[Ducky*Fuzz]

I was never told that about a pregnancy. We went for genetic counselling but then wondered why. It wasn't likely to stop us because we hadn't known any bad stories of NF. My sister and I grew up with very few problems until her recent diagnosis.

I have had pain in my back around my hips and they suggested an MRI for that as there can be tumours down there as well. Turns out I had bulging discs though which was a relief. Much easier to treat.

[Alrak]

yeah. the growths can be triggered by hormones, hence why its worse in puberty years.

[Puggle]

I'm bumping this thread. It's been quite a while since anyone posted in here but I thought maybe we could get it going again

Well, Lauren was finally 'officially' diagnosed with NF1 last year. It was a long time coming.

She's doing really well. Lots of CALS, and now freckling, and has developed a 'subtle' plexiform neuroma on her back. There's another tiny one on her chest, which she has had since a very young baby and that I pointed out to the Paed etc way back when and was told it was nothing ( ). She had her first MRI last year, and while it showed UBOs there was no sign of anything sinister, thank goodness.

Other than that, she's a happy, healthy, cheeky and gorgeous little 3.5 year old and is such a delight. We are involved with the NF1 research program at Westmead and are finding that really interesting. Lauren had her most recent research appointment a few months ago and has her next one when she is five (which sounds so far away but is only next year - gulp!). Lauren has an Ophthalmologist appt in May and must be due for her annual appt at Westmead soon.

How is everyone else tracking?

This post has been edited by Puggle: 12/04/2012, 10:47 PM

[usand3]

Hi Puggle

I'm so glad to hear that Lauren (although being officially diagnosed) sounds like she's doing well.

Oscar is now almost 6!!!! Where did that time go??? Oscar has more CAL's, freckling, 1 (possibly 2, off to the paed tomorrow) plexiform neurofibromas he also still has some developmental delays. Mainly speech. I've been told by his teacher and the OT that they get the feeling that he will (when he is old enough) probably be diagnosed with an auditory processing disorder. He's bright, but the actual act of learning is hard going for him. He has loads of friends older and younger than him but is only just starting to make friends his age at school, i think mainly due to his speech delay making communication tough. He just had his opthalmology appointment and all was great!

We're juggling with the time/money/level of importance with which therapy to do when.

We (as i said above) are off to a new paediatrician tomorrow, which i feel so happy about.

I would've loved for Oscar to be part of the research program at Westmead...what do you think of it?

This post has been edited by usand3: 25/04/2012, 11:14 PM

[Puggle]

Hi usand3, nice to 'see' you again. Wow to Oscar being almost 6, this thread is old! That's great that his ophthalmology appointment went well. How did the appointment with the new Paed go?

I think the research program at Westmead is very interesting. It started out assessing vocab, language, comprehension, problem solving and gross motor, but the last appointment the format was changed (due to her age) and they didn't assess her gross motor (which is actually where she has had some delay although seems to be catching up). The latest session I wasn't actually in the room so I am going on what I was told afterwards and in the follow up letter but I think it was pretty much an IQ test. I've heard that kids with NF1 are more likely to have some form of learning disability, but the assessor told me that lots of teens with NF1 actually fall into an IQ range of 80-90, so below average. I nearly fell over, that is the first time I have heard that statistic. The assessor also said there is very little research available on younger children with NF1 so I think this research program is a good thing. Lauren is testing slightly above average at this stage and I do think the results will become more accurate as she ages and her ability to comprehend what the assessor is asking of her improves IYKWIM. Like you say of Oscar, I think Lauren is bright.

Lauren is behind in language compared to where her sister (a precocious talker to say the least) was at the same age, but has caught up a lot in the last year or so - probably because her sister started school last year and that meant Lauren cold get a word in edgeways . I kept putting Lauren's delay down to being the youngest and us talking for her, rather than the NF1. She was also quite 'lazy' with sound/word formation but this has really picked up now and she will repeat a word after you to get it right - she used to simply refuse, cheeky thing! I usually think she is on track, but then sometimes when I hear her little friends of similar age talking I wonder if she is a little behind - you know how it is when you are always looking for those 'red flags'. Lauren has been going to Childcare two days a week since the start of last year and it has been brilliant for her, especially with gross motor. Her squint has improved, but is still there. It will be interesting to see if the Ophthalmologist has anything to say about it this time, we see him in two weeks.

I had a sad moment the other week. I was in the change rooms at the pool getting Lauren into her swimmers and a lady walking past did a double take at the giant CAL on Lauren's back. She didn't say anything, didn't stare but did a quick extra glance IYKWIM. It was the first time I had noticed anyone doing that and it made me a little sad and wonder how Lauren will deal with the inevitable comments and no doubt teasing in the future. She is very lucky so far that most of her CAL spots are hidden by clothing, and even when in swimmers the giant one isn't all that obvious. She has new ones and freckling developing all the time though. It breaks my heart to think of kids with NF1 being teased about CALs etc. Lauren seems to be developing quite a dry sense of humour, so hopefully that will stand her in good stead in the years to come.

To end with a rather funny but embarrassing anecdote. I'll start by saying this is something I have been dreading doing since NF1 was first floated as a possibility. I was talking away and said " blah blah blah ... Lauren has NFI" . I realised straight away and fortunately it was just to my DH and he laughed and said "You always said you would do that eventually!" Oh dear.

[usand3]

That's funny

The new paediatrician was BRILLIANT. Such a wonderful feeling to walk out of the appointment with the knowledge that someone's just listened, really listened!!! She was very thorough. Everything looks good at this stage.

With the IQ thing, i have the understanding (and i know a couple people with NF1 a child, a teen and an adult who have II from quite severe to only marginally noticeable) but that for the majority of people who have an IQ in the "normal" range there is a 40-60% chance of learning disabilities!!??

Research is key, that's for sure!!

A little girl at school in Oscar's class asked my eldest son (who's 8) why Oscar "can't speak properly" and DS told her it was "because he's smart but finds it hard to get the words from his brain to come out of his mouth because he has NF1". I was so proud of him, i hadn't told him to say that and when he came home he was worried he'd said the wrong thing...all i could say was that it was the PERFECT thing to say!!!!

[Mummyto2princess...]

Hi all,
I have just found this link and would like to join in the chat if possible.
I have NF1, my mother and brother both have NF1 and now my 2 daughters have it.
My mother had it extremely severe with many tumors having been removed as well scoliosis and recently had an arm amputation due to tumor that wrapped around her femur.
It will be nice to chat to others about it in their children, although I have had no issues with it DD1 has several CAL spots, lisch doubles on her eyes also shes getting yearly MRI to monitor an optic glioma and large head circumference.
DD2 has only just be given diagnosis, she to now is getting yearly MRI's, eye checks and follow ups at the hospital (westmead children's)
Well as I have also just recently discovered that may is NF awareness month would love to be able to chat with other mums going through the same.
Thanks

[usand3]

Hi mum2aPrincess and welcome. It's great to hear that you've not had too many ill effects yourself from NF1, although unfortunate that your little girls are needing monitoring. My DS2 has only ever had one MRI, i meant to ask the paed whether he needed more and if so, at what stage.
It's great that you can attend the clinic at westmead, by the sounds they are the experts in Australia!! It still amazes me when i hear of stories like yours that, even in one family, the severity in NF1 vary so drastically.
I just put something on my FB page about NF for awareness month
My DS2, who has NF1, is starting school soccer this Saturday. He is SO excited, he is a little unco with his gross motor skills, but loves soccer (like his big brother) so am happy that he'll have loads of fun

[Mummyto2princess...]

Hi usand3,
The variety of how NF1 affects people is so large and honestly I didn't take much attention of it as we never had many issues. Until recently when my mum went through what she did. The funny thing is she didn't know she had it until she was in her 40's - she just happened to be at a hosp where a little girl had it and noticed all the cafe au last spots and the fibromas, so from there she got her diagnosis (being spontaneous) and the 2/4 of her children have it (me being 1)
Sometimes I feel awful and selfish for having my girls and knowing that NF1 can be so unpredictable so having no idea what the future holds for them. I just pray and hope for the best that it is very mild .
That is so great that your DS2 can get out and play Soccer - How did it go today bet he had a great time and it was super cute to watch. :-)

[usand3]

Oh mum2aPrincess i hope that my last post didn't come across offensively...i didn't at all mean it to! To me, it doesn't matter whether you know there's a higher risk of a child having NF or not, i suppose i just never knew anything about genetics until i found out DS2 had NF and now i've learnt a little about it, it amazes me, that is truly all i meant in my post. I have a DD who has health issues as well and who has had many, many genetic tests but still has no diagnosis and the unknown is awful I can guarantee you i feel guilty and worried at times about what i've done wrong to cause 2 of my children to have "issues", it certainly makes it very clear to me that anyone can be afflicted with anything!!
Hmmm...i don't know if that made any sense at all and i hope i haven't made things worse, but i love talking to other mums, like you girls, that are treading the same unknown path as me. It certainly helps to feel less isolated x

ETA - Soccer was great thanks, DS2 was SO excited...all the little boys had no idea what to do but eventually started running around after the ball. DS2 had a huge grin from ear to ear the whole time, even though by the time he got to where the ball was it was already down the other end most times

This post has been edited by usand3: 05/05/2012, 09:45 PM