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• I need help with my daughter
• Posted: 2008-02-03 14:42:41 By Rochelle M
• This is my first e-mail on this site.
  
  My daughter now 28 was diagnosed with RP at age 5 by Dr. John Heckinlively at the Jules Stien Eye Institute at UCLA Medical Center. Due to the fact that we could not find another relative on either side of the family with any systems related to RP, I took her to Loma Linda Universtiy and the Retina Institute of Orange in Calfornia for a 2nd and 3rd opinion. LLU took Dr. Heckinlivley's diagnosis and Dr. Ruper at the Insistute said she did not have RP and asked if I had tramua during my pregnancy (which I had at 6 months). He told us in his opion she had permanent damage spots to her Retina and they would not get any better or any worse. I chose to continue her annual check-ups with Dr. Heckinlively as he is known to be the best in his field. He told us that his best guess was that she would begin to loose periphial vision in late high school years and be blind some time in college. (she already had night blindess as a child) My daughter continued to see him through High School and he continued to state that there was not much change. We began to feel secure that maybe Dr. Ruper was correct in his diagnosis. Dr. Heckinlively has since moved on to the east coast. My daughter just recently began having "floaters" (in both eyes and one flash) and very blurry vision. She went to see our normal opthalmologist and he told her as they were floaters that her mind would eventually adjust and they would disappear. It has been 5 months and they are worse. We saw our Doctor again to which he said she had small blood dots and a white line through on retina. He sent us to a Rentina Specialist locally who agrees with the RP diagnosis, told her it was not worth surgery to correct the floaters and she would just have to live with it, but did not sit her down and tell her what to expect. He did do a retinal thikness test to which he said was normal. My daughter is in denial that she has RP. I have encouraged her to go see the replacemnet Dr. at Jules Stien as all her records with many ERG's , Goldman fields ect are there. Should I contact him prior to her appoinment to ask that he be straight and realistic in telling her what she can expect for her future. I am really worried as she is newly married and is planning to be pregnant soon and I don't believe she and her husband are aware of the facts I have read regarding being a mother with RP. I have a 29 year old daughter with no signs of RP at all. (same parents for both girls) When I read on your web site that the average age for blindness is 40 (not college age) I realized we are NOT out of the woods. What do recomend for me and my daughter.
  
  Thank you for your time and participation on this site. It is so helpful.

• Re: I need help with my daughter
• Posted: 2008-02-03 21:47:36 By Darran Z
• Rochelle,
  
  I'm not a fan of Heckenlively and you'll see many posters who do not care for him as well. He has too much pride and won't accept the fact that he could or is wrong (cases have been shared on this).
  
  The ERG would be the one test that would determine RP or not. That as far as I am concerned is the single most factor in this situation. But I think the dr at LLU would be a little more accurate by investigating the fact that you had trauma during the pregnancy. But whether it gets worse or not, I don't know. Everyones eyes develop and react differently. Even among those with RP, not everyon "goes blind" the same rate or by the same age. That is the most **** thing about doctors telling you this, when often it is not correct.
  
  If your daughters visual field has not decreased over the years, then I think you could rule out RP and say it is the trauma during pregnancy. Floaters and flashes will come as there is no known cause for this, even in non-retinal degenerative diseases. She could have this for some other reason or no reason at all.
  
  They likely didn't want to do surgery to correct any of this was the fear of RP which often if the doctor is inexperienced with Rp they won't touch the eye as that has shown to be detrimental.
  
  But first thing first, is to get a hold of the records from UCLA and see what the ERG readings were. People with RP typically have 20mV or less when the normal range is 300mV to 550mV.
  
  But I wouldn't worry too much about your daughter in denial. Some people have to learn the "hard way" and when they do they learn quickly. I also wouldn't worry too much about the expected pregnancy as many people with RP are excellent parents.
  
  Darran

• Re: Re: I need help with my daughter
• Posted: 2008-02-04 21:31:13 By Rochelle M
• Darren,
  
  Thank you so much for your reply. A lot of what you said was comforting to hear. My daughter has an appointment at UCLA to see a new RP specialist and take a look at her current conditions and history and the end of the month.
  
  My concerns about her getting pregnant are not parental but genetic. I also read on the web site that it is possible that pregnancy can excellerate the symtems of RP.
  
  Do you have an RP specilist you would recommend?
  
  Rochelle

• Re: Re: Re: I need help with my daughter
• Posted: 2008-02-04 21:37:16 By Darran Z
• Rochelle,
  
  The issue of genetics and pregnancy affecting RP varies from individual to individual. At this point, there is no research on this. It is akin to those who receive anesthesia during surgery and report a decline in RP. From a genetic counselor who works with a well-respected, world-reknowned clinician and researcher, I was told that these are likely coincidental as they are rare. You will find many woman who have RP did not experience anything. According to a FAQ by Dr. Richard Lewis (Baylor Medical School in Houston) in a TARP (Texas Association of RP) website that there is no correlation between RP and pregnancy. It's quite contreversial among many RPers.
  
  The genetics part is it sounds like your daughter is an isolated cause of RP, if it is RP. That would mean an autosomal recessive form of RP. Unless her hubby is a carrier of the RP gene, none of the children will have RP. I currently have three children, in which none will ever exhibit Usher Syndrome (RP with deafness) because of the mode of transmission being autosomal recessive.
  
  Darran

• Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 14:08:21 By Marisa P
• Darran,
  
  Just because many women don't see any changes in the RP following pregnancy or surgery, I wouldn't say it's just "coincidental" for those who do see changes. In fact, I can think of a couple of instances where my doctor said that "women don't even know they are taking such and such" and the pressure on my eyes was such that I thought my eyeballs were going to pop out. Reading the rare, adverse side effects were thongs like embolism, blood clots...So, is it a coincidence or maybe that my eyes are more sensitive, damaged or whatever and therefore react differently? I know I am posing questions that probably ahve no answer. :)
  
  

• Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 14:12:42 By Darran Z
• Marisa,
  
  I thought you didn't have any biological kids of your own?

• Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 14:30:49 By Marisa P
• I didn't make any comment about my pregnancies as I would do that privately. I was speaking for those who I know personally who feel that their RP was truly affected by pregnancy and other surgery...The other issue is that perhaps doctors shouldn't simply think it's a coincidence.

• Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 14:59:38 By Darran Z
• The prevalence would be much higher if there was a correlation. In fact there are many women who have RP and don't experience changes. That tends to be a larger number of people, especially those who did not know they had RP until after their childbearing years.
  
  So it is likely to be coincidental given the lower numbers. Otherwise, it would be much greater. That's looking at it objectively. It's difficult to measure things subjectively. I've "seen" changes in my eyes when in fact, there was no change at all. Does that mean whatever I did, was an actual change? Could this not be more of a subjective nature than anything else? There is alot of subjectivity surrounding this very issue.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 15:23:32 By Marisa P
• The change was real. Again, the prevalence may be low because nobody is keeping track of it.

• Re: Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 15:28:27 By Darran Z
• I think they would. In fact, I am sure they would. Those doctors who are unfamiliar with RP (and there are a ton of them) wouldn't, but those who are actually clinicians and researchers, such as those affiliated with the FFB, would pick up on this. These are the type of folks I talk with, including genetic counselros. I refuse to talk to someone who isn't familair with RP. Since many of the people associated with RP do collaborate, including with the NEI, it would have been picked up. It's just the process of how information is often shared amongst these folks.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 17:45:56 By Marisa P
• Darran,
  
  I imagine you are referring to ophthalmologists because if we are to stay away from all doctors who don't know about RP, we are really in trouble.how often do you get medication from ophthalmologists for anything not related to the eyes? Do you get medication for allergies from the ophtalmologist? My point is that outside of those ophthalmologists/researchers familiar with RP, the medical community has no idea what any medication will do to our RP just like they often mistake how it will affect other organs.

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 17:57:57 By Darran Z
• Marisa,
  
  I have no idea what you are talking about. You might be surprised at knowing that they DO take these into considerations. I am excluding ophthalmologists who have very little experience with RP. But those who do, you might be surprised that they are interested in the overall health. They would note these changes in their patients.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 18:16:42 By Darran Z
• Let me ask this, how many ophthalmologists know how to diagnose RP? It is less than 5% of the total ophthalmologists out there. The fact that so many people go undetected until later in life and are devistated by this diagnoses is evident enough of this. That is what I am referring to.
  
  The point isn't to avoid those that don't know about RP. Even those that do know about RP will say that this or that may or may not affect the RP. You used medications as an example. As far as I know, there isn't any known medication to affect RP. There is, however, Drug-induced Occular side effects that everyone can get, regardless of having RP or not. How many drugs have you or anyone taken that did affect the RP? Some of them have the drug-induced occular side effect and those are well documented in a registery. But that doesn't count for RP progression because often, it is not permenent.

• Re: Re: Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 22:53:26 By Carol C
• Just to add more fuel for discussion: I saw a personal website done by a woman with advanced RP who reported experiencing dramatic improvement in vision by...smoking pot.A really potent form of it, though, which had the downside of making it irrelevant if she could see or not as she had no hope of actually functioning. This was an accidental discovery at a pary, and of course, it could have been an illusion as pot is a mind-altering drug. Anyone else heard of this? Any hope for medicinal pot allowed for RP, at least for research to find out if it works and why this might be? Carol C.

• Re: I need help with my daughter
• Posted: 2008-02-05 18:42:28 By Natalie C
• While it is true there is no research to support a connection between pregnancy and RP deterioration, a LACK of research does NOT mean there is no connection (ie there is also no research to PROVE there is NOT a connection). And in the absence of research or data collection, you cannot assume that the numbers are low OR high in terms of women with RP whose vision was affected by pregnancy. There is simply NO information to support or deny a correlation other than personal accounts. I, personally, experienced a significant change in vision after the birth of my second child. I admit that there are other factors that could be attributed to this: age, physical and dietary changes, stress, etc. But the fact remains that my vision did deteriorate after the birth of both my children, and very significantly after the birth of my second. In addition, I personally have yet to speak with an RP woman who has given birth who has NOT experienced some change in vision during pregnancy. This doesn't make it true or false, but I believe it is a little too much to be coincidence. I think the science world is a wonderful thing, but it is also filled with very knowledeable people who simply don't know everything about nature and the human body. Ten years ago my mother questioned her doctor about the new synthetic hormone discovery for women experiencing menopause. The doctor replied that all the research supported its safety and effectiveness. Now the medical community has a different opinion. the original science didn't change, but the research was furthered and updated and a different result materialized. I would love to see research done in this area as it would give women the chance to make a more informed decision about their bodies and lives. I knew going in to my pregnancies that I might lose some vision (because I heard it discussed at the Visions '98 Conference) and I decided I still wanted to have children. But some women, if fully informed, might make another choice. So in the absence of any scientific data, I would suggest women ask around--like they often do on this forum--and make the best decision for you and your family based on the information you do have.

• Re: Re: I need help with my daughter
• Posted: 2008-02-05 21:21:05 By Marisa P
• Darran,
  
  You can't convince me that the damage done by eye hemorrhage, glaucoma, retina embolism...would be temporary damage to the eye.
  
  I agree with you, Natalie. We can't take a doctor's word for it when it comes to the severity of side effects because they'll be telling us something different tomorrow.

• Re: Re: Re: I need help with my daughter
• Posted: 2008-02-05 23:01:56 By Darran Z
• Marisa,
  
  I'm not talking about those since RP does increase the risk of other eye conditions. That would be of a separate debate/discussion.
  
  Natalie,
  
  True, there is a lack of research but there are case by case studies as that is the only way to do it. Whether that is published or not, is up to the individual doctor. To to say it isn't a coincidence when others do not experience it, what would you call it then?
  
  Carol-
  
  The pot or canibis is an old debate. The real question is what exaclty was this woman seeing? You are high and thus on a different planet when smoking pot. Senses are highly elevated. But the truth with this is, it is subjective. I do beleive there is a paper out on this someplace. Perhaps PubMed has it?
  
  Darran

• Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-06 11:51:43 By Marisa P
• Darran,
  
  "Those" include many of the over the counter medications and prescribed meds. Women really have a disadvantage because many, if not all, medications prescribed during different phases of life, have side effects such as blood clots. They may be rare in some cases, but there is no way of knowing where the clot will be and that includes the eyes, lungs, brain, heart, extremities...We all know that we experience side effects in our weakest area which for many of us would be the eyes. So, I'll stay clear unless it's a matter of life and death.

• Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-06 13:22:13 By Reyne K
• For my two cents worth...How about all the mothers who claimed that the childhood vaccines caused their child to develop autism? At first, many years ago, researchers/clinicians all said "no way". More and more mothers kept insisting there was a correlation between this and the disease. Now they are doing drug/research tests on this very subject. Mothers have a gut instinct about their children and thier own health. Doctors, through no fault of thier own, do not know all the answers. I think Marisa has some valid points. Even if only 25% of women experience a change---that is a major coorelation. In the drug industry a side effect of 10% is enough to kill a drug. A side effect of becoming pregnant COULD make one's RP worse.
  
  ~Reyne

• Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-10 12:32:06 By Natalie C
• I don't call it coincidence. There are people who develop lung cancer who have neveer smoked and there are people who develop lung cancer and do smoke. The chances of developing lung cancer increase if you smoke. It isn't a 'coincidence' that both smokers and non-smokers develop lung cancer, it is just a fact that different genetic makeups can develop the same cancer in spite of their smoking habits. The fact that some women lose vision during pregnancy and some do not is not a coincidence. It is more likely a result of genetic makeup. But in order to make an informed decision about your body, it would be negligent to state there is absolutely no correlation between pregnancy and vision loss when there has been no significant or published research on the matter. That is why they inform patients of all the POSSIBLE side effects of surgeries and medications before they operate or prescribe--even when the chances of a negative outcome are in the small percentages and have only occurred in a fraction of the patients tested. So you can make an informaed decision. I relate my stories on this forum so that people can benefit from my experiences. I don't say that it is fact or that it will happen to them this way just because it happend to me. But I know that I was very glad to have heard that woman in 1998 talk about pregnancy and her vision. Then I was able to think it through as part of my decision about having children-without any illusions or regrets.

• Re: Re: Re: Re: Re: I need help with my daughter
• Posted: 2008-02-10 15:51:19 By Darran Z
• Natalie,
  
  Comparing lung cancer to pregnancy and RP progression is like copmaring oranges to apples. Let's compare the same thing here.
  
  If you can show me that women do lose their vision (non-RP) while pregnant, then I can accept your argument. Because you need to show that it is the pregnancy doing any changes to the eyes.
  
  The problem is, low incident is often called coincidental because the vast majority DO NOT exhibit this. The incident would be much higher even if it were RP given the small number of RP people in the US (estimated less than 200,000). The incident rate would be much higher and thus, wouldn't be a coincidence. But because it is much much lower, it is a coincidence.

• Re: I need help with my daughter
• Posted: 2008-02-17 18:08:41 By Carol C
• Could your daughter have Congenital Stationary Night Blindness? I understand this doesn't progress, but might leave you susceptible to other eye problems. Although I think it has dominant transmission, which would mean someone in your ancestors would probably have shown up with it. An interesting study... Carol C.

• Re: Re: I need help with my daughter
• Posted: 2008-02-29 09:29:19 By andrew b
• Ladies V Darran,
  
  You're all saying the same thing. What we need to do first is separate overall eye function from RP. RP is one component effecting overall eye performance. Even more so, it's one component effecting retinal function. There are factors effecting retinal function that have nothing to do with having RP at all.
  
  An easy way to follow what I'm saying is think of how much worse your vision is when you're tired. Increased serotonin levels, decreased dopamine, decreased glucose, decreased blood pressure, etc, all lead to temporarily worsened vision. You rest, your bio-levels return to normal, hence your vision returns to normal.
  
  For pregnancy, there are countless changes to the female body, some temporary, some permanent. I had a lady tell me she thinks her vision changes based on her period. (I'm a guy so I have no idea what that's like). My wife's body has never been the same since our first child (she doesn't get panic attacks any more for instance), so I see no reason why there couldn't be effects on overall eye performance.
  
  Final note, just because overall eye perormance may/may not change due to pregnancy, it doesn't mean your RP got worse. Your genes are your genes. Your body is producing the "gunk" in accordance with your RP genes and the influencer genes. Your genes don't change because you were pregnant.