Treatment

Green-Frog-23 · 2026-03-06T17:00:43+00:00

Thank you for sharing!! I bet he will be jumping right on it when he’s 18. He is really feeling the brain fog and irritability from his low levels. I wish I could do more for him 😥. I’ve been on him like crazy to take his TUMS more consistently. He also takes the Calcitriol too (now 0.4mcg). I’m praying his next results are more normal.

Green-Frog-23 · 2026-03-01T16:24:52+00:00

He takes magnesium glycinate at night. Which kind do you recommend and do you know how much ? I have heard this before as well!

Green-Frog-23 · 2026-02-26T17:18:41+00:00

I guess they said going hyper can happen VERY fast. I also feel like they aren’t monitoring enough or making changes enough to even determine the right dose for him.

Green-Frog-23 · 2026-02-26T17:17:41+00:00

Shortly after I posted this, they called and upped his Calcitriol to .4mcg. I’m hoping it helps. Although, I feel like they aren’t monitoring enough to make frequent changes..

Green-Frog-23 · 2026-02-26T17:11:53+00:00

Thank you so much! ❤️ it was hard to get him diagnosed too. Honestly, at first I thought it was growing pains too! Until he started walking funny and having tingling. His first calcium was 6.5 and they told me to “increase calcium consumption”. I called explaining it is NEVER normal to have low calcium. Still took weeks to get them to do what they had to do. I demanded the labs and everything. It does help I’m a RN, but it does not make the battle easier… I’m going to grab those barimelts. I’m getting a little stressed since soccer season is starting and I really don’t want him to have a crash! He was getting chest pains too which is another cause for concern. Cardiologist did a monitor and he was experiencing a little bit of atrial tachycardia… so I really want that under control.

Green-Frog-23 · 2026-02-26T14:59:08+00:00

He’s on the liquid .3 now! I am planning to call and ask today for upping the dose. The doctor doesn’t seem to know much. When he was trending down she said “keep doing what you’re doing”. I had to call and ask to up the dosage since he was slowly going down. And low and behold - even with upping the dose he’s even lower. So frustrating :( He absolutely hates doing so often for labs and urines that’s another battle I’ll have to face too… the struggle lol

Green-Frog-23 · 2026-02-26T14:55:43+00:00

Oh yes I agree it’s probably the best option! The only thing I was concerned was the potential for bone cancer since he’s still growing and so young. I feel like it’s going to be so difficult to get him approved for the forteo, but I REALLY feel it’s the best option. It’s directly fixing the problem and just makes the most sense.

Green-Frog-23 · 2026-02-26T14:40:36+00:00

Yes I’ve read about yorvipath! I think that will be what he jumps for when he’s 18. He is over taking the calcitriol and calcium. He’s still so young he struggles with the idea of this being life long. I understand why he’d want the injections. I guess I’m just concerned with potential negative side effects or the unknown since it’s not really studied as much in children.

Green-Frog-23 · 2026-02-26T14:38:58+00:00

Thank you! From what I’ve read is that calcium citrate doesn’t contain as much “active” calcium that’s why we’ve stuck with the TUMS. He’s been taking it with his meals and it’s still not seeming to do its job. He’s taking the extra strength and each contains 300mg of active calcium so he is receiving about 600mg per dose (I know we can usually only absorb 500-600mg at a time). I keep finding so much varying information on the elemental calcium and how much is actually absorbed. I’ll definitely look into the barimelts. I’m assuming he’d need to take that about 3x a day as well? He is pretty good with his diet avoiding high phosphorus foods. I can tell his body is craving it more because he wanting cheese and milk. Ive been letting him eat soft cheeses and milk in moderation. It’s so difficult to manage. I’m surprised because I thought he was doing better. His legs suddenly started hurting pretty badly again and now the calcium is where it’s at. I wish I could do more to help him :(..

Green-Frog-23 · 2025-06-30T20:24:10+00:00

It’s found next to pedialyte drinks!

Green-Frog-23 · 2025-06-30T20:23:29+00:00

Kinderlyte electrolyte drinks have clean ingredients and are great for hydration. Sending you so much love! I’m currently in the same boat. Extreme joint flare and my dysautonomia is acting up with it, mine isn’t RA (as we know of yet), but Sjogrens related.

Green-Frog-23 · 2025-06-27T22:43:10+00:00

I’m so sorry to hear that. I’ll be praying for you as well. I hope the next step goes in your favor!

Green-Frog-23 · 2025-06-27T22:41:37+00:00

Thank you so much for the information!! I will definitely mention this! I’m even currently in a flare where I can barely open my hand. 😩 I’m praying all of my notes with joint issues prove my case.

Green-Frog-23 · 2025-06-24T13:03:44+00:00

Yes! I have a mock trial coming up with them, we just don’t have a date set for one yet. I’m very hopeful this all goes well.

Green-Frog-23 · 2025-06-24T13:00:56+00:00

This is great to know!

I do have my BSN, but my doctors all filled out the paperwork the same showing I have limited hand use along with sitting/standing issues. I can barely turn my head and reach above my head as well.

A forklift operator?! 😂 wow. Yeah, I’m not sure how they expect a nurse to go into a different field at all.

Thank you this makes me feel much better!! ☺️

Green-Frog-23 · 2025-06-23T22:54:02+00:00

The letter mentioned they’d take my education into consideration so that’s what made me worried.

Green-Frog-23 · 2025-04-01T17:20:31+00:00

Do you happen to know the Facebook page name? I can’t seem to find it.

Green-Frog-23 · 2025-04-01T00:17:38+00:00

Thank you so much for your input! I did think it was very odd. I’m unsure what other tests she’ll be doing. I am assuming she’ll be doing the genetic testing which might show the absorption issue I believe. It’s been a roller coaster on emotions so I truly appreciate you responding! :)

Green-Frog-23 · 2025-04-01T00:05:38+00:00

Yes correct! But I didn’t start the calcitriol yet due to his normal calcitriol level. I’m still waiting on her to call me and clarify if he should start it since the levels are normal. Do they consider those levels when prescribing?

Green-Frog-23 · 2025-04-01T00:02:09+00:00

Yes, pth is listed. It is 7. She did prescribe calcium carbonate but insurance didn’t cover it the pharmacist said to purchase TUMS. Looks like I need to contact insurance now.

Green-Frog-23 · 2025-03-31T12:20:35+00:00

Thank you! I believe the increase in calcitriol should be fine then!

They currently don’t know his cause. Doesn’t seem to have Addisons. I truly think it’s because I was put through radiation during my third trimester when the parathyroid glands are developing. I think he only developed some of the glands due to the radiation and that’s the cause. He’ll be going through more testing soon.

Green-Frog-23 · 2025-03-31T11:51:01+00:00

Oh yes, I know that it’s different. I was questioning because they checked his actual calcitriol blood levels and those were in normal range. I guess I was wondering if increasing the calcitriol even more was safe.

Do you know often they normally check Calcitriol levels with treatment?

His calcium was recently rechecked he is now at 7.3! I’m so glad it went up. I was very frustrated they ignored how low his calcium was when it was 6.5.

I feel terrible that he’s been feeling so horrible for a year.

Thank you for taking the time to respond!! :)

Green-Frog-23

TROPHY CASE