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CarolineJ

Difficulty breastfeeding babies who are later found to be somewhere on the spectrum?

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No, no trouble at all, in fact he was the easiest of all mine.

 

But then he was what our Special Needs Health visitor called 'an angel baby'...he was very passive and just ate and slept...which is strange, considering he went on to have a co-morbid of ADHD...lull before the storm!!

 

Bid :)

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Yes, it was as though ds felt claustrophobic by being pressed up against me - he used to pull his head clear, grizzle a bit and would not settle. He did, however, take to bottles like a duck to water :)

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I had HUGE problems breastfeeding in the first six weeks. He just didn't seem to 'learn'. He was very fussy about positioning, any other distractions or changes in his routine. I remember sitting for hours trying to get him to feed. I know I was a first time mum and all that, but looking back it makes much more sense now. We stopped breastfeeding at 8 months when he discovered the bottle and completely refused to feed any other way My second, dd was an absolute doddle to feed and fed from birth, knowing exactly how to suckle and just found her way there.

 

Sue

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Did any mothers here have difficulty breastfeeding their babies who were later diagnosed with any of the ASDs?

 

YES!!!

 

DS1 was very slow and sleepy to begin with, but no jaundice or other reason. I had to keep flicking his ears/toes to wake him up. We both eventually got the hang of it and he had his last breast-feed at 15 months. He was dx with Asperger's at 7 and associated co-ordination difficulties.

 

DS2 was even worse. He was three weeks early but a healthy weight and I'd successfully fed DS1 so no one was worried - except me! He was incredibly difficult to get to latch on and gradually got sleepier and sleepier. After just a few days I was having to try and wake him up for feed until after a while I couldn't.

 

Well, to cut a long story short, he lost 22% of his birthweight in 10 days and had to go back to hospital to be tube-fed. The paed was astonished; he said that kind of dehydration was usually only seen in Third World countries. He spent 10 days in hospital, eventually coming out on his due date when I at last got him breast-feeding.

 

Breast-feeding him was a labour of love (blisters, ow, will spare you the details) - basically he couldn't do it very well. He also had his last feed at 15 months. He still finds chewing/drinking from a cup etc awkward, and he's a very fussy eater. He was dx with ASD at 4 and is very dyspraxic.

 

DS3 arrived and practically crawled up me to get at my boobs, latched on and was away. no probs feeding, then or today. Bizarrely, I had mastitis once or twice with the others but with this one I had it every month. I gave up feeding him at about 10 months; I couldn't bear the mastitis any longer!

 

DS2 was 'in the system' from birth because of his dehydration; there was some concern it may have caused brain damage. With hindsight I'm convinced that it's the autism that was the cause of the feeding difficulty, not the other way round. But it still took 4 years to dx him...

 

CarolineJ, what's your story?

 

Lizzie xx

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I loved the breastfeeding and did it until J grew enough nashers that he felt was halerous to bite me, then just after I was very reluctant, he had almost weened off the breastmilk by then which was around 14 months, but I loved the closeness, the pure natures way of feeding your baby, and I think it gave us a really special bond, and I would breastfeed again, I had difficulties in the first 2 weeks, by gum was it painful, the soreness was very raw and I did think how can I do this but once the latching was practice it was much better, he seemed to feed from one side the most though, I remember feeling rather full in one breast and hoping he would feed from it soon but he preferred to be on one side mostly, I remember trying to get him awake because when you breastfeed and the milk is ready it can be really painful, I didnt have any difficulties and if he hadnt of grown teeth I would of been happy to let him feed until he was two, J didnt eat solids until 8 months as he had dreadful colic and I read that keeping the diet to breastfood as long as possible was better for the digestive system and I enjoyed every minuet breastfeeding and I was happy it lasted a good year as I really didnt think I would of done it for that long in the beginning, For me it was a positive experience.

 

JsMum

Edited by JsMum

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Hi Caroline,

 

I didn't breastfeed my eldest daughter (14yrs ASD) but she struggled to bottle feed or take any type of fluids - could only take an ounce or less at a time of milk and had to be constantly encouraged by tickling under her chin and would only take water from a teaspoon occasionally - as was sick after practically every feed. Was admitted to hospital a few times when she was little for dehydration and her immune system was extremely low for about the first 2 years (the Paed. did regular blood tests which showed IGG levels or something similar!! sp!).

 

Because of the problems with my older daughter I vowed to try breastfeeding on my youngest (5yrs NT) to see if it helped and was told by the midwives to give up after about 10 days - she just couldn't seem to latch on and then I had severe mastitis (both!!) - it made me feel very depressed that I couldn't provide something so natural to my little one and that she'd be as ill as my eldest had been.

 

Take care,

Jb

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Had a lot of difficulties with DS1 in the first weeks. He had a small mouth and trouble latching. He also had bad reflux which made feeds hellish until he was on treatment. In retrospect feeding wasn't instinctive. He'd turn his head away from my body when he wanted to feed which was in the direction of his last feed. We thought this was a little odd but endearing that he 'remembered' but now I think he didn't instinctively know what to do so tried to compensate by his memory :rolleyes: something he still does now. After the first few months feeding got easier and it was the only time I could really enjoy some cuddles and closeness with him :). As a toddler he was rather breast obsessed and loved to feed, was a real source of comfort for him and probably a multisensory experience!! I weaned him at 2.5 years old when I was pg with DS2 and it was too painful though if DS1 had had his way he would have continued to feed indefinitely!

 

Feeding was a different experience with DS2 (NTish). He came out having read the book, knew instinctively what to do but he was never as emotionally attached to my boobs. Maybe because he was quite happy to be held or cuddle me whereas with DS1 it was a conduit for physical contact. After 18 mths he had enough and rejected me in favour of a bottle of rice milk LOL!

 

My one regret is giving DS1 formula when he was 3 mths old. He was a terrible sleeper so he had the odd bottle of formula to see if it would help. It was around this age that we noticed his development slowing. Since discovered that casein affects his behaviour and aspects of his development, so much better off dairy and I have wondered whether I inadvertantly fried his brain giving him formula at that crucial time :tearful: On a more academic note I have wondered whether there is any effect of formula or dairy in the diet of babies who subsequently turn out to be intolerant to it though don't think there is any evidence that ASD is more common in formula fed babies.

 

Lx

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I breast fed ds#1 (AS / HFA) until he was 13 months at which point he transferred fairly easily to a bottle and cows milk.

 

Ds#2 (NT but I have some queries) was much trickier to feed, he was on and off many times instead of having a proper feed. He did have a tongue tie though which might explain that. He was obsessed with breastfeeding and surivied on a teeny amount of solid food until he was finally (with HUGE protest!) weaned at 2 years 3 months.

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YES!!!

 

It was as if he just didn't have the patience... he seemed to know what it was all about, and fussed to get latched on, but wanted it to happen instantly. He would end up screaming and going rigid... and I would end up feeling such a failure. I tried to explain to the midwife that it wasn't working, but she said to just keep trying - even though she had spent hours trying to latch him on for me... By the end of the second week, he'd lost 25% of his birth weight, and we admitted defeat. I expressed for as long as I could, then moved him onto formula. I blamed myself because he was my first.

The experience was so awful that I didn't even attempt it with my twinkles.

Interesting thread, this one.... I hadn't even thought it may have been related to his AS.

Funny though, he was a nightmare to feed once he was weaned: when he wasn't insisting on doing it for himself and ending up feeding his eye and blaming me, DH was having to perform a cabaret act behind me to distract him from the evil task of eating... And all meals had to start with pureed carrot or he wasn't eating anything at all.

Then he gave up milk entirely at 7 months but refused to drink water or juice.... I ended up feeding him watery fruit purees for fluid and custard for calcium.

Looking back, it's amazing he grew at all, lol.

Edited by krystaltps

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JB from what you described it shows you really gave it a good go, 10 days is amazing, especially in the early days, I nearly gave up too as it was unbearable, luckily J did learn to latch on and it took him a while, it isnt anyones fault that it didnt work, the mastitus probably happened because in the first week the milk is thick and it was blocking up because your baby didnt get the milk as it was difficult to get her to latch, I think you did really well, mastatis is really painful in breastfeeding, its natures way but it doesnt mean you failed because you gave it a go, and gave it a lot longer than most but I am annoyed that the Midwives suggested you stop, did they assist in positioning your baby, holding the baby in the right place takes practice and skilled midwives can support this, I know the MWs suggested to stop because of the latching and the mastitus but I dont know If I would of suggested you give up so it could be that there wasnt enough early support, I absaloutly wouldnt blame yourself, you did your best and had a go.

 

JsMum

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hi,

yes indeed - although when DS was born he had severe jaundice so that interfered with feeding too,

buy, yes, he was a dredfull 'sucker' had trouble 'latching on' and lost weight VERY quickly.

 

only managed to breast feed for 2 weeks as he lost so much weight !

mel xx

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I know the MWs suggested to stop because of the latching and the mastitus but I dont know If I would of suggested you give up so it could be that there wasnt enough early support, I absaloutly wouldnt blame yourself, you did your best and had a go.

JsMum

 

Thanks JsMum - to be honest I think it was because I so desperately wanted to do it because I was so worried my littlest one would have all the problems my eldest did that it made me feel such a failure.

 

The midwives did try and help as much as they could and they gave me some kind of patches to put on - with honey in them to help - but because the feeding didn't seem to satisfy her she wanted feeding nearly every hour which resulted in her taking more blood that milk and then she also had like 'mini periods' because of my hormones as well (which I'd never heard of before!!!) - for the last few day we also tried expressing some from the 'better one' (if you know what I mean) to give in between bottle feeds to try and carry it on - but even expressing it resulted in blood too. She was such a big baby 8lb13oz compared to my eldest daughter who was exactly 6lbs and started to lose more weight than normal so don't know whether all that contributed to their advice.

 

Take care,

Jb

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My ds took to breast feeding very well and I only stopped at around 9 months due to teeth and him biting me he then took to bottle very well but from the day we said goodbye to bottle he has never had milk again! tried cups,straws,choc milk etc but he thiks milk is from baby bottle or breast.

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Yes for me too, I struggled with L for about a week which will live in my memory as a complete nightmare - exactly 19 years ago now. :unsure: Nothing seemed to be instinctive at all - for either of us and I was tense miserable and sore, dh paced the floor with her screaming through a whole night because I just couldn't bear to try it any more. Until a wonderful non judgemental midwife convinced me that stopping was no big deal and I was still an OK parent.

 

Ds 8 years later (NT) was a breeze in comparison seemed to know exactly what to do, and breastfed for 17 months.

 

It would be interesting to see if there is some link with AS. But there might be another factor - mother's lack of experience? I've noticed on this thread that most of the babies who had difficulty were first or only children - everything is more difficult first time around. Although I was determined to prove I could breastfeed and cancel out my previous "failure" I know when ds was born I was very laid back about the whole business. I had the formula and bottles on standby just in case and because I knew I could stop any time - I kept going.

 

I know this is heresy but I actually hated breastfeeding. :wacko: Having successfully done both breast and bottle, I would have chosen to bottlefeed a third, had there been one, no question.

 

K x

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Wow! This is really interesting!

 

CarolineJ, what's your story?

 

I have four children. Lily is now nine and she was breastfed. I had trouble at first with sore, cracked nipples that I can now recognise as poor attachment, but otherwise everything was fine! She refused at 9 months and I found out I was expecting again a few days later.

 

Bim is my second child. I expected to slot straight back into breastfeeding again. He was born three weeks early, weighing 8lbs 5oz. He had the cord around his neck and was not a great colour. I had a really quick labour, but he slept a lot in the first few days. This soon changed. Feeding became almost a constant activity. He was like a velcro baby. It felt like I was feeding him 20 hours out of 24. He was very fussy at the breast and needed to be held in place. Bim was very fractious and we tried so many things to keep him soothed. Nothing worked. I remember trying to wedge a dummy in his mouth, with a towel up against his face, in the swing. He couldn't keep a dummy in. I had him in a sling, in front of the washing machine, in front of the TV, tried letting him sleep in a beanbag - at night time! :o I remember having love bites on my boobs when I'd wake in the morning. I don't know how I managed to breastfeed him as long as I did (11 months - it got so sore when I was pg again) and life with him was very, very difficult. He did end up with what they called breastmilk jaundice at around 4 weeks and we later found he had a tongue-tie (of which the frenulum stretched itself), so we had a rough time. I don't remember very much of his first year at all, so I'm glad I have photos and video.

 

Ruby, who is now 6, was a dream to feed. From 3 weeks, she had chronic bronchiolitis from being RSV positive, but even then, she could feed ok and continued to breastfed till she was past two.

 

Blue is 7 months and though she feeds well, I keep getting blocked ducts. I think my boobs are getting too old for this lark! lol

 

Though I wouldn't wish what we went through with Bim on anyone else, it's comforting to know we weren't alone. I've had lots of "a-ha!" moments here already!

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I know this is heresy but I actually hated breastfeeding. :wacko: Having successfully done both breast and bottle, I would have chosen to bottlefeed a third, had there been one, no question.

 

Kathryn, I hated it too. I think there is an awful lot of pressure put on new mums and terrible feelings of guilt put upon them if they 'fail' at breastfeeding. I remember giving him his first bottled at 8 weeks after I'd struggled on and suffered mastitis three times and sobbing as he sucked away at it and feeling a terrible failure. My friend didn't even try to breastfeed, she put her baby straight onto the bottle and I wish I had had the strength to do that too really, it would have avoided a whole lot of heartache and guilt which has never really left me. :tearful:

 

Jay was very sleepy for the first two weeks and would just drop to sleep as soon as he had had one suck. I had midwives surrounding me poking and flicking at him to try and wake him up during my attempts to feed him, but he was just exhausted. We had to stay in hospital for a week until he'd got the hang of it more, as there were concerns he wasn't getting enough. After a couple of weeks he did get the hang of it, but I was exhausted and anaemic and couldn't cope anymore so we weened him onto the bottle and then DH took over the nighttime feeds and I started to feel a bit better. Worst two months of my life. :(

 

~ Mel ~

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It took J a couple of days to learn how to latch on properly, up till then he just sucked and sucked but wasn't getting much milk so he went on forever (I remember one tortuous 11 hour episode). I went through the cracked nipple stage but persevered because J obviously loved it. Breastfeeding was the only time he would snuggle in, he hated that closeness at any other time and wouldn't be hugged to stop him crying etc.

 

I was like Associated Dairies with the amount of milk I produced, could have fed the street. We had a freezer full of the stuff, used it to mix in purees when we weaned him, honestly had more than I knew what to do with. There was no way I could feed him discreetly because as soon as I loosened my bra the milk shot six feet across the room - I had to find myself somewhere private and strip off. J stopped breastfeeding by himself at 8.5 months - everything related to sucking just disappeared overnight, he wouldn't have a bottle or dummy either (though we hadn't used one often anyway). He just went straight on to sippy cups at that point.

 

I loved breastfeeding, really missed it when he stopped, but I felt that the decision was his to make and he was ready to move on.

 

Karen

x

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I was chatting to my mum about this last night. She said that she tried to breastfeed me but I didn't really take to it. I was born 5 weeks early and lost a lot of weight in the first few weeks so had to go straight to bottle. Even after going on the bottle the health visitor would accuse my parents of starving me

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I have friends with SN kids (difficulties other than ASD) and I know they have said that the SN kids were hard to feed as babies and that their NT kids fed straightaway, so perhaps problems feeding newborns/babies is not directly caused by ASD per se but rather by SN in a broader sense?

Edited by Tjololo

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Wow ? this is a really interesting topic, and one that I have often wondered about.

 

DD1 was difficult to breastfeed, but with a lot of perseverance I managed to feed her for about 3 months. I did not enjoy it, but kept up with it as long as possible because I was made to think that I should.

 

When I had Luke, I was determined to make a better job of breast feeding him. However, when I tried to breast feed him he was having none of it. He would latch on ok, but he had absolutely no natural suckling action. He just lay there. Over the first 2 or 3 days he did not feed at all, and got gradually more and more restless. As we were still in hospital (I had a caesarean) I got plenty of support, bit no one could get him to suck. In the end he was given a bottle with a large hole in the teat. This meant that the milk just poured in to his mouth. Like this he was fine. He could manage to swallow it, just not suck. Once we were home, I had another try, but could still not get him to suck, so we had to go out and get bottles, formula and teats with big holes in. Unfortunately the teats you could buy did not have big enough holes ? we had to get a sterile pin and make them bigger so that the milk just flowed in to his mouth.

 

Interestingly enough, we had the same issue with a dummy. He liked having a dummy in his mouth, but he never actually sucked on it. It just stayed in his mouth for a while, and then fell out.

 

I have often wondered if this was the first indication of his problems.

 

Linda

x

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It would be interesting to see if there is some link with AS. But there might be another factor - mother's lack of experience? I've noticed on this thread that most of the babies who had difficulty were first or only children - everything is more difficult first time around. Although I was determined to prove I could breastfeed and cancel out my previous "failure" I know when ds was born I was very laid back about the whole business. I had the formula and bottles on standby just in case and because I knew I could stop any time - I kept going.

K x

 

Sadly not for me :( . All the proffessionals assumed that everything would be fine for me second time round, because I knew what I was doing, but sadly no one actually listened to what I was saying. I was just left to get on with it.

 

When we got home from hospital (bearing in mind that DS2 had been diagnosed with a hole in the heart, had been to Harefield for a scan and we'd been told he'd need surgery within the year), we were just left to ourselves. My comments that he feels very light, he hasn't done a poo yet, his nappies are still dry, just fell on deaf ears. The midwives convinced me that I knew wht I was doing so all was fine. They even weighed him with their little 'stork' scales, said 'oh that's not right', and readjusted them so they read what they wanted to read.

 

It wasn;t until the HV turned up on day 10 to weigh him on her electric scales that things changed. By the time she arrived, I couldn't wake him at all. I was beside myself. She thought her scales were wrong, too, so put in new batteries, but he'd still lost masses of weight. She packed me off to the doctor, who sent me home saying he just had a cold.

 

Thankfully this lovely HV (not my usual one!) phoned me at home that eve to ask what the doc had said and was appalled that we had been sent home. She advised us to get down to A&E. Just then a panick-stricken midwife arrived, saw that he was going blue at the edges, and rang an ambulance. We all thought his heart was failing because of the hole. I can't describe the feeling of looking at your baby and being convinced that he's dying in your arms.

 

When we got to the hospital, the docs took ages trying to find a vein and enough blood to test. Initially he was on the wrong kind of drip and swelled up like a balloon, but they soon sorted it out. Then we had 10 days in hosp with him being tube-fed and me madly trying to express to get my milk going again. Blood, sweat and tears.

 

I remember the horrible sense of failure I had when I ran out of milk and he had to have formula. I got over it by the time DS3 came around, happily gave him formula when he was six months!

 

I got my milk back again, thankfully - I was desperate to breast-feed because at the time I felt it was the best thing for him, given he'd had such a bad start and was facing surgery later too.

 

Bizarrely, the dehydrtion may have helped his heart at that early stage, because there was no excess fluid to interfere with his heart! Anyway, at about 8months we found that the heart was spontaneously starting regrowth around the hole and no surgery was needed. Last month we learnt that the hole is now very small and may close on its own within the next few years. So, a total red herring!

 

In my opinion, the feeding difficulty was (and still is) associated with the autism, for DS1 too. The suck-swallow-breath reflex is one of the first that babies have, but for some it doesn't happen smoothly and can have lasting effects throughout life.

 

Phew, it always wipes me out telling that little tale! Off for a restorative cuppa now.

 

Lizzie xx

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No. DS1 (AS/ADHD) took to B/F really well and also took bottles really well, with no confusion or refusal. He was a pig from day 1 and fed every 2-3 hrs. I quit B/F when he was 6 mths as he kept biting me which was fine when he had no teeth(but still hurt), but not with a tooth and he didn't learn from my responses that I didn't like it (DD did, she only bit me once). Our Problems came when trying to ween him onto lumpy solids and finger foods!! DD B/F really well and so did DS2, but he did find it very difficult to latch on for the 1st 3 weeks or so (still unsure as to whether he has ASD). Both DD and DS2 refused bottles until they were completely weened from B/F.

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don't get me started! With my dd she refused to latch on and after 3 days I switched to the bottle because she was becoming jaundiced due to dehydration. DS1, fed well but then I got flu and had to stop! DS2 Had a tongue tie so struggled for a month until he became jaundiced due to dehydration and again had to put him on a bottle. I even hired one of those industrial pumps to see if I could feed him breast milk from a bottle but I only ever produced an ounce at a time... :unsure:

 

If I could go back to when they were babies, I'd put them all straight onto bottles and cut out all the grief and guilt I went through trying, and failing, to breast feed.

 

Flora

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Hi Caroline your thread struck a chord with me too.

 

Difficulties with breastfeeding - Yes! very much so.

And no, he wasn't my first or even second child.

 

I was expecting it to be a doddle but he was just like you describe, feeding 20 hours out of 24.

he's dyspraxic now, so i wonder if he just couldn't get astrong enough suck. I used to be aching for him to really latch on hard, but seemed to nibble gently instead.

 

The milk wasn't as much there as a result, so I never really felt he'd had a good strong feed. He was very unsettled and it was a really frustrating, exhausting time. It drove me crackers and went on for about six months. he took to bottles Ok after that, suppose it was easier to get the milk out.

 

Glad it's going better with Blue

 

take care,

love Sarah

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Did any mothers here have difficulty breastfeeding their babies who were later diagnosed with any of the ASDs?

 

Caroline, hope I get this right as I'm a 1st time poster and struggling to become computer literate.

Huge difficulties. Dd wouldn't latch on indeed didn't want any sort of closeness, went rigid and persisted in turning her face away. Hospital wanted to drip feed her as blood sugar levels dropping but I was adamant I would succeed. For 36 hrs( ?_ a long time ago ) I had to try feeding her hourly .Did eventually succeed and no trouble after that but possibly I was just lucky? Did enjoy feeding elder child and felt that need with DD too. Didn't know others experienced probs. I'm learning a lot.

 

Love Sadie

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I had one I did not breast feed, my eldest son. My younger 2 both dx with an ASD were breast fed. My youngest son, I was advised to give up after 10 days after he went from 7lbs 4 to 6lb 12 and was not gaining weight. He got frustrated and I don't think he was getting enough despite me having plenty there.

 

My daughter, again, I breast fed. She was 9lbs 1oz at birth and never lost an ounce. However she was constantly feeding and hungry and my nipples ended up with blisters, I also got mastitis. The mid-wife advised me to try shields, I did but it still hurt! I then introduced bottles to alternate so I could give my nipples a break. I tried expressing with little success. I had no choice but to give her bottles in the end. When she went onto bottles she was downing 9oz bottles every hour. She was insatiable.

 

So yes had big problems with breastfeeding, but both different!

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I didn't breast feed with T but I did with my middle child. I had an awful time feeding him though, he could only take an oz at a time and would always projectile vomit if not winded after the one oz.

 

Loads of feeding problems, even solids which he used to choke on if they weren't very runny.

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I had difficulties,J did not take to it and I found it difficult too, although I would have preferred too as I believe it is healthier,of course I was later dx with asd too so how much of the problem is mine also I wonder, disliking the contact and pain and finding it very difficult.

 

J projectile vomited every feed for a whole year and mybmother said I did the same thing, and then it just stopped suddenly after about a year. Very strange I've always wondered whether that is connected somehow.

Edited by florrie

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Mine little monkey was born eight weeks early - so he fed through a tube in his nose for quite a while :hypno:

 

I expressed and fed him via the tube first, then a prem bottle. He wouldn't have been strong enough to breastfeed. I carried on expressing and organising bottles for six months - then i could take it ne' more!!

 

He was never a 'snuggly' feeder, liking to lay facing away from me or along my lap, with his feet touching my tummy and his head on my knees.

 

He did like to be held though, just not when he had a bottle :wub: . Obviously, eating was far more important than cuddles! :lol::rolleyes: (typical man............... :o:devil: )

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He was never a 'snuggly' feeder, liking to lay facing away from me or along my lap, with his feet touching my tummy and his head on my knees.

 

 

Haha, sorry, just for a minute there, I thought, WHOA, how on earth did she manage that!! My mind was boggling with all sorts of images! :hypno: Then I remembered you were feeding from a bottle! :lol:

 

~ Mel ~

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Haha, sorry, just for a minute there, I thought, WHOA, how on earth did she manage that!! My mind was boggling with all sorts of images! :hypno: Then I remembered you were feeding from a bottle! :lol:

 

~ Mel ~

 

:lol::lol:

 

That was brilliant!

 

K x

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Hi Matthew wouldn't bf either. well none of mine did really but the eldest and youngest had dummys and Matthew just didn't even know how to suck the thing even though he was bottle fed!

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