Dobela Posted October 11, 2012 Share Posted October 11, 2012 About 2 weeks ago my dd had an appointment at the local children's hospital with a geneticist and some kind of specialized neurologist. These were referrals from about a year ago from the entry neurologist we have been seeing. DD currently receives 8 hrs weekly in PT, OT, Speech. She qualified for VT but was put on a waiting list in April. First, we were somehow scheduled in the autism clinic day of scheduling and the geneticist was quite confused about our being there when "obviously this child is not even close to the autism spectrum". I had nothing to do with the scheduling. But he kept observing dd, asking me lots of questions, read all the current reports, and says, "I think her primary issue is vision. Look at her reports, with the exception of stuttering everything can be a sign of vision issues or be seriously compounded by vision issues. I can start my other developmental evals but they will be useless information until we correct her vision. Even if you have to stop all the other therapies to do it, I would stop them to do vision therapy ASAP." Then it was, "I will have my office call you in a few months. If you have been doing Vision therapy, I will schedule a follow-up." The new neurologist came in. His focus was different, but he was equally concerned about her vision. He emphasized dd starting vt right away, but is also scheduling a sleep study and wants me to increase her fish oil, vitamin c, and add in vitamin E to her daily multivitamins. I called the VT right away. It took her assistant until yesterday to return my call even though I asked for Dr. R to be the one to return the call. The assistant called, and I explained the situation and what happened at the appointment. She then starts telling me how she and Dr. R already did the developmental eval in April and couldn't understand why I was looking somewhere else for one. :confused: I just told her that I knew we were on the waiting list and was wondering if we could be moved up on the list or not after dd's other appts. The assistant tells me that dd was put on the list because during her 'developmental evaluation' dd was unable to name all of her letters or numbers and was found 'too cognitively delayed' to benefit from the program. She would consider taking her more regularly if dd had progressed academically. But even then, they only had a few slots and finding time for her would be difficult. I then explained we homeschooled and were available before 3, or that I could change other therapy times to make time for VT. Eventually I was given a 30 minute time slot every other week. Besides the obvious issues above, I know that there are 3 and 4 year olds in the VT program already. And not all of them know all their letters and numbers. I am frustrated, and furious. But my dd also needs VT. They sent me home with a patch in April that we have been using, but also with a packet that was way too difficult for her to do, if I could even understand what we were supposed to be doing. They were no help when I called with questions about that. Now I am concerned that VT will be more of the same. Or that dd has been judged as incapable somehow and the effort will be minimal from the assistant (who is the one doing the therapy) and the doctor who has now taken a very hands off approach to the whole thing. Sigh, what would you do? Suck it up and drive 3 hours one way to the most respected one in the state? I don't even know how I would begin to pay for the gas involved and still educate my son. There are a couple listed about 1 1/2 hours away, but I have never heard of them. On the covd website their emails are hotmail accounts LOL and no webpages. Quote Link to comment Share on other sites More sharing options...
TraceyS/FL Posted October 11, 2012 Share Posted October 11, 2012 Our first ever neurology appointment started something like this... Dr F (doing his Fellowship, Harvard Med School): "Why are you here?" Me, taken aback: Um, because she "failed" her EEG? I don't know, you tell me! Him: Well, I read the geneticist's report, she said you don't need to see Neurology. Me: She wasn't aware she was having some type of seizures. Him: Well, she says you are doing everything, we can't do anything, so why are you here? Me: About the EEG.... Him: ::: more of the same ::: Dr S, the Division Chief walks in: So, I assume Dr F has explained to you about B's EEG results and what we need to treat? Me: No, actually he hasn't. :banghead: Dr S apologized the next time we saw him - he read the email I sent the geneticist about the visit. He had no idea. IF anyone happens to live in a state that starts with an I, and isn't Illinois - PM me for his name! LOL!! I can't remember where he ended up. Wait, maybe it was North Dakota? I just remember thinking - I hope he freezes to death. ANYWAY, 1, long time no talk. And 2 - i'd be totally confused as to what you should do, and possibly talk to the regular neurologist about it? I can sympathize with the fuel price concerns. I've driven 5000 miles since July 19 to medical appointments. My budget is shot, even with the car getting 35-40mpg on the highway. And the VT peeps are even grasping that she might not be able to learn because her vision is causing the issues?!?! ::hugs:: Quote Link to comment Share on other sites More sharing options...
Dobela Posted October 11, 2012 Author Share Posted October 11, 2012 Our first ever neurology appointment started something like this... Dr F (doing his Fellowship, Harvard Med School): "Why are you here?" Me, taken aback: Um, because she "failed" her EEG? I don't know, you tell me! Him: Well, I read the geneticist's report, she said you don't need to see Neurology. Me: She wasn't aware she was having some type of seizures. Him: Well, she says you are doing everything, we can't do anything, so why are you here? Me: About the EEG.... Him: ::: more of the same ::: Dr S, the Division Chief walks in: So, I assume Dr F has explained to you about B's EEG results and what we need to treat? Me: No, actually he hasn't. :banghead: Dr S apologized the next time we saw him - he read the email I sent the geneticist about the visit. He had no idea. IF anyone happens to live in a state that starts with an I, and isn't Illinois - PM me for his name! LOL!! I can't remember where he ended up. Wait, maybe it was North Dakota? I just remember thinking - I hope he freezes to death. ANYWAY, 1, long time no talk. And 2 - i'd be totally confused as to what you should do, and possibly talk to the regular neurologist about it? I can sympathize with the fuel price concerns. I've driven 5000 miles since July 19 to medical appointments. My budget is shot, even with the car getting 35-40mpg on the highway. And the VT peeps are even grasping that she might not be able to learn because her vision is causing the issues?!?! ::hugs:: Boy, I am glad I am not the only one! I don't know if the VT people are grasping anything at this point honestly, and that really concerns me. You would think that they *should* grasp it, but I don't think the assistant does. She even called me back later asking for my copy of any reports the geneticist and neuro gave me. When I explained there were no reports, then she says, "So, now I am confused. You don't have any reports. What makes you think again that your dd needs VT?" Quote Link to comment Share on other sites More sharing options...
PeterPan Posted October 11, 2012 Share Posted October 11, 2012 Dobela, my brain is fried from our science labs this morning, so I'm gonna be blunt. A good VT place can treat a totally non-verbal child. They don't need to be able to read. They can do VT on infants. The place you've got has idiots who don't know how to help her. Go somewhere else. Drive further and go to the better place. You already know I do that myself. I drive almost that far (2 1/2 hours) for ST, and we've been doing it a lot more frequently and for a lot longer than you'd have to do VT. Don't screw around with unqualified, disorganized idiots. Put your money in the great place and go a lot less often. They'll work with you by email between sessions to keep you going, I promise. You'll be REALLY glad you went to the better place. Now to eat my lunch. I'm clearly way too opinionated and irritable. :D PS. I'm fascinated that you had multiple regular doctors in various fields telling you to get the VT. Stuff that cotton in the ears of the VT naysayers. Quote Link to comment Share on other sites More sharing options...
Stacy in NJ Posted October 11, 2012 Share Posted October 11, 2012 does she have a medical diagnosis specific to her vision issues? Quote Link to comment Share on other sites More sharing options...
Dobela Posted October 11, 2012 Author Share Posted October 11, 2012 Dobela, my brain is fried from our science labs this morning, so I'm gonna be blunt. A good VT place can treat a totally non-verbal child. They don't need to be able to read. They can do VT on infants. The place you've got has idiots who don't know how to help her. Go somewhere else. Drive further and go to the better place. You already know I do that myself. I drive almost that far (2 1/2 hours) for ST, and we've been doing it a lot more frequently and for a lot longer than you'd have to do VT. Don't screw around with unqualified, disorganized idiots. Put your money in the great place and go a lot less often. They'll work with you by email between sessions to keep you going, I promise. You'll be REALLY glad you went to the better place. Now to eat my lunch. I'm clearly way too opinionated and irritable. :D PS. I'm fascinated that you had multiple regular doctors in various fields telling you to get the VT. Stuff that cotton in the ears of the VT naysayers. Thank you for verifying what I know but needed someone else to hear. How crazy it is that this place has gone from one I would wholeheartedly recommend to one that I can't wait to avoid! And, I like clearly opinionated and irritable. It eliminates all that nice polite nonsense that solves nothing yet drags on forever. :D Quote Link to comment Share on other sites More sharing options...
Dobela Posted October 11, 2012 Author Share Posted October 11, 2012 does she have a medical diagnosis specific to her vision issues? Yes. For one she was born at 26 weeks gestation, drug positive weighing less than 2 pounds. She was diagnosed with Retinopathy of Prematurity and is followed for that, has a diagnosis of Developmental Coordination Disorder (which the above geneticist and neurologist agreed with), and most likely has learning issues yet undetermined. Right now her pediatrician has her listed as developmental delay since we are no further. Quote Link to comment Share on other sites More sharing options...
LaughingCat Posted October 11, 2012 Share Posted October 11, 2012 OTH I can see how it might be worth it to make an appointment to discuss the "confusion" with both the Dr. and the asst. especially when you had a good opinion of them before. Mostly because I feel like there's been more "confusion" in discussion of DD's issues with Dr's/therapists/specialists than anything else ever in my life. To the point once where I felt like that person must have "heard" different words coming out of my mouth than what I actually said :confused: Don't know why that is though. Quote Link to comment Share on other sites More sharing options...
swellmomma Posted October 11, 2012 Share Posted October 11, 2012 I feel for you, I have been through this with oldest ds and now with ds9. The OT, SLP and VT will not work with him until his adhd is being treated. Shrink will not treat the adhd until the vision and learning issues are dealt with. Which means no proper Dx or treatment for him. Quote Link to comment Share on other sites More sharing options...
rafiki Posted October 11, 2012 Share Posted October 11, 2012 nt Quote Link to comment Share on other sites More sharing options...
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