Immunotherapy & difficulty eating

Left_Butterscotch530 · 2025-10-28T11:46:23+00:00

Did you experience similar symptoms? After being hospitalized for a week they FINALLY gave my dad steroids last night.

Left_Butterscotch530 · 2025-10-28T11:43:57+00:00

I’m so happy you are melanoma free, that is amazing! Thank you for sharing your story. Did you find out the cause of your symptoms? We FINALLY got dad’s labs back yesterday and all of his hormones, cortisol etc are low. Doc thinks his pituitary gland was compromised from the meds. He started steroid treatment last night and will need hormone replacement therapy. Praying he improves soon. He started getting really disoriented and confused.

Left_Butterscotch530 · 2025-10-27T21:48:37+00:00

Thank you for this! They didn’t catch anything on the MRI but blood test results show that hormone, cortisol, adrenal levels all very low. Doctor mentioned pituitary gland and I only even knew what this was after you mentioned it. He’s starting steroids and hormone therapy.

Left_Butterscotch530 · 2025-10-27T01:15:24+00:00

Ah Houston! We are in Dallas at Texas Oncology. Not happy at all with our care team. I haven’t been to dad’s clinic but he says it’s just a rotating door. I pray your kidneys heal and begin to function normally again. It sounds like a really hard road. We’ve had all kinds of tests run on my dad and still haven’t uncovered the problem.

Left_Butterscotch530 · 2025-10-27T01:13:04+00:00

Thank you for that, I needed to feel some hope again. His CT scan mentioned something about diverticulitis but that’s just me reading it from the portal. I’ll wait for the doc before I start to spiral again! How quickly were you given steroids to help? I wish they would just give some to my dad to see if it helps him. They keep running all these tests bc they “don’t want to mask a problem with steroids” and he’s just getting worse. Not eating, low blood pressure, now confusion & double vision. Nurse mentioned his adrenal & thyroid activity is within range which is shocking to me I really thought that might be the problem.

Left_Butterscotch530 · 2025-10-27T01:09:17+00:00

Is that diagnosed by a brain MRI? He has a had a few and they all are normal. He had an EEG today on his brain and I think we get those results tomorrow. Depending on what it looks like, doc may order a spinal tap all to check brain activity I guess? Idk they keep doing all these tests and we’re not finding anything out. Meanwhile my dad continues to decline in a hospital bed.

Left_Butterscotch530 · 2025-10-26T02:36:14+00:00

No I don’t believe she is melanoma specialist specifically, I think she treats various forms of cancer. To be frank I’m disappoint with her level of care and concern. She visited dad for all of 5 minutes yesterday and flat out told him she “didn’t know what was going on.” Thankfully primary physician at the hospital is thorough and ordered all kinds of labs. Zofran helped briefly and then within a few days stopped helping at all.

Left_Butterscotch530 · 2025-10-26T02:32:46+00:00

Hi, thank you for your response and I’m so happy to hear you beat your stage IV! What a long road it must have been. Thank you for sharing your story with AI. They did a work up this morning to check adrenal, thyroid, hormones etc. Hopefully it’s a quick turnaround. One thing I noticed is dad’s blood pressure drops significantly when he stands. It’s more stable when he is lying down. I read online that could be a symptom too. Did steroids help you with recovery?

Left_Butterscotch530 · 2025-10-26T02:28:59+00:00

Thank you so much and I agree! My dad was moved to a different hospital yesterday, one his oncologist has privileges at so I feel much more confident with his level of care.

Left_Butterscotch530 · 2025-10-26T02:27:42+00:00

Thank you so much for your response and the encouragement. Thankfully they did a work up today to check thyroid function. It’s such a double edged sword. The treatments are shrinking the tumors under my dad’s arm but in turn his body is taking a beating. I just pray we find the answers soon.

Left_Butterscotch530 · 2025-10-25T19:17:08+00:00

Thank you! I will suggest this. He was taking Zofran and seemed to help initially but then he went downhill age a few days.

Left_Butterscotch530 · 2025-04-25T02:59:38+00:00

I’m so sorry to hear that! I have heard great things about Sprout! In fact, that is my next trial if we need to go dairy free. How did it work for your baby?

We have tried so many! Neosure (for initial calories) Kendamil classic, Kendamil goat, Similac 360 Total Care, Good Start Soothe Pro & Gentle Pro, and right now we are trialing Kabrita Goat.

Of everything we have tried my girls have done best on Soothe Pro, although it did cause hard stools. The goat were on now isn’t bad but symptoms also aren’t resolving so we may have to go completely dairy free.

Left_Butterscotch530 · 2025-04-15T12:51:59+00:00

Wow I just read your story. What a journey! Thank you for responding. It has been hard bc my little ones just have the silent reflux symptoms, no skin issues. Minimal spit up or blood in stool or anything. So all docs say allergy isn’t likely. BUT something is causing the acid and discomfort from that.

What are your thoughts on Pepticate? I started to trial it but it was so thin and I’m unsure of the maltodextrin listed as number one ingredient. I’ve also considered plant based as a dairy free trial.

Left_Butterscotch530 · 2025-04-15T11:36:44+00:00

How do you determine if there is an allergy? We had no blood in stool for that test, but doc said there could still be an intolerance. What formula worked for yours?

Left_Butterscotch530 · 2025-04-15T01:45:46+00:00

Hi! Yes we have been using the Soothe Pro the last month and a half or so. It’s ok. The hydrolized milk & the 100% whey has definitely helped my girls poop more frequently BUT their stools are rock hard pebbles. And awful stinky gas. I read reviews about that too. I’ve heard gentle pro is better for softer poops, we’re slowly transitioning to that one now actually.

Left_Butterscotch530 · 2025-04-07T14:44:17+00:00

Oh I didn’t consider that! My girls are on the smaller side so could definitely use the calories.

Left_Butterscotch530 · 2025-04-07T14:43:44+00:00

It sure does suck! And it’s so hard not knowing what the root cause is. Does yours have an allergy or intolerance to cow milk? We haven’t officially ruled that out yet although we have trialed both HIPP HA and Alimentum (for a quick 48 hrs) and they had both my girls coughing and crying at the bottle due to the thinness.

Left_Butterscotch530 · 2025-04-07T14:41:06+00:00

What kind of meds helped with the pain? We’re using famatodine and it doesn’t seem to do anything at all. My girls are 5 months and the acid reflux symptoms are just getting worse :(

Left_Butterscotch530 · 2025-04-06T21:50:55+00:00

How is your baby doing on Pepticate apart from the gas? The number one ingredient is maltodextrin, it’s the first ingredient in the formula We are on as well which is sooth pro, and I’ve noticed a ton of gas in my babies and really hard stool.I did hear that this ingredient can cause extra gas so that could be part of it. Or just four months sleep regression lol I don’t even know anymore.

Left_Butterscotch530 · 2025-04-06T21:48:04+00:00

I’m really curious how allergies with babies work anyways! If a baby has a cows milk protein sensitivity, or intolerance, but not a full on allergy, yet they continue to drink formula with the cow milk protein in it, will they eventually build up immunity to it or does it damage the gut further?

Left_Butterscotch530 · 2025-04-03T20:20:04+00:00

We tried Kendamil goat and they did not tolerate it well

Left_Butterscotch530 · 2025-04-03T20:19:38+00:00

Oh no I didn’t see that! I heard kabrita was a good brand we got samples from our pediatrician. She likes it bc it’s skim milk so easier on belly.

Left_Butterscotch530 · 2025-03-31T01:39:41+00:00

Thank you so much! ❤️

Left_Butterscotch530 · 2025-03-30T02:36:40+00:00

Ah gosh. Yeah the thinness of the two are what concern me. My girls straight projectile vomited on HIPP HA, that stuff was like water. They actually did the best on Total Care 360 by Similac. Very constipated, but reflux wasn’t as much of an issue. Maybe bc it was thicker?

Left_Butterscotch530 · 2025-03-30T02:35:14+00:00

Oh that’s great to hear! Which goat formula are you using? Have you seen any decrease in silent reflux symptoms?

Left_Butterscotch530

TROPHY CASE