food on prescription?

[threebees]

I'm sure this has been covered here or in foodsmatters magazine before, but I can't locate the information anywhere.

I am struggling to get my daughters food on prescription, her doctor has refused to help misunderstanding her condition and suggesting that only coeliac patients can get gluten free foods on prescription. I am aware of other children who are not coeliac who receive such foods on prescription. We have been purchasing her foods until now, however her father was made redundant and finances are now tight.

My daughter now six has had severve food intolerences since she was born and reacted to my breast milk, resulting in her being hospitalised at six days old. She reacted to various formulae severly and in the end I eliminated foods from my diet so she could tolerate my breast milk.
Between 18 months and 36 months she went through various tests and was not diagnosed has having allergies (although has subsequently shown allergic reations to strawberries and celery) but a predispostion to reacting to foods. We were told she was unable to digest certain proteins and that was the cause of her problems.
At 36 months we were told to feed her the foods we'd been avoiding as she would grow out of it, after three weeks of this and a rapid decline in her health, we told the consultant that we were not going to continue, he wanted to hospitalise her to observe her reactions. We went home!
She has improved but still reacts to wheat/oats/gluten, dairy, potato and various food additives. Her reactions include severe abdominal pain, upset stomach, panda eyes, sleepless nights and bed wetting, she gets very bad tempered and uncomfortable.
She hates being poked by medical staff and sees such experiences as unpleasant and painful, and is therefore reluctant to attend appointments.

What I would really appreciate is feedback from others who have been through similar experiences and advice on how to write to my GP in the hope of rectifying the issue of prescription foods.

Thankyou on behalf of Betty!

[John]

Hi threebees

My experience, as an adult with Total Food Allergy/Intolerance (http://www.foodsmatter.com/allergy_intolerance_food/total_food_intolerance/index_total_food_intolerance.html), is that doctors will only prescribe foods that are manufactured specially for particular medical conditions, such as coeliac disease. However, if you know of other parents who are getting other foods prescribed for their non-coeliac children, can you find out from them what the secret is, and preferably let us all know, because there must be other parents who would also like to know this! Failing this, it may be worth considering a change of doctor, preferably to one who you know in advance will prescribe the foods you need.

Your daughter clearly has a long-standing, well-documented and extensive food sensitivity problem, so your GP should have at least offered to prescribe an elemental or semi-elemental feed to ensure that she continues to obtain optimum nutrition while having to avoid all the foods that upset her. Maintaining your daughter's nutritional well-being is the GP's responsibility, and this type of feed is routinely prescribed for this purpose but, unfortunately, some GPs seem not to know much about them or their use.

The proteins in these feeds have been 'pre-digested' - partially, in the case of semi-elemental feeds, and completely in the case of elemental feeds - although it is possible that your daughter may nevertheless be intolerant to one or more of these feeds, so you may have to try several before you find the best one for her.

All these feeds are freely available (no prescription needed) and any chemist can obtain them for you, if you wish to purchase them yourself, but they are expensive. For example, the Nutramigen AA (elemental) is about £33.00 per tin, and the regular Nutramigen (semi-elemental) is about £13.00. But, as I said before, with your daughter's medical history, your GP should be prescribing this type of food for her. Below is a list of the feeds currently available for infants and children.

There is a slight difference in composition between the versions for infants and those for children over 6 months or 1 year, including a lower protein content in the latter. This is because older children are expected to obtain proteins form other foods as they are weaned but, in your daughter's case, if she has a particular problem with protein and is not getting any from other foods, she would be better to use the feeds for infants under 6 months of age.

Mead Johnson Careline: 00800 8834 2568 http://www.enfamil.co.uk/

* Nutramigen 1 An extensively hydrolysed, casein-based, semi-elemental infant formula. Supplied in 400 g cans.

* Nutramigen 2 As above, but for children over 6 months.

* Pregestimil A hydrolysed, casein-based, semi-elemental infant formula containing medium chain triglyceride (MCT) oil for easy absorption. Supplied in 400 gm cans.

* Nutramigen AA Elemental (amino acid-based) formula containing Lipil. Suppled in 400 g cans.


Nutricia (Cow & Gate and Adaptamil) Resource Centre - 01225 751098
http://www.nutricia-clinical-care.co.uk/asp/show_subject.asp

* Pepti. (Cow & Gate) An extensively hydrolysed, whey-based, semi-elemental formula for cow's milk-intolerant patients. The carbohydrate blend contains 40% lactose.

* Pepti-Junior. (Cow & Gate) An extensively hydrolysed, whey-based, lactose-free, semi-elemental formula with MCT oil. May not be hydrolysed quite as extensively as the casein-based feeds, but some find it tastes better than casein-based feeds. Formulated for children over 1, but actually used with all ages from birth to adulthood. In 450 gm cans.


SHS 0151 228 8161 www.shsweb.co.uk/giall

* Pepdite. An extensively hydrolysed, meat/soya-based, semi-elemental infant formula for infants under one. Supplied in 400 g cans. Fats per 100 g powder: 23.2 g total; 7.1 g saturated; 10.6 g mono-unsaturated; 4.4 g poly-unsaturated. 5% MCT. http://www.shs-nutrition.com/products/pepdite

* Pepdite 1+. An extensively hydrolysed, meat/soya-based, semi-elemental formula for children over one. Supplied in 400 g cans. Fats per 100 g powder: 17.3 g total; 6.7 g saturated; 7.6 g mono-unsaturated; 2.3 g poly-unsaturated. 35% MCT.

* Neocate (Neocate Infant). An elemental (amino acid-based) infant formula. (User comments vary from: "Palatable" to "Lousy taste") http://www.shs-nutrition.com/products/neocate


Abbot Nutrition (including Ross) Nutrition Helpline - 0800 252 882
http://www.abbottnutritionuk.com/display.aspx

Abbot currently have no hypoallergenic infant feeds available in the UK, although they do market such products in other countries.

See also:

http://www.foodsmatter.com/dairy_allergy/cow_milk_all_management/articles/infant_formulae.html

Good luck, and please let us know how you get on.

[threebees]

Betty was prescribed Nutramigen/Neocate until aged four. I was referring to gluten free products that are available on prescription to wheat intolerent people, such as pasta, bread and flour.

Of the families I know one child was suspected of being intolerent to wheat and therefore prescribed gluten free food, another now aged 10 is no longer allergic to wheat, rreceiving neagative RAST results, but is still senstitive to it and therefore receives gluten free food on prescription, in fact it was I who suggested to his mother that he could indeed do so, after meeting the first family!
She has suggested I take Betty to a dietician, we might give it a try, although the last time we did the dietician had no inkling of food intolerence.

It seems to me that we will have to indulge in the whole medical process and Betty is very uncomfortable with that, I was hoping others with similar experiences might be able to elaborate.

[Michelle]

Hi Threebees -
Prescription gluten-free products if you are not a diagnosed coeliac seem to be somewhat of a lottery and almost entirely dependent on the discretion of your GP - if he/she accepts that there is a genuine problem, he/she can prescribe but if not, he/she is not obliged to - whereas for a diagnosed coeliac, they have to.
Unfortunately it sounds as though you have a pretty unsympathetic GP (ever thought of changing GPs?.... You are perfectly entitled to if you are not happy with the one that you have) so you are not going to get much joy there. So, unless you were to change, attacking the problem via a dietitian could be the next move - although be warned, although some dietitians are absolutely brilliant on food intolerance and can be hugely supportive, there are others who could react like your GP.
Hopefully some other forum visitors may post some helpful suggestions - but you could also try skimming through a few of the 'personal histories' on the FM website (http://www.foodsmatter.com/allergy_intolerance_food/personal_histories/index_personal_histories.html) as you might pick up a few tips.
In your more general quest to find out what Betty's underlying problems might be, you might also want to have a look at the EE/EGIDs (eisinophilic gastrointestinal disease) sections in case that could be relevant - see http://www.foodsmatter.com/allergy_intolerance_food/egids/index_egids.html
Good luck!

[Micki]

Is it me or is everyone else wondering why elemental feeds seem to be mostly based on common allergens eg whey, casein, soya...?

[John]

In theory, it doesn't matter what the source of the protein is that is used in elemental and semi-elemental feeds because this is so extensively hydrolyzed that only peptides or amino acids (the building blocks of protein) are left. And it is because of this that Mead Johnson, for example, can recommend their feeds Pregestimil and Nutramigen for children with cow's milk allergy, even though they are milk-based.

However, some people have found that these feeds can in fact cause problems in milk-allergic individuals, so it probably depends just how sensitive the patient is to milk.

The meat/soya-based SHS feeds listed in my post above might therefore be a better option for a milk-sensitive person, as was the excellent, but now sadly discontinued soy/collagen-based Prejomin.

[Joanne surley]

My five month old baby boy has (after numerous stays in hospital) now been advised to avoid dairy, wheat, fish, eggs and soya. Luckily for us we have the support of two excellent consultants and dieticians both at our local hospital and The John Radcliffe Childrens Hospital. Is it possible for you to ask your consultant or dietician to write or speak to your GP for you. So far our GP has been excellent. I am just starting to wean my baby and want to practice baking. After a brief phone call the GP has kindly prescibed some mixes and flour for us to try and has asked for a list of other food stuffs we may want. However he did initially ask why I believed I could get food prescribed to which I just advised him the consultant had mentioned it.

All I can say is don't give up and just keep asking. Good luck.

[Micki]

Hi John. Take your point about hydrolized proteins, but makes me nervous when you look at allergy from an energetic point of view. It would still have the energetic fingerprint, so to speak, of the proteins it derived from, which might explain why some people can't tolerate them still. And also, I don't think we really understand yet what the bases for allergy or intolerance truly are, so we can't confirm they are safe. Interesting. Are any of the feeds based on rice, do you know, as it's pretty hypo-allergenic generally and has one of the best nutrition protein scores?

[John]

I'm not aware of any rice-based formulas. Unfortunately we've just lost the excellent Prejomin, which was soya and collagen-based, as the German makers have completely reformulated their feeds and are now using only whey or casein as the protein source, as all the other formula manufacturers do. I suppose milk is more readily available and, in the volume that they must buy it in, dirt cheap!