Finding the right private consultant

[thatsnotmypineapple]

DD2 (6mths) has eczema and some reflux and I am not entirely sure what is causing it. I had thought it was CMPI, but I have excluded this from my diet for the last 3 weeks and while it is making some difference to the reflux, it is not having any affect on her skin. GP referred us 5 weeks ago, but the NHS referral is likely to take several more weeks, so my mum has offered to pay for us to go private.

I have made an appointment with Dr Murtuza Khan at the Portland, but really have no idea if he is the right person I should see (his areas of interest are listed as eczema and food allergy), but I don't know how much research I should have done, or if I have gone about it the right way, as private healthcare is quite alien to me. Has anyone here seen him? Or have any suggestions as to finding the right person?

I've been looking into this too.mProfessor Gideon lack comes highly recommended or anyone from his team at the evelina children's hospital. They certainly are at the forefront of research in this area.

Another recommendation for Prof Lack, my son had similar symptoms and it turned out to be cow milk allergies and a few other food allergies. He was very helpful and thorough. The NHS waiting list was too long and my son was suffering

P.s. Our GP recommended him to us

Dowain, may I ask where you saw him and how much it cost? Also was everything done in one appointment? Just wondering whether it's worthwhile going private.

We see Dr Thompson at the Portland who always comes highly recommended and is probably the best in the country.

www.paediatricgastroenterologist.co.uk

He has been brilliant with DS. Diagnosed CMPA and soy allergies, sorted the reflux, helped with weight gain issues and generally looked after him really well.

Have you eliminated soy from your diet too? There's a 40% cross over between dairy and soy allergies as the proteins are similar. DS had more soy reactions than dairy.

Super worm, may I ask how many appointments it took to diagnose that and what type of tests were done? Thanks!

Sure. He suggested eliminating dairy & soy at the first appointment after taking a history. Then at the second it was confirmed after a challenge.

Skin prick tests were done at six months to rule out immediate allergies before we started weaning.

DS had blood tests at a year after problems with weight gain and reflux. Dr Thompson has been very thorough and always taken our concerns seriously, referred us to a Dieticians etc.

My 5 year old Dd has been under the care of Dr Helen Cox Consultant Paediatric Allergy specialist since 9 months old. I can't recommend her highly enough! You can see her privately at Bupa Cromwell Rd Hospital or Harley Street otherwise on the Nhs at St Mary's Hospital. We also use Dr Neil Shah Consultant paediatric gastroenterologist at GOSH (private wing)

Thanks everyone, that is really useful. I am going to keep the appointment with Dr Khan tomorrow.

mindless DD1 was under Dr Cox at St Mary's for her allergies. I didn't think if trying to find her privately. She was incredibly reassuring and didn't treat me like a neurotic mother unlike our GP.

superworm I was wondering about soy, as dairy free has made so little difference. I have basically assumed that it was cows milk as both DD1 and myself had it as infants and grew out of it, and DH is intolerant. DD1 also had egg allergy, and I suspect that this may also be the case with DD2, as I haven't cut them out of my diet.

Soy is definitely worth trying and probably egg too. I was dairy and soy intolerant in pregnancy and winder if that made a difference...

Good luck for tomorrow

We saw him at the Portland hospital . I can't remember the exact figure but it cost around £500 that included the consultation and skin prick test. We had three appointments with him and two lots of skin tests. He prescribed neocate and epipens which I get through my GP. We need to go see him again to check if my son outgrew his cow milk allergy. As for his eczema it was very bad so we also had to see a dermatologist following prof Lack's recommendation. They were worth every penny

Just to clarify the figure was for one appointment.

How did it go?

Well, we had the appointment yesterday and it went OK. Dr Khan is quite pleasant, but also very business like. He will only do the skin prick tests when she is a bit older, as apparently they will be too unreliable at this age. I was a bit frustrated about that, but I suppose we need accurate answers. He wants to see her again in 6 weeks, but we may have the NHS appointment through by then, so just fall back into that. I will see how it goes.

He recommended that I continue with a strict dairy free diet for another 2 weeks, along with soy, then go egg free as well. He gave me a prescription for Aptimil Pepti and a different strength hydrocortisone.

I need to decide if I am going to carry on breastfeeding. I had hoped to do 12 months this time, but I am not sure what I am going to eat if I can't have dairy or eggs, as I have some food issues. I think I would feel very selfish if I gave it up though

Thats, don't feel selfish, it is very tough!

I would recommend that you at least give one bottle of pepti to get your baby used to the taste and taking a bottle. Our situation at 11 months is that baby won't take to a bottle and neither to formula, so it's very very difficult to do a proper food challenge and see exactly what is troubling her. We are dairy, soya, egg, nut, wheat and fish free, and it's still difficult to ascertain exactly what is going on.

I really regret not putting her on formula earlier.

I think you need to do what is right for you with the breastfeeding. It's very tough feeding an allergic baby, so don't feel guilty.

I will say once you get used to the exclusion diet, it becomes second nature, although you miss things of course.

I'm a coeliac so I'm gluten, dairy and soy free. Soy lectithins or any possible contamination in manufacturing is out. My diets not very exciting but I know exactly where to find what I need.

On the advice of Dr Khan we weaned DS onto Aptamil Pepti at 6 months and never looked back. His letter to the GP also meant that at last we were taken seriously and although now we see the team at St Thomas (dealing with multiple allergies) we were very glad to have started the process privately, because when your child is suffering at such a young age, a few weeks' wait for an NHS appointment feels like too long.

6 months was a good time to wean because DS accepted the bottle quite well (it took about five hours to persuade him, and it was quite stressful, but worth it!). It helps that Pepti is more palatable than Neocate, but it's worth bearing in mind that it still has whey protein, albeit extensively hydrolyzed. DS tolerated it fine despite having an IgE mediated allergy to CMP. I had planned to breastfeed DS until at least 12 months but I had to exclude so many things from my diet that I lost too much weight. Within a week of weaning we all slept so much better and I had more energy to concentrate on all the other aspects of being a mum! But of course it's such a personal decision. All I'd say is that if you're going to introduce Pepti, it will be easier now than later.

Anyway, the message is: don't feel guilty! You're clearly doing the best you possibly can for your DD.

Thanks everyone. I can't say what it means to discuss this with people who actually understand. I am not knocking formula feeding (my Dsis FF her two from birth), but I have never had any problems with bf'ding and it seems a shame to stop now, all because I don't want to give up cheese.

Anyway, I have requested that our GP gives us any NHS prescription and hopefully we should get this on Monday. I will certainly start to combination feed (if she will take it) and then think about switching fully. cameorole the weight loss is actually a pleasant side effect for me, but I do have plenty of it to spare . Although i have a vitamin D deficiency as it is, and I need to supplement my calcium properly, which is just one more thing to worry about.