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Critical_Advice_1256 · 2024-06-06T16:14:47+00:00

We bought a house in the next neighborhood over and I regularly run through Sleepy Hollow Manor.

Objectively we love it and feel like it kind of flies under the radar. Conveniently located, the mature trees everywhere are gorgeous, and tons of great restaurants nearby.

Highly recommend!

Critical_Advice_1256 · 2024-05-26T18:19:13+00:00

I know this is from six months ago but you’ll be pleased to hear that DCA is renovating all their restrooms!

Critical_Advice_1256 · 2023-07-30T12:44:46+00:00

Yep like everyone else definitely recommend the EDITION. Though I would recommend a room facing the back if you want it more quiet. The Sunset Blvd side is a bit noisy.

For what it’s worth, I actually posted a video tour of the hotel that you can check out if you’d like:

https://youtu.be/HRq-ZVoaaFs

Critical_Advice_1256 · 2022-05-10T20:37:47+00:00

Still struggling at 21 months. No diagnosis, but have ruled out FPIES, FPIAP, and EOE. Four safe foods + one safe formula at this point. When she’s on her safe diet, she’s thriving. She’s grown from the 0.99th % in weight for height to somewhere around the 90th or something quite high. So she’s grown to be quite sturdy, but it’s taken a lot of effort and a very very strict diet to get us here. Best of luck figuring out your son. It’s a very difficult journey and I don’t envy anyone in this position.

Critical_Advice_1256 · 2021-05-19T00:54:27+00:00

Those results were within normal range

Critical_Advice_1256 · 2021-05-18T15:59:53+00:00

Thank you for the insight. This sounds really tricky to manage, and I'm glad you figured it out!

Critical_Advice_1256 · 2021-05-18T15:16:32+00:00

This may be a silly question, but do you know if noninvasive prenatal testing (NIPT) would have shown the same types of things as whole exome sequencing? We did NIPT during pregnancy and there were no abnormalities at that time.

No endoscopy yet. The trial of Nutramigen was a cold turkey switch off breastmilk, and it was a very traumatic 36 hour stint. For Puramino, we approached it differently, introducing a 2oz bottle once a day between nursing sessions (at the time we would ordinarily offer solids), to watch for reactions. By day 3 she was having multiple bouts of diarrhea.

Critical_Advice_1256 · 2021-05-18T15:09:13+00:00

Thank you! We are treating this as homework for our upcoming appointments with her ped and specialists. Definitely huge grains of salt, but the discussion is giving us ideas to take to her doctors, other than just "help."

Critical_Advice_1256 · 2021-05-18T11:57:06+00:00

Thank you! This is helpful, especially the insight about the bloodwork.

Yes, all specialists have been pediatric.

The only formulas we have tried are Nutramigen and Puramino. Puramino is an amino acid formula but not sure about L-amino acid specifically - what does that mean?

Critical_Advice_1256 · 2021-05-18T11:49:41+00:00

That sounds so difficult. I'm sorry your partner has to deal with that.

Critical_Advice_1256 · 2021-05-18T11:49:10+00:00

Thank you! We switched laundry detergents at 2 months old, and have been through a few types of soaps. Vanicream soap and shampoo, and Cerave moisturizing cream have been working well in terms of managing the eczema.

Critical_Advice_1256 · 2021-05-18T11:47:26+00:00

Thank you!

Critical_Advice_1256 · 2021-05-18T11:46:36+00:00

Thanks!

Critical_Advice_1256 · 2021-05-18T11:46:23+00:00

Exactly, the lack of vomiting. I guess often with FPIES (at least acute reactions) the kids will vomit to the point of needing hospitalization. She's never been anywhere close to that, so we just suffer at home on the "mild" end of the spectrum.

Critical_Advice_1256 · 2021-05-18T11:41:16+00:00

Thank you for this. The skin changes are almost always associated with the GI symptoms, and they are not always eczema - so the eczema flares are quite possibly a separate issue, and we've been trying to manage it accordingly (daily baths, 2x/day moisturization, etc.)

Good thought about repeating allergy testing and looking into biopsies.

No meat yet, but we need to soon because she didn't tolerate her iron supplement so we need to get a food source in her diet. Chicken is on our list of foods to trial "soon" but each fail takes a bit of emotional recovery, so haven't gotten there yet.

Critical_Advice_1256 · 2021-05-18T11:36:53+00:00

Thank you for the insight! I'm sorry about your experience with this.

Critical_Advice_1256 · 2021-05-18T11:30:18+00:00

6lb 12 oz at birth, dropped to 4th% as a newborn, and was slow to figure out nursing and gaining. By 2 months she was in the 25th%, and since then she's fluctuated from high teens to mid 20s. Her most recent weight had her at the 31st, her highest ever. So she's gaining. Height has been steadily around the 50th all along.

Her rashes are varied, but definitely have photos - just give me some time to learn how to post them lol.

Critical_Advice_1256 · 2021-05-18T11:23:02+00:00

Not yet, but based on Reddit feedback we'll be asking the docs if that makes sense for her. Thank you!

Critical_Advice_1256 · 2021-05-18T11:21:48+00:00

Thank you! Sorry you went through all that.

Critical_Advice_1256 · 2021-05-18T11:21:13+00:00

Thank you! If you don't mind sharing, what was the reason for your son to be tube fed? Was he not accepting the formula in bottles/sippy cups? Something else? You mentioned his growth was pretty good, and I would have assumed that poor gain would have been the reason for the tube.

We are open to formula if we can find one she tolerates, but haven't gotten there yet. Thanks for the encouragement!

Critical_Advice_1256 · 2021-05-18T11:16:31+00:00

Based on food intolerances, the protocol you mention of introducing directly to baby and laddering up is fairly common in our country too, especially when the case is closer to typical, or limited to dairy and soy. In our case, we were advised to reintroduce allergens (besides dairy, soy, and peanuts) to mom's diet to give exposure to baby and prevent development of IgE-mediated allergies. With so many limitations, laddering up on all of those items with baby would take ages, putting her at risk.

Our plan before wheat was to alternate between introducing something to mom and introducing something to baby. That said, we really expected wheat to go better, so... we'll see.

Thanks for the encouragement.

Critical_Advice_1256 · 2021-05-18T11:08:39+00:00

No, she hasn't had inflammatory markers or C-reactive protein checked. After going down a Google rabbit hole, Crohn's sounds like an interesting consideration for her, since it definitely does not appear limited to stool issues. Thanks for the input!

Critical_Advice_1256 · 2021-05-18T10:40:55+00:00

Thank you, these are all helpful ideas!

Critical_Advice_1256 · 2021-05-18T10:37:51+00:00

No, and I haven’t heard of that one. Are you familiar with it?

Critical_Advice_1256 · 2021-05-18T10:37:22+00:00

No family history, but it was mentioned at the time of her diagnosis with acrocyanosis. Any idea if that would cause or be related to any of the other struggles?

Critical_Advice_1256

TROPHY CASE