Sytron causing pain - but not for all of my triplets?

[treewithtriplets]

Hi all,

I've got lovely gbg triplets, born at 33wks, now 6wks old. We were discharged from scbu on dalivit and sytron. Our smallest bub (dd born at 1.4kg, now 2.1kg) has a horribly windy tummy and seems in pain often. The other day I decided to miss out meds for all 3 bubs as they'd been grizzly and sicky and I just wanted to get some decent feeds into them. Lo and behold the little one seemed much happier guts-wise! I didn't put two and two together until her pain came back after her meds today, and googling shows sytron seems to disagree with lots of babies.

So I'm after views/advice please! Does it ring true for others that sytron causes belly pain? Anyone with bubs born at similar weight to mine been discharged not on sytron? Anyone decided to stop sytron due to side effects? And if so what did your doctors say?

Difficult situation - if sytron is causing her all this pain then I want to stop giving her it immediately - but obvs don't want to risk her getting anaemic - just strikes me that they must have tested her iron in scbu and I don't remember them ever saying it was low, and I know my iron was really high at delivery as I'd been taking supps religiously.

Views much appreciated!

Can you contact SCBU or doctors? Maybe leave it off till then

Yep Sytron causes awful stomach pain for some Los, and some adults too. It's nasty stuff but necessary. The hospital won't have talked to you about low iron levels because frankly at that gestation it's a given. Babies don't start to build their mineral stores til the third trimester so your los have about half the stores of term babies, possibly even less as they were multiples. My dd had three days in the third trimester so her stores were v low, she needed two transfusions and was on Sytron for a year. She also had appalling reflux, which the Sytron aggravated but other than spacing out the Sytron from her omeprazole (reflux med which did not play nice with Sytron at all) we had to just ride it out. She was re hospitalised with an acute zinc deficiency at six weeks which caused the skin on her face to burn off so I have a healthy respect for mineral supplements for prems! If it were me I'd look to manage her stomach pain, it sounds like reflux which is v common in prems. Ranitadine, omeprazole or domperidone could help as could a strict dairy and soya free diet. My dd's three now, finally weaned off her meds at 2.5 but still needs to be dairy and soya free.

Thank you for the replies both! I did phone scbu today but no dr available to advise unfortunately, will try again tomorrow. Will ask gp too but as they're not prem baby experts I don't want to go by their advice alone!

Sorry to hear you've had such a tough time with your little one, that definitely brings home the importance of mineral supps for prems. I suppose just knowing the prescription is based on dd's actual iron levels and isn't just a blanket thing which may not actually be needed in her case, would make me feel the sytron pain is justified! Totally agree will get meds to reduce the reflux if sytron def needed, but that cycle of one med to correct the side effects of another med is not great esp if it's unclear whether the first med is definitely needed!

Thank again both xx

Oh it's a messed up cycle with the meds alright, even more so because the anti reflux meds that work by lowering stomach acidity reduce iron absorption... Meaning Sytron is needed even more. It's kind of the whole story of prems though, the steroids that develop their lungs put them at more risk of brain bleeds, dds acute zinc deficiency was likely caused in part by the diuretics she was prescribed, which she needed to stop her congestive heart failure. At the really acute end of medicine there are no wonder drugs, most have unintended consequences...

Was going to reply but Queen of cats for there first. My triplets were born at 33+2 and the iron supplement did cause problems for my daughter. My three are now 16. That's flown by.

One thing just knocks on to another I thing doesn't it, I spose all we can do is balance the pros and cons as best we can. Still getting my head around these things being my decision (of course made on the basis of official advice), those weeks in scbu when stuff was totally out of my hands sort of impeded my sense of being their mum I think, in regard to decisions about their care. Can't imagine the little bundles being teenagers! Bet yours are celebrities at school being trips!

DS3 was born at 30+5. He's now 24wks(14 corrected)
He came home on sytron, vits and folic acid which I was mixing into expressed breast milk. When he became exclusively bf, it was a massive pain in the bum to still have to pump/sterilise bottles and pump attachments just for a few mls! I was looking after my very ill dad at the time, too...
So I just shopped them(and felt very guilty!) that was about 7 weeks ago.
We had our follow-up apt with our Scbu consultant last week and I told him all this. He weighed DS, and said because he was doing so well, to not bother with them anymore! I was gobsmacked. I thought he was going to b*llock me!
So, I'd leave them for a couple of days or until you speak to the neonatal doctor. As you say, gp's don't really specialise in the really teeny ones, so wouldn't be the best port of call for this one

Thanks for reply! Again really good to know others have quit sytron safely! Various hospital fact sheets I've found online (not my own hosp unfortunately) seem to suggest it's needed to 12mths regardless of ff or bf, but will see if docs will test my little one rather than do the blanket prescription!

I know that they certainly didn't take the supplements until they were 12 months old.

The only way to test is with a blood sample, which ironically is a big cause of anaemia in prems and which - once they are free of lines is pretty traumatic. Their blood pressure is so low they don't fill syringes by virtue of the heart pumping the blood out like adults do, instead (if they can find a vein), docs have to use an open needle and squeeze the blood out along it by pressing on the surrounding tissue for up to three or four minutes. This process requires you and another nurse to hold your lo down while they are frankly hysterical. Dds probably had a dozen, maybe 20, blood tests done, all the veins on her wrists, arms and ankles are now blown, some idiot trying and failing to get blood out of a vein on the top of her head was particularly godawful, at three she has tiny scars everywhere and once gave a nurse a sharps wound she was fighting so furiously. She is still utterly terrified of needles so her immunisations were heaps of fun. Tbh unless your body knew it was going to go into prem labour your Los have about 1/6th of the iron stores of a term singleton. I really would just keep using the Sytron. Some mineral deficiencies can be truly awful. Do a google image search for acrodermatis enteropathica and you'll see what happened to my dd at four months old.

Please be warned the pics will be upsetting :( and from what little I haven't blacked out about it all I can assure you dd found it as painful as it looked. In order of child suffering I'd put it mineral deficiency, blood test, then Sytron. And yep we still found Sytron a bastard!

Isn't that a genetic/inherited condition?

No she was tested for it, another blood test, but it also presents as an acute condition rather than the chronic one in premature babies, because - guess what - they have massively depleted mineral stores. Combined with diuretics to combat her congestive heart failure which are thought to wash out up to 60 percent of mineral stores, and the fact that unlike most 27 weekers she was bf so didn't get super fortified prem formula, and her zinc reserves ran out at six weeks adjusted, four months actual. In Europe it's pretty common because most prems are bf, over here no one had a clue because frankly she was only the second 27 weeker to ever leave the unit bfing, so she endured 10 days in hospital on powerful intravenous antibiotics for a suspected staphylococcus aureus 'scalded skin' infection

I mean yes it can be genetic in which case it's a lifelong condition, but it can also present as a non genetic acute case in prems, not because their genes can't metabolize zinc but because they don't have enough.

Within three days of oral zinc solution her skin started to heal, but she needed the supplement for another six months... Til her high zinc levels began to stop her absorbing copper crazed eyelid twitch. A normal blood concentration is 14mols per ml. At diagnosis, hers was 2, her neocortex had started to shrink, her eyesight could have been permanently damaged, she would likely have died within the fortnight. Sytron made her uncomfortable too but after what she went through there was noway on gods green earth she wasn't getting the minerals she needed. Mineral deficiency sounds very bland and slow acting and not too much of an emergency but it was far worse than seeing her on a ventilator. Given the effects of low iron on lifelong brain development, saying everything's grand a few weeks or months after prematurely halting a supplement probably isn't the full picture.

Crazy, what your lo and you have been through is just awful, I'm sorry, but it's really inspiring that you've come out the other side! You're really well-informed (sounds like you had to become the expert as your case was unusual) and I totally take on board what you've said - weighing up risks and benefits of sytron it does feel like the lesser of two gassy bastard evils!

Hosp got back to me and advised not to drop sytron, but said I could split the dose or cut it a bit. So to preserve my sanity I've cut it (from 1.7ml/day to 1ml/day) because splitting it would mean doing something different for a single triplet and I'm trying to avoid that! She seems a bit less distressed by it now, fingers crossed. I'll try weaning her back up to the full 1.7ml over a few days, once her little guts have unravelled a bit.

She spent a fortnight with her little peahead bright red with all her straining, so it's lovely to see her looking pretty and pink again!

Thanks a million for the input all, much appreciated xx

Glad I came across this thread today might explain why my little one is so unsettled today. She is 28 days old and started on Sytron today and was really agitated and upset earlier and I wonder if it's because of the meds. Will mention to the health visitor when she next visits.