PCD Family Support Group (UK)
313 members155 posts

Our baby has PCD

Are there any parents on here with babies that have PCD. Olivia is 6 months old

We found out she has situs inversus after her sats were 82 after being born normally and 2 weeks overdue. The did an x-ray as she was in respirstory distress and saw her organs were all opposite. Currently we are waiting for her test results but everyone is 99% sure that she has PCD.

Just wondered if there are any babies on here what their bowl movements are like? Sorry for the grim feed. Liv covers her clothes basically everyday and it' getting me down. It's her christening on Sunday and I dread her wearing her gown and we are going on holiday Monday and I feel I can't take her swimming. I am going to take her to the doctors tomo to ask if it's an allergy or something that comes with PCD.

Thanks

10 Replies
oldestnewest

Morning.

I’m sorry I can’t help too much. However I have Situs Inversus And was diagnosed at birth.

I’m aware every individual is different but just wanted to show some support that it may not always be this way if it is S.I related.. Although I have more of a tummy there are no other signs I have this. And my health has got better as I’ve got older (I’m 30) As a young child i was quite poorly but that was more with my chest and infections rather than due to S.I itself.

Hopefully once they have officially diagnose they can offer further help and support.

Someone may be able to shed some light as to whether they have had a similar experience re: bowel movements but for myself they were/are completely normal.

Kind regards

1 like
Reply

Hi there,

Our daughter Erin is 2 this week and also has PCD with dextrocardia and situs inverses. Her poos have been relatively normal so I can't offer advice. She does have reflux though. It definitely sounds like it's worth a trip to doctor. I hope the Christening goes well and enjoy your holiday. Try not let it get you down, I know that's easier said than done. Hopefully it's just a phase and as Olivia moves onto more solid foods, things may improve.

Take care

Thomasina

1 like
Reply

Hi there. Sorry to hear you have been having a rough time. My son is now 2.5 but was born with SI and dextracardia and was sick from the moment he was born. We also had to wait for the confirmation of PCD but it came. Bowels have been ok, more or less. He goes a lot (4 times a day) but they are formed. It could possibly be totally unrelated to PCD so a trip to the docs is probably a good call. PM me if I can be of further assistance.

Best of luck

Siún

1 like
Reply

My son was born with situs inversus & respiratory distress but always had normal bowel movements. I recommend you ask your daughter’s physician about the possibility of malrotation of the intestine as she is higher risk for this given her history of situs inversus. Not sure if her symptoms fit, but as a physician myself, it sounds suspicious. Certainly not my specialty though. Best of luck!

1 like
Reply

That's really interesting thabks for that I've just had a read up on it. I'm seeing the lung specialist in January and I'm going to lay everything down then :( it's making me wonder if she's lactose intolerant x

Reply

Hi my babies (both PCD) had messy nappies too. They would often swallow mucous and it either made them sick or came out the other end. Definitely worth mentioning to the docs when you can.

Also happy to talk to you if you want to ring our help line 0300 111 0122

Best wishes

Fiona

1 like
Reply

That's crazy that you have 2 babies with PCD ♡ x

Reply

Hey, both my children have chronic lung. never had this problem with my daughter, but my son was like that with the poo for the first 6 months and that's why they kept thinking it was CF. We had tried a few different formulas and the consultant put him on soya formula and hes now 3 and still on soya milk / icecream and problem stopped pretty much instantly. consultant didn't think its related to his lungs at all, just that he struggles with dairy. If you are feeding yourself you just cut dairy from your diet, as I was still pumping some feeds at that stage. Might be worth a conversation with the gp or consultant. poor little Olivia that's very hard on her tummy

Reply

Hi, just to let you know my son was born with situs inversus and our day was not complete without a backpoo. He's 3 now and still a bit soft with his poos. I thought it was mucous related but he is inconclusive for pcd. Anyway my daughter came along with noral arrangement of organs and also did backpoos everyday. My breast milk must just be very runny! It just becomes their normal and should improve with solids. Xx

Reply

So the GP didn't help just made out like it was a bug even though I said she's had mucus poo since birth. I ended up with her in A and E after ringing 111 the other day because the amount of snot in her mouth was ridiculous. She was borking and choking. Projectiled twice with green mucus in. They gave her an inhaler and said it was brochiolitus (however u spell it). So her general check up was 2 days after. I'm that livid I am requesting not to see him again. I said about her poo and he didn't have much to say. I said I'm having trouble weaning her. He said that normal because of the textures. So yesterday my friend gave her the tiniest bit of white choc and she threw up all over her. Thought nothing of it. I've just given her mushed up banana. She worked on it that much she threw up loads. It's like there is too much shit in her throat. At the end of her appointment he said to me she's showing no signs of PCD :o. I literally couldn't speak. The lung specialist and PCD professor are 99% sure she has it. And today we received a letter saying it is strongly suggestive but they want to retest. Basically she has it. Why don'

Reply

You may also like...