Lost Again

Ok so Kyle had a neurologist appointment today. It was the first appointment after the official diagnosis of NF1. I went in expecting it to be somewhat informational. Yeah right. The doctor gave him a once over, told me that everything looks good and that we need to come back in 5 months. The whole appointment took 5 minutes if that. I tried to ask some questions but were answered very quickly and the answers were very vague. We walk out to make our appointment and I asked to speak with the LPN. She came to the desk and I asked her if there was any information I could have on NF1. I explained to her that I have been researching on the internet and that a lot of it was too clinical for me to understand. She looked at me and said "Yeah, thats cause there is not a whole lot out there about it yet. We don't have anything." Great. I get the same feeling every time I leave that office. Lost and confused. But then I look at my son, who is doing really well, and I get this sense of relief that everything is going to be alright. I don't know. I hate to think that there are others who are going through the same thing. Frustration and confusion, after leaving the doctors office. It shouldn't be like this. There should be a sense of hope and confidence leaving a doctors office, am I right???

By Irishlady79
Posted October 15, 2008 at 5:48 am
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sorry tohere that your doctor is not helping you out. Sad to say it's ture many doctors have little but no info on NF. Your best bet would be find NF clinc in your area. I see that your from Buffalo NY would ever come out to the Cleveland Clinc . They have a wonderful NF Clinc. I've been under the CC since I was 6 I'm forty something now. I belive with all heart and soal I'm still here becauce of the Clinc and of course the good lord

By 4Kate
Posted October 15, 2008 at 8:45 am
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I am also new to NF1 and have found the Children's Tumor Foundation website very helpful and on a level I can understand. Also on this website you can find out if there are support groups in your area. I am fortunate in that my Dr has been very helpful but I still feel I am missing information. Me and my husband are actually going to attend a Neurofibromatosis Symposium this weekend. It is sponsored by NFINC so I would suggest checking their website and seeing if one is coming to your town. Also I agree with Irishlady79, check and see if there is a local NF clinic in your area. All the Drs you need will be in one place.

By JaxonsMom
Posted October 15, 2008 at 9:31 am
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NF-related appointments often leave me with more questions than answers. I always have felt if I had left those early appointments with literature in hand that I would have handled this mess so much better. Both NF Inc. and CTF have brochures but those brochures only make it into the doctor's offices if the doctors request them - or if volunteers find the office and leave them personally. And, I always find myself wondering if the ones I have left end up in NF families' hands or if they are trapped in a file box somewhere. NF clinics are more likely to have NF literature but I have never walked out of a doctor's office with information in hand. Don't these doctors understand that we NEED something to cling to? Many know these groups are there but rarely tell their patients. That, I do not understand.

For me, the feelings of hope and accomplishment come from the support groups. Even a good doctor's appointment leaves fear for the future. By nature of NF, are doctors cannot give us concrete answers that last more than a few months. NF is too unpredictable. The depth of support and information we need as parents cannot be provided in those twenty minute visits. (A FIVE minute visit is totally unacceptable. Your experience sounds like our endocrine appointments!)

A doctor shouldn't leave you with questions unanswered though. Because of unproductive appointments I've had in the past, I now print out my questions. It makes sure I don't forget anything. And, it lets the doctor know that I expect answers. Our oncologist is great with that approach. And, the eye doctor has learned to deal with it. He roles his eyes when he sees the list, but he's learned that I will leave my list of questions with his staff if he doesn't answer them.

Since you feel peace when you look at your son, trust that feeling. Jump through all the medical hoops as a precaution, but the "best medicine" - the way that most problems will be caught - is by spending time with your child. Our NF kids are great. We are blessed and uplifted by their little spirits. That's what gives me hope. On Jaxon's worst day - a day that involved a non-NF ER visit - he looked at me and told me "okay." I knew he was right. It would be okay.

By deedle
Posted October 15, 2008 at 12:18 pm
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The same thing happened to my sister who is raising her grandaughter. There is no local support group and even less when it involves the child's school. The only thing we are ever told is come back next year for the 10 minute once over and eye check. What about education and support for the child who suffers from the effects of this disease. Not only the physical aspects but the social and emotional ones! I contacted
the NFINC website and through emails asked if I could start a support group here in our hometown (Rochester, NY)...guess what...I'm still here with no one turn to and no guidance. We are all LOST!

By Geneticcounseling
Posted February 18, 2009 at 11:03 pm
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Dear Aimee,
I'm so sorry you have to go through this. I wish your neurologist had taken more time to answer your questions. It's difficult enough being told that your child has NF1 and then to not know what that means for him, for you ....
I am a genetic counseling intern ( I graduate in 2 months), but I do see patients in clinic with NF1. Have you ever considered genetic counseling? I can help you find one in your area if you'd like. A pediatric genetics clinic will usually have a pediatrician who's trained in genetics as well as a genetic counselor. They will work together to make sure all your questions are answered and also make sure your baby gets the appropriate medical attention he needs. I would certainly recommend it.
If for any reason, you are not able to do that, I'll be happy to help in any way I can. I do counsel parents of children with NF1 and if you have any questions, let me know . If you could tell me a little bit more about how your son's diagnosis was made ( ie, what his symptoms are, which specialist made the diagnosis) I might be able to give you more accurate information.

By aimee121477
Posted February 19, 2009 at 9:04 am
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Wow, thank you so much for your response. Kyle's next appointment is in March and I plan to have all of my questions written down ahead of time so I do not forget anything and to be more persistant about getting the answers. Hopefully this will work in my favor.

By marcamp
Posted February 21, 2009 at 10:50 am
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If you find a doctor who specializes in NF you should have a very different experience. However, since the appointments are brief, that might mean there is nothing significant to review which is a good thing. But you are right, I have a running notebook where I put questions as they occur to me and ask them all at the next visit. If a year seems too long to wait, make one in-between. Again, though, find a specialist who sees MANY children with NF and if there are findings, yearly visits are probably enough.

Welcome to Inspire!

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