12 weeks old tomorrow. Reflux since 3 weeks. Type 1 albinism. EBF. Please help.

[Hangingonbyathread10]

Hi Mumsnetters

Turning to you all for some help/advice. My DD is 12weeks tomorrow. At 3 weeks old she started stopping breathing while feeding EBF, 2 weeks in hospital lots of tests later diagnosed with Reflux. On ranitidine 1ml 3 times a day, omoperazal once and gaviscon every other night once. She's EBF. Since starting her upped dosage of meds she's not been any better. I'm wondering if I should try a dairy free diet to see if that helps as I know reflux babas can also have a diary allergy? Has anyone got any experience of this? Is so how the hell do I go about it?

She's also been diagnosed with type 1 Albinism last week (went private worried about her eyes scanning left and right) with nystagmus and sensitivity to light, I'm very much still upset and in shock about that at the moment trying to come to terms. We have a referal going through for nhs optomology but still no nhs appointment (hence going private for consultation). Has anyone experienced this??

Any help advice or tips are warmly welcomed.

Thank you x

I can imagine you are still shocked and upset. Have you been given the details of any support groups or Helplines where you coukd talk to someone with experience?

As for the reflux, I don’t think it’s a case of babies having reflux can have allergies. As I understand it, reflux is a symptom rather than a diagnosis and an allergy could we’ll be the cause. Have a read of this from Allergy UK and see if any of the symptoms sound familiar

Thanks for your reply . I've spoken to the rnib charity and they are going to offer me some advice and stuff I hope just wanted to see if other mums and dads have anything to add.

Thank you I will look at that!!

Hi Hanging
My son had really severe reflux (hospitalised as your little one has been) and was mainly breast fed. I didn’t really have much dairy, but did eat lots of acidic foods (like tomatoes, onions, spices). Within a week of meds and this restricted diet, DS was a different child. My diet was as bland as bland could be, but gradually, I started to increase these foods when he started weaning (I fed until he was 14 months).
Good luck with everything... I remember (very clearly) how awful everything felt at that time, but you will get through it. X

Sorry, forgot to answer the dairy free bit. Kellymom has sone useful information here. Have a read and see what you think. If you do go DF, there’s a useful allergy section on MN

One of my DDs was born with type 2 albinism. I had no idea (nothing like that known in either side of the family) - I just thought I had been blessed with a beautiful blonde child with pale blue eyes. At the 6 week check, I said I didn't think she had really ever 'fixed' on me. The Dr thought I was mistaken. At 12 weeks, I brought this up again and also that her eyes were moving side to side. A couple of friends told me that their babies were doing this too (they must have misunderstood me). That time, the dr was more clued up. She had trained as a paed, but was working as a GP. She immediately referred us to her old paed friends in a nearby hospital. Then we began a very worrying round of tests including an MRI. No-one was sure what was going on. Maybe she had been starved of oxygen during her difficult 'natural' birth? In that case there could be lots of other issues. Maybe she was deaf and blind? Maybe she had a peculiar syndrome? It was a shock and a double trauma after the difficulties of the birth. The tests continued for months. There was a lot of waiting time in between.

Nearly a decade has passed, and I'm happy to say that she is a wonderful little girl, vey well adjusted. She is very bright, and it seems her visual impairment in those early months led her to have a very hearing and she is now very musical. My DD has type 2 so I can't comment on what exactly is ahead of you. But it will be ok! It really will.

Looking back I wish I had found myself a therapist, to help me through the first year. I would recommend that. During that first year I coped "well" - but because I felt I should; not because I really felt fine. I think that made me a more functional mum that year, rather than genuinely emotionally connected.There were lots of times I just felt "why? why? why?" and wondered what the future held for her.

If you are also dealing with reflux, it must be a very hard time for you.

My child has albinism, AMA?!

Seriously feel free to ask me other questions....

Milk allergy is usually silent reflux, not normal reflux. Which one does dc have?

My dd was on ranitidine and omeperazole and grew out of the silent reflux at 22 months. I went completely dairy free and as she was combi fed she had nutramigen formula from 6 weeks. My dd is over 2 now and still has no milk at all. Chocolate, onions, tomatoes can really affect reflux. And keeping the baby upright for at least 20 mins after each feed - easier said than done when they want to feed all night!

You'll get through it!

Hello all
Didn't even think of highly acidic foods too much what a total tit i am and even had a evening full of chocolate, onions in my gravy and sodding tomatoes on my lunch time sandwich ultimate mum fail there!!!

Fredda- thanks for sharing with me could I possibly message you? I feel the why why why moments a lot recently! I am so so happy your Dd is doing well and coping well that fills me with hope.

Seven - had all 3 of those bloody foods this evening now feel totally awful. We started off with silent reflux no sick no crying no hiccups no arching back etc etc just stopping breathing. Now however we have hiccups, we foam at the mouth we refuse boob, we wriggle around arch back and cry, we have a pain cry, we chew our hands more, we are unsettled so now I think it's deffo more of a reflux as to silent?

Cutting out acidic food as of this morning. No more binge chocolate feast onion gravy or tomatoes on my butties!!

Is there any other acidic foods I should remove?? I shall have a Google.... I didn't even think...

Trying to remember what else I cut out... no fizzy drinks was the other thing (even mildly fizzy)... cut out fruit juice, limited tea (was avoiding coffee anyway). I mainly ate Italian/Indian type food before but went full bland! Avoided fatty foods, too.
Don’t beat yourself up. DS was such an unhappy baby and the crying in pain used to make me break out in a sweat. Then I felt utterly awful that it was something I was doing - but of course, I couldn’t know that. But, as I said, within the week, I had a different child. No arching back, no refusal or the converse, constant suckling, no crying. It was phenomenal.

My baby had seizures due to milk protein intolerance, where he would also stop breathing. Funnily enough no doctor ever told me this would be a possibility until I was in Alderhey children’s hospital for my middle child and the doctor said it’s a possibility and he’s seen it happen before. So I cut it out and he hasn’t had a seizure since.

Definitely worth a try!

At first I also cut out all allergens but now the only things I’ve left out are milk protein, lactose (because apparently it has milk protein in, small amounts), soy, spicy foods, very citrusy foods, CHOCOLATE! Really makes him refluxy unfortunately. I’ve tried to reintroduce chocolate (milk/soya free) a couple of times and both times he’s just a vomit monster afterwards

Wow that's so scary a baby who has seizures I am so glad that's not happening anymore.

Day 1 of cutting foods out has gone well I miss chocolate though haha....

Hope everything is going well and the cutting out chocolate isn’t driving you crazy!

You could buy some dairy free chocolate. Booja booja do really posh truffles but you can buy MooFree in supermarkets which is a lot cheaper. Some dark chocolate is dairy free too.

Just to add about reflux, that I have two sons who are dairy free. One was a silent refluxer and the other was a classic sicky one.