Hi
Do any of you Schwannomatosis sufferers have children?
My husband has been diagnosed with this condition and we have 2 babies under the age of 2. Before we started out family my husband was diagnosed and we asked doctors if there was any possibility if we had children would they have the condition. We were told that they wouldn't. When our son was born we noticed small lumps on his head and a couple in his neck. our GP referred us to a hospital specialist who checked the lumps and told us they were just lymphnoids and reassured us again that our children could not get Schwannomatosis. Since then we have had a daughter and i have noticed the same lumps on her head. I'm becoming fearful that they may have NF1 or NF2 and find myself constantly checking my neices and nephews heads to see if they have the same litle lumps but i have never seen in on anyone elses babies but my own. I am going to take them both back to the doctor to get a 4th opinion.
Anyone have an opinion on this? Or have children?
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Any Children?
- By nelly004
- Posted November 2, 2009 at 5:18 am · 6 replies
- In Schwannomatosis
- Shared with the public
- Edited November 2, 2009 at 5:18 am
Explore topics in this discussion:
6 replies
- Oldest first
- Newest first
- By luvmyNFboys
- Posted November 2, 2009 at 8:33 am
- Report post
I dont know much about Schwannomatosis. But my husband and son have NF 1. You can get NF 2 ways, genetic (like in my family) or spontaneous. So unless it is different from Schwannomatosis your children can get NF. Good luck. If I can be of any help please let me know.
- By sweetiecat
- Posted November 2, 2009 at 3:28 pm
- Report post
Do your children have CALS? What about freckels under their arms and groin aea? I am sure a dermatologist can tell you right off if it is NF or not. They are not always very sensitive and may tell you it's the elephant man's disease... Don't believe it!
- By DonnaB78
- Posted November 2, 2009 at 4:58 pm
- Report post
Ya those freckles are also known as cafe au lait stains and its how iwas daignosed!!
- By nelly004
- Posted November 2, 2009 at 5:47 pm
- Report post
My son has a birthmark on his left elbow that came up when he was 6months old. But they don't have any freckling or any other markings on their skin. Could we maybe mistaking his his birth mark for a CAL spot?
- By sweetiecat
- Posted November 2, 2009 at 10:08 pm
- Report post
Maybe, but if he only has one then I wouldn't jump to a conclusion yet. That could very well just be a birth mark. Has his peditrica seen it yet? Not all CALS are spotted right away they can take up 2-3 years after birth to appear. Just watch him and see if he is delayed on any of his marks. Be sure to point it out to his doctor.
- By nelly004
- Posted November 3, 2009 at 4:17 am
- Report post
We took him to our general practice and were referred to the hospital specialist but this was only for the lumps in his head and we were advised that they were just lymph nodes and that it was not possible for him to have Schwannomatosis. But i have not had the GP look at his birth mark.
In New Zealand we have what's called Plunket where our babies are seen by registered nurses at specific ages. So the Plunket Nurses have seen his birth mark but i haven't asked if it could be a possible CAL spot. We are going to see the GP for my husband tomorrow to discuss pain management and perhaps some genetics counselling.
Add to the discussion