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lack of growth and NF1

Cara_B
0 Recommendations

My 13 month old was just diagnosed with NF1 although her pediatrician suspected it when she was 3 months old. Up until this point she was just labeled failure to thrive. I know that NF1 children are generally smaller, but does anyone know if there are significant growth issues related to the disease? My daughter is still only 14 pounds and before we continue to bang on the doors of geneticists and endocrinolgists for any additional diagnosis I want to have more information in hand.

Explore topics in this discussion:

Cancer Celiac disease Glioma Brain tumors Failure to thrive Hypotonia Watson syndrome Neurofibroma Pain

19 replies

karan

My 7 1/2 year old daughter is going in for diagnostic evaluation on Tuesday for NF- but according to her pediactirician, she meets the criteria. She was born in the 90% for babies, and quickly declined in her growth rate, falling to in the 5% category. She has been on growth hormone shots since she was 4, and this has leveled out her growth rate to normal, and she has climbed up to the 25% in height... still small, but not nearly as much as before. She was born with the spots- and now they have increased in number- and also shows freckling in the armpits. At the time, when we started the growth hormone, NF was only a passing thought- or at least they didn't want to tell me about it... I'm still hoping in coincidences...

Jennifer83

my daughter is 31/2 years old she has always been in a high percentile for her weight. I don't think being that little is caused by NF (not 100% sure on that so don't quote me on that). A friend of my has a little girl who is a week younger then mine she probably weighs about 25 lbs. the DR. just say she is small. Same can be true to you, you just might have a small little girl.

ACnurse2010

NF can cause children to tend to be on the smaller side. But it's really nothign to worry about. I mean, I'm 23, but I'm only 5'1" and don't weigh too much either. Everyone thinks b/c of my size that I'm acutally like 17-18...which gets old after a while. But for now, if her pediatrician isn't worried, I wouldn't be too worried. I'm sure she'll be just fine :)

Mindi11

My daughter was born 9 lbs 2 oz and had a very large head. At 7mos old she developed CAS, a large plexiform and lost all her muscle tone. It was downhill from there on her growth. She fell off the growth chart and stayed off it for her weight percentiles for over 3 years. All this despite the fact that she was breastfed and then on pediasure drinking at least 1000 calories a day of pediasure. She still to this day can't gain weight. She is 4 1/2 years and weighs 30lbs on a good day. I still can't believe she was 9lbs at birth.

Nobody seems to know for certain why she can't gain wt. Some link it to NF while others deny it. Perhaps one day someone will actually take time to do a chart review of NF patients and their growth patterns and publish it for us lay people to get our hands on so we can have an answer.
Mindi

coella

I was supposed to have the opposite problem. Doctors told my mother I was going to be extremely tall. I'm 5'll and female. Not extreme by any measure, just tall. They don't always get it right.

Cara_B

My daughter wasn't quite as big at birth, but like you, Mindi and Karan, she dropped dramatically in percentiles. She started out very healthy at birth in the 25th percentile and has only gone down. She is now about an inch below zero on the growth chart.
I am so tired of hearing "I don't know" from the doctors.

momct

Cara B.

I know you have been to endocrinologists. Have they tested for Celiac Disease? This is totally non-NF related. Celiac is the inability to process Gluten (Wheat products plus a whole lot more). My friends daughter also was diagnosed very young with failure to thrive and only after 1 year did they actually figure out it was Celiac. Her basic symptom was failure to thrive although she had some stomach issuesf ( I can't remember now but I am thinking loose bowel movements) However, the original blood test that is suppose to be accurate came back NEGATIVE. They did an endoscopy and only then did they find that the villi were down. The villi (in the intestine) must be up in order to accept nutrients. I hope this helps. (By the way my friends daughter was diagnosed at the age of 2 and is currently a very healthy, although very small 12 year old). She follows a very strict Gluten free diet. Hope this helps.

sonwithNF1

My 8 year old son was born premature at 34 weeks. He was 5lbs. 9oz. He was fine and could come home. When it was time to bring him home, he did drop to 5lbs. 2oz. And then his weight did come back up. Eleven weeks to 6 1/2 mos. he was in the 25-50%. Then at 9 1/2 mos he was in the 10-25% and at 12 mos. he was in the 5-10%. At 15 mos. he was in the 25% and at 24 mos. he was in the 50%. I can't honestly remember the Dr. saying anything about his weight being an issue with having NF. But I do remember when his percentiles started being higher, she was happy about it. His weight is fine now. His height was always good and his head was always in the 90%-100%. He has had cafe-au-laits since birth and now freckling under his arms and in his groin area. He has one neurofibroma on his back and optic glioma. He struggles in school big time. He has a learning and speech disability. I'm sure your little girl will be just fine. Blessings ~Tina
www.saferisbetter.com/mamaoftwo

marcamp

My 15 year old daughter has NF1 and is 4'11" and 85#. She has always been very small with a poor appetite, she had an endocrine work up when she was much younger and everything came out negative. Lately, she has had decreased appetite due to pain and medications which hasn't helped her weight any.

KimakaMe

I am only 5'3" Ive been small and Short all my life , but then I come from a long line of Short People . I donot think NF had anything to do with My Height. These Drs that Say Your child is only in the .-- percentile, is not this or that .....I donot give a lot a weight to Drs saying that So what if they child isnt the average, If God wanted us to all be the same he would have made us all the same . I made our Ped. Mad when I told her that.
She thought Our Girl had NF and didnt even know what NF was Our Girl didnt walk at the time the Dr wanted Her top but we always carried her and since it took 10 years of tring well we spoiled her when she wanted up We picked her up .
But then She was talking at 6 months and she has No NF . She is Also short ,
Dont put a lot of weight in Peds. charts and average percentile stuff ....Its not very accurate in My opionin.
Kim

AuntieRo

Cara_B - can you get to UCLA or other learning hospital?
Get to the best Dr. you can find.
Bless you!

Cara_B

We are looking at other research hospitals now, but not necessarily UCLA (we've already seen an endocrinologist there). Thanks, though.

Cara_B

Thanks, Kim. It wasn't that she was just small, but she was dropping in her percentiles. At birth she was in the 30th percentile, and at 2 months she had gain so little weight that she was in the "less than 0" area of the percentile chart. I wouldn't be so concerned for the lack of growth if she were developing well in other areas, but she is also significantly delayed in all areas. We saw a second opinion geneticist who agreed that my daughter may have a secondary condition (other than NF) causing the delays. So we keep searching.

KimakaMe

My Appoligies Please forgive Me if I sounded Rude
I will Keep You both in My Prayers
Kim

CindyLouWho

Growth issues, usually unrelated to growth hormone deficiency, are a common finding in NF....though only for a subset of patients. Some sources state that as many as 80% of NFers are shorter than average, falling below the 25th percentile, but those stats differ from article to article. Certainly not ALL people with NF have short stature but it is a fairly consistent finding. In fact some Geneticists use to use a special growth chart for NF children. This chart enabled them to not only be measured against their non NF peers but also against their NF peers. Whether height is correlated to anything depends again on what article you are reading. Some studies found that very short stature was more likely to be correlated with NF brain tumors, and large plexiforms. Not surprisingly, tall stature has also been correlated to brain tumors in NF. Some articles suggest that short stature in adults is more likely to be correlated with having inherited NF, particularly if they inherited it from a father. VERY rarely, certain specific NF mutations may be correlated to short stature...thinking specifically of microdeletions or those mutations linked to Watson's syndrome.

There are a few good articles on this issue. This one (see below) from 2005 is particularly well written I think. The only questionable thing is that this article suggests that the RAS pathway may account for short stature in NF. Recent findings this time last year suggested a different and intriguing direction for research. Just a caution, the last time I posted this someone thought I was saying that short stature meant an increase in cancer. That's not the focus of the findings.

http://www.gghjournal.com/volume21/3/featureArticle.cfm

http://mednews.wustl.edu/news/page/normal/12134.html

Cindy

Cara_B

Kim, don't worry about it... I definitely did not think you were being rude. I understand your point of view and generally agree that doctors do not have all the answers.

Cindy, thanks for the study links.

KimakaMe

Thank You ,
I do hope those links help if You need any more info or need hlp looking up somthing about NF let Me know I can help You find it, You can Ad me to Your friends if You wish Ill add You
Kim

Jill_Nic

My 3 1/2 year old daughter has NF 1. She was born small (5lbs 11oz) She now only weighs 28lbs. She still wears some 24 month clothes. lol. Im not sure if it had to due with the NF 1 or if she will just be a small person. Im not very big myself and neither is her father. I think it just depends on your NF. NF 1 I find is so differnt in everyone.

Kiann

Cara B.

My daughter is a new four year old. She was diagnosed with NF1 when she was 12 months old. She has signficant physical delays due to a plexiform neurofibroma on her right foot and leg as well as hypotonia. She has made huge progress but at 4 still cannot run, jump or climb stairs. I have been suspecting that my daughter has not been growing since her last check up at 3 (she was in the 8th percentile for height, but she is 25 - 30 percentile for weight). She is still wearing all of her clothes from last fall (2T). I just measured her to see and it looks like maybe she has only grown 1/2 inch over the past year.

Interestingly, my daughter's neurologist office called us this week. They told me that based on a height anaylysis using the height of my husband and I, our daughter fell significantly lower than where they would expect her to be in her height. This was based on her height at 3 years 3 months. She has been referred to an endocrinolgist to see if she has a growth hormone deficiency. You might have your doctors get in touch with the NF Clinic at St Louis Children's Hospital for more info on how they are using the height analysis information.

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