My Supply- Please help :-(

[wellbalanced]

I posted last wk about having to put my DS on 'no calcium' milk.

He's 22 week been BF entirely up until last week when his calcium levels were throu the roof, the paed wanted me to get these down with the milk asap. Didnt know if would take weeks, months or longer.
I feed mainly bottle with the odd BF sneaked in! Sometimes (at least once a day) i expressed as the pain was unbearable.
A week later re tested and they have dropped fantastically.. Obviously which im very pleased about!! And i can start feeding more BF
But now so has my supply, I feel like there is nothing there, He's been back on boob since Fri with odd bottle (1 or 2) and when i give him a bottle i express (v little)...

He gets cross, pulling, crying, upset...

Last nite nearly fed all nite (which i know is good for him-supply!!) Im putting him on lots just to tempt him but sometimes he'll not even suck!
I have itchy boobs too!! Is this related in any way?

Will my supply come back or is this it??

[tiktok]

wellbalanced - after bf for months as you have, milk will reduce if you reduce the feeding/expressing, that's for sure, but it won't disappear and you are doing exactly the right thing to bring it back...feeding often esp at night with some expressing as well.

He may not always want to oblige but that's ok - you need to be aiming at at least 8 x feeds in 24 hours and if he is happy to do more, that's good. But a 5 mth old baby will indeed get cross if he's 'asked' too often to feed when he doesn't want to, so you'll need to judge when to accept that for this moment he doesnt want it, and try again an hour or so later, maybe, or when he next squeaks

I thought before that you needed to ask some questions about this diagnosis of high calcium, which I have never heard of before. If this high level of calcium - which as I recall had no symptoms, is that right? - is a bad thing, why would they 'let' you breastfeed, when the special formula reduced the levels? It just sounds such an unusual scenario.

[wellbalanced]

Do you mean let me breastfeed now or before?

He had no symptoms, no, we were referred for something else.

I carried on BF whilst was on 'special milk' to wean him off slowly, reducing the BF daily.

We didnt know how quickly his levels were going to drop thats why i was thinking i had to give up (i guess i wasnt made clear to me) There was talk of him needing this milk until 2yrs.

Now we're trying to find out why its happened.

[tiktok]

I meant if they thought he had high calcium levels, and recommended no breastfeeding and this special formula instead, why would it be 'ok' to return to bf once levels were 'normal'?

Questions to ask:

• what wrong with a no-symptoms high calcium level?
  
  
• what is the normal range of calcium in a baby? (normal levels in babies may be v. different from normal levels in adults or even children)
  
  
• how accurate is the test that was done?
  
  BTW - you said your breasts were itchy. This cd be the milk returning, but it might be something to explore further.

[DaisymooSteiner]

Hi wellbalanced, I have hypercalcemia, and one of my children had hypercalcemia as a baby so know a little about it.

Have they told you what is causing the high calcium level in your baby?

Have you been tested for hypercalcemia?

How high were his levels before and after the change in milk?

Has he had his parathyroid hormone levels checked too?

What were his vitamin D levels?

Hope you don't mind me asking, I'm interested as to how high his levels were to make the paed want him on calcium-free milk. Was he an inpatient while this was going on?

[wellbalanced]

Have they told you what is causing the high calcium level in your baby? no they are looking into it.

Have you been tested for hypercalcemia? no-Should i? I did ask this but they didnt seem too concerned???

How high were his levels before and after the change in milk? not 100% but does this sound right- 2.8 before and 2.4 after??

Has he had his parathyroid hormone levels checked too? yes they were fine

What were his vitamin D levels? im sure tested-think were ok

Was he an inpatient while this was going on? yes we were admitted to childrens ward while other tests were taken.

I dont know very much about it and at the time never ask the right Q's.....

[DaisymooSteiner]

I'm glad they're looking into the cause. It is my understanding that it is never normal for calcium levels to be outside of the normal range.

I'm a bit surprised that they described his calcium level as 'through the roof' at 2.8. It is my understanding that for children up to 2 years a measurement of up to 2.75 can be considered normal. It can be dangerous to have very elevated levels of calcium, but 2.8 doesn't seem that high to me. I've known people with levels of other 3.0 functioning normally; I'm not a doctor though.

I'm very interested to know what they meant by his prathyroid levels being 'fine' - with an abnormally elevated calcium level the parathryoid hormone level should be very low. Basically PTH (parathyroid hormone) tells your body to increase the calcium available in the blood. If the calcium level is high your body doesn't need any more calcium available and so the production of PTH should be suppressed.

If your ds's PTH levels are within the normal range, I do think it's important that you and your ds's father have your calcium levels checked. There's a condition called Benign Familial Hypocaliuric Hypercalcemia which is a genetic condition which causes hypercalcemia from birth. If you or your partner have hypercalcemia, this diagnosis would seem likely (from what I know). If it is this it is nothing at all to worry about, you just live with high calcium levels which need no treatment and you just carry on as normal. This is the condition I have by the way. There are other causes of course, I'm just a bit surprised that they haven't tested you so that they can easily eliminate a possible diagnosis.

[wellbalanced]

Thanks for your reply.

We're at hospital once a week for 3 week for various tests-Sweat test, Echo test, Ultrasound, then meet Paed again mid Oct.
Can i ask doc to check calcium levels?

By describing PTH as fine im presuming she meant nothing to worry about?

Also her term for 'through the roof' was far to high to leave alone.

I dont fully understand it so find it hard taking it in!
I guess i need to ask more Q's...

[wellbalanced]

Do your babies/children have low calcium milk?

[DaisymooSteiner]

No, I breastfed all my babies without any special milk, but for the first three it wasn't known that I had hypercalcemia. With the last one he also had a raised calcium level but we think it went back to normal within a few weeks of birth (I can't actually remember!!) Because mine is a genetic condition it is likely that some of my other babies also had hypercalcemia which persisted but it has never caused any problems and it's not considered worth testing them at this stage.

Any calcium level outside of the normal range needs to be investigated, but I'm still unsure as to why they felt he needed special low calcium milk if he was otherwise asymptomatic and other tests were normal and not dehydrated etc. As Tiktok says it's unclear as to why he needed special milk before and now it's OK to breastfeed without resolving why his levels were high in the first place.

You should be able to ask your doctor to check your calcium levels, it's a fairly straightforward test that they do for me reguarly at the GPs. I think it is worth clarifying the PTH issue as many doctors don't seem to 'get' that a PTH level at the high end of the normal range is suspicious when calcium levels are elevated.

I'd be really interested to know how you get on.

[verytiredmummy1]

Sorry to bump this. My son has hypercalcemia with no found cause. Anyone else had experience of this?

[tiktok]

This is a very old thread - 8 years old. Start a new one. Good idea to include more info, too.