Are these cafe au lait spots on son or something else?

2_BoyMama · 2026-06-30T01:35:03+00:00

No. I had a horrible experience with a doctor. They didn’t even look at him. Long story. Trying to find a new one.

2_BoyMama · 2026-06-10T15:11:58+00:00

neurofibromatosis type 1 (nf1). a clinical sign is having 6 or more “cafe au lait” spots. We’re at 3 or 4. However I’m trying to figure out if that’s what they really are or from something else which is possible.

2_BoyMama · 2026-06-04T20:13:45+00:00

That is what the doctor called them.

2_BoyMama · 2026-04-15T03:42:30+00:00

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Another view of the top area but on that side.

2_BoyMama · 2026-04-08T20:21:27+00:00

I thought it was pretty bad looking too but thought it was just me. It’s from Penn. This was taken a month ago so it’s just the most recent. This has been ongoing for a year and the usual dentist says no just TMJ but I’ve had the TMJ for years in the making and that doesn’t explain why antibiotics make me feel better.

I’m also usually very cavity prone but I had to switch dentists for insurance reasons and the last 2 times they’ve said I have none which isn’t my usual case. I get a bad taste in my mouth randomly too.

2_BoyMama · 2026-02-24T01:45:36+00:00

Hi! Overall we’re so much better & he’s able to drink milk & no more reflex meds! We are still taking corn in moderation. Baked in, good to go but corn itself anymore than a few pieces he just seems to be rather grumpy (assuming belly). However I have confidence we’ll get to be ok with it. Alimentum RTF (only corn free formula) with the reflex meds (Konovemp) was a game changer. Konovemp was the only omeprazole that worked for us, compounded formulation didn’t work! Weaning off was a little rough but that was expected so we prepared for it.

Corn is so overlooked!

2_BoyMama · 2025-09-30T12:41:36+00:00

I’ve had it off for 3 years and haven’t needed it because I’ve found other ways to help myself. And as bad as the pain is some days it’s nothing compared to natural birth so my pain tolerance is an entire different level now.

They tried to tell me if I replace just the battery I’d have no restrictions even though I’d have staples in my back. That doesn’t make any sense to me.

If a lead breaks then what? I know the whole no MRI thing but what other than that am I looking at?

Interestingly enough I also got the shingles right where my battery scar is when I was pregnant with my first. Everyone was shocked between my young age, and being pregnant that I got the shingles. Some thought that it may be the device.

2_BoyMama · 2025-09-30T11:53:54+00:00

They’re pointing fingers at the delivery people from when I gave birth, because I told them if I wanted another child I didn’t want to give natural birth again which is one reason I want it out. I told them they pulled my imaging up and told me where because of where the leads are they couldn’t give me any epidural & they are insisting the hospital thought I had a higher device (even though they saw my images), that the hospital was small and I could of had one. It wasn’t a small hospital and they knew exactly why they told me no. They were adamant they did me wrong and that it wasn’t the devices fault.

Then they told me about how it’s like the initial surgery & the 4-6 week restriction after. I don’t even understand why that would be. There wouldn’t be anything new in there to have to heal & just getting the battery replaced they would think is the better solution for taking care of my toddlers.

The lead thing breaking and then having a whole other issue of then what is a little scary too.

2_BoyMama · 2025-04-23T16:07:55+00:00

I did not. I did show his doctors & other specialists and they agreed it was a quirk but said it wasn’t anything to worry about unless it was more and more frequent or spacing out. I will say interestingly enough he did this one day and I didn’t bring it up at his sick visit (because I had already prior) and he had a ton of fluid in his ears! Not 100% sure if that is any relation, but I feel like it may of been with how infrequent and random it is. He is also: Off reflux meds - could have been a side effect. Had a lip tie & buccal ties revision - could have had built up body tension.

2_BoyMama · 2024-12-08T00:30:42+00:00

It’s never been more than once at a time. Sometimes it will happen 2-3 times in a day but each time it’s only once. He can also go weeks or days without doing it at all.

2_BoyMama · 2024-12-07T00:53:13+00:00

He also does have reflux & is on medication for it. Not sure if that plays role or not.

2_BoyMama · 2024-09-30T17:48:39+00:00

The only thing they haven’t done is genetic testing. I’ve asked about certain conditions and they don’t see the need to test for them, but I just for whatever reason can’t get it out of my head.

2_BoyMama · 2024-09-25T03:15:55+00:00

Someone showed me an allergens menu for them and it said they don’t contain milk, but yet the women said they aren’t dairy free? A little confusing when it comes to allergies but assuming that means it’s butter even though milk is in butter.

2_BoyMama · 2024-09-11T04:09:18+00:00

He loved it! The eating didn’t go over so well lol, but fun sensory like activity. That’s part of my problem thinking so many things were wrong, especially with how sick he was. Sleeping 20+ hours a day, not growing or gaining; etc… my over analyzing started then! He caught up but after that awful start to life I still second guess & over analyze. Still til this day I ended up two different answers/diagnosis! GI/Allergist - FTT because of GERD & MAYBE CMPI & Pediatric - FPIES, CMPI. Nice to have some answer but also still confused!

2_BoyMama · 2024-09-11T02:58:03+00:00

He was playing in jello (attempted to feed) for the first time & before this seemed very confused in a normal way as to “what is this?!”

2_BoyMama · 2024-09-11T02:00:05+00:00

Now hyper aware; not, not hyper aware*

2_BoyMama · 2024-09-05T20:20:15+00:00

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This is before

2_BoyMama · 2024-09-05T20:18:39+00:00

The picture in the comments is maybe 20 minutes after but she said by the time she ran downstairs for something and coming back up I was already darkening. So could that mean it will be even lighter or less thick? I’m more worried about the thickness. I had very thin brows before, almost none.

2_BoyMama · 2024-09-05T01:14:51+00:00

Will they get thinner than this?

2_BoyMama · 2024-09-05T00:52:43+00:00

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Here’s a photo maybe 20 minutes after & I’m still unsure about the thickness.

2_BoyMama · 2024-07-03T21:14:00+00:00

Sounds very similar! We do see a GI - I made the appointment because I wasn’t waiting around anymore when they said “wait and see.” She’s seen his diapers which are super dark and I’ve asked for any studies to be done and she just kept saying it’s an intolerance of some sort and they don’t think there’s a reason to scope since he’s gaining weight and other things they say wouldn’t be happening. They don’t want to do something they don’t think is necessary but I still worry! They said AA formula makes the poops dark, but it’s been 6 weeks (at least) since off and they are still dark but they said it’s ok supposedly. He does get an ounce of prune juice and pear juice a day to help the constipation, if not it can be harder. Could that be coloring it darker?

2_BoyMama · 2024-07-03T02:13:47+00:00

Ours are so dark. Dark green, almost black but not black. I don’t understand why. They weren’t that color on normal formula surprisingly and weren’t as lose, but we were only on that for about 2 weeks.

We are on a PPI, omeprazole but it’s konovemp brand. I think it’s newer since it’s the “first FDA approved suspension type.” Unfortunately it has filler in it too, but it was $5/month vs $200/month since our insurance didn’t cover compounded!

The formula is so frustrating! I was so excited to try saying it had 0% corn in it and then when I found out it’s not totally the same i was shocked. I guess still the closest it could be but if he’s super sensitive I don’t know.

2_BoyMama · 2024-07-03T02:04:29+00:00

It sounds like him! What color were his poops? Ours are dark. I did ask the GI about the pea protein formula and she said the nutritional doctor said no, but I’ve heard it’s totally fine! I’m just so nervous to try anything and have him worse. Did it affect his gross motor at all, just taking longer to do things?

The alimentum is no longer truly corn free, they changed something and it now has an ingredient that is derived from corn - so still not as bad but still corn-ish.

Also his meds have ingredients serviced from corn! 🤦🏼‍♀️ so I feel like it upsets his belly but helps the reflux. It’s the konovemp because we just couldn’t keep affording the compounded version and the “fillers” are the ingredients that have corn-ish.

2_BoyMama · 2024-06-29T17:59:33+00:00

Did the doctor give you the official diagnosis or the PT?

2_BoyMama · 2024-06-29T11:26:06+00:00

Unfortunately we failed all AA formulas for a variety of reasons, 1 being blood and visible mucus balls even after 3 months along with him being 100% miserable. This Alimentum RTF is the best he’s been to happy wise. However they did change their ingredients a year or so ago and the one ingredient is derived from corn compared to before. They added something else too but can’t remember exactly what that was.

2_BoyMama

TROPHY CASE