Comments on: An Undiscovered Path: A Child with Neurofibromatosis Type 1 (NF1) http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/ Growing Kids Through Diverse Learning Experiences ® for parents, educators and caregivers. Discuss self-esteem in children, literacy and creating healthy families Sat, 28 Jan 2012 18:34:28 -0700 hourly 1 http://wordpress.org/?v=3.0.4 By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2046 JoAnne Sun, 04 Sep 2011 22:51:31 +0000 http://burburandfriendsblog.com/?p=844#comment-2046 Hi Celia, While we are not doctors, a second option never hurts. Are you taking your daughter to someone that specializes in NF? Good luck! Hi Celia, While we are not doctors, a second option never hurts. Are you taking your daughter to someone that specializes in NF? Good luck!

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2045 JoAnne Sun, 04 Sep 2011 22:41:30 +0000 http://burburandfriendsblog.com/?p=844#comment-2045 Hi Matt from Australia! Thank you for sharing your NF story and encouragement, awareness if the key. Hi Matt from Australia! Thank you for sharing your NF story and encouragement, awareness if the key.

]]> By: celia http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2023 celia Thu, 23 Jun 2011 02:14:15 +0000 http://burburandfriendsblog.com/?p=844#comment-2023 Hi.; My six year old daughter has 4 cafe au latte spots on her abdomen and one neurofibroma on her left shoulder.& She calls it her third nipple! Every once in a while, usually in hot weather, it swells and itches. I rub cortisone cream on it and it goes away. Her pediatrician doesnt seem concerned. Should I be? Hi.; My six year old daughter has 4 cafe au latte spots on her abdomen and one neurofibroma on her left shoulder.& She calls it her third nipple! Every once in a while, usually in hot weather, it swells and itches. I rub cortisone cream on it and it goes away. Her pediatrician doesnt seem concerned. Should I be?

]]> By: matt http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2022 matt Mon, 20 Jun 2011 02:36:38 +0000 http://burburandfriendsblog.com/?p=844#comment-2022 Hi. came across your site. my son is now 3 & has NF1, he has some late spots but no tumors. As it turns out I have it too & was the carrier. (I was only confirmed as having it this year with my son) I am soon to turn 40, have around a dozen growth around my body mainly on my torso, but none on my face, the largest is about 1/4 of an inch (as long as the stay soft they are safe); I also have small spots but only a few. my eye site is perfect, have no learning disability (I have always been poor at math) if my son continues along like me I will be happy but it is still a worry. He is having his eyes tested yearly but they are ok, we will keep following his abilities & if we feel he is behind will get him tutoring, with early diagnosis of NF1 all will be fine. Try not to panic with the nasty pictures you find as our specilist insists they are in the extreme. best wishes Matt from Australia. Hi. came across your site. my son is now 3 & has NF1, he has some late spots but no tumors. As it turns out I have it too & was the carrier. (I was only confirmed as having it this year with my son) I am soon to turn 40, have around a dozen growth around my body mainly on my torso, but none on my face, the largest is about 1/4 of an inch (as long as the stay soft they are safe);

I also have small spots but only a few. my eye site is perfect, have no learning disability (I have always been poor at math) if my son continues along like me I will be happy but it is still a worry. He is having his eyes tested yearly but they are ok, we will keep following his abilities & if we feel he is behind will get him tutoring, with early diagnosis of NF1 all will be fine. Try not to panic with the nasty pictures you find as our specilist insists they are in the extreme. best wishes Matt from Australia.

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2004 JoAnne Mon, 04 Apr 2011 20:40:00 +0000 http://burburandfriendsblog.com/?p=844#comment-2004 <strong>Hi Mariah</strong>, Thank you so much for your encouraging comment to our blog post! I am so happy to hear you are doing well. So far, there have not been any learning difficulties with my 2 1/2 year old daughter, Jacqueline. She goes in for an appointment this month for a sedated MRI and CT scan to check to see how the tumor is growing on the back of her head. The doctors want to make sure the tumor is not thinning her skull bone. If it is, they will have to remove the tumor. Hopefully, it will all be OK! She is a happy little girl! Thank you again for your thoughtfulness! Stay in touch! Hi Mariah, Thank you so much for your encouraging comment to our blog post! I am so happy to hear you are doing well. So far, there have not been any learning difficulties with my 2 1/2 year old daughter, Jacqueline. She goes in for an appointment this month for a sedated MRI and CT scan to check to see how the tumor is growing on the back of her head. The doctors want to make sure the tumor is not thinning her skull bone. If it is, they will have to remove the tumor. Hopefully, it will all be OK! She is a happy little girl! Thank you again for your thoughtfulness! Stay in touch!

]]> By: Mariah http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-2003 Mariah Fri, 01 Apr 2011 23:29:50 +0000 http://burburandfriendsblog.com/?p=844#comment-2003 Hello. My name is Mariah Langton and I am 12 years old. I was 2 years of age when I was diognosed with NF1. My mom was pretty concerned but later we found out that I didn't get it very severely, which is good. I have the brown spots on my body and I did have one very small tumor removed from behind my ear, but nothing too serious. I know that you can have learning disabilities and eye sight problems but I don't have them. Well, I do have glasses but its not because of NF1. I wish you luck with your baby, JoAnne. Even though I dont have NF1 in a serious condition, I still feel for the children/people who have it like me, or more serious. Good luck (: Hello. My name is Mariah Langton and I am 12 years old. I was 2 years of age when I was diognosed with NF1. My mom was pretty concerned but later we found out that I didn’t get it very severely, which is good. I have the brown spots on my body and I did have one very small tumor removed from behind my ear, but nothing too serious. I know that you can have learning disabilities and eye sight problems but I don’t have them. Well, I do have glasses but its not because of NF1. I wish you luck with your baby, JoAnne. Even though I dont have NF1 in a serious condition, I still feel for the children/people who have it like me, or more serious. Good luck (:

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1969 JoAnne Mon, 31 Jan 2011 18:59:42 +0000 http://burburandfriendsblog.com/?p=844#comment-1969 <strong>Casie - </strong> I am sorry to hear about your husband's uncle that passed away due to complications of severe NF. The NF gene can run in families, or it can just happen, like it did in the case of our daughter. I would make sure your pediatrician is aware of NF in your husband's family. He or she will know best what to do in regards to your daughters. Casie – I am sorry to hear about your husband’s uncle that passed away due to complications of severe NF. The NF gene can run in families, or it can just happen, like it did in the case of our daughter. I would make sure your pediatrician is aware of NF in your husband’s family. He or she will know best what to do in regards to your daughters.

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1968 JoAnne Mon, 31 Jan 2011 18:43:02 +0000 http://burburandfriendsblog.com/?p=844#comment-1968 <strong>Mindy - </strong>How is Mariah doing? She sounds like a wonderful little girl. I am not sure where you live, but there will be a <a href="http://www.ctf.org/icalrepeat.detail/2011/07/29/712/nf-forum-2011-national-patient-and-family-medical-symposium.html" rel="nofollow">NF Forum 2011 put on by the Children’s Tumor Foundation: National Patient and Family Medical Symposium in Bloomington, Minnesota on July 29-31, 2011</a> This may be a good way to meet other families and learn more about the genetic disorder. Please keep up updated about Mariah. Mindy – How is Mariah doing? She sounds like a wonderful little girl. I am not sure where you live, but there will be a NF Forum 2011 put on by the Children’s Tumor Foundation: National Patient and Family Medical Symposium in Bloomington, Minnesota on July 29-31, 2011 This may be a good way to meet other families and learn more about the genetic disorder. Please keep up updated about Mariah.

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1967 JoAnne Mon, 31 Jan 2011 18:20:00 +0000 http://burburandfriendsblog.com/?p=844#comment-1967 <strong>April</strong>, Were you able to attend your first NF meeting in Oakland? There should have been good resources available at the NF1 clinic to get the help you need. <a href="http://www.ctf.org/" rel="nofollow">The Children's Tumor Foundation</a> is also a good place to find information regarding NF. We will be thinking of you and your family. Please keep us informed. April, Were you able to attend your first NF meeting in Oakland? There should have been good resources available at the NF1 clinic to get the help you need. The Children’s Tumor Foundation is also a good place to find information regarding NF. We will be thinking of you and your family. Please keep us informed.

]]> By: april rodriguez http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1943 april rodriguez Wed, 05 Jan 2011 05:48:03 +0000 http://burburandfriendsblog.com/?p=844#comment-1943 I am 39 yrs old and have been recently diagnosed with NF1, i was only diagnosed because with it now because both of my daughters were diagnosed recently by their pediatrician. their ages are 16 and 3yrs. We all have never been diagnosed by a Dr. b4 and I can't believe we have never had a Dr. diagnose us before. We all have over 15 cafe au' lait spots. My oldest daughter has a tumor growing on her brain and is restricting her eyesight. We know nothing about NF1 and have recently joined a NF1 clinic and our first meeting will be Jan. 28th in Oakland. We are hoping to gain more information and get our questions answered since we are new to this. Anyone who can help me, inform me.....please write back. I am 39 yrs old and have been recently diagnosed with NF1, i was only diagnosed because with it now because both of my daughters were diagnosed recently by their pediatrician. their ages are 16 and 3yrs. We all have never been diagnosed by a Dr. b4 and I can't believe we have never had a Dr. diagnose us before. We all have over 15 cafe au' lait spots. My oldest daughter has a tumor growing on her brain and is restricting her eyesight. We know nothing about NF1 and have recently joined a NF1 clinic and our first meeting will be Jan. 28th in Oakland. We are hoping to gain more information and get our questions answered since we are new to this. Anyone who can help me, inform me…..please write back.

]]> By: Casie http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1888 Casie Thu, 15 Jul 2010 23:51:34 +0000 http://burburandfriendsblog.com/?p=844#comment-1888 My husband had an uncle that passed away due to complications of severe NF. I was just wondering if the gene can be silently passed on or if because my husband does not have the disorder are my daughters ages 5, 3, and 11mo no more at risk than anyone else? I've noticed my youngest daughter has developed 2 possibly 3 cafe au lait spots (only one is over 1/2 cm. I just worry about this a lot because I am unfamiliar with NF. My husband had an uncle that passed away due to complications of severe NF. I was just wondering if the gene can be silently passed on or if because my husband does not have the disorder are my daughters ages 5, 3, and 11mo no more at risk than anyone else? I’ve noticed my youngest daughter has developed 2 possibly 3 cafe au lait spots (only one is over 1/2 cm. I just worry about this a lot because I am unfamiliar with NF.

]]> By: mindy http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1763 mindy Wed, 02 Sep 2009 05:29:04 +0000 http://burburandfriendsblog.com/?p=844#comment-1763 My 11 yr old daughter has NF1. She was diagnosed when she was about 3. She has many cafe-latte spots all over, lisch nodules in her eyes and a while ago we noticed a neurofibroma growing on the side of her head behind her ear. Her dr set her up with a dermatologist on the 15th of Sept. (this month) Mariah (thats her name) has very short stature, has learning difficulties in school. But will sit for hours on end and read read read. She is a very quiet, sweet girl :) she wants to be a veterinarian when she grows up. If anyone knows of special seminars for NF1 could you please let me know. Just this year I have started to explain to Mariah about her condition. I have signed up with the NF1 foundation so I can learn more about it and hopefully be an active part of the organization. Mindy My 11 yr old daughter has NF1. She was diagnosed when she was about 3. She has many cafe-latte spots all over, lisch nodules in her eyes and a while ago we noticed a neurofibroma growing on the side of her head behind her ear. Her dr set her up with a dermatologist on the 15th of Sept. (this month) Mariah (thats her name) has very short stature, has learning difficulties in school. But will sit for hours on end and read read read. She is a very quiet, sweet girl :) she wants to be a veterinarian when she grows up. If anyone knows of special seminars for NF1 could you please let me know. Just this year I have started to explain to Mariah about her condition. I have signed up with the NF1 foundation so I can learn more about it and hopefully be an active part of the organization.

Mindy

]]> By: JoAnne http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1759 JoAnne Tue, 01 Sep 2009 00:42:14 +0000 http://burburandfriendsblog.com/?p=844#comment-1759 <strong>Sarah,</strong> My heart goes out to you and your daughter. We recently visited the Mayo Clinic with our daughter; they suggested we bring her back for a MRI in July. We have decided to wait until she gets a little older because at that time she will only have just turned one year old. In late April, my husband and I attended a symposium on NF at the University of Minnesota. I was encouraged by what I learned and it helped to comfort me about all the unknowns of NF. There was a doctor from the Cincinnati Children’s Hospital that spoke of their determination to find a cure. She works with a team of people. We all need to contact our Congressmen and Senators so funding is not taken away given this is such a rare gene disorder. The doctor predicted a cure by 2020. I know that sounds like a long way off but this comforts me knowing they are doing lots of research on NF. <strong>Shonda</strong>. Sorry to hear of your loss. One of the things I learned on my first visit to Mayo Clinic was that NF can run in families. I am curious to find out if one of your parents has NF? Also are there mild to more severe forms of NF in your family? Every case of NF is so different. This is what makes it so scary. Were you going to the doctor often once you learn of having it? <strong>Jackie</strong> for your response. I agree that the unknown of NF1 and not knowing what is going to happen next is what makes it scary for me. My heart goes out to you and your family. Please keep us updated on your 4 year old. My daughter has a plexiform neurofibroma growing on the back of her head. We will probably have to have a MRI as she get older. <strong>Lace Marie,</strong> I understand how you are feeling. As I continue to learn more about NF 1, I have come to the conclusion it is more common then I first thought. By this I mean, I am finding more and more people that have family member with NF 1 or know someone with it. This has help to comfort me and my worries about NF 1. I know every case is different but I don’t have that panic feeling like I once did. I hope you will find it too especially once you learn more about NF 1. Please keep us updated on your son and know you are in our thoughts. <strong>Cindy,</strong> I completely agree with you. I also believe there is a treatment soon to come. Thank you for your comment and keep us updated on your daughter. Hi <strong>Jeffrey</strong>, Thank you for reaching out to us. We would like very much to meet you and to learn more about the CTF Minnesota chapter. NF is scary for us because of the unknown. We look forward to the support of the local chapter. Sarah, My heart goes out to you and your daughter. We recently visited the Mayo Clinic with our daughter; they suggested we bring her back for a MRI in July. We have decided to wait until she gets a little older because at that time she will only have just turned one year old.
In late April, my husband and I attended a symposium on NF at the University of Minnesota. I was encouraged by what I learned and it helped to comfort me about all the unknowns of NF. There was a doctor from the Cincinnati Children’s Hospital that spoke of their determination to find a cure. She works with a team of people. We all need to contact our Congressmen and Senators so funding is not taken away given this is such a rare gene disorder. The doctor predicted a cure by 2020. I know that sounds like a long way off but this comforts me knowing they are doing lots of research on NF.

Shonda. Sorry to hear of your loss. One of the things I learned on my first visit to Mayo Clinic was that NF can run in families. I am curious to find out if one of your parents has NF? Also are there mild to more severe forms of NF in your family? Every case of NF is so different. This is what makes it so scary. Were you going to the doctor often once you learn of having it?

Jackie for your response. I agree that the unknown of NF1 and not knowing what is going to happen next is what makes it scary for me. My heart goes out to you and your family. Please keep us updated on your 4 year old. My daughter has a plexiform neurofibroma growing on the back of her head. We will probably have to have a MRI as she get older.

Lace Marie, I understand how you are feeling. As I continue to learn more about NF 1, I have come to the conclusion it is more common then I first thought. By this I mean, I am finding more and more people that have family member with NF 1 or know someone with it. This has help to comfort me and my worries about NF 1. I know every case is different but I don’t have that panic feeling like I once did. I hope you will find it too especially once you learn more about NF 1. Please keep us updated on your son and know you are in our thoughts.

Cindy, I completely agree with you. I also believe there is a treatment soon to come. Thank you for your comment and keep us updated on your daughter.

Hi Jeffrey, Thank you for reaching out to us. We would like very much to meet you and to learn more about the CTF Minnesota chapter. NF is scary for us because of the unknown. We look forward to the support of the local chapter.

]]> By: Mechelle http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1757 Mechelle Mon, 31 Aug 2009 16:46:38 +0000 http://burburandfriendsblog.com/?p=844#comment-1757 Hello! My name is Mechelle, I am married with two children and I have NF1. Other than the spots and skin tumors I have never had any issues with my NF. Now that I am 32, more mature and comfortable in my skin (pardon the pun), I have started opening up about my condition. You see, I have been stared at off and on throughout my life. I have come to realize that it is due to ignorance. In my humble opinion, the best thing you can do for your daughter is educate people so that she growns up in an aware world. She is beautiful and as long as you look at her that way, and never treat her otherwise, she will be okay. We suspect that both of my children have it. We have not done the blood test because we realized that it will not change anything. It's just $1500 (per child) out of our pockets! Their doctor keeps a close eye on them, though. I understand that it is possible for a person who has NF1 to not pass it on, each pregnancy gives you a 50/50 chance of passing it on (or not). I also have been told (by a medical professional) that a person can present with symptoms, but never actually develop the condition. I want you to know that I have had, and continue to have, a wonderful life. After I read you blog entry, I started asking myself why and it is because of my parents and how they approached NF. I was diagnosed when very little was known about the condition. The news my parents got was not positive. They chose to basically ignore the possible negative outcomes. I was never allowed to use NF as an excuse. If you ever have any questions please feel free to ask me. I used to be very guarded about speaking out on NF, but lately feel perhaps my purpose in life is to help others who are touched by NF1. Have a fantastic day! Hello!

My name is Mechelle, I am married with two children and I have NF1. Other than the spots and skin tumors I have never had any issues with my NF. Now that I am 32, more mature and comfortable in my skin (pardon the pun), I have started opening up about my condition. You see, I have been stared at off and on throughout my life.

I have come to realize that it is due to ignorance. In my humble opinion, the best thing you can do for your daughter is educate people so that she growns up in an aware world. She is beautiful and as long as you look at her that way, and never treat her otherwise, she will be okay.

We suspect that both of my children have it. We have not done the blood test because we realized that it will not change anything. It’s just $1500 (per child) out of our pockets! Their doctor keeps a close eye on them, though.

I understand that it is possible for a person who has NF1 to not pass it on, each pregnancy gives you a 50/50 chance of passing it on (or not). I also have been told (by a medical professional) that a person can present with symptoms, but never actually develop the condition.

I want you to know that I have had, and continue to have, a wonderful life. After I read you blog entry, I started asking myself why and it is because of my parents and how they approached NF. I was diagnosed when very little was known about the condition. The news my parents got was not positive. They chose to basically ignore the possible negative outcomes. I was never allowed to use NF as an excuse.

If you ever have any questions please feel free to ask me. I used to be very guarded about speaking out on NF, but lately feel perhaps my purpose in life is to help others who are touched by NF1. Have a fantastic day!

]]> By: Cindy http://burburandfriendsblog.com/2009/05/15/an-undiscovered-path-a-child-with-neurofibromatosis-type-1/comment-page-1/#comment-1728 Cindy Thu, 06 Aug 2009 19:25:25 +0000 http://burburandfriendsblog.com/?p=844#comment-1728 Hey there. I was doing some research and happened upon your site. My daughter has been suspected of having NF, possibly segmental, for the past three years. She is 11 now and we've been lucky so far. Touch wood. Still, I do believe I'd give up everything I own for a crystal ball, preferrably one that shows only good things. A lot of the moms say that NF is a rollercoast ride and that is an analogy that I keep in mind quite a bit. There are days when its a not-so-bad, gentle ride. Then there are days when something unexpected pops up and I find myself white knuckling it all the way. Sometimes its just a matter of taking a deep breath and holding tight and hoping the next hill isn't too bad. I do truly believe that decent treatment are on the horizon! All the best, Cindy Hey there. I was doing some research and happened upon your site. My daughter has been suspected of having NF, possibly segmental, for the past three years. She is 11 now and we’ve been lucky so far. Touch wood. Still, I do believe I’d give up everything I own for a crystal ball, preferrably one that shows only good things. A lot of the moms say that NF is a rollercoast ride and that is an analogy that I keep in mind quite a bit. There are days when its a not-so-bad, gentle ride. Then there are days when something unexpected pops up and I find myself white knuckling it all the way. Sometimes its just a matter of taking a deep breath and holding tight and hoping the next hill isn’t too bad. I do truly believe that decent treatment are on the horizon!

All the best,

Cindy

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