Problems 'down under'

[Laundrymaid]

Hello all, I have been reading and replying to others posts for about a year now. I have a daughter who turns 13 in Sept 2018 who has suffered from severe constipation almost since birth and in recent years has suffered lack of bladder control and UTI's all linked to the constipation. I also have a son who turns 9 in Oct 2018 who has been diagnosed with Coeliacs disease. We live in New Zealand but turned to ERIC as we just don't have the same level of knowledge or support here in NZ! With my daughter I feel we now have a good handle on what works - meds, water and a sitting routine but what I really need help with is getting a resistant older child who often denies the problem to be compliant with the routine that helps her! Reading other people's posts has been a huge help and I thank you all for taking time to post! The Laundryymaid xx

[Robinia]

Laundrymaid I have found all your replies super helpful so thank you to you!! Your knowledge and experience really shows.

I do think with older children there are a whole set of other challenges and the balance between encouraging their independence and encouraging what they need in terms of managing the constipation is a tricky one to find.

My son won’t even sit on the toilet without a phone in his hand but whatever works I say 😂.

I find I vacillate between feeling positive and patient and on the other hand, when he’s in horrendous pain and swearing at me and crying I feel that things can’t go on like this any longer.

I think with older children control plays a massive part, they resent being told/encouraged what to do even though it will help them.

Has your daughter read any of the posts on this site? I have read some to my son so he knows he isn’t alone. I’ve also tried to make his bowel condition less of a focus to our lives and concentrate instead on things he loves to do like going to the park with his mates. Easier said than done I know. I can only imagine how hard it is with a 13 year old as mine is 9.5

Sometimes a third party can be helpful like a school nurse just to have a chat with (if she’s willing). It’s hard enough being a 13year old girl without having to worry about stuff that probably seems very embarrassing. I think knowing you’re not the only one must be a good thing.

Hope things get better.

How did your son get diagnosed with celiac disease out of interest?

X

[Laundrymaid in reply to Robinia]

Hi Robinia,

Thank you so much for replying! Sometimes it's hard to see the forest for the trees. Sometimes when I read other people's posts I can really see the child's struggle but with my own daughter when we are in crisis, I just get so caught up with the mechanics of it all that I don't always support her mentally.

Right now we have just started winter and our temperatures have plummeted meaning getting the all important water into her is a battle and her brother being diagnosed Coeliac has hit her hard too - 12 years she has struggled with IBS, he has a sore tummy for a few weeks and bam, out of the blue we have a diagnosis and a treatment for him! Seems so unfair 😟.

The Coeliac thing isn't quite that straight forward, it had affected us all and will take some adjusting too. My daughter was tested a few years ago and the screen test was negative. When my youngest started complaining of sore tummies every night I initally thought it was anxiety (I knew it wasn't constipation!), but after a few weeks he begged me to take him to the doctor and when we saw her she was a bit confused by his syptoms. She ordered facal tests ( By this stage I was sure he had picked up Giardia over summer) but knowing his sister's background decided to run bloods which included a Coeliac screen. Much to the Doctors and our shock the Gluten Antibody screen came back extremely high. A Gastroscopy a few weeks later confined the diagnosis. My daughter has been rescreened which was again negative and my husband and I will have to do a Gene test.

So, here we are paying so much attention to what goes in to our children's bodies and equally to what comes out! This forum is often a place to share a laugh or a tear. I'm so glad that you on this journey with us, fellow passengers make the trip more bearable!

The Laundryymaid xx

[Robinia in reply to Laundrymaid]

I imagine her brother’s diagnosis was hard to take after so many years of struggles herself. Must be a challenge having two who need constant monitoring. Sending you big hugs 🤗 from the UK where it’s supposed to be summer but that don’t always mean much 😂. We are off to Open Farm Sunday today for some fun. Hope you guys have a fun day xx

[SallyandPaul]

Good morning. I know exactly what you mean. Our daughter is now nine and has had this for ove five years. She also has had lots of UTIs over the last year. She generally ignores when she's soiled. I know her sensation is poor but there are definitely times when she knows it's there. Antiseptic oilatum in the bath has helped as has wearing sanitary pads. She has recently had scans and thankfully there is no long term damage. The consultant couldn't believe how long this has been going on(I told him that we are not alone!). They may give her an injection of Botox into her bowel to tighten the muscles, I'll let you all know how that goes. It just feels that their non compliance makes it all so much worse.. I wish you all well and only wish I had a magic wand for us all!! Take care xx

[Laundrymaid in reply to SallyandPaul]

Hello SallyandPaul, thank you for responding - I am feeling a whole lot of love and support from you all today 😊 And I'm sending it right back into the universe for you all. It must be working as I haven't had any arguments with my daughter about going and sitting on the loo for the last couple of days! I wish you had a magic wand too! xx

[CatDub]

My son is about to turn 9 so I don’t have a whole lot of experience with 13 year old hormones...I can only imagine. That said, one thing that has certainly helped is his psychologist appointments. He was referred as the consultant at the hospital wasn’t sure initially if it was psychological and there were elements of the problem that were (not liking going in certain environments etc). Talking everything through with a 3rd party that gets it really helps him. She’s the one helping him gain the tools to implement a routine rather than me dictating it to him which he’s not so keen on! With him she related it to his competitive sporty side so now he’s a little more focused on not allowing those sneaky ones to win!

I hope your son also starts to adjust to his new coeliac routine quickly! My youngest (who’s 6) ran to me with his clean dry pants last night saying ‘look mummy my pants are dry too!’ His pants are ALWAYS dry but I guess he was feeling like he wanted in on some of the action and attention I have to show his brother!!

Good luck with the struggle...

Cat xo

[Laundrymaid in reply to CatDub]

Hi CatDub, I think I will have a chat to her specialist at our next appointment and see if we can get a referral to a Psychologist. I think she has enough to cope with hitting puberty without all this other stuff. LOL re your 6 year old!

[JJMUMOF4]

Hello Laundrymaid,

I too have found your advice really comforting and helpful.

I am in no way, shape or form an expert and am still scrabbling about in what feels like the dark here but I can offer you my thoughts.. I really feel with my son that the apparent lack of cooperation is down to denial.. the more I think of it the more I cant imagine anything worse than being a teen in highschool with bladder and bowel problems. As an adult and a parent I struggle to wrap my head around why my son who is clearly suffering would not want to do do anything in his power to help relieve and improve the situation.

Having given it a lot of thought I think it is down to denial and control. I think by denying it is happening they somehow think that it will go away and that they do not have to deal with it??

I dont know maybe I am rambling 😂

With a teenage daughter I can only imagine it is so much harder to navigate together with it being such a delicate time.

I agree with Robinia about whatever works, we have had to restrict tablet and computer time-which my son was furious about at first but we found the accidents were happening most frequently when he was engrossed on the xbox and as he didnt want to come off he was leaving it.

However, once we said he couldtake his tablet to ‘sit’ he soon came around and now will go of his own accord a lot of the time.

My husband said yesterday “you do know that he is only sitting so he can play on his tablet” but it gets him there and it is working so I do not care.

It is hard but we tried to really level with our son and said it was unfair and awful but we are here to help him. We explained that unfortunately there is only so much we can do and that for us a lot of how successful this is is down to him and how well he keeps up with the sitting routine.

I have found the key to it for us has been our son taking the responcibility of sitting and so on so it doesnt feel like a fight and us against him all the time.

That said it comes in cycles doesnt it so just when you feel like you are getting a handle on it.. you end up back at sqaure one.

In all of this with the gp’s, consultants, movicol, blood tests, MRI’s and ultrasounds I have found the greatest source of help and solace right here with the advice and support of you and so many others like us. It doesnt feel like I have said anything that helpful but you are in my thoughts and if anything I hope you feel less alone.

Always here to lend an ear

[Laundrymaid in reply to JJMUMOF4]

Thank you so much, your experience, your advice and the lend of your ear are all greatly appreciated! xx 😀

[Francesca17x]

I often find that the non compliance comes from using denial as a coping mechanism. I find this so frustrating but at the same time I’m glad my daughter has the ability to do this.

I’ve sat down with my daughter so many times and told her she has to help and do her b st to fix this with all the little things I tell her to do but I thi k she is overwhelmed by it all and feels defeated so “what’s the point” x I totally feel your pain as it is probably one of the most exhausting, heartbreaking and frustrating situation to deal with which no one seems to have the answers for. 😩 At least we know we aren’t alone with the help of this forum xx

[Laundrymaid in reply to Francesca17x]

I agree wholeheartedly about the denial - I certainly don't think I would have coped as well as she has with the 'bum' hand life has given her! You have a beautiful name - it's my daughters middle name. 😊

[Hidden]

It seems to me that this is entirely a response to her brother’s Coeliac diagnosis. Let’s walk through a 13 year olds mindset:

1) Why should I keep having to do all this work when it’s not going to make a difference. He deals with it for 3 months and a “little” (I guarantee she doesn’t understand how drastic this will affect her brothers diet, yet) change to what he eats and he’s fine.

2) Everyone loves others to share in their misery (especially kids). This doesn’t mean she wishes ill upon her brother, but when someone else close to her was having to deal with similar issues, it made her feel better.

3) I guarantee that her brother has started to receive more attention. That doesn’t mean more attention than she is receiving; nor does it mean that it isn’t necessary. However, for the longest time nobody else had to receive the same type of attention as her and now her brother is.

The last part of the brain that fully develops is the part that helps us think more logically and less emotionally. Hence the reason that when we go through puberty, we are so emotional. Trying to approach this logically with her won’t work because this isn’t a “logic” response, it is an “emotional” response. Here are some ideas that could help.

1) Have her go with you and her brother to the Doctor who can better explain how Coeliac disease will affect him the rest of his life. He can also explain the symptoms that her brother will have to deal with that are more internal and may not show outwardly. This will help to build some empathy and show her that he is still having to deal with issues, even if they aren’t similar.

2) Talk with her about how she’s feeling. It’s important that this doesn’t turn into you trying to show her the faults in her logic. She already knows these faults, but her emotions are blocking her.

3) She will have to work through some of this on her own. Having to deal with the consequences will eventually get her to come back around.

Hope this helps.

[Laundrymaid in reply to Hidden]

Hello Mamasrus,

Thank you for your thoughtful and detailed reply, you have definitely given me a new perspective, many thanks. The Laundrymaid xx

[Cat192]

Hi there! My 13 year old daughter has a bad case of severe constipation and can't even push properly because it is so painful.

We have taken quite a few different so called miracles to help it and the poo can't get out. It has been a day and a half and now she can't sleep because she is in too much pain. Anyone got any quick pain reliever suggestions?

[Laundrymaid]

Hi Cat192,

My daughter recommends a hotwater bottle, blanket and paracetamol. Definitely up her fluids as this will help get things moving and be wary of using any other pain relief as some types of strong pain relief make constipation worse. If your daughter is very impacted an enema may help things along. We were prescribed these by the GP when our daughter was younger but I think can also be purchased over the counter.

I hope things improve rapidly for the two of you.

The Laundrymaid.