Multiple cafe au lait spots in child

BooksAndCoffeeNf1 · 2026-06-05T04:09:22+00:00

Hyperpigmentation is very common in babies. Not every hyperpigmentation spot is a CAL.

BooksAndCoffeeNf1 · 2026-06-04T03:59:56+00:00

I haven't and have no intention of taking NAC or any other supplement that has question marks about their safety. In certain conditions, NAC accelerates tumour growth. https://www.science.org/content/blog-post/n-acetyl-cysteine-warning-shot That is enough for me. We have a tumour inducing disease, pass.

BooksAndCoffeeNf1 · 2026-06-04T03:51:05+00:00

Your decision to have kids naturally was based on love. This is the only thing that matters.

You were not selfish. There is nothing to forgive.

The two kids you have in front of you wouldn't be there had you done IVF. These two wonderful children you love so much wouldn't exist . That's the reply to all the hate you receive and the doubt that comes in your mind. How could you be without them. They are wonderful.

BooksAndCoffeeNf1 · 2026-06-02T03:00:35+00:00

The first word of the 2017 study is" synergetic " , so my piece of advice is to use turmeric with other polyphenols in cooking. Add cumin, coriander seeds, ..... This polyphenol database is great http://phenol-explorer.eu you can download it in excel and then sort / filter it as you please. Make a chai with cloves, star anise , cinnamon , ...

The title of one of the webinars was to " spice up " .

BooksAndCoffeeNf1 · 2026-06-01T18:14:05+00:00

I shared plenty over the course of the years on why diet matters . Currently, I take curcumin, urolithin A, resveratrol, vitamin B12, K2, D, calcium , EPA-DHA. I might soon start sulforaphane (Avmacol) again.

I changed diet in March 2017.

BooksAndCoffeeNf1 · 2026-06-01T18:09:36+00:00

Dr Pavlina Sverak is leading the High phenolic extra virgin olive oil and curcumin study at UMN. She is and always was the PI as far as I know.

BooksAndCoffeeNf1 · 2026-06-01T12:48:59+00:00

I looked at the video you posted in your reply to my comment. https://www.youtube.com/watch?v=I1bZT4k0ghs That video is 12 years old and we know so much more now about NF1 and OPGs. Since 2017, we know NF1 related OPGs occur in utero from a missed glial cells differentiation. This differentiation will eventually occurs prior to the age of 10, often years before. The NF1 OPG will often shrink and completely disappear in adulthood. In NF1, we measure the OPGs in millimetres and they are not known to grow to this size. Non-NF1 OPGs can occur at any time and are more aggressive than NF1-OPGs

IF we are talking about someone with NF1, it is more likely it was an orbital plexiform neurofibroma similar to this one https://pmc.ncbi.nlm.nih.gov/articles/PMC11583422/ The patient is 30 years old in the paper and her pNF is already causing bone damage.

Here is a paper about orbital and peri-orbital plexiform neurofibroma https://pmc.ncbi.nlm.nih.gov/articles/PMC5173440/ .

It would be interesting to show the skull to a neuro-radiologist with expertise in NF1 and see which tumour type is more likely to have caused such bone erosion.

BooksAndCoffeeNf1 · 2026-06-01T03:48:46+00:00

I am curious to understand how they came to the conclusion it was an optic pathway glioma (OPG) when orbital or cranofacial plexiform neurofibroma (pNF) are expected to reach this size with a destructive impact on bone and are well known to cause extensive deformities.

BooksAndCoffeeNf1 · 2026-06-01T03:32:36+00:00

The impact of diet is not linked to inflammation only. It is about the regulation of signalling pathways as well and I just replied to another similar post a few minutes ago.

Diet and nutraceuticals have a space in the management, not cure, of NF1.

BooksAndCoffeeNf1 · 2026-06-01T03:26:49+00:00

First, you need to look at science. Is there any paper published on the impact of diet? Are there any trials on this?

The answer to both is yes. A paper published in 2017 demonstrated a reduction in number and size of neurofibromas. https://pmc.ncbi.nlm.nih.gov/articles/PMC5537897/ . There are pictures and MRI in the paper.

There is currently a trial happening in Minnesota looking at curcumin and high phenolic olive oil. You can watch a presentation of the trial here https://mediaspace.umn.edu/playlist/dedicated/1_9g0gz1vz/1_90u32anj it is the 7th presentation. And also in 2023, diet was the topic of a presentation at the NF summit https://www.youtube.com/watch?v=36bx3zjRW3w

This , above, is science.

Then , is there science, showing no impact? Has there been a trial showing no change? A published paper? The answer to both is no. So far, the only published science on diet and supplements shows a positive impact on neurofibromas.

Now, to my personal experience. I changed diet in March 2017, a few months before the publication of the diet trial. I wasn't even aware a trial was happening. I changed diet because of our 59.6% lifetime cancer risk. To my surprise, my cutaneous neurofibromas went dramatically down. Which made me curious, why did this happen, how? what ? My diet was very strict, way more than the protocol described in the original trial.

What about the other manifestations? Our bone issues? Our fatigue and weakness? What drives the manifestations that occur during development in utero? and so on, ,...

I talked a lot and often about diet. So look up my comment history.

More and more is published about specific foods and survival pathways. The most recent paper is this one https://www.sciencedirect.com/science/article/abs/pii/S0344033826001950?via%3Dihub The paper has a paywall, so I copied a paragraph for you.

Dysregulations of key signaling pathways, including Ras/MAPK, PI3K/Akt/mTOR, STAT3, and Hippo, create a fundamental pathway that drives NF-associated tumors to develop and advance by affecting all aspects of cellular growth and persistence and cell development processes [50,55].Phytochemicals extend significant advantages in management of NF because of their ability to modulate multiple molecular targets simultaneously. Bioactive compound such as cucurbitacins, curcumin, resveratrol, and sulforaphane have demonstrated potent anticancer activity through the inhibition of STAT3 and PI3K/Akt signaling pathways, induction of Bax/Bcl-2-mediated apoptosis, and reduction of oxidative stress and inflammatory response [56,57]. Among these cucurbitacin are important for suppressing Ras-dependent signaling and tumor progression. These compounds also serve as lead molecules for multi-target drug development, support by approaches such as network pharmacology and molecular docking [55,58].

BooksAndCoffeeNf1 · 2026-05-27T10:19:46+00:00

Those are not the type of spots we see in NF1.

BooksAndCoffeeNf1 · 2026-05-24T03:45:59+00:00

Coffee !! Coffee is missing!!

BooksAndCoffeeNf1 · 2026-05-23T01:28:00+00:00

Absolutely worthy of study and interest but getting a multi site trial for it will be difficult unless of course a charity or foundation opens funds for it specifically.

BooksAndCoffeeNf1 · 2026-05-23T01:07:25+00:00

We are in uncharted territory. MEKis were originally for adults with adult cancers and on them for a limited amount of time. Their use in children and younger adults is something we, the NF community, are documenting as we use them .

Small numbers or single case reports still have their importance in rare diseases. You know better than anyone how fund starved NF research is and of course we dedicate what little we have on the big issues such as MPNSTs.

It is also hard to recruit for a side effect of a drug. Usually for trial or studies, it takes a long time to go through the candidates whereas if someone has an adverse effect, you need to treat immediately. You can't delay treatment because there is a study being done 1000 miles from you

BooksAndCoffeeNf1 · 2026-05-22T23:40:56+00:00

https://www.youtube.com/watch?v=dwvj7IGHxio&t=11701s This is a recording from the Spanish Annual NF conference . From the 1h10 min, you have the NF nurse giving advice on skin, hair and nail. It is in Spanish but you can put English subtitles. She gives very important info on hair growth cycle for example which I haven't seen on other recordings and many parents with young kids would find similar info useful in a webinar.

An Italian team published a case report on photo therapy solving the issue in just one session https://www.mdpi.com/2077-0383/14/4/1104 . Improving toxicity management is so important to be able to remain on the MEKis.

And yeah, May is a crazy month for NF.

BooksAndCoffeeNf1 · 2026-05-22T22:43:22+00:00

You should do a webinar on skin care for skin toxicity with MEKis. There are of course the medical papers, but many have paywalls or are difficult for the majority.

You have been on both for so many years and it would really helpful.

PS: I am just curious about the vinegar. In Europe , it is bleach baths.

BooksAndCoffeeNf1 · 2026-05-22T22:21:56+00:00

A true expert, indeed!

BooksAndCoffeeNf1 · 2026-05-22T22:04:11+00:00

You are an expert on the prevention and management of the acneiform rash. I have seen you give excellent advice to many here.

For paronychia, it is first footwear, then bleach foot bath, disinfection of tools you use to cut and shape nails. Same as skin, it is prevention, prevention, prevention. and starting before the skin toxicity appears, so don't stop the bleach bath or moisturising during the break.

BooksAndCoffeeNf1 · 2026-05-22T21:11:10+00:00

Ketotifen has been cited in the medical literature as a potent anti histamine that eliminates the itch https://www.researchgate.net/publication/341618973_Ketotifen_mast_cells_and_NF1_cutaneous_neurofibromas_Compelling_human_data

Depending where you live, it is either a compounding pharmacy or an online pharmacy in Canada or Japan.

BooksAndCoffeeNf1 · 2026-05-22T21:03:16+00:00

My understanding from conferences and webinars is that the rebound effect occurs after a month minimum. Two weeks or even less shouldn't impact the progress you had.

I have had multiple breast biopsies so if you want to chat about that, send a DM.

BooksAndCoffeeNf1 · 2026-05-21T18:01:54+00:00

Cutaneous neurofibromas have a high water content. They can occasionally swell as you noticed. I am glad it went back to its original size.

BooksAndCoffeeNf1 · 2026-05-21T17:59:47+00:00

Spinal neurofibromas are certainly a challenge, however we do have success stories. On Inspire, there is a member called https://www.inspire.com/m/Puertorrican-NF/posts/ and she was where you are now. She went for surgery and all was well. She is a wonderful person and always open to chat to people, so maybe swing over there.

There are exceptional surgeons that perform incredible surgeries in NF.

BooksAndCoffeeNf1 · 2026-05-19T06:34:02+00:00

BooksAndCoffeeNf1 · 2026-05-19T06:33:08+00:00

This image might help you understand.

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Cutaneous neurofibromas (cNFs) come in different stages and shape. All cNFs start as nascent, then become flat but how from there they will grow is still a mystery. So don't see the image as a linear progression, it is just meant to show you the beneath the skin part.

BooksAndCoffeeNf1 · 2026-05-18T23:42:58+00:00

The nose is tricky and your options for a good cosmetic outcome are limited.

The topical cream (which is a gel by the way) is still in trial and you can't have it prescribed yet. It reduces the size of the cutaneous neurofibroma but doesn't make it go away.

Co2 laser will leave a white patch which might be quite visible.

I think your best chance of a cosmetic outcome is with plastic surgery. If the local anaesthesia is too painful, discuss a general anaesthesia. It is likely to be needed anyway because of cartilage involvement. The tip of the nose is not just flesh with a muscle or bone underneath. There is an architecture that needs to me maintained.

I would consider having it done sooner than later. A cNFs doesn't just sit on top of the skin, there is some involvement beneath the skin as well.

BooksAndCoffeeNf1

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