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 feel for you ds is the same although he is a little bit younger 2.3 but i'm dreading potty training

just want to send you some sympathy and a hug. Really don't know what to suggest - maybe the usual probiotics, they are good for most bowel problems. Could try dumping the readybrek for a few days and see if he is one of the ones who can't tolerate oats? I don't know what you'd give him instead - maybe rice krispies? Sorry this isn't much use, so just sending some cyber hugs.

Thanks for the hugs, much appreciated. Alibobins, you have my sympathies if your ds is going through the same, hugs for you too.

Kerrymum, I was thinking of doing another food diary, not that the last one was much help, especially as I suspect that ds2 picks up tiny bits that have been dropped by ds1. I try to be as vigilant as I can but he is a crafty little monkey! Other than that, or I really am missing something.

I have just fished his notes out and his rast results reads as follows, Allergen specific IgE in IU/ml & Grade:

Milk: 1.3 Grade 2
Nuts: 4.2 Grade3
Eggs: 7.2 Grade 3
Fish:

The detailed Rast sounds very good as my ds has alot of mini reactions like just hives and runny nappies. Consultant will only test what we've had a seriouse reaction to ie. anaphylatic reaction even though the cause of one is still unknown.
We do know that he is allergic to fish eggs nuts and can't tollerate a lot of diary.

I agree that the detailed RAST sounds great. We had to pay privately to have ds2 RAST tested in the first place when he was 19 months, but they only did the typical paed panel. The guy saw privately now has ds on his NHS clinic ...... not that we ever see him though, always a registrar. I am going to try and call his secretary today to ask him to send the paperwork through for a repeat RAST and enquire how much this detailed RAST is.

I will start a diary today and see what happens. I suppose it doesn't help that I have an incredibly picky toddler who has issues with food.

It could be gluten (coeliac disease), you said "We kept him wheat free when we saw a marked improvement in his well being and decrease in horrid, mucousy nappies that smelled like a rotting dustbin." The smallest amount of gluten is enough to trigger the symptoms - I was told that it would take my body 6 weeks to recover from one piece of bread the size of a marble. You can get a blood test for it through your GP, or you can buy one yourself.

Have you had a coeliac disease test?

He did have a coeliac test done many moons ago when they were investigating his failure to thrive when he was 6 months. Naturally, it came back negative because he was not on any solids at all at that point.

I asked the paed last time we were there (Jan 07) was was told categorically NO that they would not/could not test him as he is not eating wheat .

Would I have to put him back on wheat to get an accurate result? Also, this is going to sound like a stupid question, but do undiagnosed coeliacs get alot of aches and pains? Ds2 is always telling me that something or other hurts, mainly his back, but sometimes his arms, legs or feet (besides his tummy). I didn't think it was possible for a 2 1/2 year old to have so many pains

That's a good point - if ds2 is not having enough gluten, the tests would come back negative (the tests are not as sensitive as the intestines). You would have to put him back on wheat for, say, 6 weeks - but given what tou say about his health that is not a good idea. As an alternative, cut out every trace of gluten in his diet - it cannot do any harm.

The most common pain for coeliacs is stomach cramp, but there are many, many symptoms (weight loss, weight gain, flatulence, depression, loss of energy etc) and related diseases. See "Dangerous Grains: Why Gluten Cereal Grains May Be Hazardous to Your Health by James Braly, Ron Hoggan", which notes links between gluten sensitivity/intolerance and, for example, autism, ADHD, osteoperosis etc as well as coeliac disease.

Yeah I'd cut out gluten altogether for a bit and see if it makes a difference. You don't want to make him suffer anymore than he is already. Something is obviously not right if he's in pain too. Can you call your paed and go back and see him? I forgot lots of things and I rang and got another app. You need to find out all the possibilities and what they can test for.

I don't know how you feel about alternatives but I swear by accupuncture and Chinese Medicine, my dd has gone from strength to strength. There are doctors that specialise with little ones. No needles btw just pressure.

So sorry to hear your son is so poorly. His symptoms sound very similar to my DD1's a year ago: no weight gain for a year, no appetite, frequent vomiting, severe lethargy and tiredness. She was either constipated or had horrid diarrhoea with a few overflowing nappies such as you describe. She had a bloated belly, but no bottom and stick thin legs; her complexion was grey with huge bags under her eyes despite sleeping well at night and napping for 2-3 hours every day. She was 2.5 at this time. With hindsight her symptoms had started at about 7 months, just after I introduced gluten into her diet at 6 months so that differs from your son. Two weeks after starting her gluten-free diet she was a different child, with stacks of energy, shovelling food into her mouth with gusto - made me cry to watch!

It is so horrid to watch your child suffer and I would be tempted to try a completely gluten-free diet to see his reaction. But you should be aware that to get a confirmed diagnosis, on which basis you could then get food on prescription for your son, you will have to put him back on gluten for at least 6 weeks, prior to any testing (I had to check this for my SIL as my nephew has just been diagnosed as well) as otherwise you will get a negative blood test.

I hope you get some answers very soon.

Thank you all for your messages, it is great to be able to come to a board such as this and vent away knowing that you "get it"!

I have been trying all afternoon to get hold of either of ds's consultants secretaries with no luck at all. I have done a little searching on t'internet and found that the consultant that we see for his allergies is actually a paediatric gastroenterologist who specialises in Nutrition, Coeliac Disease, Inflammatory Bowel disease, Bowel motility Disorders & Cystic Fibrosis! Sounds like he is very useful, perhaps why we have yet to actually see the man on the NHS. I have no fired off an email to him asking if we can have another RAST done and basically making hi aware of the problems we are having, telling him that I am going to trial him gluten free. I hope that we get a response/answers soon.

Good news is that I changed a dirty nappy earlier that had a nice (!), normal looking stool . The things I can get happy about!

OH FFS . Just had an auto reply to my email saying the he will check his email again on the 13th April. Argh! I am pretty sure that the general paed won't want to step on the other consultants toes and even if I wanted to go private, I would still have to wait 2 weeks.

Oh well, just me & my diary then.

Ds was tested for coeliac's about 2 months ago and this came back negative. He's had three really runny poo's today and i can't see what too as he hasn't eaten much.
Hope you get some answers soon

if your son has just had IgE tests then they tested for wheat allergy and not coeliac disease. Do you know if he had an IgA blood tests and if so did they do a total IgA test as the antibody only test doesn't work well in a few people? It sounds as though it may be worth trying totally gluten free until you can speak to the consultant. I know I feel completely different on a gluten free diet yet my blood test was negative.

I looked up rice krispies and they are no good but you can get gluten free cereal in some health food stores. Can't remember about supermarkets. I have rice cakes for breakfast. Maybe he'd eat those with jam or gluten free bread toasted?

Just discovered that Keeloogs think their rice crispies are OK

"although Kellogg Rice Krispies, Ricicles and Coco Pops contain malt flavouring they fall well within the international Codex Standard of 200ppm." - this was about changing the gluten free status of other cereals so they seem to be quite good about checking.

My DD1 has kelloggs rice krispies - we were told they were fine, but a dietitian friend told me she doesn't allow them for coeliacs she looks after. In Sainsburys and Tescos they do Kallo puffed rice with honey which all my DDs love. DD1 is not keen on the gluten free bread plain, but toasted with jam or peanut butter she loves it.

Just wanted to say I feel for you Heartmum2Jamie. I'm a heart mum too, dd2 (now 7yrs) was born with fallots tetralogy. Mercifully no allergy issues, although I was afraid we would have them because they are so prevalent in both families. I kept my dd2 wheat and dairy free under a year, except for a brief period when the hospital nutritionist urged me to add cream etc to her diet to build her up, (and she started to get eczema). I did have a cousin who was allergic to a heck of a lot of things. They overcame all but nut allergy with giving her very tiny amounts frequently, but for now I reckon the advice to clear out the wheat sounds good. It's not easy, and takes time to clear from the system (at least 2 weeks I heard). We tried a wheat free diet with dd1 when she had unexplained tummy pains, (at the suggestion of our GP). The pains cleared up anyhow in her case. The whole diet thing with heart kids can be such a can of worms, and no appetite either. I think we got off lightly. Wish you all the best - keep venting it's good for you!

I just wanted to add my support to you Heartmum2jamie, I hope you find the reason for the problem soon. (It may seem ridiculous, but considering you have been so careful... is there any possibility of him having a stomach bug? just a thought).

Hope you are feeling slightly better today

I can't thank you all enough! Your support means alot!

I will try ds with some organic rice krispy type cereal that I found in the free from sectiion. I am not sure how he will take to the idea of ceral and milk, he has only ever had porridge for breakfast, ever since he started solids, but it is worth a shot, if not, there is always dietary specials to fall back on , good ol' toast!

Tatt, I have been checking through ds's medical records (have a full set here!). I have just read that he has a coeliac screen done Feb 2005, a few days before the play therapists finally got him onto some solids. His bloods from then say IgA of 0.39. He had bloods done previously to that with IgA of 0.61 (0.10 - 0.50), not sure what the nit in brackets meansm that is exactly as it is printed. I have checked twice, but can't find any results for the coeliac screen, not that it would matter as he was still exclusively breastfed at the time.

suspect the junior doctor just looked at the IgA and thought there can't be a problem then, ignoring the lack of gluten in his diet! The bit in brackets is usually something like the reference range for the lab test but I don't know enough about tests to interpret it offhand.

A test when he is on a gluten free diet won't work so I guess you have to decide whether to go gluten free now and see if it helps. If you do you'll then have to go back to gluten for a test when you get the doctors to do one. Or you could see your gp now, while he's still been having gluten, to get a blood test then go gluten free until you get the result. You would possibly have to throw a crying fit to get the blood test. You'll know getting blood from a young child is traumatic so they won't want to do it.

I guess it depends how desperate you are for a break from the nappies and what you would feel if he improves about going back to a diet that would make him ill. Very tough decision to have to make, Ifeel for you.