There's something wrong with my baby but I don't know what

[Prusik]

This might just end up as a massive vent. Probably easiest if I start from the beginning.

Ds was born at full term. Simple birth. 6lb 6oz so not a massive weight, but ok. He was admitted to hospital for some sort of unknown reason which over three days, became clearer that it was an infection. It was later identified as a chest infection. We had a week in hospital (with a stint in special care), were released for 36 hours and then admitted into children's ward with breathing difficulties. Again, it was subtle but his oxygen levels.were low. Three weeks later, after lots of tests they decided it was reflux which was aggravating his airways. With treatment for reflux his oxygen levels improved.

After a few more minor hospital admissions, I went to my GP at the end of my tether because we were having extended periods of intense, high pitched screaming. With a few hospital visits and GP visits we were put on a formula for mild milk allergy. Within a week the screaming stopped.

These days, Ds is ten months. He's been constantly poorly since the beginning of summer. He has black rings around his eyes. Sleeps far more than I feel he should. Just generally looks unwell. Constantly had a crusty nose. Eczema on his head and face. We give calpol and nurofen far more regularly than I'm comfortable with and my instinct just tells me he's not right.

GP says as long as he's hitting his milestones and gaining weight then as far as they're concerned, he's fine. But I really don't think he is fine. There's nothing concrete, just instinct. My amazing health visitor has left. She did lots of extra home visits and always reassured me that she didn't feel like I was a paranoid mum and she too said she understood my concerns. I just don't know where to turn and don't know what's wrong with my baby

@Hallloumi your post is really helpful, thank you. We're stuck between a rock and a hard place at the moment because I do feel like there may be improvement if DS were to be moved onto a fully dairy free formula rather than just a hypoallergenic one. However, the GP's at my surgery don't seem to want to do that - they were reluctant to put him onto nutramagen in the first place.

He did really well when he was exclusively on nutramagen but we've had nothing but problems health wise since we weaned him. We were advised to wean him at 17 weeks but we kept him purely on veg until after six months. At six months then introduced things like bread, eggs, etc. I'm not convinced he has any soy - unless bread contains soya. We make everything from scratch as we both have milk allergy and it's just easier. Mum says the DS's symptoms present very similar to how I was as a baby - I wasn't diagnosed until I was about 5. I think DH was nearer a teen.

I'll book another appointment with the GP and hopefully he'll be willing to do something to support while we're waiting. My health visitor is also coming back in a couple of weeks to "check up" on DS.

I really need to get this cracked as DS2 is due in 10 weeks and I'm really struggling

I meant to add my gp surgery is in special measures so it's all locum doctors

Loads of bread products contain soy OP - and almost all shop-bought loaves do. Occasionally you can get a seedy one that doesn't (for example there's am Aldi seedy one that doesn't, and a Tesco Finest, but none in Sainsburys and all the Hovis/Warburtons/Kingsmill etc. contain soy). You're usually okay with part-bakes, pitta bread, wraps and bagels and about half of crumpets (usually cheapy own brand ones are fine) so that's what we use.

FYI on formulas, as far as I'm aware the only truly dairy-free formula is soya based; don't use that! The other are all hydrolysed (hypo-allergenic) to various extents and you have to find the one that's right for you. To be honest I couldn't get ds to drink ANY of them (bf up until weaning) but luckily he really took to food so we just used vitamin supplements alongside hemp milk (oat milk another fortified alternative) and bf once a day at bedtime. I know they say formula up until age 1 but that just wasn't going to happen for us - or more frequent bf as I was back at work and he wouldn't drink expressed bm either! - so I just made sure ds had his vitamins and lots of fat in his diet. He never suffered for it growth-wise.

A small point but if they are all locums some may be regular locums so you may still be able to see the same doctor. Also don't assume all locums are bad GPs- there are lots of great GPs who do locum work (because the regular job is so hard these day, because they are newly qualified so sometimes more up to date or other good reasons). Also locum doctors are often more likely to refer as they may be less able to follow up as an alternative (I certainly did this when I used to do locum work).

My latest plan is to arrange private healthcare insurance which looks to be around £50 per month for all three of us

This will all count as pre existing conditions so won't be covered. You're not allowed to buy health insurance to specifically investigate issues that havent been dealt with in the public system.

If you feel he needs to be dairy free, why not just make him entirely dairy free? If you can't afford dairy free formula then at ten months he would be better off with no formula than one that is making him ill. He's not a newborn, formula is not essential.

Ask for coeluac testing for sure. Paediatrician should run basic blood tests for corluac ige etc.
Poor nutrition due to coeliac or allergy can impact development for sure. It did for my dd.

@Hallloumi you're 100% right, I shouldn't criticise the locums. One doctor is placed there for six months and he's really lovely. He's the one that referred me to the paediatrician. The other locum just said "speak to your health visitor"

Just thinking out loud on this one. DS was moved onto formula for mild milk allergy at about 12 weeks. He was weaned at 17 weeks due to paediatrician advice. We weaned exclusively on vegetables and then slowly added meat and egg yolk until about 6.5months. (we were guided by a book called Super Nutrition for babies).

During the period of 12 weeks until 6.5 months he was pretty healthy, moved up to the 75th percentile and was thriving. 6.5 months, incidentally, is roughly the start of summer, which is when he started struggling with weight gain, tiredness, illness, etc.

this isn't a drip feed but has occurred to me after a conversation with a family member today

So i'm thinking that once we introduced egg whites, gluten and soya, that's when he went down hill.

We're going to go back to this book and use it to guide us again. It really does keep things simple and the 10-12 month chapter focuses on giving foods which boost the immune system. DH has made some really tasty coconut milk custard things and some sweet potato fritter things which will be really good snacks and we'll see if we can build him up by getting a load of goodness into him without the complication of allergens. Generally allergies in infants don't really stay into childhood and adulthood anyway so we can address it later.

It feels good to have some sort of plan to put into action and hopefully will make a difference

We then relaxed his diet and introduced bread, egg whites, etc.

Hi was encouraged to join mumsnet by a friend. So just joined today. So hello to everyone. Im really worried bout my 18 month old son. He never responds to his name or when being spoken to. He does not seem to have interest in toys, playing, etc. He just wants to walk up and down the house. I have tried to encourage him to play etc. He had a hearing assessment yesterday and he is now being referred to an audiology paediatrician. He can hear certain noises but not others. They said his ears are healthy so im really worried as to what is wrong. He watches cartoons on my ipad and knows how to open youtube and choose different cartoons. He just doesnt seem interested in anything or gaining pleasure out of things? Im getting more worried every day

Hi Kazzy, in order to get the best advice for you and your son you need to go back to the main Parenting topic board and click the option to start a new thread in that topic. Most mumsnet users won't see your query on here as this is a specific thread, but just cut and paste into a new blank thread. I'm sure someone will have some good advice :)

OP I think that's a good idea to go back to a basic diet to see if there's improvement, then introduce potential allergens one by one and monitor for changes. That's what the literature I have recommends to do when the allergen is unknown. Don't be shy of vitamin supplements though - even unrestricted diets for infants can be insufficient in things like vitamin d and iron, so with a restricted one it's even more important to cover the bases. Also don't be scared of fats! I hope you see some immediate improvement.

@RatRolyPoly really interesting you mention fats. The book is pretty keen on good fats it's actually a book I really recommend

I've also put DS on vitamins and probiotics this past week

Thank you. Being new i cant seem to navigate round website very well

The problem with coeliac (no idea if baby is) is that you need to be eating it for 6 weeks before the test - if you take it out an and have to reintroduce later it could be worse.

Are you keeping the daily diary ? I’d be doing that and weighing every day.

Keep up the gluten.
You can still cut dairy and soy.

Very classic coeliac symptoms so ask for the test.

Sorry haven't read the full thread, but have you considered enlarged adenoids and tonsils? This is what my four year old has (on the list for surgery) and she has:
-dark rings around eyes
-poor quality of sleep and therefore daytime tiredness
-worse / more frequent colds
-fairly constant cough
-had bad bronchiolitis as a baby
-ear issues (which could look like headaches in a baby)
-bad reflux as a baby

Just a thought

Also just to add - my daughter has had nearly symptom-free periods too (usually during a growth spurt when her adenoids and tonsils become smaller in relation to the rest of her)

@Muir23 really interesting - DH has enlarged tonsils and really suffers along with it

So we've had a pretty awful week health wise thread here
And it looks to continue into next week. Currently wondering whether it's infected eczema.
We're also a week into a super food type diet and already have noticed an improvement in his energy levels and complexion. We've cut out gluten and soya temporarily.

You need to have coeliac tests while he still eating gluten

You're right. I don't think they'll test for celiacs though. I've felt thoroughly unsupported throughout this whole process.

Ds was giggling today. Full belly laugh giggles. It's been a long time since ive heard that from him.

We're going to stick with this adjustment for now and readdress when his digestive system is more mature and after I get over the.hump of my newborn coming due in 7 weeks now

Just coming back to reawaken this thread.

We had our pediatric appointment last week, finally, and it was alarmingly unhelpful.

The consultant took one glance at DS and said "he looks ok to me".

We have to cut out ranitidine and put all foods back into his diet within three months.

This is a scary thought. DS has been the picture of health since we adapted his diet. The book we're going by introduces rice and oats at 18 months so we were hoping to follow that with the idea that his system was just too immature to cope with the variety of foods he was having.

I'm terrified that if we follow the advice of the pediatrician we'll just be doing something that we know will make DS poorly. I now have a 4 week old newborn to consider in all of this too - as well as trying to keep my sanity. I really can't have a 13 month old who's screaming in pain all hours and constantly sickly and look after a newborn.

I just think of course he bloody looks fine because we've obviously identified the cause of the problems he was having and fixed them ourselves.

You don't have to do what the paediatrician says!

S/he isn't a nutrition specialist. Did you even get an explanation of what this was the advice given?

If you think the diet you've got him on works then stick with it.

Nope. We were just told that at his age he shouldn't need ranitidine (we actually tried to cut it around Christmas and it really didn't work). And that for nutrition he shouldn't have an exclusion diet.

I agree with all of this but just don't feel good about it when the changes have been so obvious. Even friends and family see the difference in him

"At his age" wtf? How come there are adults who take it then?

If you can face the battle I'd insist on a referral to a dietitian instead. Keep a food/symptoms diary (backdate entries using this thread as a timeline for context). Make it clear that without expert nutrition advice you cant be expected to change his diet back from one that works to one that caused so many symptoms!