Hi, I'm new & have a son with dairy allergy!!

[McDizzy]

Hi, my names Chantel and I have a 15month old son called Callum. We found out when he was 6wks old that he had a dairy allergy. Since then, he still hasn't been right. He nearly always has diarrhoea, he vomits, like possetting, nearly every day, but he also projectile vomits quite frequently. He's been on soya since he was 6wks old. He has been admitted to hospital 13 times due to diarrhoea and projectile vomiting. Each time they tell us it's gastroentirits, but we're not convinced, it seems to have happened too often. He gets regular fevers of up to 41degrees. We finally got an appointment with a secialist 4wks ago, who told us to take Callumoff soya as he may have an allergy. We had been giving him goats milk since he was 12mths to try and increase his calcium intake, so we just cut out soya and replaced with goat milk. Callum has now had diarrhoea for 5wks, we spoke to his gp 2wks into this bout and were advised to remove goats milk from his diet, so we put him on oat milk. His specialist is now saying that Callum's body may not be able to process oats, so to put him back on soya! So, I'm just so confused, thought I would join this site and see if I can get some advice or just someone to tell me I'm not alone!! ;)

[Copper]

Welcome to the site. I am sorry to hear that Callum has been poorly for such a long time.

These are my thoughts. If Callum is still sick on goats milk he might be lactose intolerant as well as dairy allergic. Lactose is the natural sugar found in the milk of mammals eg cows, goats, sheep. I am sure that I have read somewhere that people who are allergic to the protein in cows milk might develop a problem with the protein in goats milk as they are similar, so that is another possibility.

I am surprised that you were told to give Callum soya instead of dairy. Was this when he was 6 months old? It is a well known fact that people with dairy problems can go onto develop problems with soya. This has happened to some of us on this forum.

It can take a few weeks for our systems to clear the dairy, soya from our bodies. I would have thought you should be seeing signs of improvement after 5 weeks though. As he is back on soya I think he has a problem with soya.

I think that you have two options:-

1 Insist that somebody tests Callum for possible allergies.

2 Insist that the GP prescribes a special milk. These do taste and smell nasty. Other people here have added milk shake flavouring to make it taste nicer.

The down side of option 2 is that once you remove soya, oats etc from Callum's diet any tests carried out might give false negatives.

If you go here you will see a table of alternative milks.

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


These milks have been made especially for the dairy allergic babies.

You might need this information when you see your GP. It is always best to be as informed as possible.

Another question - sorry. As Callum is 15 months old are you sure that you have not been giving him hidden dairy or in any food he eats? Dairy products have many names and you have to read the ingredients lists carefully when you shop.

See this page on this site for alternative names for dairy

http://www.dairyfreeuk.com/forum/showthread.php?t=738

If you need any more help just ask. Keep in touch and let us know how Callum is doing.

[McDizzy]

Hi Copper, thanks for the reply. Callum has been on soya since he was 6wks old. We got this from our gp cos the hospital wouldn't listen to us and said that we were neurotic first time parents and we were over reacting. By 6wks old he was 1lb under his birth weight and you could see his bones, I had been breast feeding. They diagnosed him from a stool sample as being lactose intolerant. He went on SMA LF, but started projectile vomiting. They discharged him from the hospital and said he was fine, even though he was projectile vomting everytime he fed and he was still losing weight. After 3 days of this, and noone listening to us, we went to Tesco and bought SMA WYSOY. Callum was like a different baby, he didn't scream in pain, he drank all of his milk and was only slightly sick (like a normal baby) and he even started putting on weight, he gained 35oz in 11days. Because he was doing so well, his gp said to keep him on the soya. When we saw his pediatrician, she said it was fine to keep him on it. We got told of all the possible side effects, but they thought Callum had Galactasemia, so they couldn't give him nutrimigen, pepti, any other the other baby formulas, so kept him on soya. It took them 3 months to get the results back to us cos the hospital kept losing the results. By this time, I thought we might as well keep him on the soya cos he was being weaned. We introduced the goats milk after talking to a nutritionist at the hospital, who had Callum's notes and said it would be fine. TBH, there was no change, he's still projectile vomiting every few weeks and still has diarrhoea in between the vomiting episodes.

We haven't put him back on the soya yet, as I wanted to get more advice, but noone is listening to us again. I've kept him on the oat milk as there has been no change between soya, goats and oats.
I'll speak to his gp and see if we can get one of the other formulas and try him with milkshake powder.

I doubt we have given him anything with cow's milk in, as we are mega vigilant. I have a list of the names that are milk related and if I'm not sure, then we won't buy it. We had one incident at my brother's house where he pick up a piece of popcorn chicken from my nephew and bit into that. He swallowed a little bit and was immdiately projectile vomiting, so I think if we had missed something, we would've known. Saying that, the whole house is now dairy free cos I am so worried about him getting hold of it. I've cut out dairy, I went onto soya, but as soon as we were told to take him off that, I just cut out milk, to save having to keep change what I put in my tea! :)

I'm thinking there may be an underlying problem and not just the milk/food allergies. We have been begging the hospital for allergy tests since we found out Callum had problems, but they told us they wouldn't test him til he was 18 months old! :o We paid for a vega test when Callum was 7mths, that came back saying he was allergic to dairy but fine with everything else. I'm so desperate, that last Monday I took him to a chinese herbalist, who took a cut of his hair and is checking that for allergies, I should get the results on Monday.
He's recentley started drinking a hell of a lot of water, he constantly seems thirsty. I suppose that could be because of the diarrhoea!! But this is making him pee a lot obviously. He fills a nappy to bursting point every 2 hours.

Sorry, I've completely rambled and just gone on and on. Any more advice would be greatly received. I will go and look at the links you gave me Copper, thank you. xx

[Copper]

I don't want to upset you but these alternative tests are not recognised by the medical world. The only tests that allergy.uk used to advise having were the blood tests. These can be done with York Test but are very expensive. I also think that your son is not old enough for them. The blood test measures the amount of antigen. An antigen is something we make in our body to fight off bugs etc. Some people's bodies go mad and think the dairy protein is a threat and so make efforts to fight it.

If you go to this site

http://www.allergyuk.org/

you might find some helpful information there. As this all sounds a bit desperate it might be a good idea to phone them as they should be able to advise you on what to do next. You could ask at what age he could be tested and what tests he should have.

There is clearly something wrong with Callum and the medical world need to find out what and get it sorted out.

I asume the results for Galactasemia were negative.

In my opinion if he is lactose intolerant then goats milk will still make him ill. I am sure that goats milk contains lactose. In fact I have just read that on another site.

As he was ill on the SMA LF this would indicate to me another problem. He must be either allergic or intolerant to the dairy proteins too.

If he was ok on soya for a while this looks like he is now soya intolerant or soya allergic. The problem is that they put soya in just about everything grrrr. Have you tried him on a dairy, goat, soya free diet?

The important thing to watch out for is soya lecithin which is in a lot of foods.

I get so annoyed when the Drs say we are neurotic mothers. If a baby screams day and night or projectile vomits or does not put on weight then there is clearly something wrong.

I got a lecture about forcing the whole bottle down my daughter when she was only 3 months old. By that time she had got over her lactose intolerance and was in hsopital as she was back to sceaming. Eventaully a Dr found she had an ear infection. They also made me reheat a bottle and force it down her. :o I could not wait to get her out of that place.

[rebecca c]

Welcome to the site - I am so sorry to hear about Callum.

Coppers advice is all excellent. Many people have had the same problems as you before so it is worth searching the site so you can learn from their experiences.

Most of all be informed, be persistant and understand that you are dealing with it in the right way. The doctors should be making finding out what is wrong with callum and putting it right a priority. Of course you have an emotional response but they should be able to bypass that.

Be assertive, stay in as adult a response to them as possible (I know from experience this is easier said than done) and be very very persistant!!!!!

Good luck our thoughts are with you and continue to post any questions or to let off steam at your difficult situation.

People do seem to get things sorted if they stick at it.

[McDizzy]

Hi Rebecca, thanks for the welcome and the advice.

Lol Copper, don't worry, you haven't upset me. I know all these tests aren't recognised by the medical world, but I am getting desperate, so willing to try anything non evasive to at least give us a hint as to what could be wrong. I'll go on the allergyuk website, I didn't know about that one and I didn't know that there was an age limit as such, so that's good to know, at least know that the hospital weren't just fobbing me off.

When we were advised to go on goats milk, I was unsure, as, like you I believed goats milk had lactose in, and then on looking into it, found out it does, but when I spoke to Callum's gp, he said it was fine cos it was unlikely Callum was lactose intolerant! :mellow:

I'm just getting so confused with people telling me one thing, then changing their mind and I don't know why.

I try to stick to my guns and I have been very calm with all the medical professionals, I think I should probably be pushing more. But my partner is working away and only gets home 4 days a month, so I try and stay as calm as posible cos I don't want to end up pushing myself too hard and losing it (which has happened once, but bouncing back). Any advice in talking to the professionals would be greatly appreciated. I'll go and read through the threads now, get to know people and hopefully get some more insight!! xx

[rebecca c]

I think the more informed you are the more you can put your case. So research is the key. However dont tell them you found out this or that on the internet.

I was dairy intolerant as a baby as well and so was Copper. It is probably much more common than the doctors realise.

I dont want to bore other people but I am increasingly struck by the attitude of doctors about intolerances and even allergies as well as side effects of medicine compared to vets. I think it is the doctors who are letting their emotions and prejudice get in the way not the patients.

[Lou C]

Hi, Sorry to hear of the problems you are having, unfortunately this seems to be the case for lots of people. You have come to the right place though, as most of us have experienced similar problems and thankfully come through the other side! Have a nosy around the site particularly in the Dairyfree Kids section and you will hopefully pick up lots of tips from others, and ideas of suitable foods. It does take some getting used to ....but it becomes a way of life.

Have you tried your son with rice milk? I would stop the oat milk straight away just in case he has a problem with gluten, and try him on a rice milk I use Rice Dream for my son (with added calcium) but there are other brands also.....Provamel, and Sainsburys have an own brand, they all taste different so it's worth rying different ones tilyou find one he will drink (and as copper has said there's aways milk shake flavouring or even hot chocolate powder....dairy free of course!) . At 15 months he should be okay to have this if he has a good balanced diet. As rice milk is much lower in fat than dairy it's a good idea to add fat into his diet whare you can ....e.g. in his mashed potato etc. Pure sunflower spread and vitalite are both suitable for this.
I would also keep a food diary, along with details of his bowel movements/vomiting,then when you next see your consultant you have some evidence of the problems. If you go armed with your information and possibly some information from the Allergy UK site you may find that they have no option but to take you more seriously (hopefully!) As Copper and Rebecca have said I would avoid the "alternative" route (particularly the chinese herbalist as these are unregulated and have been known to "wrongly prescribe" which can be dangerous) especially as your son is so young. I can understand your desperation, but really the only reliable tests are those on the NHS and the York Tests, but none of these are really reliable under 2.

My son has an allergy to milk protein, we found this out when I began to wean him from breatfeeding, he projectile vomited and became covered in hives. I was advised that because the proteins in animal milks e.g. goats milk are very similar to that of cows milk to not even try him on any of these. I was very fortunate to have a good health visitor who recommended I ask my GP to prescribe Nutramigen, I had researched myself and found that soya was not recommended under 6 months......my GP was happy to prescribe this.........I used this as his main milk but also used supermarket soya milk (with added calcium) for cooking etc. I was also referred to a dietician. Once Zach was around 9 months the dietician advised that he was receiving enough of a balanced diet to come off the formula and just use the supermarket soya......Whilst he showed no typical allergic reaction, he had several loose and foul smelling stools daily, after removing common allergens we found that he was allergic to wheat (confirmed by the rast tests) but that he also had a problem with soya. I was advised that it is very common for a child with a dairy allergy to develop an allergy to soya, and I know others on here have also had the same problem. Unfortunately because he had been off the nutramigen a while he wouldn't drink it, although I don't think I tried flavouring it (I can't remember!!)

My son is now 4 and is dairy and wheat free and tolerates a small amount of soya daily....I know if he has had too much soya by his bowel habits!!!

Gosh sorry this has been so long winded and I hope I've made some sense....if you want to ask anything please do, and feel free to pm me if you like.

Good luck, Lou xx