3 yo allergy problems? Need a bit of guidance please.

[Lou'sMum]

Hi All,

We've been having loads of health / behaviour issues with 3 yo DS1 for about a year now. We finally have an appointment with a pediatrician specialising in allergies but I feel I don't quite know what to ask or push for in investigations iykwim?

DS had awful GERD as a baby and was on a PPI until about 1.5 years. He was and still is on a dairy free diet. We've had pressure to challenge him with dairy but while we are still having problems i'm not so keen.

I've decided to go armed with a list of every symptom / observation i can think of to see if there is a link to anything. The paed will probably think im mental, but i'm just desperate to get to the bottom of it once and for all and dont give a toss any more.

He has recently started pre-school nursery and has a 7 month old baby brother which could have an impact on his behaviour. He also had bloods done last year to check for coeliac but they came back clear - am I right in thinking the bloods alone are inconclusive??

So... i apologise for the lengthy post but I was hoping some you experienced mums out there could have a look and help me out a bit?

His symptoms are:

Skin
•   random red spots over torso / bum / legs (not so much a rash, clusters maybe?)
•   often breaks out in red spots on his cheeks, is flushed
•   dry skin on cheeks/chin
•   ears often go bright red
•   often v pale skin
•   dark circles under eyes
•   skin takes AGES to heal

Digestion/tummy/reflux
•   wakes up normal belly but after a few hours it can be insanely bloated and very hard to touch
•   often very gassy (though not necessarily same time as bloating)
•   does massive poos, often undigested food in, often really smelly - sour almost
•   occasionally has 'fluffy' stools (not quite diarrhea but not formed)
•   occasionally has intense tummy pain
•   still complains of sore neck or burning chest
•   red angry bum sometimes

respiratory
•   been congested on and off for a year unless has a cold no nasal secretions
•   hard of hearing sometimes
•   colds always have him coughing all day and night
•   told after recent chest infection he may have athsma

general health / well being / behaviour
•   picks up every bug / virus going and it floors him
•   has very quick and intense mood swings
•   often seems quite sad, with little interest in doing anything and clingy. He can wake up like this in the morning and it lasts all day. I say its like a fug over him. Days like this he will be distraught at the slightest thing such as dropping his fork or one of his toys going under the sofa
•   sleep is often disturbed and he wakes up sleepy

[Jimbob]

It really sounds like your son is having a hard time. When your ds was tested for coeliac did he have the full coeliac panel done? I have been looking into coeliac blood testing recently as this is something that my ds is having done at his next apointment with his specialist in 3 months. He would have done it at his last visit but James had not been consuming enough gluten consistently so the specialist wants to wait until the next appointment. In the mean time he has to have gluten in his diet each day.

A lot of your ds's symptoms sound a lot like coeliac. I was also wondering if an eosinophilic disorder is also possible as a lot of your ds's symptoms fit with that to. Having said that it could also be undiagnosed allergies/intollerances. I am not a medical professional so this is just a few ideas from things I have read about whilst trying to figure my own ds's isues out over the years.

A great website that has loads of information on is http://www.kidswithfoodallergies.org
The forums on this website are ful of very knowledgeable people. It might be worth posting on there aswell as here.

Kelly x

[Jimbob]

Here is a link for a website that explains about eosinophilic disorders.

http://apfed.org/drupal/drupal/index.php

[Lou'sMum]

Hi Kelly, thanks for replying.

To be honest i'm not sure what was checked when they did the gluten bloods, I will ask when I go next week (though its to a different hospital so doubt they will have info!)

So far h's never had any allergy testing, did your son have this? Was it useful if so? I wish I had enough money to go privately as I feel like we are fobbed off so much in this country. So frustrating!!

Will have a look at those websites, thanks!

Do you mind me asking what your situ is with your DS? I keep getting told toddlers get colds / have tantrums... blah blah blah which is true of course, but I have a gut (sorry ) feeling there is something more to it. How did you know there was def something wrong and how did you get people to listen?

Thanks again, Lx

[Buntybear]

Hi there,

There does sound like there is something wrong there, esp with the combination. The skin, digestion,immune system suggests there is something underlying there.

Have you tried eliminating any foods - soy if he is MPI, gluten if you suspect coeliac? I would suggest maybe taking a detailed food diary with you. Every food and drink, symptoms, moods, sleep, skin (with photos if necessary!). It may help YOU see a link with certain foods if nothing else!

xx

[Jimbob]

My son is 8 years old and has severe atopic eczema (although well controlled at the moment), asthma and food allergies which has been challenging over the years. James's eczema is hard to treat as it does not respond well to the usual treatments and gets out of control very quickly which has meant numerous hospital admissions.

When James was around 2 years old he had chicken pox followed closely by a stomach bug. With each of these illnesses James was not eating any solid food and was just drinking neocate (elemental formula due to food allergies) along with some water. James's skin cleared up during both these illnesses and after the stomack bug James refused to eat apart from drinking the neocate and he would eat raisins. James had feeding issues anyway as he would not accept lumpy food, all his meals had to be pureed or he gagged. James also would gag on most finger foods apart from raisins and breadsticks. When we saw his paediatrician he said that basically James had become afraid of food due to the reactions he had experienced and the pain and discomfort he had felt many times after eating. James's allergies were not diagnosed until he was 10 months old plus there was stil things at that point in his diet that we later realised were causing issues. James also had not had any formed bowel movements at this point. We had many explosive bowel movements a day and they would go right up his back and all over his clothes. At this point we were advised to keep gluten out of his diet and to just keep offering food to him but go right back to basics. This did not work as he was so afraid of the food. James was taken into hospital for a couple of days where the paediatrician and dietician decided that this was just going to take time but he would return to eating normal again eventually. James was nearly four years old when he started trying other foods again. James was still very cautious but slowly he stared trying different things and now at 8 years old loves his food. We had tried introducing gluten again at around 5 years old which caused runny mucousy and very foul smelling bowel movements, excessive wind and a swollen tummy so we removed it again. I wish during this time I had been able to get James a referral to the children's hospital in Manchester. I think we would have had much better support through this process and that they may have looked into the causes of this situation more.

James was referred to an Immunologist at Royal Manchester Children's Hospital 2.5 years ago due to his severe eczema (that the Dermatologist we payed to see privately could not get under control) and food allergies. We really like this specialist and he is absolutely fantastic with James. We recently tried to introduce wheat again as James had shown interest in wanting weetabix and also crackers. We tried a couple of times and each time it caused excessive wind, swelling of stomach and foul smelling bowel movements. I mentioned this to his specialist at our last visit and he said straight a way that he wants him tested for coeliac disease. As I said in my previous post we are now giving wheat to James everyday so that he can have the blood tests at his next visit early July.

James on the whole does not open his bowels reguarly and will often only go once a week. We do have periods where he goes frequently but his bowel movements tend to be loose and smel terrible when this happens.

James is also small for his age. He is lower then the 0.4th percentile for height and is on the 9th percentile for weight. The specialist is watching his height and weight for a while before he decides if we need to do further testing in this area. The reason he is willing to wait is due to the fact that boys don't tend to hit puberty until around 13 years old so he feels we have time on our side.

We still do not have all the answers but at least I feel like we are getting there and his specialist is willing to test him for different things to try and get to the bottom of James's issues.

Kelly x

[Lou'sMum]

Kelly, my heart goes out to you and your family – can't imagine how hard things have been for you over the years. It sounds like you have a decent consultant now and hopefully you can get James strong as he can be soon. A bit of hope and a friendly ear can go a long way sometimes too

Fortuntely, we've never really had any particular issues with feeding. Lou was an absolute guzzler with his milk as a babe and was a right chunk! He is about average these days in height and without the bloated belly would look pretty average too. I can't help compare him to other children at nursery etc and he looks pregnant half the time. That can't be comfortable

Did your consultant ever mention the EGID stuff to you? A lot of the info online seems American based, and I wondered if it was widely accepted acknowledged here. To be honest i've had so many bad experiences so far my faith in the NHS is non existent. Once GP told me he didn't believe in food intolerance (?!) and a dietician said Lou's tum was because I was feeding him too much fruit and veg. What are you meant to do faced with that?!

We were offered an endoscopy a while back because of the continuing reflux but we didn't want to put him through it. The reflux thing just doesn't seem to be going away so maybe it would give some answers there. We were seeing the head gastro consultant at Glasgow sick kids but got signed off and are seeing a paed with allergy interest at local hosp so not sure how that would work out.

Buntybear, As far as eliminating food goes, i'm reluctant until I speak to someone. Well.... I should say DH is reluctant! He loves his kids more than anything but is a bit old skool medicine and doesn't want to do anything unless a consultant says so. He's v much a bread based diet man himself and I think he's freaking at the thought of a ban! Our appt is early next week so maybe I could get a detailed diary going till then.

Other than direct food allergies/intolerance, what about chemical sensitivities/fructose etc. Are these relatively common?

So.... as far as questions go is there anything I definitely SHOULD ask?

Thank you both for taking time to reply. x

[Jimbob]

Our Consultant has not mentioned EGID with us but it is something I looked into when James was younger. James does not really have many of the symptoms now though but is something I will mention to him if the blood tests for coeliac come back negative. Here is a link for a British website regarding EGID's.

http://www.fabed.co.uk/

It might be worth having the endoscopy to see if it helps get to the bottom of the reflux. I wonder if the Gastro Consultant may have been suspecting an EGID?

I think it would be worth asking if they will test for food allergies and environmental allergies.  James has had RAST tests and skin prick tests in the past. Of course you only get positive results for IGE mediated allergies and not intolerances. You can also get false positives so it is not good to diagnose food allergies by testing alone. Our Immunologist always backs it up with a food challenge especially if there is no history of a serious reaction to the particular food.

There are people that are fructose intolerant and also people that have chemical sensitivities. I don't really know much about this area though.

Kelly x

[Jimbob]

We have been through some very difficult times as a family but James has such a happy, loving and caring nature and a fantastic sense of humour most of the time despite everything he has been through. I think this has definitely made things a little easier as its very hard to feel sorry for yourself when the person who is suffering stays so positive the majority of the time. I have learnt a lot from my son and he is only 8 years old. James's sister has been amazing with him over the years and she thinks the world of him and he does of her. They are not only brother and sister but great friends to. Having said all this it is sometimes still difficult to deal with but we get through it. I think it truly helps that we trust the specialist that James sees now and we feel like we are getting somewhere.

I think it is a great idea to do a detailed food diary as it just might show something that otherwise would be missed. I also would be tempted to take some photos of his bowel movements and the skin rash that your ds gets.

Kelly x

[Buntybear]

Other than direct food allergies/intolerance, what about chemical sensitivities/fructose etc. Are these relatively common?

I don't think these are very common but of course cannot be ruled out. Olly can react to fructose but he suffers with bloating and wind. We keep high fructose foods to an absolute minimum.

[Jimbob]

Just wanted to wish you good luck for the appointment next week. I hope it goes well and the paediatrician takes your concerns seriously.

Kelly x

[Lou'sMum]

Thanks for your support, it really helps to have someone to bounce ideas off of.

Typically, after the gastro paed signed us off and referred us to allergy (my suggestion... argh!), he's been showing some really refluxy symptoms again. I'm guessing this is all related to the food issues, I just hope we get taken seriously. Such a frustrating process.

The hradest thing for me is when Lou's mood is just plain sad. He seems so uninterested in life itself, really cuts me up. I keep geting told it's just a phase but we see glimpses of a happy outgoing boy and i feel it's something more.

I will def go armed with pics and if I can keep a detailed diary (really struggle to be organised with a 7 month old refluxer too, but thats another story) I will. I'm assuming I will get asked to do that in the first instance if I haven't?

From past experience any GP/consultant i've met doesn't like it when I suggest things (i.e they think i'm telling them how to do their job!) or they roll their eyes when you say you've looked on the internet. Is there any way you have found to approach this without the eye rolling? Or have I just been unfortunate in the people I have seen!?

Keep everything crossed for me! and thanks again. xx

[Jimbob]

It can be hard to ask GP's/specialists questions regarding your childs symptoms as, like you mentioned, they can feel like you are telling them how to do their job. I don't feel this way with the specialist that James has now he is very down to earth and is willing to listen to and take into consideration anything that you feel may be an issue. With previous specialists we have seen it was not this easy. They would often dismiss concerns I had over James. I did learn through experience that the way you asked a question did make a difference. For instance if I was wanting to bring up the possibility of Coeliac then I would probably start by saying that a friend of mine has a niece with Coeliac and she menioned that her niece had ver similar issues as my son before she was diagnosed. In your medical opinion do you think there is a possibility that my son may have Coeliac? Obviously you would ask something like this once the Paediatrician has taken details of all your ds's symptoms.  This kind of approach I found was less likely to get doctors backs up and you get to put the idea into their minds. It does not mean they will consider the possibility but it is possible and they don't think you are crazy.

I am sorry to hear that Lou's issues are having such a big impact on the quality of life. I really hope the appointment next week gets things moving in the right direction. I will definitely keep my fingers crossed for you.

Kelly x

[Jimbob]

I assume you have had the appointment now as you mention in one of your posts that it was early in the week. I really hope it went well and you came away feeling positive and not that it was a waste of time. We have been to so many appointments over the years that have just seemed pointless.

Kelly x

[Lemonthyme]

Sorry I'm posting without a whole heap of first hand knowledge but I have been told in the past that eczema, asthma and food allergies are all genetically linked.  My son has eczema and some of the symptoms you describe sound very similar to that.  I've noticed when I include lots of good fats in his diet it does improve but with all the other symptoms I guess the expert is your best bet.  I haven't noticed it with my son but I have been told that eczema can flare up with food allergies so it does sound sensible to link them all.

[Lou'sMum]

Hi all,

Yes, appt was earlier this week and tbh, i'm not sure what to think! The consultant was very nice but we are no further forward really. She said it didn't sound like he had any food allergies as his reactions were not immediate, so not telling anything I didn't already think. He is getting tested for inhaled allergies next week and also milk. After this testing we are getting referred back to the gastro paed and a dietitian. I got the impression that because we weren't dealing with immediate food allergy, that there was no more she could do to help. We did speak about food intolerance etc, but i'm not sure who we would see to get help with this. I was a bit confused tbh, but seeing her again this week so will have more questions.

i'm not sure what blood test was done on Lou for coeliac, but they did come back clear. I queried if this definitely ruled it out as I had read you can have a false negative if you were IgA deficienct, but she said that's hugely unlikely (although thats not what I read on coeliac uk website... )

She was really pushing for us to try a little bit of dairy with Lou and i explained i didn't want to while he still had these symptoms. 1. because I don't want to make hi more uncomfy than he already is and 2. how am I going to know if he is reacting when he's all over the place as it is. TBH I couldn't care less if he never has any dairy again! What is the big push in the western world for drinking milk!!!!? I did say that his milk intake was not my main concern at this time... grrr.

So... take from that what you will! I feel a bit deflated, but I guess at least we will find out if he's allergic to some things.

Thanks for checking in kelly! x

[Lou'sMum]

oh, and she looked at me as if I was nuts when I mentioned EGID and he we are giving a stool sample for H pylori.

One thing that did upset me was that he dropped from upper 75th to lower 50th centile for height . I know some mums would be joyous for their wee ones to be up at 50th, but should I worry that he's dropped? He's just over 3...

[Lemonthyme]

I think for some kids it's normal to follow growth curves and others to bounce up and down.  My son is hilarious, you can see him getting chubbier and chubber then literally overnight it's like he's been stretched!

[Jimbob]

I am not quite sure of what to make of your appointment either. I think it is good that he is being referred back to the gastric paed as this may get to the bottom of his reflux issues.

I can completely understand why you don't want to trial milk at the minute. I don't think it would be a good time either. You don't have to be consuming dairy to have a balanced diet.

How long ago was it that your ds was measured and on the 75th centile? Was your ds standing up straight with his heels touching the wall and his head up straight when he was measured at his last appointment? My ds was between the 50th and 75th centile when he was born. By the time he was 36 weeks he had dropped to the 2nd centile. At 21 months he had dropped to the 0.4th centile but none of the medical profession seemed bothered by this. Fast forward to 8.5 years old and his specialist is concerned.

I hope the appointment goes well next week and you get an  appointment with the gastro paed son.

Kelly x

[Lou'sMum]

Kelly, I cant believe that no-one was concerned about your son, you must have been beside yourself. Seems like such an obvious indicator that something isn't quite right. I remember when Lou was a tiny baby and I KNEW he was suffering with reflux, but we were dismissed (at least I was dismissed as a neurotic 1st time mum) for weeks. It really pushed me over the edge and i ended up getting PND. Horrible time.

a wee update on where we are with Lou...

Had skin test for inhaled allergies and milk and came back fine (no surprises there!) Also took blood to check coeliac again and iron etc, waiting on results. Took 2 stool samples to check H pylori and gut inflamation, waiting on results of that too.

Consultant also wants to send the wee guy for an ultrasound... has anyones LO had this? I just got a letter so didn't have the chance to ask what they were looking for. I'm quite pleased that this lady is doing all these tests just now so we don't have to wait for gastro to prob do them, coz no idea when we will get to see him. So frustrating.

Just a thought though, but could the extreme bloating contribute to the reflux? All the pressure in his tummy could push things up? Obviously not the reason why he had it as a babe, but why it's continuing into his 3rd year??? I just know the consultant will want to give him Losec again, but I wonder if that actually caused us some probs... we need acid to digest our food after all!

x

[Jimbob]

This update sounds really positive. The doctor seems interested in trying to find the cause for L's issues. James has only ever had an ultrasound on his leg and that was to take part in a study regarding epipens. I am not sure what they would be looking for with the ultrasound but if you want to know before the appointment you could always telephone and ask.

Kelly x

[Buntybear]

Sounds like your doctor is being really thorough which is a good thing! Not sure what the ultrasound is for? Maybe post on the reflux board and see if anyone has had similar?

[Jimbob]

How is L at the moment?

[Lou'sMum]

Hi! How are things with you Kelly?

TBH Lou has been doing a bit better in terms of bm's and bloating the past few weeks, but boy has his behaviour gone crazy! I'm sure its mostly down to being 3, but sometimes I wonder if its a deeper issue thats affecting him.

Ultrasound showed food in my wee guys stomach and small intestine after a 6 hr fast so obvs got a problem with digestion. Also said liver was slightly enlarged but gave no indication of what that might mean. Now just waiting for Gastro to send appt but god knows how long we will wait.

Hope things are going well at your end?  Lx

[Jimbob]

It is good to hear that the bloating and issues with bowel movements has eased off. It is good that the tests have shown issues with his digestion as at least that gives the specialists something to work with and try and get to the bottom of Lou's issues.

James is doing ok. He is still having issues with bloating but he will be tested for coeliac on the 9th July so we will see what that shows. Not sure how long it will take to get the results but I can ask that on the day. James had a formal milk challenge in hospital on the 6th June and had a ana reaction unfortuanately. The doctor and nurses were great though and got things under control really quick. The allergist came to speak to myself and James. It was not James's specialist but she is from the same department. James will be doing a baked milk challenge next which is a slow process that has lots of stages. Each stage wil be carried out in hospital. It is possible that it could help James outgrow his dairy allergy.

Kelly x

[Lou'sMum]

((HUGS)) That must have been really frightening for you all Kelly, how did James cope with his ordeal? Lou been a trooper mostly but he gets so worked up with the testing, the ultrasound was a nightmare since he was really hungry AND scared. I think I spoke too soon too coz his belly is really round again and he's gassy as ever.

As far as the coeliac test results go.... we're still waiting!!! I called today and the Consultant's secretary said it can take 6 weeks for the results! Hopefully your area will be a bit better than that and hopefully you can cross that off the list. It's really not a fast process is it.

I've been looking into supplementing Lou and Ali's diet with probiotics, fermented food and bone broths etc. The allergist didn't think Lou had a Ige reaction to anything so hoping I can get the gut a bit happier naturally.

Keep me posted on how things are going. Good luck with the baked milk challenge. xx

[Jimbob]

To be honest James did really well but I think that was helped by the medical team treating him so quickly and being very reassuring. James got over the reaction quickly and whilst it was difficult to see James like that (although much better in a hospital setting than it was with the first ana reaction that he had) I stayed calm and let the medical team do what was needed. To be honest even when James has had ana reactions before I have always stayed calm at the time which has meant I have been able to treat James and call an ambulance asap. James is very good when it comes to having procedures done but then the Specialist he is under is very god at explaining things and the specialist nurses are fantastic. I know James does not particularly like having blood taken but he lets the nurses do it but he does go a little tense but again they have a way of talking to James and getting him to relax.

I hope supplementing Lou and Ali's diet helps and it is certainly worth trying.

Kelly x

[Jimbob]

How is L? Have you had the results from the coeliac blood test yet?

James had blood taken on Tuesday for the coeliac blood panel to be done. The nurse seemed to think we would have the results pretty quickly but we will see. The paediatric Dietician has taken James off gluten anyway. She feels that James has obvious symptoms whilst consuming gluten and she said it does not really matter if it is coeliac as the treatment is the same. The immunologist is willing to diagnose coeliac if the blood panel comes back positive without doing a biopsy as James was having symptoms. So now we just wait and see but either way James is on a gluten free diet.

Kelly x

[Jimbob]

How is L?

James is doing much better on a gluten free diet. We are getting into the swing of things now and it is becoming easier.

Kelly x

[Lou'sMum]

Hi Kelly!

So sorry I missed you're post. Glad to hear things better with James going Gluten free. Is it second nature now? Are things still improving? Did you get the test results in?

L going for his scope on Friday. He is still a really bloated gassy wee soul most of the time, and frustratingly his symptoms come and go in waves it seems. Hopefuly we will get some answers from the scope and we can take it from there.

X

H

[Jimbob]

James tested negattive for coeliac disease but wheat did show up as a positive on his RAST test. We are still avoiding gluten at the minute as James is so much better plus we all feel better foor it too. Cooking gluten free has become easy now but we cooked most things from scratch anyway so it did not take much effort really.

I am sorry L is still struggling and I hope the scope shows something useful.

Kelly x