pulling my hair out

[helentinkletoes]

I have 5 month old twin girls one of whom gets collicky and excema if she has formula or if i eat cheese or drink milk. Normally they are fed on expressed breast milk but sometimes i have no choice but to give them formula. I went to boots off my own back in desparation and put the twin with the problem onto SMA LF and it has really helped with the colic but the excema is still there. The interesting thing is that both girls refuse point blank to drink either breastmilk or SMA LF and it makes me wonder if they know that anything else is likely to make them feel poorly if that makes sense. Both have reflux but are still managing to put on weight.

Because she's putting on weight i can't get a pediatricians referal and without a pead's referal i can't get a referal to a dietician and in the mean time i am feeling out of my depth. The GP sent a stool sample off to the hospital and we're waiting for the results (blumming christmas break). In the mean time I'm finding that the health visitors are giving me one set of advice (one told me i should carry on giving her the SMA LF as the excema wasn't that severe - this was a week after the reaction) and the doctors another.

All I want is to be able to find a formula that isn't going to make my little girl sick and to get some decent advice from someone who knows what they are on about. I don't really want to be trying formulas without medical support but i've not really had much choice really. My 3 year old daughter suffered in exactly the same way until i cut out milk products (and this was despite her test results all coming back normal). I was hoping to wean them onto formula in the new year but i'm reluctant to do it if it's going to make her sick.

I'm beginning to feel like i'm making this up and that i'm being fobbed off by the medical profession as a result!

Helen

[cnc]

Hi and welcome,
Sorry to hear that things are so difficult for you, but being fobbed off by helath professionals is something many can identify with on here.
I don't know much about formula but I know there are complete dairy free ones not just lactose free ones, such as neocate, if you search the threads there should be more info about them.
Sometimes you just have to go with your instincts, you know your children better than anyone, so try not to worry about changing to a different formula if you want to.

[helentinkletoes]

Thanks. I'll have a nosey round and see what we can come up with. Another question - are green slimey nappies normal? I'm sure i'll come back with more questions.

Helen

[cnc]

I'm about the least maternal person in the world, but I'm sure I remember someone else commenting about the aforementioned nappies and was informed that it wasn't normal. Hope this helps a bit.

[Copper]

Welcome to the site Helen.

My eldest daughter had green nappies and I was told that it was a sign that things were not right. I think (it was 29 years ago) it was a sign she was having too much or too little milk! After 10 weeks of her screaming day and night and weekly trips to the GP my daughter was suddenly ok. Now years later she has lactose intolerance. With hindsight that was what was wrong with her for the first 10 weeks of her life.

I was born with lactose intolerance and it went away when I was a couple of months old. It came back when I was a child and again in my 40's and I am now totally intolerant.

I think that you need to go back to the GP and put your foot down. If you make a nuisance of yourself it will be easier for the GP to refer you as it will keep you out of his/her surgery.

You need to explain what happened to your eldest (we have a family problem too so there is a link). Tell them what happens if you give ordinary formula to the twin with the problem. Green nappies should be mentioned too. Weep if needs be and say you don't want to give something to your baby that will make her sick and might affect her growth in the long term. As you have twins and one is ok you can compare the two and so demonstrate that there is something wrong with one and it is not something you have done or not done.

Tell them that you think it a dairy intolerance and you need help. There are special milks for babies with intolerance/allergy see a table of them here

http://www.paediatricgastroenterologist.co.uk/Milkstable.htm

I am pretty sure that these milks are only available on prescription. The only non dairy milk you could probably buy is soya based. You have to be careful with that as your baby could become intolerant to soya too. I don;t think it is the policy to put babies on soya based milk any more for that reason.

Oops this seems to be a long reply. Let us know how you get on. If you need any more help or information do ask again.

[helentinkletoes]

Thanks for showing me the table! I'm intollerant to dairy, nuts and to coconut (I get IBS and these are definately triggers although I can't be bothered to go through being tested) and whilst my oldest seems to have grown out of the milk problems, she gets diarhea and tummy ache if i give her nuts.

I had no idea that formula could contain coconut oils or i would have avoided them for obvious reasons. I wonder if the excema could be caused by the coconut oil - i used to get a skin irritation if i got any on my skin. This is definately why i didnt want to "go it alone". :angry:

So now i'm back to the drawing board!

Helen

[Copper]

The table is for the special formulas which are designed especially for intolerant/allergic babies.

I would still press your GP for an appointment with a specialist ASAP.

I don't know what formula you have tried already but this is what SMA contains
Ingredients in all SMA Gold Products.
Reduced minerals whey, vegetable oils, skimmed milk powder, lactose, emulsifiers(soya lecithin and monoglycerides of fatty acids), calcium chloride, potassium bicarbonate, sodium citrate, vitamin C, taurine, potassium hydroxide, ferrous, sulphate, potassium citrate, zinc sulphate, cytidine-5'-monophosphate, calcium hydroxide, disodium uridine-5'-monophosphate, vitamin E, antioxidant(tocopherol-rich extract),adenosine-5'- monophosphate, niacin, disodium inosine-5'-monophosphate, disodium guanosine-5'-monophosphate, pantothenic acid, vitamin A, copper sulphate, potassium chloride, thiamin, vitaminB6, riboflavin, beta-carotene, mananese sulphate, folic acid, potassium iodide, vitamin K, sodium selenite, biotin, vitamin D, vitamin B12.

No coconut there, so I guess that would be true for most run of the mill formulas. The excema could be caused by the milk. She could be lactose intolerant and intolerant to the milk protein. We are guessing here but a Dr should look at the family history. That is how my niece, age 11, was diagnosed recently. The Dr at the hospital would not say she was lactose intolerant but after listening to her talking abut her symptoms now, what she was like as a baby and our family history he told us that he wanted her on a dairy free diet.

My mother has lactose intolerance but she can tolerate a lot more that I can. She has 4 children, 2 of us have lactose intolerance, 1 has excema if she has milk and 1 is normal.

[rebecca c]

Helen

Mine had a few green nappies when they were newborn but non after that, I dont think it is normal. The slimeyness is a sign of mucus which can be a sign of intolerence and the main culprit is usually milk.

I can tolerate some coconut and not to much and have quite a strong reaction to
coconut oil.

I am not sure if your babies dont like the formula because of the milk or coconut lots of people who have tried neocate have found it to be good at getting rid of symptoms but have had problems getting their babies to drink it and have used milkshake powders to help them accept it.

As Copper says it is worth searching past discussions.

Please bear in mind many of us on this site have never received a diagnosis and have had to find our own way through. The consultants at Guys told me there is not accurate test for intolerences and not to believe or give my money to anyone who told me there was.

On the other hand I think it is your daughters right to see a dietician and you should be very assertive to get her that. It is ridiculous to say she isnt ill enough and makes me angry - under the system of care we have in this country she is entitled to the care she needs and she is way too small to tell us how ill she really is.

Anyway even when she is old enough my experience is they will discount it.

As you will see from the past discussions many people have fought hard for their babies right to good health and won and I am sure you will do the same. You have started in the right way which is to find out as much as you can.

Good luck with it all, any questions or support you need just ask and I know it will it make a difference and improve her health.

[Copper]

I have just read your first post again. It looks like your twins both have a problem with milk but one has a more obvious problem.

As you have been giving SMA LF to one then the chances are it does not contain coconut. I guess you could check the tin for this information. If she was better on SMA LF that should be enough to convince the GP that she is lactose intolerant.

She or both could still be intolerant to the milk protein and there is no test for that.

Most of us have diagnosed our own intolerances :( I am intolerant to a number of things and I guess I should try and convince my GP to agree and then put this in my notes.

[Dianne]

Hi everyone... Hi Helen

Just as an add on... I have twin boys (will be 21 in April) they were premature babies and as such became very greedy. Neither has an intolorance but neither would take milk from a bottle and I was having a nightmare time. My health visitor told me that the only thing I could do was to give them the milk from a teaspoon!!!! they were newborn babies for goodness sake!! When they were 9 weeks old I hit rock bottom with their screaming in hunger all of the time. I phone the hospital special care unit and spoke to a doctor their...he told me to stop panicking and to feed them.... I remember being slightly hysterical and shouting FEED THEM WHAT??? he said feed them food.... So at 9 weeks old and over a period of 24 hours my twin boys were completely off milk of any kind and were completely onto solids.........

I think that society puts too many pressures on us as mums to do ‘the right thing’ eat this…. drink that ……don’t do this ….. My boys never suffered from being fed solids and are very healthy

….. just a thought :o)

[helentinkletoes]

WIsh me luck. Things finally came to a head last week when we gave them the LF and they woke up 4 times in one night (one formula topup and they're waking up when they tend to sleep through on breastmilk). Went to the health visitor in floods of tears and she told me to go and see a doctor who I can't stand (she even i know you dont like him but.....).

What I find really stupid is that they'll prescribe me colief drops and gaviscon but won't give me prescription formula. Colief helps but it's useless as I give them formula on an ad hoc, when I haven't got enough expressed milk for them basis. I therefore can't put it in the milk and leave it long enough for it to work!

I guess i've got to go in there and stand up for myself and with the view that i'm going to get what I want from it but i'm not a strong person and i'm worried that i'm going to be "told off".

Another thought i've had is that if I give them any formula other than the LF and they squirm and refuse to drink it like my older daughter who we think had a silent reflux did. Could they be associating the taste of the formula with the discomfort? would a change of formula help that?

Helen

[rebecca c]

No I dont think they associate the change with the symptoms although pehaps I should counter that with we have lost touch with a lot of our basic instincts especially about food and if that is your instinct maybe it is a good one.

I think it is quite likely they will not like the neocate or low allergen formula, lots of people on this forum have had that problem. Many have overcome it by flavouring with milkshake powder. Please use the search to find out more.

Breast milk is a very distinct taste and your breastmilk would taste different from another womans, this is what they are used to.

I found when my children where little I was unassertive and health professionals both took advantage of this and took the commonly held position that mums with young children are all permanantly stressed and depressed.

You are not stressed or depressed you are under (double pressure) doing a job which is vital to our society. Many people value what you are doing and are grateful for your hardwork - me included. You must be such a great Mum you are working so hard to make sure the twins are well and get the best start possible.

I dont know what it is like to have twins but I have two boys and I breastfed them both for an extended time (18 months and 2 years).

Bear all this in mind when you are fighting their corner as well as the fact that you are their Mum and your instincts are a very important part of gauging the care they need. Keep at it and you will get what you need. So many other people who have posted here have had the same fight and won in the end. In all the cases I can remember the result has been babies who get better.

What can be more important than that?

[Copper]

The poor things must be waking because they are in pain.

Good luck with the visit to the Dr.

I was labelled as a neurotic mother with my first baby. She was screaming even when breast fed. I knew that this was not normal behaviour. She gave up on me and we had to give her formula, she was 10 weeks old. She was fine! She was a very hungry baby by this time and we weaned her early.

I now know that she was lactose intolerant and she obviously started producing the lactase enzyme just as she gave up on breast milk. The intolerance has come back to haunt her 20+ years later.