Seeking Experiences with NF1 (Neuro-fibro-matosis)

I don't have any experience with NF1, but my then 2 y/o son did have to go under general anesthesia once. He held up really really well. No problems with that. The only thing I'd like to warn you of in advance is that after general anesthesia, it took about a week for his bowels to right themselves. Poor baby was so constipated that he was crying trying to go poo. They warned us that constipation was a common problem with general, but I had no idea how bad it could be. We ended up having to use a baby enema to get him started again. I hope things work out well for you.

Also, I saw that someone suggested you contact Early Steps. Please do. They offer wonderful services that can help your little one very much in his first three years.

Although my daughter has never had an MRI, she has gone under sereval times. It was worse for me than it was for her. Also you should check to see if he is able to get Early Steps. The early kids get education/development help the better. Also it is alot easier to get help when they are younger.

Hi B.! Ironically I just had lunch with a friend who has a daugther with NF. I asked her if she could share anything with you about her experience. She responded with the information below.

I would love to get your website when you get time. You can email me at ____@____.com. I too am self-employed and have a little one who will turn two in October, who is the light of our life.

I wish you the best of luck in everything you do!
M.

HERE'S MY FRIEND'S RESPONSE:
"A good source for NF information is the National Childrens' Tumor Foundation at www.ctf.org. As a parent, I can understand the anxiety about the MRI. However, about the only thing we can do as parents of children with NF is find the fibromas early so we can get take care of any potential problems early. And an MRI is the only way to thoroughly do that.

My daughter was 6 when she had her MRI (she had just been diagnosed) and they were able to medicate her without anesthesia. It meant keeping her up most of the night (all but 3 hours) and giving her an IV and she slept most of the day, but it was not anesthesia. Perhaps something like this could be done.

The good news is that your son has a very good chance of living a full life with little to no complications due to his NF. My daughter is now 17 and has only had two fibromas that are not visible to anyone. It was very stressful in the beginning, but now I hardly think about it until it's time for her check up."

Hello B., my son also has been diagnosed with NF1. He is 17 months old and also so far only has cafe' au lait spots. We went to a genetisist at Nemours clinic and had him diagnosed and then went to Arnold Palmers to get his baseline MRI. It was scary to think about the anesthesia but it was necessary to get a baseline MRI to go from for the future. He was a trooper and the staff were great. We have an appointment in August for Nemours Clinic again just to do a 6 month follow up. They want him to see an opthamologist to make sure he doesn't have any tumors on his optic nerves in his eyes. I know how you are feeling.....very overwhelmed.....and scared....if it helps we can talk on a regular basis, talking about it seems to help me deal with it. As far as the MRI ...I know you are nervous for you little guy but it is over realtively fast and will put your mind at ease....it did mine, for the time being. I wish I had more to share with you...but like with you this is new to us also. I have a 10 yr also who does not have NF....neither do I or my Hubby. I do read alot about it online and it answers alot of questions. Look into the NF websites.
I hope I helped a little or at least made you feel like you are not alone.

I do not have experience with NF1, but my daughter had an MRI of her brain when she was 9 months old. My daughter had hers done at an imaging center, not at the hospital. So, they used an oral sedative (chloral hydrate) to knock her out. I thought this was going to be so great with no needles and such. Well, the oral sedative tastes terrible and they give them alot of it. She was gagging, crying, etc. when they were trying to get that down her. I think a general sedative or gas mask would be the better way to go. Anyway, she was out within minutes and didn't move a bit during the MRI. I'd recommend doing the procedure at the Children's Hospital.

I have taught 2 students with NF1. Because it can cause speech delays and learning disabilities I would keep a very close eye on his development. You can get him screened when he turns 3 and he can qualify for free early intervention therapies through the school district. I found out very late in the school year that my students had this disease and I wasn't able to give them all the support that I could have given them if I knew. I know not all kids with NF1 have these issues but the key to success is early intervention. Keep an eye on his developemental milestones and if he seems delayed at all be an adovocate for your child and get him help quickly. Good Luck! : )

Hi B.,
I don't have any experience with NF1, but my son did have an MRI of the brain at 13 months, so I wanted to share those details with you.

Honestly, it was much harder on me than it was on him. I have had a brain MRI, so I knew about the procedure, but at 33 have never been under anesthesia, so I was considerably worried about that part. Of course there is always a risk, but in general most babies don't have any problem with anesthesia. The hardest part was not letting him eat that morning. He was not the youngest, so was not the first appointment of the day and could not eat until his MRI was over, which was well after 1 p.m. He was terribly cranky when he woke from the anesthesia, and the doctor explained that can often be a side effect of the anesthesia, but with him, it was only becasue he had not eaten. Beforehand, they told me I could feed him as soon as he woke up, but then when we were in recovery, they would not let me feed him until after we left. As soon as we got to the car, I started stuffing Cherioes in his face and he was a happy camper.

The procedure itself went off without a hitch. They let me stay with him until they put the mask over his face with the gas. As I understand it, with most babies, that is all that is necessary, but becasue my son had some severe chest congestion at the time, they intubated him (put a breathing tube down his throat) to be on the safe side and gave him IV anesthesia as well. The procedure took about an hour, and I had to wait in the waiting room, which was hard. I did a good job of holding it together until my husband called to mke sure everything was going okay and asked "did you cry?" Then the waterworks began. It is hard to be seperated form your little one like that, but seriously, everything was fine, and by the time we were home that afternoon, he was back to his normal self, none the worse for wear.

Also, talk to your doctor and insurance comapny and see if you can find out how much is covered and approxiamtely what your out-of-pocket expense will be for the procedure. I did not do that becasue I was so worried about everything else, and I was SHOCKED at how much it cost us, even with insurance, becasue there are separate charges for the procedure (use of the equipment), the anesthesia and the doctor (we are on a one-year payment plan now). Not that there is anything you can do to change the cost, but at least that way you know what to expect.