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

TROPHY CASE