Fed up!

[Heartmum2Jamie]

I don't usually moan about ds2's allergies, but I am getting to the end of my tether right about now. We had an allergist appt on 16th March to be told that he is doing really great, growing well etc. They agreed to leave it another year before a challenge and as I was still on cloud 9 to hear that ds had gained a centile (weight gain is a major issue with heart kids) I didn't think to ask if they could repeat his RAST. The did give me some paperwork for bloods, to check his iron, calcium and phosphate levels but I have yet to get him to the hospital to have those done.

What i am fed up with is the sheer number of yucky, horrible nappies I have been dealing with for about the last month. He seems to go in cycles of 6 weeks or som of sloppy, messy nappies several times a day to seeming a little better for a few weeks and then it starts again. Each time we think we may have exposed him to something he is allergic to, but now I am not sure if perhaps we have missed something. He is known to be allergic to milk, eggs, nuts & wheat and has an intolerance to large amounts of soya (like a yoghurt). I am racking my brains but can't really think of what else it may be, apart from gluten, but as he is wheat free, he is prodominantly gluten free too (not completely gluten free as he still has ready brek for breakfast...all 3 dieticians we have been under say this is ok for a "hardly wheat positive child")

I have just had to clean the floor with antibacterial sprays for the second time in 2 weeks as it was so bad that the nappy was full to the brim and the excess fluid ran down his legs He looks so pale and tired, even though he did not wake until 10am . We can't keep on like this, he will be 3 in June and I know that I am going to have to potty train him at some point, which will be incredibly difficult when he hardly ever has a firm stool.

Sorry, no real point to this thread, I just needed to vent

I don't know much about IgA but if it may help to clear the IgA confussion, you may be able to find help in the Special Needs thread. Some mums there have children who have had this test, would it help to start a thread under that topic?

I'm not sure what would be the reference limits for a child your age (in the case of IgE the reference limits vary according to age but I'm not sure is the same for IgA). In Ds's report says that he had 75.9 mg/dL
which was with in the reference limits of 40-240 mg/dL, now... what does that means I have not a clue. There is also a report for "IgA anti Gliadina" that has a 3.o UA/mL (reference limit 15 so then fine) and a 3.2 for "IgA anti transglutaminasa t" which is also OK. Why am I babbling about this I have no idea... I can not yet understand what are this results about, but they checked this and say he was fine with Gluten, however next set of skin prick tests showed DS is allergic to wheat .

" achild his age"

Don't know if this helps or quite what it means, but DD1's initial referral from the paed to the gastroenterologist said her TGA was 291 U/ml (I think this is the acronym for the antibody tissue transglutaminase test which is the coeliac test). They also said her IgA endomysial antibodies were positive but didn't give a level. They were surprised that with such a high TGA that she wasn't anaemic.

Also, in our Sainsburys they do a gluten-free porridge. We haven't tried it, so I can't recommend it I'm afraid. We are lucky in that our local Sainsburys does have a very good range of free-from foods - if you can't find this and would like to try it for your son I'd be happy to get some and post it to you.

Finally! at least some light on what one of them means! Thank you!

Heartmum2jamie consultants are easily flattered! I managed to bag an excellent one and asked him if we could move from the other horrid one we had and be with him as dd had a good relationship, continuity, expertise etc he said no problem and sorted it. You can get the one with the most relevant expertise I'm sure.