tips for persuading GP to prescribe Nanny formula please

[issywoo]

my ds is 14 weeks and has hidden reflux, he was expressed breastfed up until about 11 weeks (his tongue tie was a large factor in the breastfeeding coming to a premature end) and he was very comfortable on it but when i had to move to formula (and gaviscon)he was constipated on sma and generally uncomfortable and very snotty and uncomforatble on aptimil so i have tried him on nanny and he is much more comfortable (no more lurching) and his mucous has disappeared. the only problem is its costing me £7.95 every 2 days! whats the best way of handling my GP so he feels inclined to prescribe it? i think i already have a bit of a reputation in the surgery of being a bit of a know it all.........

Hi again Issiwoo, sad that apatamil was not good for him, I have no tips about how to get a formula prescribed because I can't even managed to get my GP to believe me that DS responded differently to each formula brand, I believe that they can not even express their opinions about the different brands freely. The only thing I can suggest is to keep a diary where the doctor can see a difference in your baby's health. Good luck.

tell your gp everything you have said here...surely he will agree with you that your son seems to have improved on nanny?
good luck

chandra, i'm gutted about the aptimil - i think he really liked the the taste and it wasn't as thick as the sma so he pooed better on it. its such a pain being on nanny - we're going on holiday on saturday for 2 weeks so i'll need to take about 7 tins of the stuff - yikes, i guess i'd better order it (£56 for milk, holey moley.....)

Issywoo, I hope you find a way to get it sorted, but there are rules about what is and what isn't allowed to be prescribed ...as I said on the other thread, I don't think Nanny is on the list of approved products. If it's not on the list, then it's not your GP being awkward!

Yeah I know, when I was looking for it, it costed around ?15 for a tin (not sure if it was pounds or euros but it was far more than what we could afford), at the end he got better with Aptamil+rocking chair and I didn't try Nanny.
I don't remember exactly how old is your baby but I just wanted to tell you, that no matter how bad the things look at the moment, he will be out of this soon, weaning, when the time arrive, will also help him a lot, and one day you are just going to realise that it has been quite a while since the last incident.

PS. It may be possible that Nanny is not in the list of things GPs can prescribe but if that is helping your DS your GP may ask you details about the milk (list of ingredients) and get it prescribed as such, he may prescribe a generic milk but you may end up having Nanny because is the only goats milk formula around, as far as I know.

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It's probably fair enough for a dietitian or specialist to be involved in prescribing specialist formula - this (in theory) means that someone with expert knowledge diagnoses a nutritional issue if a baby is failing to thrive/throwing up/ is in pain, and these symptoms are not the result of some other health problem. It also means (in theory) a baby on a non-standard formula is monitored by people in the know, so any improvement/deterioration becomes better known.

However, I think it is crazy that Issywoo's baby's tongue tie could not have been treated, so the baby could have remained on breastmilk. It is very difficult for mothers to find treatment for their baby's tongue tie, and very difficult to express long term and maintain a good supply.

As a result of all that, we have a baby who develops clear health problems on regular formula, whose mother has had to get advice from an internet forum on how this might be overcome, finds the solution herself as a result of this advice....and is unable to get health service support in meeting the extra costs arising from this medical problem.

I think 'the system' is right to be cautious about prescribing, though. We now know the potentially serious risks of soya formula, but it is there on the list, and difficult to remove. Other non-standard formulas may have risks we don't yet know about, so babies on non-standard formulas should be carefully monitored. I include Omneo in this but it is on sale for parents to buy off prescription, so advantages and disadvantages just aren't known.

Hi, my guess s/he will probably refer you to paediatrician and dietician, we had the same problem but to do with supplementation, the GP point blank refused to presribe it without getting ok from the higher powers that be.
Push for an urgent referral

Agree with P, push for a referral, we decided to go private for a dermatologist because we were really desperate about DS's skin condition and couldn't put him through 3 years of misery just for the GPs to know for sure that it wasn't baby eczema.

The problem was that when he became better the GP thought that the expensive creams where not necessary and refused to refer him, it was not until I mentioned to a pediatrician that we were spending over £100 a month in creams that we got the referal (and she was horrified that DS had not been refered earlier and that we had to pay for all his medicines). Now we have access to a NHS dermatologist without the need of being seen by the GP first and get all the medicines and creams from the NHS, and some of them were not listed, but we got them prescribed anyway.

Well the idea of all this unrelated babbling was to tell you that if your GP doesn't refer you to a pediatrician keep pushing.

thanks for all your comments. i am so sad that ds's tongue tie was not spotted by the paeds in hospital (i was in for 5 days)because even if they wouldn't have treated it they could have said that that was the probable reason why he could not latch on properly and then i would have just expressed. i bf dd for 4 months successfully even though i was very unwell and on steroids so i really thought this was my chance to get it right from the start. hey-ho! by the time a private paed diagnosed it he was 7 weeks old and my supply was already starting to slide. it also didn't help that ds is a bit of a bruiser (75th centile since birth) so they don't believe me when i say he has trouble feeding (maybe he just has a slow metabolism)
the pharmacist told me nanny is not on the approved list so i guess that has answered my question. will just have to accept the cost i suppose. apart from the cost are there any disadvantages to using it do you think? it is good for them isn't it???

sorru to hear your gp couldnt prescribe it. you could try online to see if you can get it cheaper (at least you would be able to buy the 900g size which works out a bit cheaper)

Issywoo, hope you will feel able to write to the hospital with your story.

issywoo, my dd is alot older than your baby, 20mths but i have put her on the nanny formula as cows/goats milk just doesnt agree with her. even though i b/f she gets these little flare ups.

anyway aside from that i just wanted to moan with oyu about the price of it. its ridiculous but do buy the bigger pack, maybe you could give some of the feeds of nanny and some of another brand if that is ok with him?

Wow, I didn't even realize there was a list. My dd had hidden reflux which we only realized she had when she was 5 months old. I had been exclusively bfing until then. My dd's paediatrician in los angeles recommended a bottle a day of an american staydown formula (with rice starch instead of corn starch) called Enfamil AR which it turned out was also available in the uk, but not out on the shelves. I went into my gp's and told her about the american paediatrician's recommendation and that it was available in the uk, but that I was having trouble finding it. She immediately offered to prescribe it and gave me a renewable prescription that lasted until my dd was 12 months. I had been fully prepared to pay for it! I guess I have a really nice gp!

issywoo, I just wanted to let you know that if you order 'Nanny' direct from the manufacturers, you can buy it 'in bulk' for quite a lot less, or at least, that was the case when I contacted them on my sisters behalf.

Unit One
7 Chalcot Rd
Primrose Hill
London
NW1 8LH
020 77224300
OR
0800 3285826
www.vitacare.co.uk
Email: [email protected]

HTH while you're waiting for a referral.

Issywoo, it's great that your son is still in the 75% which means that even with all the problems he is doing well, mine went from 75% to 25% in two months and everybody said it was "normal", yet as normal as it may be I still don't understand why they have to wait until things get really "abnormal" (meaning having a very ill baby) before doing something about it.
With a bit of luck, your DS will grow out of his reflux soon, so even if Nanny formula is very expensive don't worry too much about it, probably in some weeks time you would not need to use it anymore and may go back to regular formula.

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levanna, thanks so much for the address, they're only 10 mins from my house so i could always go and collect!
we're going to spain for 2 weeks on saturday so i think i'll buy enough to take away (7 tins!) and then review itwhen we get back. i know i have changed the milk very often but i have to say he has never seemed to have reacted badly to the change in itself
have tried enfamil ar on prescription but it was sooooo thick and the poor bot shrieked every time he pooed - will investigate the omneo
thanks everyone

just so you know, if you buy in bulk...it comes in box of "6 tins of 900g".
if the manufacturer cant sell it to you direct, ask at your health store for a bulk discount. in our shop we give customers a discount if the buy a box of 6 tins.

useful to know, thanks

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i seem to be following you around this morning robin
agree with you 100% on probiotic for baby.

issy, if you need to continue with nanny, you can always add in a bit of probiotic to the bottle of formula, we did. it usually comes in powder or liquid.

I know I am already sceptical about added ingredients to tried and tested products, but I would worry about adding a probiotic to the formula of a baby already showing signs of allergic tendencies - you do need to know in what 'material' the probiotic is suspended. Often, it's something starchy, probably rice as far as I can see from reading about it, but maybe it's other chalky stuff. I don't know what the liquid ones are suspended in.

Obviously, you would give medicines to babies who needed them, and they are not given 'raw' but in a form that preseves them. But the baby has formula several times a day for a long time.....prob most babies would be ok, but there might be some, with allergic tendencies, who aren't.

But as I say, I am already cautious

I not going to try to change yor mind Tiktok but the babies who are showing signs of allergy will almost certainly benefit from taking probiotics. the only reason I suggest the powder is that you can still continue to use your formula of choice. we have quite a few customers doing this and have yet to have any negative come-back. the perbiotics are something that sould be in the body anyway.

[quote]
Probiotics may be important in the control of food allergies because of their ability to improve digestion, by helping the intestinal tract control the absorption of food allergens and/or by changing immune system responses to foods.(ref 123 124 125) One group of researchers has reported using probiotics to successfully treat infants with food allergies in two trials: a double-blind trial using Lactobacillus GG bacteria in infant formula, and a preliminary trial giving the same bacteria to nursing mothers.(ref 126) Probiotics may also be important in non-allergy types of food intolerance caused by imbalances in the normal intestinal flora.(ref 127)

REF123. Kirjavainen PV, Gibson GR. Healthy gut microflora and allergy: factors influencing development of the microbiota. Ann Med 1999;31:288?92 [review].

124. Pelto L, Isolauri E, Lilius EM, et al. Probiotic bacteria down-regulate the milk-induced inflammatory response in milk-hypersensitive subjects but have an immunostimulatory effect in healthy subjects. Clin Exp Allergy 1998;28:1474?9.

125. Salminen S, Isolauri E, Salminen E. Clinical uses of probiotics for stabilizing the gut mucosal barrier: successful strains and future challenges. Antonie Van Leeuwenhoek 1996;70:347?58 [review].

126. Majamaa H, Isolauri E. Probiotics: a novel approach in the management of food allergy. J Allergy Clin Immunol 1997;99:179?85.

127. Hunter JO. Food allergy?or enterometabolic disorder? Lancet 1991;24:495?6 [review].

At the end of the day as parents we all do what we think is best for our children...and as people who spend their working days trying to improve the health and wellbeing of others we all do what we think is best for our patients! Ok that sound a bit twee I just mean there will always be differences of opinion!