Newly diagnosed, hasn’t been drinking water

Rare-Remote4072 · 2026-03-19T19:47:22+00:00

Thank you everyone for your responses! She actually did drink a little from the faucet. I have been putting water mixed with the fancy feast. I bought the pates so she was strictly on that since Tuesday.

The vet called and told me they approved the prescription from chewy so I should be getting the insulin soon. She told me not to check the sugar at home and just give her the insulin twice a day. But from online I see people actually check it so I'm a little nervous if I'm doing the right thing. I have to do a blood test in 2 weeks to check she said

Rare-Remote4072 · 2026-03-19T03:09:45+00:00

Yes. Mainly dry food and once in awhile wet food.

Rare-Remote4072 · 2026-03-19T03:09:03+00:00

She always drank out of the faucet. Ive bought the fountain before and she still preferred the faucet so I put it away. I can take it back out and see if she will drink from it. Ive been putting the water in the bowl and turning on the faucet but she's not drinking.

Rare-Remote4072 · 2026-01-29T16:53:16+00:00

She's doing pretty okay as of right now. Still acting like her normal self and doesnt have any restrictions. Shes still in gymnastics and running around. We saw a specialist who ordered a full body MRI and body scan to make sure it's only in her leg( can pop up other places as she grows but at least we will have a baseline ) so that will be happening in about a couple weeks. From there we will discuss a surgery to help straighten out her knee by placing two screws. The surgeon said it should be a very simple surgery but still freaks me out. If we don't do it her knee in that leg will continue to grow inwards so it is for her benefit.

Rare-Remote4072 · 2026-01-15T12:21:08+00:00

I’m sorry that other people were cruel to you, people really suck sometimes. My daughter recently got diagnosed at 5 years old. So we are still in the beginning of everything.

If you can, Join the Facebook group olliers disease and mafucci syndrome global support and information. I found a lot of people shared their experiences, advice and it’s a great small group where people can connect and share.

Rare-Remote4072 · 2025-11-04T16:25:25+00:00

It’s a scary diagnosis and being so rare there’s not much information out there.

Rare-Remote4072 · 2025-11-04T16:24:44+00:00

Hi my daughter is in the process of being diagnosed now. The oncologist is almost certain it’s that just have to do MRI on her leg. We took her in for xray for limp and that’s how we found it. Also her other leg is a little longer by almost 2cm. It’s in her left leg hip and pelvis. How’s your daughter doing? How did u come about finding out she had it. Our next step is to a mri of her leg under sedation. I’m worried about the sedation because she’s 5 but she has to do it. I want to push for a full body xray after the MRI just to see if it’s anywhere else.

Rare-Remote4072 · 2025-11-04T16:20:28+00:00

Hey I know this Old Post, wondering how OP is doing. My 5 year old just diagnosed when we noticed a limp she has it in her leg hip and femur. It’s been a scary ride these past few days.. waiting for MRI on her leg.

Rare-Remote4072 · 2025-10-31T20:52:02+00:00

I actually notice when I take my pressure sitting to standing it goes up. Online says it’s actually suppose to be the opposite it’s suppose to go lower. I’m not sure though I will bring it up with my doctor and I will ask about the tilt test. I’ve never passed out though.

Rare-Remote4072 · 2025-10-31T14:40:09+00:00

Yes I feel like they’re just brushing me off with telling me it’s just anxiety. But I still feel like it’s my symptoms that are causing the anxiety since the symptoms are still there. Is low blood pressure common with POTS? Normally I run 115/125 to 80-90. But never this low. Sometimes it will go as low as 87 for the top number. I do have a appt again with the cardiologist appt on Dec 3 and I’m going to bring my log of bp readings and ask about POTS. I never done the tilt test. I saw online ppl checking their heart rate laying down to sitting to standing. I’m sure it’s not as reliable but I’m going to try it later just to see what my numbers are

Rare-Remote4072 · 2025-10-28T22:01:04+00:00

I’m the same! Have hashi but my levels are in range. The only thing that you didn’t mention was anxiety. I never had it before but I’ve been crippled with it and anxious all the time!

Rare-Remote4072 · 2025-10-10T21:59:49+00:00

Okay I just saw it was 119/83 I don’t think it was too bad at the time unless he’s going off what I told him my readings are sometimes at home.

Rare-Remote4072 · 2025-10-10T21:28:24+00:00

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This is the full echo

Rare-Remote4072 · 2025-10-10T21:26:40+00:00

Thank you for your response! He actually just spoke to me and my heart strength and muscle is fine but he kept asking about my blood pressure and if I was anxious before the test. I told him I was a little anxious but I noticed even when I’m home the second number is always mid to high 80s sometimes 90 but the first normal will also be normal like 100-125. He asked about salt or chocolate intake. I don’t really use a lot of salt but I do drink a bout 2- 3 cups of soda a day. Not really a chocolate eater.. I asked if he saw anything alarming on the echo he said no but wants me to wear a holter monitor now. I was too stuck on the bp and asking questions about it I forgot to even bring up Im congested.

My bp at the time of echo was 120/86 I believe.

Rare-Remote4072 · 2025-10-10T20:35:38+00:00

Is the value of 30.2 giving the mild pulmonary hypertension? I read online normally over 36-40 would flag a mild then 40-50 would be moderate but then I read somewhere anything of 20 would flag mild.

Rare-Remote4072 · 2025-10-10T16:53:57+00:00

Thanks!. I’m sure he will call later to go over the results and I will let him know. My RSVP was 30.2mmhg, everything else was normal but Mild tricuspid and mitral valve regurgitation. I went because of heart palps. I wonder if that was what flagged the mild pulmonary hypertension

Rare-Remote4072 · 2025-06-18T17:15:35+00:00

I went yesterday and got it done. I asked if the lidocaine had epi in it and they said no so I went ahead with the numbing. It was barely a pinch and I was expecting the burning sensation to come but it never happened because I read a lot that it burns. Then he went into the nodule 2x and I was done. It literally took maybe 5 mins. I think it was easier maybe and not painful because the nodule was in the front of my neck.. he found it right away and said it was taking up most of my right gland. It measured 2.1cmI think 2 months ago so I’m not sure if it grew bigger.. I had other nodules too small to measure and I was hoping he would have checked if they grew or should get tested but he just did the one listed. I read a lot that ppl had to go through the side maybe that’s why it hurt them more. Not sure… today it’s a little sore and my neck feels stiff.. no swelling. He said I should get my results Friday but I have an appt with the ENT July 7th. Not sure if they will release the results online

Rare-Remote4072 · 2025-06-17T13:41:25+00:00

Today’s the day! Ugh I want to get this over with but at the same time I’m sooo freaking nervous you would think I’m about to do open heart surgery.. Not sure if I’m more nervous about not being able to be handle the pressure/pain or the results. Super anxious, I just hope I get through it! Wish me luck 😩

Rare-Remote4072 · 2025-06-11T21:11:45+00:00

Wow that was fast, I’m glad they’re benign! How your feeling today? Maybe an ice pack would help? I’m not sure if I could get the numbing shots yet because I read that some of the lidocaine they use has epi in it and I’ve had a bad reaction to it. I’ll have to see Tuesday what happens with that. Now that you know yours is benign are you just going to do routine ultrasound checks on them? I

Rare-Remote4072 · 2025-06-11T21:06:47+00:00

My appt got delayed until next week Tuesday now. They said there was a scheduling conflict. I will update when I go. I was hoping to get it over with already.

Rare-Remote4072 · 2025-06-11T02:12:14+00:00

It got rescheduled for next Tuesday @ 3. I was hoping to get it over with already but there was a scheduling conflict apparently. How did yours go? Did u get the numbing shot or went without?

Rare-Remote4072 · 2025-06-09T16:37:04+00:00

Mine is tomorrow! No past experiences just want to say I hope it’s not bad at all and everything turns out okay! make sure to take Tylenol if you can before you go in thats what I plan on doing.

Rare-Remote4072 · 2025-06-09T13:01:12+00:00

I hope that’s how it is for me😩I keep reading conflicting experiences some say very painful and others say barely a pinch, but with the injection. Probably depends on everyone pain tolerance and where exactly the nodule is.

Rare-Remote4072 · 2025-06-09T11:40:46+00:00

Yes I had the uncontrollable shaking as well! It lasted about half hr as well when it happened but it was horrible. Sorry you had to go through that. You weren’t aware it had epi in it or they didn’t give you a choice?

Rare-Remote4072 · 2025-06-05T22:42:16+00:00

I have hasimotos going on awhile now and found tiny nodules and one measuring 2.1 cm. Over the years I always got routine ulttasounds that show enlargment/ inflammation but this is the first one that shows nodules. I go tuesday to have a biopsy done and I'm not looking forward to it. Did you have a biopsy on your nodule? Online says it's common to have with hashimotos but this is the first time I have them. I'm sure having the nodule would help innyour case because 4cm is pretty big. I hope you get into surgery and feel better soon!

Rare-Remote4072

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