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Neighbour is feeding her coeliac child gluten

(69 Posts)
getonthearkunicorn Tue 24-Oct-17 18:52:04

More of a, 'wwyd'?
My Neighbour, who I see a lot (children are the same age, I often watch her children not always willingly )
Her DS is nearly 5 and still not potty trained, I've drawn up charts for her and given her tips (she sometimes struggles with him as she is pregnant and has a 1 year old) but she didn't keep up with it. She'd get very upset when he'd have an accident and place him back in a nappy.
However, she has told me that she's told consultants that he cannot feel when he needs to poo, however I have seen him ask her or partner to use the toilet, and they've not reacted quick enough. In my care, he runs and hides whilst doing a poo - so he definitely knows it's coming.
My heart breaks for him as he is being called 'smelly' at school.
Newest worry is that the consultant has ruled out Crohn's disease in her DS (he is very under weight) and speculates it is coeliac. She has been given the advice to start the gluten free diet immediately until he has his appointment next month (this was over a week ago)
He has eaten pasta, McDonald's, cakes, etc. I had him one morning so she could attend a midwife appointment, and made sure we had gluten free pancakes for him. She said 'you shouldn't of bothered, I haven't'
I keep gently saying to her that it's really important she follows their advice. But I don't want to patronise her, I know she finds it tough.
He's had 9 days off school already sad (obviously it's half term now)
I'm planning to cut down the amount of time I see her, as I find it very frustrating that she doesn't take his issues seriously. There are other reasons too but unrelated. It's also made difficult by my DP being good friends with her DP.
So what would you do? Should I just be butting out? It makes me worry though!

Santawontbelong Tue 24-Oct-17 18:54:03

I would inform the school you have concerns. Maybe they would have the school nurse speak to her - offering advice type of chat. Failing that Ss.

crunchtime Tue 24-Oct-17 18:54:08

are you sure they have said to start the gluten free diet? that isn't the usual advice. usually you have to keep eating gluten because otherwise the biopsy to test doesn't work accurately.

That said they sound neglectful and i think i'd be having a word with a health visitor/school etc

Fixmylife Tue 24-Oct-17 18:54:45

I think you may have misunderstood, until diagnosed the child should continue to eat gluten. Diagnosis involves a positive antibodies blood test and then an endoscopy to do a biopsy. If it is coeliac that would very likely explain toileting problems.

Ttbb Tue 24-Oct-17 18:57:05

It's really not that hard, it's not like she has five under five. There must be something else going on. Has she ever hinted at any other problems that she might have? At any rate the child is suffering for it.

HeadfirstForHalos Tue 24-Oct-17 18:57:12

I've just been diagnosed with coeliac disease, it's important to continue eating gluten until you've had the biopsy, or you can get a false negative!

Medeci Tue 24-Oct-17 19:02:06

Newest worry is that the consultant has ruled out Crohn's disease in her DS (he is very under weight) and speculates it is coeliac. She has been given the advice to start the gluten free diet immediately until he has his appointment next month (this was over a week ago)
This is unusual advice as the child must be eating gluten until tested. The test won't be accurate if on a gluten free diet.
Could she be telling you fibs?

RavingRoo Tue 24-Oct-17 19:02:10

I personally would contact ss for the failure to potty train a 5 yo. It doesn’t sound like she spends much time with him.

Getonthearkunicorn Tue 24-Oct-17 19:07:19

Sorry, he's had the biopsy. Should've made that clear and he had already had the endoscopy.
To be honest, I don't know if she 100% knows.
I think the next appointment is more of a follow up?
The school is a good idea. Our HV is useless, I expressed my concerns to her before and she told me to report to NSPCC (I did and I felt so guilty) but the HV just phoned her to follow it up (she told me all of this - none the wiser it was me who phoned) I know she needs support which is why I have stuck around.
She is young (but we are the same age) and I don't know if she has any diagnosed issues, but sadly her education was cut short as she dropped out of school and I think the system failed her quite a lot.
Her DP is a bit more aware of the situation, but he works 2 jobs so isn't around much. I don't get the impression he's very helpful when he is there.

arethereanyleftatall Tue 24-Oct-17 19:11:10

This doesn't sound great.,
Why doesn't the 5 yo just go to the toilet though if he can tell? Why does he need someone to take him?

Getonthearkunicorn Tue 24-Oct-17 19:14:20

arethere why would he though? It's easier being in a nappy and not have to interrupt his viewing of paw patrol.
If no one has taught him consistently to go to the toilet, he probably doesn't see the importance. He doesn't seem fussed by the comments at school, and she tells him to laugh it off. He is still very babied in other ways too, he still has a doddy, blanket, occasionally a bottle.
He is behind other children for his age, but I expect now he is at school he may catch up - he didn't attend nursery at all.

notapizzaeater Tue 24-Oct-17 19:15:13

Perhaps she’s waiting to see the dietician ? Tbh my son was only diagnosed age 7 and was having ‘accidents’ every single day no matter what I did, these only stopped once we found out he was coeliac

NonnoMum Tue 24-Oct-17 19:22:34

School would probably already have the family on their radar but an extra letter outlining concerns would be helpful.

GrumpyOldBag Tue 24-Oct-17 19:22:43

OP your post is confusing.

You say the consultant speculates it is coeliac

So that has not yet been confirmed by a blood test? Are they speculating, or has it been confirmed? My DS had to continue eating gluten between getting a positive result on the biopsy/endoscopy and having the blood test & results.

Who is the appointment with next month?

MistyMinge Tue 24-Oct-17 19:23:19

Both issues put together don't build a good picture. Are you sure he doesn't have developmental issues that would explain the toileting?

I would have thought the school would be keeping an eye on the situation and alert the authorities if they have any concerns. If he is definitely coeliac and she continues with the gluten she'll do long-term irreversible damage. I think if I noticed that still going on I'd ring someone. Do you use the same doctors surgery? Maybe make them aware. They wouldn't have to divulge any patient info.

SaskiaRembrandtWasFramed Tue 24-Oct-17 19:27:01

Anyone posting about your own/your children's bowel problems please remember this is a public place and poo trolls can see what you are posting.

leghoul Tue 24-Oct-17 19:27:30

If he's celiac he needs to eat gluten until definitive diagnosis by endoscopy +biopsy
If he's been confirmed to have celiac disease, then he should be on a gluten free diet. But it sounds very speculative, in which case, he's meant to eat it until proven otherwise or else the test will not be positive for celiac disease.

JaneEyre70 Tue 24-Oct-17 19:37:43

My granddaughter has got coeliac disease and my DD had to keep her diet normal until the bloods came back. Luckily it was such a strong positive and our GP was on the ball so it was only for a few weeks and she didn't need a biopsy. My granddaughter was so desperately unwell, stopped growing and looked like a vampire....she had no energy and just spent the days lolling around on the sofa, and also had very explosive bowels.
Within days of being gluten free, she was a different child.
Children with coeliac disease often need to be lactose free for a while after diagnosis too.
If she's not following advice by choice, I'd be ringing SS. It is beyond cruel to feed a child food it can't digest and is child abuse IMO. CD is an auto immune disease, not a dietary preference.

Floralnomad Tue 24-Oct-17 19:53:44

As others have said if he has not been tested he needs to be eating lots of gluten , the more the merrier or the result will be false . My dd was diagnosed coeliac at 11 .

Veterinari Tue 24-Oct-17 19:57:24

He has been tested

TakeMe2Insanity Tue 24-Oct-17 20:11:05

I have coeliac disease. It is of the upmost importance that you are eating gluten up until the biopsy otherwise the reading can come back as negative.

The consultant speculates in which case the child has not been tested yet.

picklemepopcorn Tue 24-Oct-17 20:14:12

There's been a name change fail- get in the ark unicorn is the op and he has had the biopsy already

JaneEyre70 Tue 24-Oct-17 20:19:56

Please go to Social Services OP. Poor lad sad. The physical damage being done to him is horrifying. Some people are unworthy of being parents.

Getonthearkunicorn Tue 24-Oct-17 20:44:17

I can't speculate if he has developmental problems, I am not qualified to do so. However, from my own personal opinion, I'd say that he's perfectly capable - his speech is good, despite a slight impediment which I believe is from prolonged use of his dummy.
He just has not had the time, effort and nurturing to flourish.
I honestly don't know all the answers to the medical questions posted on here, she explains as fully as she can but isn't always clear in what she is saying.
As far as I am aware he has had all tests completed for the diagnosis, but his next appointment is a 'what are we going to do next' type of thing.
My question is more of a 'what the frick do I do'.
I hate sitting and watching him suffer, but everyone I have reached out to already has been utterly useless.
She's very good with the children as babies, but it seems as they reach toddler age she seems a bit lost.
I don't think the seriosity of the condition if left how it is, has sunk in. I believe she thinks it isn't that important - the original worry was CF and Crohn's, so I think that was ruled out she's kind of just taken a back seat.

Was there a name change fail? Sorry! I am a frequent poster but was worried about being identified.

It sounds so silly, but they have been reported to social services a lot. He had a string of injuries that landed him in A&E and by protocol, the HV was sent out. Or rather, just phoned. I do have massive concerns for his welfare but they are falling on so many deaf ears it's unbelievable.

Another one of our neighbours is a nurse and I speculate she has also reported, as she spoke to me about her concerns once. Whether she did or not, I will never know but I don't think I am the only one trying.

It is so tragic, I do believe she wants the upmost best for her children but she has very little support. Her family are very involved but they don't seem to have much understanding either. This is more than just different parenting styles - there is definitely something underlying but it is not for me to solve.

Sorry, I have gone on a bit of a rant.

Floralnomad Tue 24-Oct-17 20:56:38

Well I've re read the OP and still can't see where coeliacs has been confirmed , no one should be condemned to being coeliac by speculation alone .

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