Desperate for help

[annielennoxstuckinmyhead]

Looking for some advice and I'm literally at a loss.

My son will be 12 weeks tomorrow. He was 3 weeks early (if that's of any use).

I'm completely at a loss now with feeding. When he was born he latched on to me once straight away. After that he never got the hang of it again properly and I tried for a good few weeks. I ended up expressing along side and even in the hospital he struggled with the teats. He was checked for a tongue tie and they said he was fine.

When he was about 4 weeks old, he suddenly went a purple colour (mottled skin everywhere) and then a red rash appeared all over this chest within five minutes. Luckily I live down the road from the GP and they saw him straight away. His stools where dark green. Originally the GP made us try lactose free formula for 2 days to see if he settled and he still didn't. So she said he had a dairy allergy and was put on hypoallergenic formula. He continued to refuse feeds and was put on gaviscon as well.

Fast forward to two days ago, after going back and forward to the GP concerned about his weight they gave him a different medication to take instead of gaviscon. That night, he had a similar reaction to when he was diagnosed with dairy allergy. I called 111 and they sent an ambulance. He spent the night in a children's ward and the consultant said he's not put on any weight since the beginning of Jan as I had suspected and told the GP several times...

The consultant also said they didn't understand why he was diagnosed with a dairy allergy based on the previous symptoms. He was diagnosed with having a viral wheeze and nothing was mentioned again about his allergy doubts. I was told to continue on the formula.

I've tried contacting my HV but she's on annual leave and didn't respond to my concerns so I have to wait over a week to be able to speak to her.

I'm literally at my wits end with this. Feeding one ounce every hour or so because he screams and spits everything out. I can't cope anymore.

If anyone has ANY advice I would really appreciate it because I feel like no one is listening to me, and he's now at the bottom of his expected weight gain chart. 😭

I can totally understand why you are struggling with this OP

Can I ask who checked for tongue tie? It might be worth getting it checked again, as many GP/HV do not have the training or skills to know wha they are looking for.

Can you just clarify for me which formula he is on now too please?

@JiltedJohnsJulie thanks for replying!

He's currently on nutramigen. The HV came yesterday and agreed with all my concerns. She's referring him to a dietitian ASAP as he's 10lb and should be almost 13. She's also going to attend a further GP appointment to raise further concerns about his wheeze and not being able to latch properly still. 😞

I would ask for a referral to a paediatrician if he is on the bottom of the charts. Dietician will be helpful with regards to his milk allergy but won’t be able to rule out any medical issues.

Without question I would ask for an urgent referral to a General Paediatrician at your local hospital (even better to a tertiary Children’s Hospital if you have one). I would also ask for a referral to a hospital dietician and a speech and language therapist to assess his swallow.

Just a jumble of thoughts but;

• have any of the health professionals actually watched him complete a whole feed? He may well have a disorganised swallow or silent reflux which could lead to aspiration (potentially accounting for his blue mottled episodes and his wheeze, both of which can occur with swallowing issues and reflux).
• my babies had significant tongue ties which were glaringly obvious to me but which no less than four midwives and a paediatrician dismissed. Eventually a specialist midwife looked and confirmed they pretty significant tongue ties and after snipping our feeding problems disappeared. I say this because in my experience tongue ties are often missed, so I would recommend you get it checked again.

• what sort of feeding routine do you have (ie frequency and volume)?
• what medications is he on?
• what weight is he?

Hope that doesn’t sound like I’m barking questions at you! Just want to see the bigger picture! X

And can you give a bit more detail about the episode when he was four weeks old? Had he had formula for the first time when the mottling etc happened? Had he just fed?

The formula he is on is made with cow’s milk, it’s just been hydrolysed, to partially break down the proteins. I’m not saying the Paeditrician is wrong, but it might be worth reading this on Cow’s Milk Protein Allergy (CMPA) from Allergy UK and seeing if any of the symptoms sound the same.

If it does sound like this could be what’s going on, ask your GP for a completely DF formula and an urgent referral to a Paeditrician.

It’s totslly possible that the wheeze could be allergy related too. It’s worth talking to the Allergy UK Helpline too.

He should be having 2.5 floz of formula per pound of weight in 24 hours, As he’s 10lb, that’s 25 floz in a day. If he’s not getting anywhere near that, I’d talk to Allergy U.K., film a feed, and go back to A&E.

Okay, I'll try and answer as best as I can as there's a lot of questions! (Which I more than appreciate!)

So when I saw the HV yesterday she also expressed the same concerns as me. She said the dietician has to contact me within 48 hours. I do agree he needs to see a paediatrician too, she may have mentioned that but as I'm sure you can appreciate a lot is going on 🥴

When he was born, he struggled to feed both on the breast and bottle. Didn't feed for the first 24 hours. A midwife gave me a teat to try that was used in SCBU and he got on well enough to be discharged, but it still didn't feel right.

He was mixed with expressed milk and formula (aptamil). Then randomly after a feed he became mottled everywhere, a rash appeared and spread very quickly and he was extremely distressed so I ran him to the GP down the road and he was seen straight away. He also had dark green stools. The GP gave me lactose free formula to try for 2 days and we had to go back to update her. Because his stools were still green, she said that it was a cow's milk allergy and we were given nutramigen. He's been on that since. Ever since then he refuses feeds, or even when he's clearly starving he was screaming in pain and spitting it all out.

I took him back to the GP and he was given gaviscon and it got better but not by much. Every feed still a battle but keeping more down than usual. After over a month or so of using that and back and forwards to the doctors, he was given Omeprazole and told to stop the gaviscon. This was Monday just gone. In the leaflet there were no instructions on giving a baby under the age of 1 this medication (which was tablet form that dissolves). No advice given from GP. We were given 10mg tablets but the sticker on the front was for 5mg once a day. There is no indentation in the middle to split the tablet correctly. After looking online it suggested not to mix with formula so I mix it with a tiny bit of water and syringe the dose.

The first time I gave it to him the same mottled skin reaction happened but he also became slightly grey and clammy. I called 111 and they sent a paramedic and we were taken to the hospital.

After being sent to the children's ward, that's when the paediatrician questioned why he was given nutramigen based on his previous symptoms. I actually agreed with her as when she listed the symptoms he SHOULD have had, it matched what my older son suffered with. (He was also on nutramigen as a baby.)

She then diagnosed him with a viral wheeze, he was given a nebuliser for a short time and requested I attempted a feed.

He took 1oz which was a struggle and he vomited slightly in between and refused anymore. The decision to keep him in and tube feed him was then revoked and we were sent home as they were happy with that.

I then made a call to my local council where our HV are based and spoke to a duty HV as mine was away. She then flagged up our situation to our normal HV and she saw us the following day, which then takes me to my first paragraph.

I have bought Dr. browns bottles and he is ever so slightly better with it but it's not sufficient enough. Each feed takes over an hour and he rarely takes more than 3oz in that time. He's then hungry again 3 hours later. Refuses anything else.

When he was born he was checked for tongue tie and they were happy, however I'm not.

I feel so let down by everyone.

I actually agreed with her as when she listed the symptoms he SHOULD have had, it matched what my older son suffered with. (He was also on nutramigen as a baby.)

Did the Paeditrician mention that there are two types of reaction to Cow’s Milk Protein, ige and non-ige. Both if these can have very different symptoms. This article on Kellymom is aimed at BFers but it does explain the difference between the two and the difference in symptoms better than I could.

I have bought Dr. browns bottles and he is ever so slightly better with it but it's not sufficient enough. If he’s not had 25 floz in the last 24 hours, I’d go straight back to A&E.

When he was born he was checked for tongue tie and they were happy, however I'm not. Tongue tie wouldn’t make him go mottled or grey and clammy, but it could be a factor in his feeding. Have a look at this from Milk Matters. They also do assessments and divisions.

I feel so let down by everyone. I’m not surprised by the lack of support you’ve received so far. It sounds like you are going to have to fit for your LO every step of the way. Don’t be afraid of making a nuisance if yourself OP. You need to find out why he’s not feeding and what the rash is.

Without question I would ask for an urgent referral to a General Paediatrician at your local hospital (even better to a tertiary Children’s Hospital if you have one). I would also ask for a referral to a hospital dietician and a speech and language therapist to assess his swallow.

^This is very good advice OP

Did the Paeditrician mention that there are two types of reaction to Cow’s Milk Protein, ige and non-ige.

I was given zero info other than his orevious symptoms didn't fit. By the time he was discharged it was a different doctor and when I asked what I should do about the formula he didn't know what was previously said. 😞

Thank you for your replies, they've been very helpful and I'll look at everything you've recommended now.

TBH I’m not surprised. Infant feeding is actually taught to Doctors or HVs. I’m not sure if Paeditricians cover it either.

I hope you find some answers very soon

Bring him in through A and E and refuse to leave until you see a Paed. My son was put on nutramigen which didnt work so then put on Neocate. Hes now 6 months and put on nanny care. It was a very hard 6mths. Mind yourself. I know how you are feeling. My nerves were shattered listening to my baby scream for all that time. And all you want to do is your best for them

Bless you OP, it sounds like you are having a horrendous time and I agree that you have been badly let down. It is to your utter credit that you are advocating so well for your baby despite getting such conflicting and confusing advice from various health professionals that you have seen.

It is so hard to pick it all apart and gauge whether there are elements of allergy going on, as it can present in lots of different ways, and sometimes with a delay depending on whether it is ige or non-ige. Certainly there are some indicators from what you say that would fit with an allergy, and this deserves proper investigation with a hospital specialist in this field. I don’t know why, but my ‘spidey senses’ on this one are leaning more towards this being only part of the picture and purely on instinct I wonder if the actual mechanics of feeding - ie latch, suck swallow and breath are at the heart of the problem. Certainly a speech and language therapist would be able to assess this and my gut feeling is that this should be done as a priority. The fact that each feed takes over an hour rings alarm bells with me, and must be impossible for you as a parent and no doubt a source of dread. When babies take that long to feed they can almost get into the ‘celery’ situation where they expend more calories ingesting the feed than they gain from the milk itself and when I was working on the paediatric wards we used to limit oral feeds to 30 mins (40 mins at the outside) for this very reason. It sounds as if you have tried a number of different teats and methods of feeding (including breast) and he has struggled with them all, and this definitely needs investigating.

When he is feeding, what is he like in himself? Does he get sweaty or breathless at all with the feed?

As the previous poster said, he should be taking roughly 120-150mls per kilogram of weight per 24 hours, and if he is not getting this (and certainly if he is not getting the very basic volumes of 100mls / kg) then I would have no hesitation as a parent of presenting to A&E again. I would also have no hesitation of presenting there if you just feel you need answers and help that you aren’t able to access in the community. I have cared for many a baby in hospital admitted in just this sort of scenario and any health professional in paediatrics that I have ever worked with would totally understand your desperation to get this sorted once and for all. As much as an admission to hospital is no fun for anyone, it can sometimes be what is needed to really unpick what is happening and get timely access to the right professionals.

As the very sensible pp writes, don’t be afraid to make a nuisance of yourself. You have every right and every reason to ask for help in what must be an exhausting and distressing situation. I’m not sure where in the country you are or what your travel capacity is (and I don’t want to ‘knock’ district general hospitals by any means) but if you are within any realistic distance of a Children’s Hospital, that is where I would be presenting to myself, or asking for an immediate referral to.

I don’t know why, but my ‘spidey senses’ on this one are leaning more towards this being only part of the picture and purely on instinct I wonder if the actual mechanics of feeding - ie latch, suck swallow and breath are at the heart of the problem.

I'm also of the same opinion over the last 2 days. This viral wheeze isn't sitting right with me and the latching issues are becoming more prominent the more I focus on the situation. I have looked up a bit on viral wheeze and as I understood it they display similar symptoms to asthma but it flares up when unwell rather than other scenarios. My HV said they can't diagnose anything until the age of 2. But since reading on this I've found that his dad had an inhaler for a short while as a child and there is also asthma in my side of the family. The more I think about it the more I've realised that he sounds very "congested" a lot of the time. It's particularly bad for him at the moment and he's very very chesty. I've been using saline nasal sprays before feeds for days and days and it clears nothing. I've also bought one of those snuffle babe tubes to try and clear any congestion on his nose that he may have, but he's not snotty at all.

I'm very wary of looking for things that aren't there and it being in my head because this is literally consuming my whole days.

With the feeding for over an hour, that's literally a last desperate attempt at trying to get him to take anything to prevent dehydration again etc. My two older sons were both in SCBU and they also taught me to not try for over 30 mins.

I'm going to keep a diary on each feed. He's just tried a new Dr. Browns bottle for his last two feeds. From that he had 4oz in 40 mins (it wasn't easy) and then 3oz two hours later. Constant stopping and starting, rooting for the bottle and shaking his head a lot until he's latched. But at least he's had something. That's been the best feed so far.

How have you got on overnight annie?

I took him to A&E yesterday afternoon. He's being kept in and being tube fed 😞I feel like I've let him down.

If he doesn't get on with bottle feeding still once his weight has regained then I have to be trained in administering the tube and feeding him with that at home.

Oh Annie, I can only imagine how stressful this must be and am sending hugs from afar. You haven’t let your little boy down at all, far from it. You have advocated beautifully for him, battled valiantly at home for weeks and repeatedly tried to get him the best care. On that basis alone you are a wonderful mother and should rightly be very proud of yourself. I hope you are being surrounded by support in real life, and that the nursing and medical staff in the hospital are nurturing you at this difficult time. I really hope that in time you will reflect on this admission to hospital as the turning point for your little boy in getting to the bottom of his feeding difficulties.

The tube feeding must seem so daunting but you will soon be so familiar with it and it will seem like second nature. I know that feels hard to believe now but you will quickly get the hang of it. Don’t look too far ahead at this stage, it may only be a very temporary measure, and if you do go home with it for a period, you will be well supported in the community.

Make sure you use the opportunity while he is being tube fed to get some much needed sleep overnight as you must surely be exhausted. And try very hard whilst you are in to get access to as many professionals you can ie speech and language therapists, dieticians etc.

Here with a hand to hold if you need it.

Thank you to you all for your advice given and your hand holds!

He's now home and has slept soundly all night in my bed. He'd put on some weight while tube fed and managed some feeds with bottles from the hospital. We saw a dietician and he will be an outpatient under them. He's being kept on his nutramigen. She explained that babies can display different types of symptoms and because my other son also had an allergy, the threshold was lower for the baby and is a precaution as well. She also explained that there is a tiny bit of diary in the one we are on so introducing it back in when he starts having solids will be easier and they can monitor him through the process. They will also monitor with weight gain etc.

The bottles he manages to drink from are the sterifeed brand that they use in SCBU. They're tiny! They're also disposable so are quite costly but I managed to find some on amazon and have ordered some to keep here. They agreed that he needs to establish feeding correctly all over again before introducing other teats. She was very kind and said I knew what I was talking about which filled me with confidence.

I've also been given contact details for a tongue tie specialist who is private from a family member. I did bring it up several times at the hospital but no one had checked. So I think I'll go to this private doctor for him to be checked just as a precaution. My mum kindly offered to pay for it.

It's gonna be a slow process but right now I'm appreciating the fact I've had about 6 hours sleep!

Just thought I'd update...

Decided to see a private tongue tie specialist. Turns out he had a posterior tie which was quite thick! He had a small procedure today and is so much happier and feeding better already. She said she sees a lot of babies who are misdiagnosed with allergies and silent reflux when it's actually a tongue tie problem. She also said she noticed it straight away. I feel sad that it was missed on the nhs after several attempts at me getting him checked but I'm just so glad it's been sorted.

He's under a dietician now so we shall see what unfolds with his CMA...

Ah OP thankyou so much for updating - I have been thinking of you and kept meaning to check in. I so hope that the tongue tie revision is the start of lots of improvement for you all. You have been such an incredible advocate for your baby and deserve to really be able to enjoy him now.

I must confess it doesn’t surprise me that tongue tie was found to be an issue, and it makes me very cross that they are so frequently missed by hcps. I had similar with my babies despite them being glaringly obvious to me whenever they opened their mouths.

@Puddlelane123 I'd never seen a tongue tie before, so knew very little. The more it was suggested to me I started to look up online about them. Once I'd seen a photo of a posterior tie it also became glaringly obvious to me that something wasn't right. I wish I'd looked sooner because within 10 mins I was shocked at the similarities. I have no idea why other health professionals didn't even look. But it doesn't matter, it's done now and I'm very grateful that my mum paid for the procedure and got him an appointment within 3 days.

Thank you for your support, it was so helpful at the most difficult time!