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I'd better stop hogging AIBU and move in here methinks (possible/probable milk protein issues)

(15 Posts)
MiaowTheCat Tue 21-May-13 08:58:19

You guys are likely to know what manner of arsekickings I need to be delivering to medical bods over this - seems temporarily resolved but I want to have as much background knowledge in my arsenal for when we get to the next steps in it.

Basic background is both mine and DH's family are fairly asthma/eczema filled (I have both, plus their sidekick hayfever, dad outgrew asthma, and I've now found out dairy allergies are in my side as well). DD1 seems (touch wood) to have dodged the bullet fairly well apart from a suspected touch of childhood asthma that they won't formally diagnose at her age.

DD2 is now 9 weeks - and thinking back, right from the outset something's been up. I remember buzzing at least twice when she was in the hospital to query the sheer amount of her feeds she was bringing back up and trying to stay awake desperately for fear of her choking on the sick... and being fobbed off then (when I flipping well KNEW it wasn't just newborn possetting). Took a good week or so longer than they like to start regaining toward her birth weight whcih I now wonder if it was linked.

By about 2-3 weeks I knew things weren't right, had already raised it with the HV on her first visit that I suspected reflux and been fobbed off (ongoing theme here!), so I went to the docs myself rather than waiting for her 6 week check. Doc took the line of "oh she's gaining weight so we won't do anything" until I pointed out that no fucking way were they going to make her utterly miserable (and the rest of us by association) for months on end until she was weaned. At this point he gave us Carobel to thicken her feeds. It stopped the tsunamis of milk coming back up, but she was still so uncomfortable by then I'd stopped going out as the fighting away from feeds, back arching, going bright red and screaming after each feed was too intimidating to deal with in public.

By this point we had a skin rash (that didn't look like the hives on google image search so I'd kind of mentally ruled it out slightly) that was all over DD2's face, neck and shoulders (if you think about where the vomit would land). Seemed to randomly get much redder and then fade back a bit (I later twigged it was going redder during and in the aftermath of feeds)... booked GP appointment because, more than anything else, with the measles hysteria at the moment I wasn't going to take a spotty child out and about without knowing I wasn't spreading anything sinister.

Back to the doctors again - over onto Gaviscon. Sod's law would dictate that this appointment landed on that really hot day of the year - so she fobbed off the skin rash as heat rash and sent us away with a tub of emollient (which was going to do bog all use as the skin wasn't dry there - I'm not daft and knew she was doing the "send her away feeling like she's got something to shut her up" routine). At this point I found out they'd reorganised the health visitors in our area and I'd got a new one who decided to clear out the backlog of development checks our old one had forgotten about (lovely woman - attention span of a gnat and refusal to write things down)... so she did both DD1's 1 year and DD2's 6 week one in one home visit and when we got onto feeding she was like "why the HELL have they put her on Gaviscon - it'll be her milk that needs looking at".

Tried the Gaviscon - discomfort still getting worse, amount of vomit mildly worse, rash by now was at the stage where after feeding she looked something like a burns victim and I was sitting sobbing at the state of the poor little thing. Back to GP - fobbed off to health visitor... who never answers her phone - so I had to sit for 2 hours in baby clinic to get a colleague to witness the rash and leave her a note on her desk.

HV rang dietician who strongly suspects a "systemic allergy" (they keep using this phrasing without clarification of what the systemic part means) - wanted a 4 week trial of neocate, allergy bloods done, but whereas normally she'd want a re-challenge doing at the 4 week mark, she's so confident there's some allergic issue going on there, that she doesn't want to do that. This has all been passed to me second-hand by a HV who isn't the best at clarifying things but that was the essence of the message... followed by about 5 minutes about how awful neocate was and how I'd have a right job getting her to take it... apparently DD2 has limited culinary standards and takes it fine after we transitioned over gently! Dramatic improvement - we still have some flaky skin where the rash has vanished which is healing up, but apart from flatulence from hell (the legs keep sticking up out of the moses basket followed by the most gigantic comedy farts) - changed baby who actually smiles (and she has one cracking cheeky grin on her!)

Have had a right royal faff on with the GPs doing anything possible to avoid prescribing it - prescribing half quantities and again telling me she probably wouldn't take it so they were withholding half, then fucking up the quantities the dietician had requested to be prescribed and only giving me under half of that - hence my terror I was going to run out, reinforced by the HV who hadn't realised they'd done this. Can't get the bloods taken until the end of the month (because I have to go to the hospital outpatients to do that) which is an added element of hassle. Anyway I did the strong mature thing of standing in the middle of baby weighing yesterday and melodramatically bawling my eyes out - so the HV's rang the GPs and basically bollocked them and secured us a further prescription.

However I don't know where things will go from here. I know that the bloods are a slightly wonky issue that might not throw up a positive result even when there's an issue - and I just don't know what's going to happen if that's the case or if they'll start accusing me of lying and making up the problems or what (I have to go via the GP to get the blood results, then go running to the HV to tell them what they've said... I'm going to move IN to the bloody local health centre... least it's got a coffee bar!). Then we have the whole "what the fuck am I going to feed this child if she IS allergic" panic factor creeping in too! (Also shitting myself in case they find something like a pet hair allergy in there - we have two beloved dogs and one wonky cantankerous cat)

Long and rambling but basically - how would people approach it if the bloods come back as negative?

OHforDUCKScake Tue 21-May-13 09:50:56

Before you start panicking about negative blood results, you really need to find out if its even possible to test a child that young for individual allergies.

My son was 5 months, and the results came back that he was too young. And that was an allergy specialist that sent off for that test. So if she was too incompetant to know that, then Im guessing the norotiously uneducated (on allergies) GP would be too.

Because your daughter is getting urticaria reactions during and after her feeds, that means a skin prick test would show up on her.

This may go againstnthe grain but do you know what I would do? Id get some cows milk and touch it on the small of her back, photo the before, during and after photo because there's bound to be a reaction. And take that to the doctor. Or failing that, do it while you are there. It'll take less than 5 minutes to show a reaction.

Do you have any photos of the reaction rash during feeds?

Can you speak to the practice manager? I feel you need to to someone better or higher than your GP.

The blood results may be a pointless and moot point, not because of the risk of them being negative, but the risk that it might come back with no result at all. And then it drags on longer.

You need to start fighting today, here and now, despite the blood test not happening yet.

Hoophopes Tue 21-May-13 12:38:52

Ask for referral to a paediatrician who can then refer you to a dietitian for support. Can be hard, in my experience to get allergy testing, as where I am they do it by elimination. I got so frustrated that despite breastfeeding my dc I gave him a bottle of normal formula an hour before we saw the paed. Cue prescription for nutramigem formula for us for cereal etc and I was told to cut out dairy if I breastfed Which I promptly did. You need the referral so they can advise on reintroducing dairy, what foods to avoid if still allergic when eating solids etc etc.

MiaowTheCat Tue 21-May-13 12:49:58

Yeah at the moment the dietician stuff is being done via phonecalls by the health visitor - hoping when we have more concrete evidence to wave in front of them that I can get an actual referral to not get everything as second-hand information... HV means well, and it looks like her instincts were bang-on with this one - but she's terrible for not clarifying or explaining stuff and contradicting herself massively.

I get the impression actually doing testing seems fairly rare round here and they prefer to do the eliminate it for a month and try again thing - but they did want them doing for us, and don't want to do a rechallenge at the 4 week point so I guess they're fairly confident what's going on on that ground - just getting every bit of information third hand and them all phoning and faxing each other is a bloody nightmare - and then they talk about their "joined up working" policy (I laughed at that one and pointed out the only place that exists is on a powerpoint somewhere in a manager's office).

Got the bloody Sure Start on my back trying to give me support I don't need as they've decided I must be a struggling parent with having a small age gap - I'm not - just stressed to the point of making myself ill with this flipping saga at present, but the logistics of two kids with an 11 month gap... piece of cake compared to trying to get sense out of the local NHS!

Hoophopes Tue 21-May-13 13:15:48

Ask gp to refer to a paed. HV does not need to be doing that, you need your child to be seen!! Often cannot see a dietitian unless a paed referred you. Once you have things on paper from a paed then people take more notice! My HV told me for ages what I needed to do when struggling with ds, but not until diagnosed and treated by a paed for reflux and CMPA did they realised it was medical!!! Now never see HV as they not interested.

If they offering support and you want it, take it. If you do not want it then tell them why not and what you doing instead (eg getting children not sleep routine at home, going to play groups etc etc of your choosing!!!)

Hoophopes Tue 21-May-13 13:17:22

Oh the professor of paed here said the gold standard testing is in his opinion eliminating dairy and then trying it again!! Every area different. Others test. Problem is can still react but not show up on blood RAST tests so need to see a paed in my opinion.

OHforDUCKScake Tue 21-May-13 13:28:54

Miaow people ate advising you but you're not listening. I mean that in a sensitive way, I know this is a stressful time. People made suggestions on the AIBU thread, I PM'dyou and more suggestions have been madeon here but you dont seem to be willing to do it.

Sorry if Im wrong, perhaps Im reading your posts wrong.

It is really stressful but it doesnt need to stay that way, nor get worse. You can get somewhere.

What is it that you want? From the NHS I mean? You tell us what you want and we'll help you get there.

Hoophopes Tue 21-May-13 13:34:56

Why not book an appointment with a gp as HV cannot refer to dietitian and they need to see the baby to diagnose.

OHforDUCKScake Tue 21-May-13 13:37:53

-book appt with GP
- ask for paed referral
- ask for dietician referral
- ask if they can do SPT
- take any photos of rash if available
- touch with milk, take before, durimg and after pic
- find out if the RAST test they want to do is even possible for a 9 week old
- write down any questions you have and ask the GP
- figure out what it is you want out of this.

Hoophopes Tue 21-May-13 14:37:32

Yes we took lots of photos and printed out as evidence!

freefrommum Tue 21-May-13 14:53:08

Sadly Miaow your story is very common. In fact, it's virtually identical to our story with DS2 (now nearly 6) who has life-threatening allergies to milk, wheat, eggs and nuts. There are NICE guidelines on diagnosing and treating allergies in children and I often recommend waving them in the faces of health professionals (eg GPs, HVs etc): publications.nice.org.uk/food-allergy-in-children-and-young-people-cg116/guidance

It shouldn't be a battle but iin my experience you have to fight every step of the way to ensure your child gets the right care and treatment. GPs hate prescribing Neocate because it's so expensive and ours would only do it once the consultant wrote and told him to. Don't be fobbed off, get that referral. If you can, try to keep a diary of symptoms to take with you along with the photographic evidence. Most specialists these days will diagnose on the basis of history rather than specific tests as none of them are definitive anyway, especially in babies.

Good luck!

MiaowTheCat Tue 21-May-13 15:23:27

On phone so expect autocorrect errors.

GPS basically pass any feeding issue, which they deem this to be over to the hv team, I've made appointments before and been sent straight back over to the health visitor team. Will have to bloods after they take these bloods (and I've raised the age and false negative thing with them myself and been ignored) and if there's no clear answer with them I'll be pushing hard for a referral to get answers.

Seems to be here that the docs pass everything to hv but they don't have the tools to do the stuff being sent to them, plus this rearrangement of the hv teams means that neither are used to working with each other yet.

Trying to find photos of the rash at its worst (but it upset me so much I avoided taking many) - am going to do the milk drop on skin thing though- so yes I am taking things on board and didn't need to be blasted like that (was in two minds about getting my posts pulled, but the advice is useful for others who may be searching so I didn't).

As for help being pushed on me, I have various very strong personal reasons for not wanting any hint of not coping hanging around me - I won't go into them as they're not relevant here.

If people feel I've wasted their time by asking on here then sorry, I can request the thread to be pulled so no one else wastes time if you would wish me to do so.

My phone typing is dreadful, hopefully this is at least comprehensible.

OHforDUCKScake Tue 21-May-13 15:57:34

I absolutely did not blast you OP. In fact Im very upset that you think that.

It broke my heart reading your AIBU thread, I made a huge effort to help you on there, I PM'd you with further advice and offered to send you opened milk to help you out, which I understand costs £30 a pot? Which went unrecognised anyway, but I assume your stress and worry over saw my offer.

Then I try and help you on here, more than once.

And instead I get accused of blasting you.

I will very much backing out of this thread, cant believe how much this has bothered me.

OHforDUCKScake Tue 21-May-13 16:00:00

*unopened milk

babybarrister Tue 21-May-13 22:53:08

please wave NICE guidelines in their faces and get properly tested. my DS was tested at 4 months by a very specialist paediatric allergy consultant from St Thomas so I find it very difficult to believe that any DC can be "too young" for testing ...

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