Son not diagnosed until 2 yrs old - normal?

[Doo]

Is that unusual? His only symptom is very runny nappies. Looking back his nappies were always that way and I actually thought it was normal to have to do a complete change of clothes at least twice a day! It wasn't until he became a toddler and I started thinking about potty training that I began to wonder if he was ever going to grow out of it. I got repeatedly fobbed off my the HV and only went to the Dr after the nursery repeatedly commented on his nappies. When he was a baby he didn't grow along his centile until he went onto solids despite guzzling loads of milk. Could that have been an early sign? I'm presuming his intollerance must be very mild as so many others have been diagnosed as babies due to something being unmistakedly very wrong. I do feel guilty that we only found out 4 weeks ago.

Also, how long before I can expect to see an improvement. We saw a small improvement after about 3 weeks but it all went to pot again at the weekend, although I think that might be down to my ignorance of foods containing hidden lactose eg. chicken nuggets!

Many thanks

Doo

[matt]

it'll take a few weeks of being very strict before you will see an improvement. the slightest mistake can set you back to day one so pay attention and get used to looking closely at labels. be strict with nursey and relatives!!!

[manda]

Hi my daughter can't have cows milk and you would be totaly amazed at where they hide it I have a list of about 70 items that are milk:eek:

I find it easier to just not buy processed food and tell people who look after her to only give her water or fruit nothing else.

School have a list and photo awareness sheet in the class and the staff room family have all been told but I still have problems.

Manda

[aly0909]

We have taken our daughter to a medical herbalist this week who has diagnosed cow's milk intolerance.

We got nowhere with NHS who have been treating her with seriously strong laxatives for the last year and it has got no better. I have constantly asked our paed cons to test for allergies as I was convinced it must be something in her diet that was causing occasional bouts of constipation as her symptoms included much more. However, he refused saying there was nothing about her that suggested she was allergic or intolerant and that it was in my head!!!

Her symptoms when in an episode include either profuse pooing, or constipation, bloating, cramps, vomiting, pain, smelly breath, lethargy, poor color, blackness under her eyes, loss of appetite, clinginess, whinging. She is a different child.

Although I have not had an "othodox" diagnosis, I feel very persuaded by what the herbalist has said and I am going to start by cutting out cow's milk which is what she think is the main cause - got a lot worse at 12 months' when she went on to this as her main drink.

We are certainly going to try it as we feel that we have nothing to lose.

I have been on another site thread where it was recommended that as well as reducing or cutting out dairy products, a digestive system weakened by allergy or intolerance is helped by reducing the strain on it by giving it old fashioned cooking e.g. stews, soups, casseroles, cooked or baked fruit - apparently it just means the digestive system has less work to do to break down its food. Haven't been doing this long enough yet to notice a difference but thought I would pass it on.

As for the guilt - I feel dreadful that it has taken us so long to (hopefully) get to the root of the problem. My gut was telling me there was more to it than simple constipation but I just let her be put in a box and given strong doses of laxatives, which have put even further strain on her little system. I could cry when I think of the days and weeks we have spent with her in pain. NEVER AGAIN will I be talked down by someone - even a professional. Our consultant actually used to put his hand up in front of my face and stop me from speaking when I tried to raise my concerns. He actually told me one day that I was half her problem because I was so obsessed with her pooing/not pooing. I am now going to refuse to go back to him and insist on someone else seeing her to give a second opinion.

Just wanted to let you know - you're not on your own. But we've done our best - that's all we can do.

[Copper]

What a horrible experience for you. You should not feel guilty as you tried your very best to get somebody ie GP to listen.

From your desription it sounds like a lactose intolerance. I am sure your daughter will be much better soon. Check labels carefully for those hidden milk ingredients. They like to put lactose in far too much food - even chicken!

[matt]

terrible stories. but there is hope

be carefull and make sure everyone else is. the smallest amount can trigger results. you will need to give it a few weeks and wait to see if the symptoms go away. then the unpleasant thing.... you have to reintroduce it to prove the intolerance.
then you can go to the doctor and explain what you have done they can't deny that evidence.

the stews are a good idea but be carefull with the ingredients like stock cubes...

good luck

[Pam]

Some of these health professionals are so blinkered, they need a good beating!

There are no text book symptoms with intolerances and allergies but mother knows best and the doctors really should listen a bit more.

Check the labels on everything - change your milk and margarine to dairy free alternatives and try to stick to food that you have cooked yourself for a few days/weeks. You should see a vast improvement within days if milk really is a problem.

[cnc]

Even if a doctor won't listen to you, they can't force you to feed your child something you don't want to.

There are some good specialists out there, and you're within your rights to ask to see someone else. This is your daughters health, so do what you think is best for her. Good luck

[rebecca c]

I agree with Claire. There are a few good doctors/consultants out there who actually respect people who do their own research and know what they are talking about. They are not widespread I have found them by luck and perseverence. I generally now go to the doctor with a plan of what I want to get out of the consultation then I put it to them, listen to their opinion and then discuss or negotiate a conclusion.

This is only possible with a doctor who will listen and respect you and if I am really ill I am often not able to be this assertive so I accept (sort of) I have to keep going back until I get the right result. I have started to explain that the medicines they are offering may relieve the symptoms but they are going to make me just as ill in other ways - I get an interested and respectful response to this. I feel more assertive about doing this since I have been to Guys.

So get that second opinion, explain that you are the childs mum and your input should be key to any diagnosis and dont let them get you down however many times you have to go back.

I have had a lactose intolerence all my life. You shouldnt feel guilty just as my Mum shouldnt how could she have known? You have had to gather information and formulate a possible cause that takes time.

[tigerlily]

We went to see a homeopath too as we were let down by the NHS. In the end, Eden had the YORK TESTs ...and BINGO! Results!


Vanessa.

[matt]

i'm never really happy with the york tests.....

elimination and reintroduction far more reliable and much cheaper....