Baby still lethargic

[strawberrycake]

I've been to A&E thursday and friday night with DS (sent by out of hours GP). He has a fever, coughing, vomiting, refusing feeds and coudn't stay awake. Send home with diaoralyte, renetadine (throwing up streaks of blood) and told to give him 5ml by syringe every 5 min, all he could keep down.

There's some improvement today, no temperature. I fact he scared me the other way, temp fluctuating from a low of 34.5 up to 35.8. Quite cold despite blankets/ being over-wrapped. He has woken, but cries for sleep after 10min. He's wheezing still, though blue-inhaler helps. BArely sick, just cough/ gagging up small amounts. No more diarhhea, seems constipated. Working hardly than normal breathing, chest sucking, as noted at hospital.

The things concerning me are:
-cold temperature, since last night
-effort breathing (not dramtic, but more than normal)
-persistence refusing ANY feed. Very very tired of force-feeding water. He gargles what is syringed in and blows raspberries to avoid it.

Trying to ride it out and monitor him without being a fussy mum, but I'm wondering at what point to take him to out of hours GP. Or if I should at all.

sirzy, what's annoying is A&E said he needed a referral. But GP must do it.

That's rubbish - they could admit him to the children's ward and have him seen by the paed.

Take him back. Now.

I know this isn't helpful right now, but it sounds like you need to change GP in the longer term, that's rubbish.

I also think you should go to a different A&E, I know you're being fobbed off but your baby does sound ill. I hope he's OK.

He's sleeping calmly. Blue inhaler and piriton has settled him, plus he ATE some dinner! Thank fuck. 6 spoons of veg. It's a start.

YEs, need to change GP.

Long chat with dh, we'll wait for referral in March(as long as it happens, I'll chase it tomorrow) unless he goes downhill suddenly. We're chasing our tails and it's not being useful. I'll review the situation daily obviously but he's picked up loads over the course of the day. He doesn't eat enough.

I've decided though syringe feeding is over. IT's causing way too much distress. If he still doesn't take fluid then it's A&E.

I feel that unless he is wheezing badly, or dehydrated A&E aren't of use. He's able to sit up again now and crawl. Earlier this week he didn't have the strength to roll or lift his head on his front, and A&E discharged him in that state.

I really do hope he's on the mend now, he sounds like he's improving.

Your a and e sounds as rubbish as your gp! Do you have a kids a and e anywhere nearby?

Change GPs, yes, but take a note of everything that's happened with her so far (& might happen between now & whenever you've got the change sorted out). Then when the baby's better and you've got time and space to think about it you can make a formal complaint - she sounds dangerously dismissive of your concerns, and she's already missed one serious problem for you. Hope your little one picks up soon.

He's perked up tons thanks, 7oz milk, some fruit puree and a bit of spag bol today! Smiling and bouncy.

I'm in two minds about complaint, wondering what I want/ will get out of it and how it will impact on his care.

Strawberrycake,

I think it is a bit of a tough one.

I think A&E checked all the things a baby should be hospitalised for: oxygen sat, breathing, neuro signs, hydration etc and, reasonably, discharged your son.

To be honest, your clear competence in looking after a sick child was probably a deciding factor in discharging you!

I am not sure what more you could want. In the old days a doctor would have followed up with regular house calls to check on you both, but, under the current NHS, that is never going to happen.

As for the regular illnesses, I think it is a bit of a vicious cycle. They get an infection, lose weight and are then vulnerable to getting the next infection. Last winter our son (now 20 months) got a viral illness at least once a month, as he was also v skinny through reflux. This winter (touch wood), he has not been out of action for more than a day with illness. Hopefully, the same will happen with your son.

For peace of mind, you could ask your GP to refer him to a paediatrician, or you could pay to go privately. On the other hand, the paediatrician will be presented with a well child and the only way to see if there is something going on "under the bonnet" will be a series of invasive tests. If your instinct is telling you that is the lesser of two evils, I would press for it. Otherwise, the winter virus season is going to come to an end in a couple of months and he will be much stronger next winter.

Thanks Larry, I know what you mean about A&E doing vital signs but I feel like I'm in a difficult situation. He on a long term basis doesn't eat enough to even maintain weight, let alone grow (He weighs less than 3 months ago) and hasn't doubled his birth weight at 9 months. He looks like a 4 month old. I feel stuck as the GPs aren't specialists but he's not 'urgent'. I do though feel I'm watching him slip and slip and I want the system to have a way of meeting his needs BEFORE he's an urgent case. I have a pead referral for March. I feel awful as a mother seeing him loose weight and be sick coughing night on night. He's coughed/ wheezed since 4 months old and it just gets worse. I worry he's on track to needing urgent treatment and I want to avoid this. I don't have a clue tbh about his allergic reactions, which get worse or his possible asthma or why he eats less each bloody month. I'd like answers. I'm not a fussy mum but I'm feeling it's going further that what is normal baby illness.

Sorry to clarify more about eating, he's perked up but I still feel this isn't normal. Today is average:

3am - 2 oz milk
7am - 2 oz milk
11.30 - pasta/ chicken 8 spoons
4.30 - veg puree 6 spoons
7pm - 3 oz milk

Surely at 9 months this isn't ok and on a track down? Obviously he's offered more, an it's better than a few crisps and a rice cake in a day.

Did not realise that there had been no weight gain for 3 months. What centile is he on?

When our son was really skinny (0.4th centile) we were advised that all calories are good calories. I think that is good advice. When adults are sick they are given a special food which is almost pure fat. Fat is the densest in calories. Does he like cake and/or white chocolate? The foods you describe above are healthy but actually very calorie light (especially veg puree). Unfortunately we are now in the position where he likes chocolate and cake too much! But that is a small price to pay.

Could you afford a private paed? I know a good one in SW London if you are interested. There are also specialist paediatric nutritionists. Maybe you should also get referred to one of those.

I am maybe a bit off piste here as I have no experience of doing this but would it make sense to call the hospital where you have the march referral, explain the urgency of your son's case and ask if he could be moved up?

I don't know which hospital you went to, but I do know that the royal free in hampstead has a reputation for having a good paeds a&e and consultant lead initial care for referrals from a&e to paeds.

If you need to go back to a&e it might be worth trying there (unless that is where you went last time).

Hth.

Strawberry - it's nowhere near enough intake and this has been going on for so long now. I'd do what larry suggests. Call the paeds secretary - tell her what's been going on and that you're worried, tell them how much he's lost. They'll be doing a paeds clinic most weeks and surely they could squeeze him in.

What happens when he feeds - does he refuse, or seem uncomfortable, out of breath?

Strawberry,

I have reread the thread.

Firstly, I don't think anyone here (including me) is a doctor, and a doctor (and dietician) is what you really need. However, from experience and having done my own research, I do have some knowledge.

Weight, in and of itself, is not that important for health, until it really falls off the scale. Second centile is horribly skinny but not in any way life or development threatening (even at the 98th centile for height, which makes the effective "bmi" centile lower). What you say about his energy and development (when he is not sick) should be comforting to you. The lack of weight gain over 3 months is much more concerning and merits further investigation.

I hope I am not telling you something you already know but, when dealing with a skinny baby, you need to reverse the "health" rules for adults (or fat children) who need to worry about their calorie intake. In order of magnitude, starting at the top:

Fats: 1g=9 calories.
Simple sugars: 1g=4 calories
Protein: 1g=4 calories
Full fat milk: 1g=.66 calories
Complex carbs (rice, pasta, potatoes: 1g=1-1.5 calories.

The above are termed "macronutrients". There are also vitamins and minerals essential for metabolic processed within the body; these are termed "micronutrients".

I read a paper which suggested the absolute minimum a baby needs is 85 calories per kg per day. So, for your baby (who I am guessing weighs between 5 and 6 kg), he would need around 500 calories/day as an absolute minimum.

From what you say about your baby, he is getting around 140 calories from milk and around 100 calories from the rest (assuming your spoons are teaspoons). As you can see, this is half of what he needs. In addition, he will not be getting enough micronutrients.

Firstly, the micronutrient problem is soluble by supplementing with a decent vitamin supplement which you can buy over the counter. We used Abidec (and still do sometimes) but there is plenty of choice. Just chat to a pharmacist about what he/she would recommend. As for the macronutrients, you have to introduce more fats into the food. What kind of milk is he drinking. There is a formula (available on prescription) which is 100 calories/100ml. I seem to remember it is called "high energy". That is 50% higher than normal milk and is suitable for babies struggling to put on weight. Secondly, if he likes choc, cake, ice cream, give it to him! As you can see, you are getting twice as many calories per mouthful as just about anything else. Add cream and/or butter to pasta etc.

Sorry for the long post but we had very similar problems and I do feel for you.

Thanks Larry for the effort you've put it. To answer a few points:

-he has abidec/ calcium supplements prescribed (and piriton/ ventolin inhaler/ eczema creams and 4 sets of anti-biotics for his chest so far)
-he's allergic to dairy/ soy so is on Neocate (only available option). Seems to also be more allergies brewing which are not yet indentified, restricts his diet.
-many high fat food e.g. cake/ choc etc. has dairy/ soya in
-I have attempted to give higher fat foods, what I list is simply what he agreed to eat. I never force food on him. I food him bloody loads some days!

He is content after solid food but screams after bottles.

He does gain weight but then loses, it yo-yos. Overall there is no gain over 3 months. It has taken 6 months to gain just over 2lb.

Finding the £ for a private pead is a last resort option. We would struggle to the detrement of brother and sister.

I used to stir olive oil into puree btw for calories, but he's off this at the moment.

I do have a feeling he doesn't digest well. I don't remember his brother's/ sister's nappies looking like his. If not for the smell I could put it back on the plate some days with little obvious difference!

Poor your family strawberrycake, you are doing very well to keep your hair on, as they say up north.

You shouldn't have to find the money for a private paed - you've paid your taxes like everyone else FFS, and frankly I cannot believe they are making you wait a whole month, till March. I think that's disgusting. I would definitely ring the paed's secretary and ask if there is a chance of him being seen sooner, and explain to them what you've said on here about his weight gain and food intake. I have found that once you are 'in the system' so to speak, and have an assigned paedeatrician, you can often deal directly with the hospital - ours encourages us to phone/ email if we need to.

A similar story to yours with a positive ending relates to a friend of ours - their little girl had terrible nappies, failure to thrive, very unhappy, etc. She was 2 1/2 when the paeds finally diagnosed her with coeliac disease and she has been much better since then. I have no idea if your boy has a similar issue, but I thought it might give you hope that eventually you'll get to the bottom of this.

PS I would definitely mention the screaming after bottles. I would have thought this would have had them looking at issues like GORD (e.g., significant and painful reflux), if they haven't already. But I am only guessing and in no way medically trained.

Just thougt I'd add my sympathies.

We have just gone through almost an identical situation here. One of my twins got rsv and bronchiolitis and I honest to God thought he was going to fade away in front of me. He was admitted for one night where he had oxygen then discharged the next day. I was in no way happy to take him him in the condition he was in but I didn't have any choice. We ended up going in not be checked every day as I was so worried.

I'm not normally a panicky mum at all but by the end of the week he wasn't eating or drinking and only peeing a tiny amount twice a day. We were STILL sent home.

Day by day he has perked up and although he has lost over a pound in two weeks and only managing an average of four ounces of milk a day he is back to eating solid food again.

Hopefully your little chap will get back to normal soon. It sounds as if he has had rsv too, I am surprised they didn't do a nasal swab to confirm - it only takes a few minutes to do.

I'm kinda resigned to waiting now I must admit. I've chased and chased and from experience I'm not holding out much for the referral, although I'm open-minded. Obviously should things become urgent I'll seek urgent care but if he's happy we can deal with things. I've got stressed before chasing people and got nowhere.

Geepers- it probably was simply rsv or whatever, it's just on top of other health issues he struggled particularly hard. It's the under-lying issues I'm bothered about.

I feel like keeling over, he's now eating 2oz every few hours at night then having big screaming fits. I'm glad he's eating but it's killing me!