissa has a fit over this problem she said that this new medication for acne called accu something would or could cause this Pseudo Tumor Celebri so right now this drug is off melissa lolol melissa is doing good on the death of my dad shes a trooper thanks for your concern :-) how are you and the family doing? have a great day Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi Robin, In reading your post, I have psuedo-tumor cerebri, aka benign intracranial hypertension. I have had it for 12 years, since my pregnancy with . has systemic jra. Its interesting , I am on another arthritis group and a woman there also has it. I take diamox, and atenolol for the ptc and have done quite well on it. During the pregnancy I took mega doses of prednisone, and had many lumbar punctures sometimes 2 in a week. After the pregnancy I remitted until this last year.My vision is barely affected this second occurance, but the first one I was almost completely blind. My vision did come back, it took about a year and a half after the delivery of . During the pregnancy my pressure was over 600 and now it runs about 300. I have been told by my neurologist not to take any extra vitamin A , as a supplement or topically. I had a severe case of cystic acne due to the major doses of prednisone that I took during the pregnancy. The medication that I used was called erygel, I believe it is topical ethromyacin (not sure of the spelling) It worked very well and even reduced alot of the scarring and pitting on my face from the acne. I would love to chat with you about it or read your posts. Suzie --- Robbin40@... wrote: > Georgina > everything seems to be busy here lolol a moms job i > think lolol > melissa went for a pediatric check up today and we > will see her in a month > shes very concerned about melissa so this is > melissas schedule for may > may 3rd foot dr - may 4th eye dr - may 7th child > psych to see that shes doing > ok with this chronic situation and have this dr see > if she can advise on > anything then may 11th she will be admitted into > the hospital for the 3rd > spinal lumbar punture may 15th dentist appt > may 22nd neurology appt june 1st back to her > pediatrician > during the off days is schooling at home lololol she > dont get out of lessons > much > the headaches seemed to ease up after the 2 > unsuccessful lumbar puntures > so they are still on the thinking she does have > Pseudo Tumor Celebri > also the dr said that shes going to stick with retin > A on melissas acne > which is very mild but melissa has a fit over this > problem > she said that this new medication for acne called > accu something would or > could cause this Pseudo Tumor Celebri so right now > this drug is off melissa > lolol > melissa is doing good on the death of my dad shes a > trooper > thanks for your concern :-) > how are you and the family doing? > have a great day > Robbin > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Sizie hi sorry this is late getting to you but i have been busy what did they say caused the Pseudo ? i know the acne med your talking about thats what melissa has been on they have changed to retin A but she dont have much of a acne problem to me but in her eyes she does she dont take the prednisone she used it before but since a past experience with my son i try to stay away from it unless its really needed my worrys right now is that since melissa went through 2 unsuccessful spinal puntures will they be better if shes totally asleep as the dr said her back already hurt before the puntures now she says it feels like bees stings i am up for anything right now as to what causes it and with this JRA is that related to it in some point more questions than answers tell me how you deal with it melissa is only 14 years old and on homebound schooling due to the headaches and JRA she has been put on elavil then pamelor for the headaches and tylenol 3 for the headaches and JRA i would love to talk with you about this Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Hi Robbin, Oh my gosh. You guys sure do have a busy schedule ahead of you! It sounds like your calendar is very full, Robbin. Covering all the bases though, so that's good. Hopefully they'll have a better handle on the JRA and other symptoms after all these tests. I hope that you'll save some time just for you, too, amidst all of those appts I'm glad that 's hanging in there. She's a very strong young woman. Take Care, Georgina Robbin40@... wrote: > > Georgina > everything seems to be busy here lolol a moms job i think lolol > melissa went for a pediatric check up today and we will see her in a month > shes very concerned about melissa so this is melissas schedule for may > may 3rd foot dr - may 4th eye dr - may 7th child psych to see that shes doing > ok with this chronic situation and have this dr see if she can advise on > anything then may 11th she will be admitted into the hospital for the 3rd > spinal lumbar punture may 15th dentist appt > may 22nd neurology appt june 1st back to her pediatrician > during the off days is schooling at home lololol she dont get out of lessons > much > the headaches seemed to ease up after the 2 unsuccessful lumbar puntures > so they are still on the thinking she does have Pseudo Tumor Celebri > also the dr said that shes going to stick with retin A on melissas acne > which is very mild but melissa has a fit over this problem > she said that this new medication for acne called accu something would or > could cause this Pseudo Tumor Celebri so right now this drug is off melissa > lolol > melissa is doing good on the death of my dad shes a trooper > thanks for your concern :-) > how are you and the family doing? > have a great day > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 Robin, My initial diagnosis of psuedo-tumor cerebri came when I was pregnant with Chrisitne. It was explained to me that instead of my body thinking it was pregnant it instead thought I had a brain tumor. There is no known cause, It happens to alot of different people. I know that there have been several like me, on the internet you usually read that its over-weight women during a certain age range. I was not overweight when I was diagnosed. And I also know of men who have this. So it just goes to say that there is no real connection between most of the sufferers of this disease. The lumbar punctures are very painful. The position you have to lay in is very uncomfortable. If they can put her to sleep for it, I would say go for it. I have been awake for all of mine, and was pregnant for most of them so it made it twice as fun. When I have them they usually drain alot of fluid out of my spine. This causes a large air bubble that causes a major migraine. My doctor does what he calls a patch, where he injects blood back int the space to fill the air bubble. Sometimes this helps with the headache sometimes it doesnt. It was rough pregnancy. I had migraines, vommitted constantly ,was in bed for most of it and couldn't see but every time I got down I wuld think of the life growing inside me and smile through it. The doctors had told me I would have to terminate the pregnancy but I refused, and am so glad I did. I can not have anymore children but I figure I have one perfect one, what more could you want? The doctors do not know what triggered the reocurrance. About 1 1/2 years ago it came back, not as severely as the first time but I was still miserable. I couldn't work last summer and spent most of it on pain pills. We went camping and everything, and I vommitted and slept most of the time. Currently the medication is controling it and I am doing quite well, no headaches or anything. I sympathize with your daughter, and the pain she must be going through. It is another disease where people look at you and think you are fine. But the pain can be unbearable at times. For me laying in a dark silent room helps, as does a dark warm bath. I was lucky and regained my sight back completely. They can sometimes diagnose ptc from looking at the discs behind your eyes. They swell, its called palpadema I am not sure of the spelling. I hope they get a diagnosis soon because then they can start treating her. Get her a good neurologist. There is also a group, just do a search for psuedo-tumor cerebri or ptc and you will find it. You can find alot more information and probably others your daughters age that you can also speak with. I would love to chat more anytime Suzie --- Robbin40@... wrote: > Sizie > hi > sorry this is late getting to you but i have been > busy > what did they say caused the Pseudo ? > i know the acne med your talking about thats what > melissa has been on > they have changed to retin A but she dont have much > of a acne problem to me > but in her eyes she does > she dont take the prednisone she used it before but > since a past experience > with my son i try to stay away from it unless its > really needed > my worrys right now is that since melissa went > through 2 unsuccessful spinal > puntures will they be better if shes totally asleep > as the dr said > her back already hurt before the puntures now she > says it feels like bees > stings > i am up for anything right now as to what causes it > and with this JRA is that related to it in some > point > more questions than answers > tell me how you deal with it > melissa is only 14 years old and on homebound > schooling due to the headaches > and JRA > she has been put on elavil then pamelor for the > headaches and tylenol 3 for > the headaches and JRA > i would love to talk with you about this > Robbin > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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