THREAD FOR ANYONE WHO DID WEAN/IS WEANING EARLY BECAUSE OF A MEDICAL CONDITION.

[VictorianSqualor]

I'm not advocating weaning before 26 weeks unless on the advice of a qualified nutritionist/paedatrician but have started this thread for those who have gone down this road with PROPER PROFESSIONAL advice and guidance.

I would strongly suggest anyone told by their HV or GP that their baby needs weaning before 26 weeks asks for a referral to a dietician/nutritionist/paedatrician

Please could other posters respect this is something these posters have been told to do by qualified professionals and not a decision they have taken lightly as I ask that this thread does not become another war of disagreements.

As many of you may know I write a blog on weaning. Am up to my eyes in trying to right out a proper backed up post on why not to wean, but am interested in the times when there really is no other way. not because baby was wanting a lot of milk or HV said so, but medical conditions which warranted weaning to begin before 26 weeks, such as reflux or FTT.

Thanks ladies.

Hi VS, I'll give my (sorry long) story of why we weaned early. Around eighteen weeks.

As you requested, and because I agree with your point I will say you should not wean early without very close supervision from a medical professional, ie dietician/ paediatrician etc. You should also feel confident to cite the guidelines to them and feel happy with their replies before you begin early weaning.

DS2 was born a healthy 8lb at 42 weeks. I began breastfeeding (as I had DS1) and left hospital happy with how things were going. After two days it quickly became apparent there was a problem. This was put down to a tongue tie, unfortunately in our area these were not routinely corrected.

I did have alot of breastfeeding help from a very lovely midwive but eventually had to stop and start expressing etc. DS2 for an unknown (at that time) reason was unable to suck from a bottle as well. The feed would come down his nose and he also sufferred from reflux. In short we were in feeding hell. We had to feed all of his feeds via a cup or syringe. After four weeks I was mixed feeding and after eight formula only.

At twelve weeks after numerous chest infections he was admitted to hospital with bronchillitus. He was tube fed and was very ill. When we returned home we continued as before but now with inhalers etc.

He was admitted to hospital several more times untill eventually seriously ill with pnuemonia at seventeen/ eighteen weeks. As he was so thin (on 0.2nd centile) and so ill he was tested for cystic fibrosis and many other life limiting illnesses. Thankfully they were all negative. It was at this time we were advised by the hospital dietician and all of his medical team that early weaning alongside high calorie milk was necessary. We followed a particular diet that basically consisted of very high calorie meals. For the first fortnight of this he was in hospital and we were closely monitored.

For my baby he was in a cycle of not having the energy to suck, therfore not gaining weight, therfore not having the energy to suck etc etc.

He did start to gain weight and last year when he was four he was diagnosed with di-georges syndrome, which is a chromosome abnormality. We also found that for him it means a type of cleft palate, a comprimised immune system, poor hearing amongst other less serious things. Tbh it was a relief to get a diagnosis as I had always felt guilty about his chest problems possibly being down to stopping breast feeding, I now know that for him it was pre determined, before he was even born.

He is now settled on the twelvth centile and he follows a normal diet. His medication has been sorted and three weeks ago he had his palate repaired. I hope we haven't caused him any problems with his gut by weaning slightly earlier but firmly believe that it would have been more detrimental to not have iyswim.

Thankyou.Sorry you had so much worry, I hope it all works out for the best for you both.

Hi VS, I've been starting to wean my DS for 2 wees now (started at 16wks) on GPs advice. He sufferred badly with silent reflux which was helped by various medication, however he has never been a big milk drinker, possibly because of having had the reflux? he was born at 10.1lb but has struggled all the time to put on consistant amounts of weight. When visiting his GP (again!)he asked me if I had started to wean him, I said 'no' to which his reply was 'why not?!' - had been told by HV far too early. GP advised to start, saying that due to similar problems one of his children was also weaned early. DS loves the solids (though still struggling with tongue thrust)and it seems to have actually helped with his milk consumption, still on meds but it almost as though it has actually helped settle him a bit - at one point he was screaming so much he was burning off more calories than he was taking in, so even though i thought he was feeding ok he was actually losing weight. Glad i've started the weaning

Thanks beepbeep.

I spoke to someone yesterday who had to wean at about 3 months. Her DD totally refused milk, and water so she felt she had no other choice but was given absolutely no back-up from any HPs.
Have you felt fully supported medically?

Hi. My son has awful reflux and we were advised to wean him from as early as 12 weeks by his consultant paedeatrician. I didn't feel he was at all ready so we held off until he was 17 weeks by which point he was at least showing some interest in food.

We took it very slowly and gave him just baby rice for the first month or so - basically just to try and thicken the milk in his tummy a bit so it would stay in. He has been much less sick ever since we started.

His paedeatrician has been very helpful throughout but I have struggled with our local HVs and other mums (particularly on mnet) who have routinely berated me for breaching the 6 month guideline on weaning.

Hi, am currently having this debate with my GP. DS is only 16 weeks but has suffered with terrible reflux since about 3 weeks. His weight gain is not bad and he is excl. breast fed but he feeds almost every 90 mins day and night because he vomits so much of his feed and he becomes very distressed by the vomiting. It scares the life out of me because he gags and chokes and I am terrified he will inhale vomit.

We have been advised to consider early weaning on a gluten free diet of just baby rice with breast milk. No other food will be added untill 26 weeks.

He has already tried various 'thick' formulas and he has been on Infant Gaviscon for months. The theory being that he is likely to vomit less and it is probably less harmful than stuffing him full of more meds. We also had a review of our familt history for allergies and intolerances - there is no history of coeliacs or food intolerances.

We are back with the GP this week to decide if we are going to do this and I think it is likely we will but I am not happy about it. It just seems that we have no alternative.

ready2pop are the HVs aware that you're doing this on advice of a paed?
Are any of the babies that are being weaned showing ability to eat unaided? (such as loss of tongue thrust, ability to sit with minimum support, grasp food, chew, swallow?)

Hi VS,
My DS has no tongue thrust and sits pretty well. He does not chew but he swallows well.

I would not normally consider weaning my child so young - I would wait for 26 weeks but the choking is terrifying and I do not want to give my son even more medication.

I understand that. Completely.

SAEJ - your DS sounds just like mine was at that age.

He was put on Losec which stopped the pain of the reflux but like your son he was still being so sick that I was having to breastfed him every hour on a bad day, and right through the night too. Milk would regularly be running down his nose whilst he was still feeding and he would gag, cough and splutter constantly.

I was really reluctant to wean him so early but it honestly did help and he is much less sick on solids. He hardly ever throws up at all now, except after his last milk feed of the day which is always a big one.

Like you, we were advised to just give him baby rice and breastmilk and stuck with that until about 24 weeks, by which point he was doing so well with that and so obviously interested in other foods that we introduced pear too (with the approval of his dr).

I hope your DS starts improving soon. We were told that reflux usually peaks at around 4 months so hopefully you will be through the worst soon.

VS - I do always explain that we are just following his Dr's advice but to be hoenst the HV's near me seem to have just learnt a set of rules off by heart and get stumped if they can't make your baby fit that pattern.

My DS was fine with the process of eating fromt he start, although as we only did baby rice initially it wasn't that different too milk to be honest - very runny and easy to swallow. He had lost the tongue thrust by the time we started.

I must admit that reading the other early weaning thread on here makes me feel like a faliure.

I am very worried about putting my son at risk of long term health probs but it is such a difficult balance to strike and when I tell other mums they look at me like I am abusing my son or berate me as if I have considered weaning out of conveniance.

It is so hard.

SAEJ, If early weaning due to a medical problem then all you can do is weigh up the risks and see which is better for your child.

I'm a huge believer in 'Why risk it?' if your baby does not medically need feeding before 26weeks. It seems there are three groups of people who wean early.

One group who know nothing of the guidelines or the research behind them and are taking someone else's advice, be it medical or personal, a second group who do know a bit about the guidelines, yet still decide to wean their baby early with no medical reason or back-up and then the third group whose babies have a medical need to at the very least consider weaning early and then take the decision to do it or not and (hopefully) be helped to make the risks as little as possible.

I do volunteer work with surestart and we were talking yesterday about early weaning, the guidelines etc and that the people who are really hurting here are the ones who feel they are forced into weaning with little to no choice because of something like reflux or FTT, or in one of my colleagues cases, total refusal of milk feeds which is something that needs addressing, IMO, and HVs seem to be the worst for dishing out the guilt, which is causing people to avoid them and then not get the help they should be receiving because the HVs are thwarting it at the first attempt. (Have to say, not the HVs that I work with though)

I would agree with a lot of what you say about hv's VS. With us our hv did advise early weaning and then... nothing! If you are weaning early for medical reasons then it should be done under close supervision.

I felt very well supported by his hospital medical team, but tbh after his long spell in hospital I never took him to the hv again to be weighed. He was weighed monthly at the hospital before we would see his dietician.

If I was totally honest with all the information and more importantly with the diagnosis we now have early weaning may not have been necessary. For example he now has a daily antibiotic and will do for all of his childhood. This has made a massive difference. He would have had his palate repaired as a baby and not at five years old! But this is based on the knowledge that we and his doctors have now. They didn't know any of this back then iyswim.

DS2 was also a massive vomiter, all of the time with part digested feeds and he would also choke even when older on most things. He had his tonsills out and this has made a big difference to his ability to eat and drink.

hey vs. I was told to wean my lo at 22 weeks (16 wks adjusted) by the doctor, given the reason that because he was prem he would have low iron stores. When I quiered that the guidelines were 26 wks he said 'yes, but I weaned my own at 16wks and didn't wait until the 26 wks. I don't think there's any need to wait until 6 months'

Tbh I wasn't entirely happy with that thinking taht if he had low iron stores surely he should get supplements and he was on nutriprem 2 milk which contains more iron than ordinary milk, especially for prem babies.

So I left it for a few weeks. I think maybe I started at 24 wks corrected so not a big difference from the 26 wks and I was happy at that stage that ds was ready for it.

Sorry on re-reading that realised I've come across as a bit preachy. I certainly don't think there is anything wrong with anyone who weaned early because of a medical condition with the proper support.

I suppose the point I was trying to make was it seems a bit of a myth that you need to wean prem babies early.

DS had tongue thrust when i first started weaning and constantly tried to push the food into his mouth with his thumb, been at it for a couple of weeks now and the tongue thrust has improved a lot.

I have had no support from HV, but GP who recommended early weaning due to reflux has been great. DS has last jabs (4m) tomorrow and i'm dreading getting him weighed in front of health visitor, he was born large (10.1lb) but due to all the problems we've had has dropped down to 25th percentile, she always comments on this and makes me feel like a failure, I now don't weigh him as often as i used to and and actually go to another medical practice to use their weighing room (can use on your own) and update doc with weight when i see him.

That was another thing we discussed yesterday actually, weight loss/gain. The PCT within which the surestart centre is are trying to move away from weighing as much as possible and to actively discourage weighing regularly unless there is a worry. Id there a way you could weigh at the GPs if he needs to knwo the weight?

beepbeep if you are unable to avoid the health visitor weigh in tomorrow then maybe just tell her that GP is quite happy with your baby's growth etc.

I find it very sad that mothers feel like failures because of situations like these. I felt exactly the same, at one point he was fed via a ng tube for no other reason than he just wasn't feeding and I remember the feeling of failing very well. In fact this thread has bought it all back. He was five last month. I hadn't failed though and neither have you.

It does get better and I no longer feel that sinking bad parent feeling (not over this subject at least!)I can see now that I was doing my very, very best in extremely difficult circumstances. Not all babies fit the mould.

dc3 wiil be weaned early due to reflux at 17 weeks which seems strange to me as dd was weaned at 17 weeks and it was not early so I'm keeping fingers crossed it will do neither of them harmn but will ease the reflux

gothicmama, are you getting support with the weaning?

limited gp thinks it a good idea hv thinks I should carry on with meds - I have a while to think about it but to be honest he is in such pain even with meds ( which can cause other probs) I would wean earlier if I knew it would stop the pain.

So do you know about what to avoid to lower any risks it might carry? That;s something they really should be telling you.