Health carers who don't inspire confidence!

[sophiesmum]

Hi all,

I just wanted to vent a little frustration over the struggle I have/am facing regarding my 5 month old daughters milk allergy.

After she had had her first two reactions to milk formula a couple of weeks ago, I contacted her health visitors for advice, as I was soon returning to work and thus could no longer breastfeed my daughter. One health visitor came to see us and I showed her the reaction. (It's what I now believe is called Type 1 reaction as it happens within minutes and from tiny amounts). The health visitor dismissed the allergic reaction as mild (:rolleyes: ) and her recommendation would be to use water rather than milk in Sophie's purees. Reiterating myself I explained I was going back to work and the real problem wasn't weaning, but what formula Sophie would live on - the responds was, that she couldn't do anything about that and if I wanted a prescription I should make an appointment with the Sophie's GP. Argh - why did she come to visit us in the first place if she couldn't help us :angry:

SO we made an appointment with a GP at the practise (Sophie's GP wasn't available). He told me, without having seen her reacting to the milk, that he didn't believe it was milk allergy - as this was uncommon in babies. I think he got milk allergy and milk intolerance mixed up...:rolleyes: The advice was to try some other brands. We did (and probably should have done earlier as well), but the reaction was simply just worse. :( BUT this time I took a photo with my phone!!!

THEN we went back to the health visitors and showed the photo. They asked to borrow my phone, so they could show it to a GP. Came back and apparently the GPs responds was that the photo was a classic example of something I didn't catch the name of :rolleyes: and that we should stay off milk (but challenge Sophie with milk every so often). That's it. No suggestion for alternative formula, no information about what other products to avoid, no suggestion about proper diagnosis. :o
So again I reiterated to the health visitors - what do I feed my daughter :confused:
They suggested SOYA.

WELL - a relative of a friend, who's a pediatric dietitian, tolk me that I should NOT be giving her soya while she was only 5 months. This dietitian explained that some dietitians believe soya shouldn't be given to babies under 1. Certainly not under 6 months... :unsure:

BACK to the health visitors - I had questions and I wanted answers :cool:
So they looked into this 6 month/1 year suggestion and it turned out to be right! I shouldn't be giving her soya... Soya is only adviced if the baby doesn't tolerate the hydrolysed milk formula that is available on prescription. :confused: The GP was informed, but admitted she didn't know enough about the subject to give me a prescription.

So 3rd time lucky as the health visitor admitted - we left the surgery with a referral to a dietitian :D

What bothers me is that milk allergy is not uncommon in babies and there must have been cases before Sophie's at this surgery - but was has happened to them? Did they just get fobbed off like I initially did?


Has anyone had similar experiences with health professionals?



btw, thanks for reading this far...

Sophiesmum

[scallywag]

Hi sophies mum, sorry to hear that you have been having a difficult time getting advice, but agree with it is very frustrating trying to get information, i am still battling with it regards my daughter, i never feel that i am given enough information. I really do beleive that the gp's dont understand allergy or intolerances and they really should have more training in regards to this, as it is becoming very common.

I think mum knows best and if you feel something not quite right, then in the words of my nan, seek a second opinion and carry on until you are happy. I can see that you are already doing that, good advice i think even if it makes you seem a bit pushy, just go with it.

But i can really understand your frustration. Good Luck with it though.

Scallywag

[matt]

without meaning to insult gp's... general practise jack of all trades master of none.

stick to your guns and good luck.

[jill]

Have you thought of expressing your breast milk, short term until you can get the correct formula sorted out? My sister had to express her milk when my nephew was born 15 years ago, as he had a hair lip and cleft palette and couldn't suck on the breast. She had some sort of electronic milking device loaned to her. Might be another option for you to consider if your baby has been okay until you started on formula.

Frustration, GP's and some hospital consultants go well together. It took me around 15 years to get my problem properly diagnosed. I ended up changing from a consultant at Scunthorpe to one at Hull as the one at Scunthorpe got me so frustrated and in tears that he said it was just stress. The one at Hull was totally different, what a difference it makes when somebody actually sits and listens to you. Don't give up, I'm sure you will get it sorted, it is rather tough and as you have found out frustrating.

[tigerlily]

Oh, yeah, this all sounds very familar. I had to educate the GP regarding non-dairy formula options and MADE HIM (oh, yes, I can be very pushy!) prescribe Eden a hydroallergenic formula. I knew virtually NOTHING about dairy intolerance/allergy when Eden started to show first signs of it and had to get into "auto-teaching" mode pretty fast if I wanted results as it became clear immediately that our GPs weren't any help at all!!!!!!!!!!!!!!!!!!!!! That was before Eden got to see a dietician.
We even put in a complaint against one GP over this whole allergy issue. Suffice to say, the practice let him go!!! This, by the way, was the same GP who failed to diagnose a severe heart defect in Eden at age 2 1/2 and failed to refer her to a cardiologist!!!!!!!!!!!!!!!!! She had Emergency Heart Surgery 2 days after his failed diagnosis!!!
In any case, get in touch if you wish to complain!!! I'm sure I can help.

It's a very common allergy, yes, even though most GPs will argue that a NUT ALLERGY is the most common one these days in children and babies (1 in 100).

Keep us posted!

Vanessa.