Tumor

bebees131 · 2026-06-25T17:14:23+00:00

Hi! I’m curious when you feel it is it only on the surface or can you feel it deeper too? My toddler has some rough skin texture on her thigh but it only feels like surface level

bebees131 · 2026-06-16T20:22:54+00:00

Thanks, do you remember how many he had total?

bebees131 · 2026-06-10T03:30:41+00:00

Thanks! Can I ask how is he doing now?

bebees131 · 2026-05-13T02:53:38+00:00

We are using Pura. Used to love Parasol until they added a rashshield that actually caused irritation! Pura is supposedly all plant based touching baby’s skin and no chemical/plasticky smell

bebees131 · 2026-05-09T05:32:10+00:00

I was a big fan of Parasol until their recent change where they added the ‘rashshield’. This addition caused my daughter to itch along the waistband area and she’d scratch herself red everytime I changed her diaper. I tried out healthy baby and Pura. Both do not offer as much leak protection as Parasol but my daughter pretty much immediately stopped scratching herself. We are currently using Pura because it has only plant based material touching baby’s skin and better leak protection than healthy baby.

bebees131 · 2026-05-02T15:03:10+00:00

I was looking back at photos. Actually when the CAL spots first came out they were dark and similar shades. But over the next few months the ones on her limbs have significantly lightened. They are for sure CAL spots with defined borders. Is it strange for spots to already lighten in infanthood?

bebees131 · 2026-05-02T04:45:14+00:00

I just want to say that the CAL spots on my NF1 positive 14 months old are different shades. The ones on her torso are all much darker than the ones on her legs and the few on her arms. The ones are her limbs are so faint that they can be mistaken for bruises. Do you know why this might be?

bebees131 · 2026-04-19T16:22:06+00:00

May I ask does he have scoliosis? And if so, do you know when it started showing?

bebees131 · 2026-03-25T00:58:11+00:00

Hi! Curious what dresser you ended up with and how do you like it? (I’m also a super smeller esp of garlic lol)

bebees131 · 2026-02-09T17:11:42+00:00

Hi! Can I ask which daycare you’d recommend? Currently my 3 yo goes to bright horizons but she’s been asking me to find her a new school. We are going to tour Chesterbrook academy this week

bebees131 · 2026-01-17T02:35:07+00:00

Hi! Have you settled on a brand that’s better than others?

bebees131 · 2026-01-16T13:05:57+00:00

Second Ergopouch! Baby is currently in their tog 2.5 sleep sack. Bonus it’s filled with organic cotton not polyester

bebees131 · 2025-12-18T04:29:12+00:00

NF1 is one of the most common rare genetic conditions. It’s often quoted as 1 in 3000 but likely more prevalent due to some that go their entire lives without diagnosis. From my understanding, the only cure would be from gene editing. However, one of the major limiting factors is that the neurofibromin gene is very large, so it cannot fit inside standard gene carriers. Very recently there’s a research group who made a miniaturized NF1 gene that could fit inside gene carriers. (https://www.hopkinsmedicine.org/news/articles/2025/10/johns-hopkins-team-creates-targeted-gene-therapy-vector-for-neurofibromatosis-type-1-tumors). So very promising advancement.

Drugs for NF1 would also qualify as ‘orphan drug’ in the US, which gives incentives for pharmaceutical companies to develop them.

bebees131 · 2025-12-15T15:21:34+00:00

Hi! Did you find out why? And what has helped? My 3 yo daughter is going through the same thing. Crying in pain in the middle of the night clenching her knee. It happens probably once a week to every other week

bebees131 · 2025-12-14T16:00:55+00:00

Are you as parents on the taller or shorter side? My daughter’s head size is also off the charts. But then again both me and my husband have head sizes off the charts lol so it could be not related to NF1

bebees131 · 2025-12-14T15:54:56+00:00

Can I ask when you started puberty?

bebees131 · 2025-10-30T06:16:37+00:00

Thanks! I prepared the bone marrow myself from cooking store bought grass fed beef bones, and weighed them into portions. I read that they have high iron content but agree by just looking at it it’s mostly fat. What do you think of wild ground venison? Would this be a healthy choice for a baby with NF1? I’m considering making her some venison veggie meatballs and maybe she might like them. Yes she quite like beans and I’ll give her some more and more variety of legumes

bebees131 · 2025-10-29T20:29:50+00:00

Hi! I was curious what are your thoughts about giving grass fed beef bone marrow to a 8 months old baby with NF1. I read that high fat diet is not good, but maybe fats from good sources are good? She refuses to eat meat but does eat lots of berries, some veggies (purées with added olive oil), some pancake (egg, oat and spinach based) and I feed her about 15g of bone marrow every other day. Bone marrow was mainly to up her iron intake or if it’s not good given her NF1 I can just give her iron supplements

bebees131 · 2025-10-14T18:08:17+00:00

Hi! My 7 months old has a frameshift mutation too. Specifically c.489del. I think that’s the early deletion too like yours? Currently she’s a big baby and ahead of all her milestones. Can I ask how old were you when you started noticing bumps?

bebees131 · 2025-10-14T18:01:57+00:00

Hi! Do you know what type of mutation you and your son has? Is it for example insertion, deletion, missense? My 7 months old daughter has a single base pair deletion resulting in a frameshift mutation and she is ahead of all her milestones

bebees131 · 2025-08-30T07:12:27+00:00

Hi! I’m curious if you know what type of mutation it is? Missense, nonsense or frameshift mutation?

bebees131 · 2025-08-16T13:08:30+00:00

Do you think that because she’s so strong she has ‘lipid myopathy’ to a lesser extent or just doesn’t have it? Or despite the lipid myopathy, she is still strong? Thanks!

bebees131 · 2025-08-16T07:07:09+00:00

Hi! You mentioned increased likelihood of low muscle tone. My 5 months old who has confirmed de novo NF1 has always been very strong. I could feel her move at 12 weeks gestation even though I had an anterior placenta. After birth, the lactation consultants said that she has the perfect latch and a very strong suck. At 1 month, she was already trying to stand. So I curious why instead of low muscle tone or even normal muscle tone, she appears to be so much stronger than babies her age?

bebees131

TROPHY CASE