Had a horrible, horrible day - need some tiktok and hunkerisms please. (Huuuuge post)

[verylittlecarrot]

I've had a wretched day following receipt of a letter from the paediatrician. Distilled down, it basically reduces dd down to two things; "failing to thrive" and "inadequate calorie intake". It also claims she has some delay in her motor development - ascribed to the failure to thrive - which he hopes would "pick up once her nutrition improves". I am surprised to hear this and don't agree with it.

Other possible causes have been ruled out (thyroid, heart, absorption problems)

The formerly supportive bfc who referred me (at my request) apparently felt a little miffed that I had not followed one particular piece of her advice, namely to express several times a day in addition to feeding on demand. (I attempted this for a while but abandoned it for several reasons, both practical and theoretical, in favour of just putting the baby to the breast at very frequent intervals.) This rejection of her advice has been noted in the letter. I rang the bfc to find out what this was about and challenged her, as she has previously told me I have "gallons of milk" and that supply isn't a problem. She seems less certain about my supply now, apparently.

The letter has a lot more to it and doesn't present me in a great light either. The paed wants to refer us on to a dietician.

There's so much I want to dispute in the letter - the diagnosis, the apparent motor delays, the conclusion that it is my bf to blame, the advice to wean her earlier rather than later (on baby rice!), the assumptions that I take random advice off the internet and lack the necessary intelligence and discretion to research properly info salient to dd's specific circumstances.

But actually, I've had enough. Spent the whole day in tears. I think I've run out of fight.

It's almost worse having gained the knowledge I have, from MN, because in RL you just sound like a non-compliant nutter with odd ideas and bizarre principles. And there isn't a tiktok or hunker in my neck of the woods to back me up, sadly.

So here are my questions

If I were to introduce a high cal formula at this stage, after 6 months of excl bf, perhaps a bottle a day, what effect might it have on my supply? (I already know what it will do to my psyche) Assuming that the hcps are correct, and for some reason I have an inadequate or fragile supply.

Is this likely to damage my long term plans to continue bf until she self weans?

Are there any risks to dd in doing this, vs carrying on bf (and weaning obv)

Is there a formal, diagnostic procedure to confirm that I have low supply? No-one has examined me ever in all of this, it's just a conclusion that has been reached through elimination of other causes.

Taking into account a steady and consistent weight GAIN from day 2 of her wee life, starting at 3 oz a week and now slowing to about 1 oz a week, does this sort of growth pattern seem consistent with low supply? She gained better in the beginning than she does now - might my supply be worse than it was?

If so, is it too late to fix things now?

I still feed every two hours roughly, sometimes more, both sides, and take domperidone (although I stopped for a few days last week as I honestly didn't feel it was making any difference, but have started again in desperation)

Does it make any difference that I still get engorged if she goes 4 hours between feeds at night occasionally? Does this mean anything?

I'm grasping at straws, anything to avoid admitting that my body has provided "inadequate calorie intake", which has caused motor development delays. The very real fear that I might have harmed my baby has been writen down in black and white today. It is sickening to read it.

I'm rambling and incoherent because I'm so upset. But I'm losing my nerve against the pressure. I need to consider formula, if it will help dd catch up some of the weight she needs so badly. I can't forgive myself for causing her problems. I feel like a defective failure. I tried to do everything I was supposed to do and it just hasn't worked.

VLC, sorry, meant to reply donkey's years ago but didn't get around to it been working ft etc....

Anyway.

I'm really suspicious of the suggestions she's somehow behind in her development. All babies develop at such different rates that I would have thought it was almost impossible to say they should be doing X by Y date and Z by Y+1 date etc. You know my ds could sit for short periods unaided at 3.5 months.... but at 9.5 months he can still barely crawl! Also I have met babycarrot and I don't recall any head lag and that was a month or so ago!

If - and only if - he is right and she is just not getting enough calories surely lots of bf and very high calorie foods would be the answer, rather than high calorie formula. But I'm with you on that, I like to know exactly where everything in baby food comes from. I know you really really want to do bkw but if necessary you could cheat a bit and spoon feed her lots of pureed high calorie foods and give her things like cheese, banana etc. as finger foods.

And always give foods after bf to ensure she is getting as much milk as she needs and the food is like a "top up". I'm not sure I'm explaining that properly but ykwim.

VLC you are a good Mum and you are doing your absolute best for your daughter. You have not had access to much good solid expert rl support at all and so of course you have to take a lot of your information from the internet; it doesn't make you a bad Mum, in fact the opposite as you're trying to find out what - if anything - is wrong. And you're very intelligent and interpret it as best as you possibly can.

What you need is a paed who is up-to-date with all the latest bf and weaning research - who knows even more than you do - and knows how to interpret it regarding your baby's needs. I also wondered if you had thought of hiring a private lactation consultant, or trying one of the other organsations to speak to a different bfc?

I really feel for you VLC. I imagine it's stopping you from enjoying your baby, you have my every sympathy and you know that you are always welcome round at my house (when I'm not in work) for a brew and a hug.

Hey RTP, thanks for the reply

I videoed her complete absence of headlag yesterday half a dozen times to email to the paed. Talk about paranoid. She doesn't have it though! She can sit whilst holding on to my fingers too. He is just searching, I think.

I am resorting to a bit of spoonfeeding as well as fingerfoods, although babycarrot has every intention of feeding herself (check out the new BLW photos on my profile).

She seems to be learning quite fast, actually, and demolished most of a pear quite effectively, so the swallowing thing is improving.

I think I need to write a letter challenging the diagnosis, and correcting the inaccuracies, with references to relevant papers. And then informing them that we will be seeking a second opinion, probably privately. (whether we do or not remains to be seen). what I want is to get out of the NHS conveyer belt completely.

I know I've read a few too many threads recently about the terrifying powers of social services, but my biggest fear is that by being such a "non-compliant" mum, they will not be content to leave us be.

I almost regret seeing this paed, but I needed to rule out anything insidious. I wish I could have just done that and then walked away without all of this hassle following.

Poo.

thankyou mommafeelgood!

VLC - I've only just seen this. I'm so sorry you are going through this.

I've only read the thread briefly, but was wondering if anyone has mentioned your nutrient absorption? It was suggested to me that I might have a candida infection in my stomach, which could possibly have resulted in lo not getting the nutrients she needed when she was 'failing to thrive'. You could take supplements of that live-bacteria stuff (you know, that is in yogurt, or something from the health food shop in tablet form). Perhaps get yourself checked out?

Just a thought. Wish I had more helpful advice to give!

vlc, my sympathies, it's AWFUL when you see those letters, isn't it? let me tell you what happened to me...

after i had my first ectopic pregnancy, i was understandably blue. the consultant who had treated me had given DH his card and said 'blah blah blah if there's anything you need, call.'

so dh, not being someone who had ever had a miserable wife before, bless him, DID call one day, to ask if it was normal for someone to be bursting into tears a month afterwards. (as it happens, i was still technically pregnant at that poiint so my hormones were all over the place).

now, the doc said 'have you ever known her to be like this before?'. 'no'
'has she ever had someone die before?
'yes, her dad, before i knew her'
'and how did she respond to that death?'
'well, as i say i didn't know her then but i presume she didn't take it well. she certainly loved him and still talks about him'.
'oh, okay. well, i don't think there's really anything you can do except be there and listen etc etc etc'

okay? so conversation over, you'd think.

wrong.

a month later i went to my GP to take a letter about the fact that i'd been discharged from the hospital as my hormone levels had dropped to non-pg status. he seemed unusually concerned about me and took me into his room for an impromptu appointment and lots of questions about my mental health, whether i'd felt like harming myself etc. most weird.

it turned out, when i asked the GP what the hell he wass talking about, that on the strength of what dh had said, my arrogant COCKSUCKER of a consultant (one of those caring ones who puts your hand in his and tells you he's sorry) had just that week sent a letter warning my GP that i might commit suicide because i had a track record in becoming unhinged, having been depressed over the death of my father. (this was never the case, i was upset but never depressed.)
also, because dh had said that i was on the EPT website a lot (i was, it was brilliant) he wrote that i wsa becoming dependent on websites and losing touch with reality.

he had just made it up, the little fucker, because he never expected me to see the letter. i was SO UPSET, i felt like people had been talking about me behind my back, like i was being judged and found wanting for doiing my best to get over something quite horrible etc etc etc.

fortunately, dh was livid and we both demanded a meeting with him and a letter of apology and a retraction/explanation of how he had come to his 'diagnosis'. had he not complied we would certainly have made an official complaint. i really loathe that man. (actually, he had to treat me for my 2nd ep and lied about some sodding test results as well, so i did complain about him in the end).

ANYWAY, that was epic and quite something to get off my chest, i tell you. i do know it feels shit to see what they write, so i'm passing on my heartfelt empathy.

the rest of the stuff, you'll get there, you know she's wee but fine. cashew nut butter, avocado oil, flax oil, fling 'em in everything she eats. good luck.

lol, i'm afraid i killed your thread, vlc. sorry. i hope you're feeling a bit more like it now.

OMG Aitch

I felt sick reading what you wrote, with that lurch of recognition. That feeling of frustration when an untrue version of events is being passed around as the truth. Ugh. You did incredibly well to challenge such a tosser and get a retraction. I just can't bear the arrogance that allows such people to feel entitled to summarise one's life in such hideously untrue words.

Thanks for sharing that. Extremely brave of you and probably horrible to relive it again.

I haven't quite decided what to do yet. DD has actually put a smidge more weight on than usual this week, but I daren't get excited as one pooey nappy will put paid to that gain. Still, the girl is getting used to BLW, and I'm er, 'helping' her with fromage frais etc. (check out BLW profile pics). DH attempted porridge pancakes today. We await the verdict tomorrow.

Actually, I believe she may be pooing as I type. Better go...

do whatever it takes to make every morsel count, calorie-wise, so make those porridge pancakes up with double cream if she likes them. wasn't there a thread about this recently, a woman whose wee girl has CF? she got some good tips, i thought.

thanks for knowing how it felt to see that letter, too, it is awful and the very thought of it remaining unchallenged on my record was unbearable. personally i think you should write to the doc to say that you think he's picked you up wrongly on a few things, so that gets put into your notes as well. keep it helpful, because after all you both have the same aim in mind. and drop the HV in it if necessary. he might be one of the 'nice guys' but give them a tape recorder and a secretary and their little mini-Colombos come out and it's all about solving the mystery in as pat a manner as possible.

Aitch that is awful you poor thing!!

VLC I have done what I said I would and will pick up the answers if there are any tomorrow.

VLC - I don't really have anything to add but couldn't leave the thread without offering you some support. My DD1 was a little scawny thing, fed for oh all of about 10 minutes from one side only from the word go, never cried for food I had to rememebr to feed her every 3 hours, slept through the night 8-8 at about 9 weeks. I got the "wean her early" thing too. She started solids fine refused a spoon straight away and was BLW without me knowing what BLW was then. She is 3 1/2 now still a really skinny little thing but she's as bright as a button.

You hang on in there you are doing a fantastic job I'm sure in a couple of months she will be on 3 meals a day and that as well as your milk will be just fine.

VLC, I hadnt seen this until now and just wanted to say I'm sure what you're doing is right, you know the facts as it were about breastfeeding and dense calories, fact is some babies are smaller than others, would a doctor see a woman of 5foot and a size six and tell someone to give her formula? I doubt it, the same can go for babies.
As long as you feel satsified that her hunger is being dealt with and that she is thriving in every way she needs to then try not to worry.

Thanks Foxy, RTP, sweetkitty

Today is a day when I know she's fine, and I could merrily tell the busybody doctors where to go. I wish I did't have the wobbly days where I have doubts. Such is life! It is reassuring to hear people's similar stories, esp with happy endings!

RTP, thank you so much. What do you reckon to the excelmongous geekiness that is me?

[spod emoticon]

...and thanks VS (x posted)

She really is the most vivacious wee thing, so full of energy. You couldn't imagine a more "thrivey" baby in general wellbeing.

I've been so concerned about the headlag that I've made her sit up a zillion times over the last couple of days. She now anticipates it and when I count "1-2-3 sit up", she has braced herself on 2 and pulled herself up to sitting already (no head lag of course!)

vlc, am quite new to this board but sounds like you have had a horrid time. My daughter is an ex 27 week premmie (now 2 and very well) so we have been no stranger to various paeds but have never had letters sent without us being copied in.

She was exclusively bf to 6 months of age, during most of which time she was on the 9th centile, gaining steadily but small. Amazingly (given what I have since found out) no hv we ever saw suggested topping up: in fact when she was about 5 months (and a not exactly whopping 11lbs) we went to monthly weigh-ins.

Her weight gain really got going once we started solids - banana and avocade puree was a big, high calorie hit.

As for development: again, from what I know of prems I think that although there may be earlier indications of issues, you don't tend to get very clear diagnoses of real developmental problems until more like two years of age.

Given our experience of the healthcare system, I would be inclined to accept the referral and follow-up, if only to keep the system happy iyswim. But by all means challenge any diagnosis if you don't agree.

Take care

You might also want to try posting on one of the BLISS messageboards as I know there are a few paents there whose children are under the care of a dietician who may be able to share their experiences.

VLC - have you considered getting a second opinion? Might be worth looking into.

I've just been looking at your pics. She is utterly adorable.

From a healthcare insider point of view I second Aitch's idea of writing a letter correcting any inaccuracy.

1. They will be obliged to put it in the file and this might help stop future people taking it as fact. (Things written in letters have an unfortunate tendency to 'become fact' and get dredged up at any future contact)
2. He will know that you have seen it, hopefully be suitably chastened and perhaps think about changing his practice in future.
3. You might feel better less powerless against the system sort of thing.

Hi

I just wanted to add that my DD was a very slow gainer too, I did give in and top up for a while before realising that it was making absolutely no difference to her weight gain so I stopped that. Mine was a high calorie formula too, but it just made her feel very full and miss bfeeds.

We weaned at 6mo, I stuffed her full of olive oil, cheese, avocado etc. (no cream I was told as it's undigestible for tiny babies apparently), she was on 3 meals a day plus bfeeds, yet from 6 - 9mo she only put on about 400g, less than when she was ebf. So food is not the answer, it made me feel better seeing stuff go in but it is true it has fewer calories than milk. She only really began to get ever so slightly chubby after 9mo when I introduced nuts and seeds, but even then she was not big.

She's now 2.6, eats like a horse but is still tiny. She's been tested for everything under the sun (we were even in hospital for a week) but there's absolutely nothing wrong with her, she just has a high metabolism.

One thing - did they tell you what values were out on the blood tests? The only thing I can think of that might cause worry is if it was the transaminase (I think that's how you say it in English), as it's an enzyme produced by the liver and increases when blood sugar is low.

Have just seen this VLC. I admire you for sticking with it. I still feel guilty for not sticking to my guns, you know. Yes am still BF but Callum has the high calorie formula as well. I wish he didn't.

oh and when you get a letter you are not supposed to see is terrible. I recieved one about my Ds1 once

It said that DS1 was devolping better than a child with Angelman's should!! At the time, DS1 had just been diagnosed with Cerebral palsy, and I couldn't work it out, I thought that they had diagnosed Angelmans and not told us. I ended up phoning the consultant and demanding what the hell it meant. Apparently the hospital HAD tested for Angelmans and this was their first thought, as to what was wrong with him, but they felt he was deloping too well to have it, but there was still a problem. Bloodly doctors

DON'T you dare feel guilty. God, why do we beat ourselves up like this.

If you feel guilty about formula for Callum, then I shall feel guilty for willfully starving babycarrot.

So let's not punish ourselves. We are all just trying to feed our babies, after all.

Besides, if you'd seen how much butter and cream I added to her food today you'd have snorted with laughter. I'm gonna fatten her up if it's the last thing I do...

Would it be terrible to suggest that you stop weighing her for a while? Can you not tell by looking at her that she is not malnurished? Is that an awful thing to suggest? I am really trying to be helpful to try and move away from the awful situation you are in?

tiggy, I know. It's not really the weighing that's the problem (any more). It's convincing others that there isn't a problem! (Alway assuming I have the mental resilience to remain confident in this belief, and retain the ability to try to convey this to others!)

Most of the time I know she's healthy, and developing well, and doing fine.

I just get the collywobbles every now and then. Wish I didn't.

And weighing is bloomin addictive. She put on 4 ounces last week, which is a record for us. So now of course I'm itching to make it happen again...