The doctor who gave up drugs

[wowfudge]

Hmm - my nephew has CMPA.

I thought it was great that he highlighted this. Actually there is so much more wrong with the whole set up than he even went into. NHS are spending millions on formula with almost non existent ‘science’ behind it actually improving yet alone curing CMPA. This will undoubtedly be the next big scandal for formula companies. You just can’t trust them to interfere with healthcare provision. This lady who runs a charity has been trying to highlight this for a while. See this lecture.

m.youtube.com/watch?v=9wRHoI1cMFM

If you skip to 9 mins she talks about nutramigen

I was incredibly pissed off. DD2 was a Neocate baby - and indeed our utter utter battle to get the GP to honour the prescription requests issued by the head dietician in the NHS trust set me off on an absolute spiral of crippling PND and absolutely wrecked parenthood for me. The demands of DD2 who screamed absolutely constantly fucked my relationship with DD1 up and made everything a mess.

The one thing that stopped her breaking into a bright red rash (the rash was within 5 minutes of feeding), scaley skin and screaming relentlessly was neocate... and believe me - you would not feed that shit for fun - it stinks, it's greasy and vile and hard as hell to get bottles clean from and you get none of that lovely baby smell - you get a child who smells like a rancid potato for the first year of their life, and who shits bright green shit. Course I did that just because I idly googled a few websites and decided to con the NHS out of cash because I didn't want to pay for Cow and Gate (GP accused me of this in one particularly despicable phonecall at 9pm at night - I remember begging her for a solution so I COULD use over the counter formula and not have to deal with it all).

Providing literature and pens and notepads with medical company logos on is nowt new - my best mate at school had a dad who was a medical rep and she always had a corking line in promotional biros and notepads... that whole segment smacked of a "oooh I've just had a baby - what else can I bash parents for since I know it all now" and needing to fill some time to be honest.

Incidentally they're still using the video of DD2's reaction post-feed to standard and partially broken down formula (she reacted to Aptamil Pepti... NEEDED to be on Neocate) in the dietician department as an example of one of the types of reactions that you might see in a case of CMPI

I don’t think he was suggesting that cmpa doesn’t exist in some children though, it clearly does. I have an allergic child myself so I understand the stress of it. I think he was suggesting that it can muddy the waters a bit if the the people educating hcps on the symptoms exist primarily to flog the cure.

My sister had issues with their GP making it difficult to get a prescription. Only now at nearly 9 years old is he growing out of CMPA. The NHS has no bloody money - hardly a surprise that drug companies and suppliers are producing educational materials.

My son had CPMA diagnosed by a consultant using skin prick tests after months of symptoms. I only got a referral from the GP when I brought in photos of what happened after he came into contact with milk (my 4th appointment) and the GP refused to prescribe suitable milk until he’d got an official diagnosis from the consultant. It left me delaying my return to work because I had to carry on breast feeding him.

That clearly is one end of the scale and frankly ridiculous. The other end is what is shown last night whereby a GP can interpret normal baby fussiness as an allergy and prescribe expensive milk without a fully informed diagnosis.

Surely it’s fairly simple, the diagnosis should be made by skin prick or blood test? I do know at least 2 parents that self diagnosed allergies in their children to cows milk. They eventually had the skin prick at around the same time as we did and it showed nothing, one mother actually said to me that she cried as she wanted an explanation as to why her baby had been difficult and thought she’d found one. It made me pretty angry as I’d give anything for my dd to not be allergic and have to go everywhere with an epipen, knowing that one simple error could potentially kill her.

But there’s igE and non-igE reactions - non igE can’t be diagnosed by skin prick or blood tests. Has to be exclusion and then reintroduction to challenge, hence why there is some ambiguity to it, and why nearly every formula fed baby with suspected CMPA will be prescribed alternative formula in the first instance, to enable exclusion test.

I didn’t like the programme. Would have been far better if he'd have explained the diagnosis skin prick tests etc I don't think we were diagnosed lightly at all! It took ages! Whilst he was right to challenge cost he only spoke to Mums (from what I saw as missed the first bit) who had been misdiagnosed not mums who had true diagnoses. I thought he was dismissive of the symptoms. I am grateful for the drug companies who developed these milks and did the research my daughter is 1000 times better in it. I understand the worry about drug companies providing education to doctors but I thought his opinions were derogatory to the experienced doctors who I’m sure are intelligent enough to go to the training and make their mind up about the research that’s presented to them they’re not daft and know who funds the research. Most training doctors get can often come from drug companies in all areas of medicine it’s not specific to cmpa it’s just often how things are done. My experience of ringing the makers of nutramigen was amazing he said they only care about selling their product it’s just not true when I read some articles about rickets and amino acid milks I didn’t get much advice from the dietician so I rang mead Johnson they listened to my questions were up on all the research told me some good information put me through to their pharmacist who answered some questions and when they were asking about my daughter were so caring and remembered her name when they rang back. They asked about all her symptoms gave me some weaning ideas helped me with a few queries about her intake and weight. They were just brilliant

Our skin prick cane back negative but she's non Ige and has a very clear diagnosis from the paediatrician currently reacting to step 4 at 18 months

DD2 was non-IGE mediated but very very reactive to it - like I say, the video I took of her reaction after a feed is still being used among professionals now.

She's outgrown it now completely as a school age child - but it absolutely destroyed my mental health going through it all.

Basically his whole gripe of that entire segment was that "oh the people providing information are the company"... well there was fuck all information out there elsewhere - so a few logos quite openly shoved at the bottom of a website and it saying all over it "funded by X" was pretty above board... just smacked of a "shit we've got 15 minutes still to fill - what else can we bang on about"

There's no way you'd willingly go down the neocate route - it's fucking awful stuff. Even their literature warns you about things like the bright green shits thing - and I'm bloody glad someone is warning about things like that cos that would have been a hell of a surprise if I wasn't prepared for it!

I don’t think he was suggesting that cmpa doesn’t exist in some children though, it clearly does

Indeed. But what was being highlighted was that the prescriptions for very expensive formula had risen from one a week to two or three a day. Something like a 500% increase?

Also the issue that the "training sessions" are funded by the very people who are making the hypoallergenic formulas. This is totally against the WHO code on marketing of formula but the NHS don't appear to care.

In an ideal world every baby would be diagnosed with the skin prick test, but the NICE guidelines are woolly and recommend prescription of hypoallergenic formulas while waiting for an appointment.

cks.nice.org.uk/cows-milk-protein-allergy-in-children#!scenario

So as the "information sites" which are also sponsored by the formula makers list vague symptoms like eczema, pulling knees up in discomfort as indicators of CMPA, you've got worried mothers frantically googling and coming up with their own diagnosis. Go to GP, it's a 4 month wait for a skin prick referral, 4 months of expensive prescription.

Yes, I was quite surprised to read how woolly nice guidelines are actually. It was a staggering increase in prescriptions, which would beg the question if THAT many babies are honestly allergic to CMPA why have the very same companies been marketing their Cows milk formula as vigorously as they have (ok, I know laws now prevent them for doing so I’m the U.K.)?

I thought there were too many holes in the arguments he presented - perhaps the increase in diagnosis is down to increased awareness and correct diagnosis?

The piece about anti depressants in teenagers really annoyed me.

He went on about how the teenager in the programme had done so well on talking therapy and completely omitted to mention that she was actually on antidepressants and talking therapy, which is in fact, exactly what the NICE guidance he criticised recommends.

I used to be able to quote you our local area's infant formula prescribing guidelines (the dietician DD2 saw was the woman who wrote them) - I hit the point of sending in a copy of them with the relevant bits highlighted with every single repeat prescription request until our GP got the message I wasn't backing down.

Basically it was the health visitor would work with the family, and if they suspected these symptoms they'd liase with the dietician team who would OK or not a trial of 1 month (not these indefinite months and months and months people are suggesting) of neocate. If that actually showed an impact (there was the phrase in there of "parents report the child seems to be a different baby") then they'd trial them on the cheapest allergy formula (was Aptamil Pepti when DD2 was small) and see if they reacted to that to try to keep them off the really expensive and horrid stuff. DD2 reacted to the Aptamil Pepti in under 5 minutes and was rigid screaming in agony and coming up in a bright red blotchy rash and she screamed for hours until she zonked out exhausted.

HV then caught GP out lying and falsifying her version of phonecalls she'd had with me (the bits about me being too cheap to buy formula and lying to defraud the NHS were changed to me happily saying there were no issues on the cheaper stuff) and we had an epic standoff with the HV refusing to leave the GP surgery until the GP issued a prescription for the full amount and assorted other nonsense involving the head dietician also getting involved reading our GP the riot act (with me with a young baby caught in the middle of all this nonsense) until it all got sorted out. Absolutely destroyed my mental health. Apparently this GP has a history of just running parents out of the practice with her nonsense over prescribing allergy formula and I'm one of the very few that have taken it on and won that battle.

Shoulda probably sent the GP a couple of nice shiny promotional pens in advance of DD2 being born really! That would have greased the wheels nicely.

The stuff is utterly terrible though - this is the ridiculousness of the assumption parents are pushing to be on it. It turns their shit bright green (army camo colours), it's got this slight greasy texture to it that means bottles never ever come up fully clean and it absolutely stinks of a stale chip shop... no one is going to be willingly feeding their kid this stuff and having a child that stinks faintly of stale potatoes permanently... DD2 also had happy chucker reflux and my poor poor carpets got soaked in the bloody stuff - never recovered.