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Possibly allergic DD and no-one will help

(21 Posts)
destructogirl Mon 15-Aug-11 19:35:21

I've just come back from docs and I'm so frustrated and upset.

I've been suspecting that DD (7m) is allergic to cows milk, and possibly wheat.
She's been EBF for 6 months then I started trying real food. She wouldn't have any purees, she gags and won't swallow so HV suggested BLW. So I've been doing that but also trying the odd puree as well. She will chew stuff but not swallow.

A baby jar of rice pudding she actually ate some but gave her an instant eczema-like rash round her mouth and cheeks.
I asked the HV if she could be allergic to cows milk and she said it was probably just the starch irritating her.
Then over the week I noticed the same reaction, to any baby food with milk in (baby porridge etc.)

She loves toast with butter but I've noticed sort of raspy breathing afterwards.
A bread roll with cream cheese she loved and then had wind and belly ache all night.
So I thought I'd try cutting out any cows milk stuff, gave her baby weetabix with my milk and she straight away got the rash all over her cheeks and also puffy eyes.

I've been thinking about it and reading stuff on here and while I previously thought she was ok with my milk, I'm now not sure. After a feed she will often pull this face where she puffs out her lips and I think maybe it's her lips swelling as a reaction? And when she feeds she always has this habit of scratching at herself, no rash but she grabs and scratches at her head and ears and I have to hold her hand.

So I cut out dairy from my diet, as of yesterday, just in case. Almost all my favourite foods. Took her to HV today, she says as there was breathing changes it sounds serious and she has to go to doctor.

Bloody doctor has given me eczema cream and said just don't give her cows milk then and to give her SMA instead. He won't refer me to an allergy specialist he says she's too young.

Now I don't know what to do. I'm scared to give her food, each time she reacts it seems a little worse. I'm also worried that maybe I'm just being paranoid and a drama-queen over a bit of eczema.

Does it sound like an allergy? Or over-anxious-mother syndrome?

eragon Mon 15-Aug-11 19:54:14

this sounds like you need to change your gp and demand some help.
ring the anaphylaxis campaign to get names of the nearest allergy clinic to you and their doctors and get refferred , ask every gp in your surgery if you have to get your HV support , see what she can do. Use her to get the help for your baby.

good luck.

destructogirl Mon 15-Aug-11 20:14:16

Thank you eragon. I've just looked up anaphylaxis campaign and they have some good info, I'm going to call them in the morning. Do you think it sounds like an allergy then, and not just me being paranoid?

greenbananas Mon 15-Aug-11 20:23:40

eragon is right - you need to change your GP!!

It's easy to worry that you are being paranoid / dramatic / over-anxious when you feel that nobody believes you sad You are right to get this checked out! and you are also very sensible to give up dairy etc. in your own diet (at least until you have had a proper referral and spoken to an allergy specialist).

Your HV sounds much more clued-up. Her initially cautious reaction is understandable, as some babies do get harmless rashes when food irritiates their skin; however, she is quite right in saying that raspy breathing needs further investigation - and quickly! Could you call her tomorrow and ask her to recommend a doctor in your area?

Hope you get some better support soon...

(Also, don't know how you feel about 'making a fuss', but have you thought about telling the GP surgery practice manager about the shockingly ignorant advice given to you by your GP?)

destructogirl Mon 15-Aug-11 21:06:27

My GP surgery has a group of GPs, I think I'll go through them all until hopefully one of them listens. HV only available Mondays.

I'd feel awful making a fuss. GP is a nice old chap, he was really helpful to me years ago when I was ill, but he likes to just write you a prescription and send you on your way.

Thank you both for your replies. It's made me feel like I'm not just being daft and I do need to push for more help.

Likeaninjanow Tue 16-Aug-11 11:19:04

So sorry to hear you're having this worry.

Has she been on your bm alone until now? Just asking as you say you were told to use SMA. Have you used this before? If I'm not mistaken it's made using cows milk so, if you think she's allergic, I wouldn't switch to that.

If you're cutting dairy out from now, it will take around 3 weeks to see a significant difference if she is allergic. It will take that long to get out of her system as well as yours. It really is worth doing though, as we saw a huge difference when I did that with DS2.

I hope you find help quickly. In the meantime, it's a good idea to have some liquid piriton nearby.

destructogirl Tue 16-Aug-11 13:02:12

Yeah she's only had bm, I did think SMA was a daft suggestion grin
I have piriton in the cupboard but is says for 1 year and over, do you think it would be ok?

Just seen 2nd doctor and I have my referral, but he says it will take a few weeks.

I'm wondering about the raspy breathing thing she does. She doesn't seem to have difficulty breathing and she's not upset and she's just started it after being given cucumber to chew on. So I'm thinking, could it be from excess saliva that she's not swallowing (having difficulty getting her to swallow anything).

I must admit I was hoping to see some difference straight away with cutting out dairy, just to validate the suffering I'm going through. 2 days dairy-free and she still scratches herself when feeding, I'm going to mark my calender for 3 weeks and try to stop thinking about hot buttered toast with milky tea.

babybarrister Tue 16-Aug-11 13:47:14

agree with all of the above and would add:

1. show your GP the new NICE guidelines on the diagnosis of allergy in children - they are on Anaphylaxis Campaign website I am sure - and tell him to stick those where the sun does not shine ....

2. SMA?! - lunacy - I would suggest you either move to a hypoallergenic formula which are in fact available over the counter - either Nutramigen, Neocate or Pepti - if you see an immediate change for the better - bingo! as for you there are various very good substitutes for dairy including Oatly, rice milk and coconut milk [Kara] all of which are calcium enriched

3. different dairy products have different amounts of the active cow's milk protein as they have been processed more or less ie raw milk is most reactive but some cheeses and butter may be better tolerated. This may account for some of the different reactions you have noted

4. breast milk - mothers are always told to avoid whatever the allergen might be - which is of course the safest advice but there is in fact no research which actually proves that what one eats comes out in the breastmilk according to my consultants

Good luck and come back here with any questions! smile

greenbananas Thu 18-Aug-11 07:39:47

destructogirl, how are you getting on?

I have piriton in the cupboard but is says for 1 year and over, do you think it would be ok?

Yes, you can give a dose of 2.5ml if you really need to (although obviously you really ought to be doing this under medical advice!)

destructogirl Thu 18-Aug-11 08:39:02

Thanks babybarrister, your point number 4 has calmed me down a bit. I was getting panicky and not eating. I was going to cut wheat out too, but dairy and wheat are the staples of my diet and I'd be living on oven chips.
I'll stick with just cutting out dairy for now, that Oatly stuff is not bad in tea.

Thank you greenbananas, I'll keep that in mind about the Piriton.

I had better luck with GP number 2. He's given me the referral but it will take several weeks. Luckily DH has BUPA, so GP said if I can get the name of a private consultant he will refer me to him.

So I've been calling the private hospitals, first one says they have a childrens allergy specialist but doesn't see them until they are 3 years old! Second had no allergy specialists at all and I was getting quite worried. So the third one had no actual allergy specialist but a general paediatrician so I've booked with him, appointment on Weds.

Shocking how expensive it is. I'm really lucky DH's job gives BUPA cover to the whole family or this initial consultation would cost me £275!

Feel loads better now I have this appointment. BUPA have said they will cover consultations and any diagnostic tests such as blood tests or patch tests, but once a diagnosis is made they no longer cover.

babybarrister Thu 18-Aug-11 09:27:30

where are you more or less as someone here will know someone good. re Piriton entirely agree it is fine - my DS prescribed it at 3 months by specialist paediatric allergy consultant and as a matter of interest he was also prescribed an epipen at the same age in case you get into a row about that .....

good luck!

QuintessentialShadow Thu 18-Aug-11 09:33:01

"So I thought I'd try cutting out any cows milk stuff, gave her baby weetabix with my milk and she straight away got the rash all over her cheeks and also puffy eyes."

Could this have been to the wheetabix (which is mostly wheet) and not your milk?

youarekidding Thu 18-Aug-11 09:54:09

I understand what your saying about the breathing. I remember when DS had the reaction and I could tell he wasn't breathing right but it wasn't so severe it warranted panicking iyswim? However despite negative RASTS he has an epi-pen - that is all through a cons pead - never seen allergy specialist - who said basically that he has shown symptoms of severe allergic reaction with signs of shock and that it's never worth risking a severe anaphylatic reaction which can't be treated immediatly.

Hopefully a cons pead will either deal with you and do tests or refer to someone who can. I am considering asking for referral for skin prick tests on airbourne allergens, wasps etc and I'm pretty sure they can do this and you don't have to go back through the GP.

Best of luck and let us know how Weds goes - keep coming here it's a scary process and we have all been there and can offer support.

destructogirl Thu 18-Aug-11 14:34:09

I'm in the Midlands. Anywhere in Staffordshire/Warwickshire I should be able to get to if anyone knows of any good specialists.

I've asked at the chemist about special formula. She's BF but I keep imagining emergency scenerios such as me being rushed into hospital with appendicitis or something, how could DH feed her? Apparently they don't keep them in stock, they have to be specially ordered, she says it's best to get a prescription.

I've been wondering about the wheat. She's ok with toast spread with fake butter, I thought about trying the weetabix again with the oat milk, but maybe I shouldn't be experimenting?

Her lip still puffs out after a feed, almost like a blister but goes down again within a couple of minutes. I always blamed it on the nipple sheilds I use, like from the friction?

She also vomits. I didn't think of it before, but I've been reading loads of threads and some people have vomiting as an allergic reaction?
She was never sick in 6 months, it's only when trying food recently. Sorry if TMI but it's almost projectile-like and full of clear mucous. I thought it was from the gagging. I'm trying BLW and it says gagging is normal, and she gags on purees as well anyway. So I thought the puking was normal and caused by the gagging, but maybe not?

Or I'm worried that maybe I'm fixated on the idea of her being allergic and am just looking for things that fit.

Thank you all for your messages, you are all really helpful and and it's making me feel less alone and frightened about it.

babybarrister Thu 18-Aug-11 15:31:37

bigger Boots have hypo allergenic stuff in stock IME

re expert - you are not in my neck of the woods - can I suggest you repost on here asking for suggestions for paediatric allergy specialists round your way ...

garliclover Thu 18-Aug-11 15:48:09

Re allergy specialists etc.: I would suggest calling the Allergy UK helpline: they may be able to locate a hospital with an allergy clinic near you?

It sounds like you're doing all the right things. It's so difficult to navigate your way through allergies, especially when docs etc. can sometimes be obstructive (without meaning to, it seems, in the case of your nice old GP) if they don't take allergies seriously.

I have read in several trustworthy books (and have gathered from a few threads on mn) that at 7 months some babies just aren't ready for purees or solid food. I wouldn't worry too much about the gagging at this stage. But then again, I'm not in your situation and don't want to lessen the seriousness of it!

Maybe you've already said, but is there any history of allergy at all in your family (even if just hayfever)?

Also, this may seem silly to ask, but have you or your DD had antibiotics? Sometimes thrush can result: it is not always easy to detect in babies, and can irritate the throat and digestive system. It seems unlikely, but I would suggest checking with a lactation consultant at a local breastfeeding clinic, if only to rule it out (or maybe mention it to the paediatrician).

Let us know how it all goes!

destructogirl Wed 24-Aug-11 17:47:18

Thrush sounds possible garliclover, we've not had antibiotics but she does get thrush nappy rash sometimes, we've got a special cream for it.

Saw general paediatrician today, he was great! Although not an allergy specialist he seemed to have a lot of allergy knowledge. He's agreed with me that she seems to have allergies (we do have a lot of family history, hayfever, asthma and DH allergic to walnuts) and he's booked her for RAST test for milk, wheat and nuts, also blood test for coeliac just in case.

Normal wait time for the test is 6 weeks but he's friends with the lady who does the tests and has got me in tomorrow!

I'm so relieved that it's being taken seriously, I could have kissed him grin

youarekidding Wed 24-Aug-11 21:44:26

Just a thought but is there latex in the nipple shield? Is she reating to this and thats what's causing the blistered skin?

It may be that you DD is reacting to trace amounts of allergen in your milk as I've heard you can;t have a reaction to something until you've been explosed to it and that's often why subsequent reactions are worse - although then they go sporadic. Maybe now she's weaning and been exposed she's reacting more to trace amounts. Does that make any sense?

Well we have cons pead tomorrow as DS got epi-pens in February. Should be interesting because accept for April time when he was really bad and kept losing his voice he's been fine. <secretly hopes with neg RAST and IgE they may deem him non allergic>

destructogirl Tue 04-Oct-11 14:52:23

Hi everyone, thanks again for all your help and advice.

youarekidding, nipple shield is silicone so i think it's ok, i think I may need to be more careful with keeping it clean than I have been previously though (it's been tucked in my bra blush ). Hope your DS is doing well still.

Test results took ages. She got 0.32 for milk, >0.35 would count as allergic apparently, and scored 2.52 for 'mixed nuts'.
Doc said he would consider her allergic to milk, despite the low result and to keep her away from dairy until about 15 months. He will see me again in March.

I was completely crap and couldn't think of any questions to ask him so I'm no better off really, except I know to keep her away from nuts which I would have anyway.

No advice from doc as to what to do if she reacts badly, or how to spot warning signs of a bad reaction. No referral yet to a specific Allergy Specialist, he said he knows a specialist but she won't take private patients.

Mumsnet is the only place I've had any decent information and advice. I know I can give her Piriton if she starts to react badly, no doctor or other health professional has told me this.

Apart from the odd slip up, I've been dairy-free for a few weeks now and I can tell a difference. She doesn't scratch her head while feeding anymore, and doesn't get puffy lips.

I'm not sure whether to try her with egg. Egg wasn't included in the RAST test. I put a bit on her arm, nothing happened on her arm but she developed a single hive on her forehead later that day.
I don't know what to do, on one hand I don't want to experiment on her and risk a bad reaction and on the other hand I don't want to be depriving her from good nutritious food with no real evidence.

Don't know what to do.

greenbananas Wed 05-Oct-11 21:00:16

Hi destructogirl smile
I don't have much useful advice, but want you to know we are still thinking of you.

I sympathise totally with couldn't think of any questions!!! I spent our first allergy doctor appointment crying and saying "nobody has ever believed me before" [shame] Afterwards, I felt that I had really wasted the appointment, and thought of loads of questions I wished I had asked. When we went back a few months later, the doctor said, "Ah yes, you're the one that cried" blush blush

Signs of a bad reaction will possibly include major swelling, especially on face, breathing difficulties and/or being very lethargic. In that situation, use the piriton and get to A&E as fast as you can (call an ambulance if necessary). Hives, rashes and very minor swelling can be treated with piriton, but see your doctor and explain what has happened.

Please, please forgive this unwarranted intrusion, but you mentioned nipple shields... have you had much breastfeeding support? Lots of mums do use nipple shields because of problems with pain, but pain can usually be sorted with good positioning and attachment (sadly not all midwives and HVs are currently able to give good information about this). You seem keen to breastfeed, and I'm wondering if using nipple shields will prejudice your ability to do this as your baby gets older and your supply adjusts to her changing needs. Again, I'm sorry to bring this up, because you did not ask about this...

Anyway, that aside, good luck to you, and stick with these boards smile

destructogirl Thu 06-Oct-11 14:14:46

Breastfeeding support? What's that? grin
No pain but DD wouldn't latch for more than a minute or two at first, midwives at hospital kept wanting to give her formula and said I couldn't go home until I'd managed to feed her properly (eg a feed lasting at least 15 minutes). So I used the sheilds to keep her latched for longer.

My DS started with sheilds until 2 weeks old when I managed without, thought I could do the same but I've never managed to get DD off them. If I try now she gives me such a funny look, as if to say 'what the hell is that?'
Would love to stop using them, but she is very used to them now. I hope they don't cause trouble in the future, supply seems fine at the moment although she has started waking in the night for milk.

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