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

[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