You may have noticed that I’ve been going on and on and on about our experience of moving Miss NHM to a new school so I thought it was time to write something about my experience of Y2.
Four days into September 2017 term we removed Miss NHM from her old school.
The school pastoral team were arrogant enough to do completely the opposite of the comprehensive care plan that myself, Miss NHM’s paediatrician and Miss NHM’s GP put together over the summer and made Miss NHM sicker during her first week back at school. I have since found out that it was illegal for them to do this, based on the Department for Educations “Supporting pupils at school with medical conditions” comprehensive document.
Needless to say that was the icing on the cake after two years of despicable treatment of my daughter.
It was an incredibly stressful time. During that week that Miss NHM started her new school my car broke, the washing machine gave up the ghost, my Mother had what the professionals thought was a mini-stroke and it was the Sitting with Jane Bench auction at which the Teaching Assistant, who had been subjecting abuse at Miss NHM for months, was also at.
(When I reflect on that time, I still wonder how I didn’t end up in the nut house!)
We decided on the Friday evening that Miss NHM would never be going back to her old school.
On the Monday morning I rang round all of the local schools and was beyond delighted to find that one of my favourite schools had one space left for her (I’d already visited a few in June and July in anticipation of her old school still being beyond sh*t).
We were so, so, SO lucky and I thank our lucky stars every day that she’s now at the school she is at.
They have been….FANTASTIC!! I literally couldn’t ask for a better school. ALL of the staff are so lovely and compassionate. It’s such a brilliant school and Miss NHM has THRIVED since she started in September 2017.
Seeing her get better over the past year as a result of just over a year of the Gluten free diet and seeing her in such a safe and happy environment has made my heart sing on a number of occasions.
She’s made some wonderful friends and she really has grown into a healthy and more confident child.
Her anxiety when she started at her new school was through the roof and I was extremely concerned about the impact of moving her to a new school but we realised we didn’t have any choice and despite her anxiety and Coeliac Disease she has completely flourished at her new school and I am eternally grateful to all of the staff at the new school who have helped with this.
Now that she isn’t in pain all of the time her reading has gone off the charts! I’m having to go to the library to borrow books for her as she’s read everything at home and for her year in school! (did you know that you can now borrow 30 books at a time on a children’s library card? Thanks Su for the heads-up!)
Her maths is still behind because she missed most of YR and a lot of Y1 as she was so poorly but she’s getting up to speed quickly.
She has lots of friends in her year and is WAY more chatty that she used to be (double edged sword) probably because she isn’t in pain now. It’s been wonderful to see that she’s been in a year where the children are all down to earth and, apart from one child, there has been no bitchiness or nastiness.
Even the school Mum’s are all lovely. Yes, there are a few cliquey’s but nowhere near as many nasty Mum’s (there were lots and lots of lovely Mum’s there too!! Just in case my friends from there are reading! <facepalm>) as there were at the old school.
With hindsight we probably should have moved Miss NHM to another school earlier but we were struggling with getting her well again and that was our focus. I do believe that everything happens for a reason and when it happens when the time is right.
I’m thankful that we moved her AFTER her diagnosis so that her “unexplained” sickness didn’t carry with her and I’m beyond grateful that the “new” school have been so fantastic.
Based on my experience, if your gut is telling you that your child isn’t happy in their current school have a look around at other local schools and go and visit them. Literally everyone I know who has moved their child to another school has found it a very positive experience for the child in question.
I’m really looking forward to Y3 and seeing how Miss NHM continues to bloom, to become more healthy and overcome her anxiety and thrive. Thank you to those of you who have supported us along this journey so far! I’m very, very thankful for all of you!!!
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Thank you very much to the Mum who has shared some of her, her son’s and her families journey today.
It takes great courage to share something like this and she’s done a brilliant job.
Children With Additional Needs – bladder exstrophy and epispadius
If you met our son you would not know there is anything different about him, he is a fun loving, sport mad, confident 6 year old. However, he was born with a rare birth defect – bladder exstrophy and epispadius – basically his bladder was outside his body.
We ‘luckily’ found out during a routine 20 weeks scan that there was something not quite right, some specialist scans later our unborn baby had been diagnosed with a rare birth defect. Although it was difficult, knowing before birth made it easier for us to deal with, find the right support groups and get ourselves prepared.
When he was born within 12 hours he was taken to Great Ormond St Hospital for his first operation. This was particularly difficult for me as I could not be discharged from Basingstoke, due to difficulties during the birth and he underwent the surgery at 1 day old without me being there.
He underwent his second surgery at 23 months. This was harder to deal with for different reasons, he was now older, understood more about what was going on and didn’t like it when we left his room even for a few minutes.
As a baby there were few differences between him and his friends, everyone wore nappies! As time has gone on the differences are much more apparent. He is urinary incontinent and still wears pull ups. He deals with this really well and manages himself at school and when away from home.
It is hard for him as he is desperate to be like everyone else but as yet he has unable to achieve continence. He is fully aware of his differences and we hope that the challenges he faces over time get easier for him and eventually we will achieve dryness.
Treatment and prognosis for each child with this condition is different which makes it difficult for us to know what the future prognosis might be. We have regular trips to the hospital for biofeedback sessions (practice using the pelvic floor muscles) and further operations may still have to take place. Worst case scenario would be him needing a catheter and although this is not the ideal having seen children deal with this sometimes it seems the easier option.
We try on a daily basis to get him to do exercises and remind him to use the toilet but the bladder capacity and pelvic floor muscles are not developed enough.
We make sure that he has the same opportunities as everyone else and his condition should not hold him back from doing anything. The routine of school is good and he remembers to change, but as soon as there is a school trip or sports event we worry if he will remember and if he has all the supplies he needs.
Finding people that relate to our situation is hard as this condition is rare (approx. 1 in 70,000), but through the hospital and social media there are people we can talk to. Our support from hospitals, school, friends and family has been amazing, other children have been curious about why he is still wearing pull ups but no teasing has happened yet – this is something else we worry about as he gets older.
Given the opportunity we would love him to be ‘normal’, but his condition will not define who he is but hopefully make him an even stronger character than he already is.
P.S. Please remember that not all disabilities are visible.
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I had a question from a NHM Reader that I asked the NHM Community to help with: ‘Does anyone know of any private speech therapists for children local to Basingstoke? (Already referred)’. Many thanks for your responses, listed below in no particular order:
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One of my objectives for NorthHantsMum is to share some of my experience of being a Mum.
The past three years of Motherhood have been really tough for me.
I haven’t talked about it on NorthHantsMum because it’s been a very, very difficult turn of events that we’ve dealt with privately as a family. Not knowing what was “wrong” with Miss NHM for nearly 3 years was indescribably draining and stressful.
However, I’ve realised I can’t be authentic on NorthHantsMum without talking about my experience of Miss NHM’s Coeliac Disease.
We’ve had many discussions as a family about whether it’s the right or wrong thing to share this with NHM Readers as it’s a very private thing.
I’ve talked to Miss NHM (6 years old) about it and she was very wise and told me that it’s ok to tell other people about it because it might help them too. That, right there, is one of the reasons why my daughter is so awesome.
Coeliac Disease
Miss NHM was diagnosed with Coeliac Disease in May 2017.
Coeliac Org say this about Coeliac Disease:
” Coeliac disease is a well defined, serious illness where the body’s immune system attacks itself when gluten is eaten. This causes damage to the lining of the gut and means that the body cannot properly absorb nutrients from food. Coeliac disease is not a food allergy or intolerance, it is an autoimmune disease.” (Coeliac.org).
1 in 100 people have been diagnosed with Coeliac Disease but the belief is that it is actually 1 in 25 people who have it.
There are over 200 possible symptoms of Coeliac Disease and it takes the average sufferer 13 years to be diagnosed. Medical advances are moving forward so quickly that it’s easier to be diagnosed these days, but Miss NHM is still incredibly lucky that we established what the issue was in just 2.5 years, particularly as there is no history of Coeliac Disease in either of our families, that we know of. (Coeliac disease does run in families but not in a predictable way)
The journey
I’ve alluded to it on the blog before but the 2.5 years leading up to her diagnosis were harrowing. I’ve written a post which explains the impact that Coeliac Disease has had on our lives but I’m no where near ready to publish it. It’s still too raw.
When your child is sick and you don’t know why and it takes years to find out why…yeah, it’s been really tough.
I was a bit naive about coeliac disease. I’d heard of it and knew people with it but I thought it was just a case of someone avoiding gluten in their diet and then everything would be fine.
It isn’t.
It’s far more serious than that.
We have to monitor EVERYTHING that Miss NHM eats, to ensure that it doesn’t contain gluten. She has regular blood tests and we have to monitor her energy levels very carefully as gluten free (GF) carbs don’t have the same energy density as “normal” carbs.
However, I am so, so, SO very grateful that Miss NHM was diagnosed so early in her life.
The impact of Coeliac Disease
Coeliac Disease has had a huge impact on my role as a Mum.
Every time we do something or go somewhere I am continuously thinking ahead. Do we have enough food? Will there be any alternatives that she can eat if we don’t have enough? Can we take our own food? Do they have any understanding of Coeliac Disease? Will someone offer her something and I will have to leap in and whip it away from her before she eats it? Do we have a subsitute to hand? Have they even heard of cross contamination?
There are the things that you would expect to look out for, like anything containing wheat, e.g. bread and pasta.
But it’s the things that you wouldn’t expect like barley squash, chocolate, chips, marshmallows, soy sauce, most ketchups, some fromage frais, and even playdough which is made with gluten. There are many, many, many more products which contain gluten which we have had to remove from Miss NHM’s diet.
On the rare occasion that we eat out or at someone else’s house, I’m checking to see whether they understand about cross contamination which is really important for people with coeliac disease. For example, you cannot put a knife in butter that has been used on “normal” bread, because even one crumb can cause Miss NHM weeks of pain and discomfort which affects her wellbeing, her health and her education.
I feel like I spend a lot of my time educating our friends and family, who have in the most part been amazingly supportive, about what cross contamination is and what Miss NHM can and can’t eat.
Using the coeliac.org phone app is second nature now. It’s fantastic!! There are over 100,000 food items listed and you can search by product name or bar code. This little app has been a life saver on many occasions.
Attending events and going anywhere new is now a BIG thing. Birthday parties are a nightmare, with birthday cake and sandwiches. We have been incredibly lucky that parents who we don’t know who have hosted birthday parties, have gone out of their way to ensure that Miss NHM doesn’t get singled out and isn’t treated any differently. We are very, very thankful for that. I try to make it as easy for other parents and friends by offering to provide food as it’s already a part of our reality.
Holidays abroad just aren’t an option at the moment although Coeliac.org has lots and lots of awesome advice for this.
I frequently get invited to review restaurants on NHM but we have to be so careful these days that I just ask one of the NHM Writers to go instead as it’s not worth the drama of having that discussion about the food not just being gluten free but also being free from cross contamination.
It’s such a HUGE part of our lives that I can’t write about being a Mum without talking about it.
Coeliac Disease and NorthHantsMum
As a result of the experiences that we have had with the NHS (unfortunately pretty dreadful in this instance) and The Prison for two years, most of my energy has been spent dealing with all of this and more. I’ve been fairly quiet on the blog over the past few years because of this.
However, now that Miss NHM has been on a Gluten Free (GF) diet for nearly a year and we’ve moved her to a far more sympathetic and understanding school, and as my energy is returning because I’m no longer battling with the institutions in Miss NHM’s life, I’m finding the urge to write more about our lives and more about my experience of being a Mum.
I don’t want NorthHantsMum to turn into a blog which is all about our experience of Coeliac Disease. I don’t want to bang on and on about it (well, I will try not too!) but I do feel that one of the reasons that we’ve been through this experience is so that I can share what we have learnt and also use this as an opportunity to educate people a bit more about what Coeliac Disease is, what it’s like being the parent of a child with an autoimmune disease and how it impacts our lives.
I never, ever, EVER wanted to be that Mum who has to make a big deal about what their child eats ALL the chuffing time.
I never wanted to be the Mum who has to check every…single…item that passes my child’s lips.
But I am and I’m dealing with it.
We’ve been incredibly lucky so far with the support that we have received from our wonderful friends and family and I hope this post goes a little way to explain what it’s like being the Mum of a child with a serious autoimmune disease.
Coeliac.org
If you would like to help Miss NHM with managing her disease, one of the best ways you can do this is to help raise funds for Coeliac.org. They have been invaluable for us.
For example, last month Miss NHM presented to the whole of Y1 and Y2 about Coeliac Disease as part of “Inclusion week” and we used one of the “Young Champions” packs from Coeliac.org to help with this. I won’t dwell on the fact that she told the Y1’s that she got Coeliac Disease from when a tarantula bit her as a baby (facepalm!) but I’m so proud of her for doing this because less than 6 months before she wouldn’t have physically been able too.
One of the ways you can help to fundraise is to join Coeliac’org’s weekly lottery where you can win up to £10,000 every week. It costs just £1 a week to enter, or £2 to double your chances of winning.
The money raised will not just help Miss NHM but anyone impacted by Coeliac Disease.
As always, thank you for your support and thank you for reading NorthHantsMum!
Louisex
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I am absolutely delighted to say that Miss NHM’s Y2 Autumn term has been…AMAZING!!!!! She is THRIVING at her new school.
Finally, finally, finally she’s had a positive experience of school. WHOOOHOOOOOOOOOOOOOO!!!!!!
Moving Schools
At the beginning of this term (September 2017), 4 days into the new school year, we removed Miss NHM from The Prison.
It became blindingly obvious that The Prison weren’t going to listen to anything that we, and the medical profession, were saying needed to happen for Miss NHM.
In May 2017 Miss NHM was diagnosed with a lifelong autoimmune disease. I’ve not discussed it on NorthHantsMum because it’s not something that should be discussed in a public forum and Mr NHM and I are still processing what this means. It was a massive shock and it’s been incredibly difficult to deal with.
In the final months of Miss NHM’s Y1 at The Prison, she was subject to bullying and abuse (I don’t use those two words lightly) at the hands of one of the members of staff (again, not going to discuss details in a public forum) and the school made things as difficult as they possibly could.
So, we made the incredibly tough and difficult decision to remove Miss NHM 4 days into the new term. I wanted to give The Prison one last opportunity to rectify things and they screwed it up massively.
Finding a new school
I spent a morning phoning round all of the local schools asking if they had any places left. Based on The Prison’s history I’d already gone to look at two local schools in June 2017. I was extremely disappointed to find that two other local schools that I phoned that Monday morning in September were quite rude to me when I mentioned Miss NHM’s disease and implied that they would not be able to support her effectively.
I was EXTREMELY delighted to find that there was one place left at a local school that I’d visited earlier this year. I was really, really impressed when I went to see the school which only a few years ago was under special measures. It was very obvious that the team in place were extremely passionate about what they were doing and their main objective was to ensure that children had fun at school, that they enjoyed school and that they learnt lots, not just educationally but emotionally and spiritually – the whole package.
I did a little dance when they told me that Miss NHM could start the following day. Actually, I did a REALLY LONG dance because I was sooooo relieved!!!!
They advised that Miss NHM could start the following day but I didn’t have time during the work day to get to the shops to get her the new school cardigan so she started on the Wednesday.
Starting a new school
Both of us were obviously quite nervous but the new school bent over backwards to ensure that both of us felt very welcome. The complete opposite of what we’d experienced before!
Within a week Miss NHM had made lots of new friends, including a best friend that she is “thick as thieves” with, as the teacher said at the first parents evening in October! lol.
Miss NHM settled in far better than I ever imagined she could. The difference in her behaviour after the first week was astounding. I had no idea what a negative effect The Prison was having on her.
Things just got better and better. The school have been soooo understanding and soooo supportive and everyone is so lovely and welcoming and HUMAN! Empathy and compassion is normalised (even with the reception staff!), which has been a massive shock as that’s definitely NOT the experience that we’ve had before.
HAPPY, HAPPY, HAPPY!!!!!
Miss NHM’s reading has gone off the charts, she’s improving with her maths, her mental health has improved dramatically and although she is still showing signs of trauma and anxiety the new school have bent over backwards to support her.
I have been wracking my brains for the past term to try to find something that I don’t like about the new school and I just can’t! I love it ALL! I cannot praise the new school enough. This may be because of the dreadful experience that we had at The Prison so my expectations were very low already but I’ve spoken to several other parents at the new school and they love it too.
I’m so delighted, after an incredibly tough year, to say that we’ve ended on a real high. I no longer have to battle for an hour every morning to get Miss NHM to school, she happily skips in. No more dragging her through the door with the teacher’s help, she skips straight in without even looking back to say bye!
To see her happy to go to school every day has been a real revelation and to see her receive the support that she has needed since she first started school in 2015 has been such a relief.
So, FINALLY, I can report that we’ve had a very happy experience of Y2 so far. YAY!!!!!
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This is a really heartbreaking post that a NHM Reader has asked me to share with you.
Please, please, please DO NOT tag anyone on this post in Facebook or any other social media. Thank you for your understanding.
The Mum who has sent this to me has asked that if anyone else is dealing with the same situation to please contact me, NorthHantsMum@gmail.com, and I will put you in touch with her.
The Mum has also asked me to state that she is absolutely NOT a medical person and this is just an account of her experience, not in any way meant to provide medical advice.
If you have a unique parenting experience that you would like to share with other NHM Readers, in the hope that your experience might help others, please email me your text and pictures to NorthHantsMum@gmail.com.
What is encopresis?
Encopresis is a symptom of chronic constipation. Children do not know or understand the sensation of when they need to do a poo.
Potty training
When my daughter first used the potty for a poo, when she was 18 months old, she screamed the house down. I was warned that she may have a negative reaction to it because it can be a bit of a shock to a toddler, when they no longer poo in their nappy but actually feel the poo coming away from their bodies. We thought nothing of this but continued trying to potty train our daughter.
When my daughter turned 3.5 years old I started to worry as she was still having daily poo accidents at nursery (she attended nursery 2.5 days a week). Nursery started saying that I needed to try to potty train her in earnest, despite us having tried a number of times.
Realising things weren’t “right”
With 9 months to go before my daughter started school and shortly after my daughters fourth birthday, I got the health visitor involved. She came round and gave me lots of information, particularly about the eric.org website. We had some success, for example my daughter did her first poo in the toilet just after her fourth birthday. The Health Visitor came back a month later to see if we had made some progress. We tried the marble in a jar solution and it seemed to improve things, but it didn’t last. The health visitor told us it was a developmental issue and would resolve itself eventually.
Doctors
In June 2015, three months before my daughter was due to start school, I decided to get the Doctors involved as my daughter was making no further progress with doing poo’s on the toilet and we wanted to get things resolved before she started school in September 2015. I requested a woman Doctor as I felt this was most appropriate. The Doctor questioned my daughter about her using the toilet and said she was very grown up for her age as she answered the Doctors questions far more comprehensively than expected. The Doctor then gave her a physical examination but found nothing physically wrong with her.
At the same time we were having the settling in periods at my daughters new school. I mentioned the issue that my daughter was having to the teacher, who informed me that it wouldn’t be a problem but I needed to check with the teaching assistant. I spoke to the teaching assistant who informed me (quite rudely) that if my daughter wasn’t capable of “cleaning herself up” then I or my husband would be called into school each time, to clean her ourselves as nobody at school was able to touch her because of child protection policies. (I have since found out that it was unacceptable for her to even suggest this).
At this point, our daughter refused to clean herself so I spent three agonising months worrying about whether I and/or my husband were going to be called out of work regularly to sort out daughter out. It was even suggested by another “helpful” person that we homeschool our daughter until this “issue” is resolved.
School
My daughter started school in September 2015 and we were still no further forward. She was still having daily accidents in her pants. The school were extremely unhelpful. I felt judged and the Teaching Assistant implied on a number of occasions that we hadn’t tried to potty train our daughter. It was pretty awful that my daughter would run out of school at the end of the day and the first thing she would say was how many accidents she had had that day. If my daughter didn’t come straight out and tell me, the Teaching Assistant would announce it in the playground.
In October 2015 my four year old daughter was bullied by some girls in her class. My daughter wasn’t good at telling people when she had done an accident, probably because she was embarrassed even at that age (One of the symptoms of encopresis is that you can no longer smell your own poo’s and I also think she had become immune to the smell.)
Two girls in her class started calling her “stinky”. When she came home from school that day she was very quiet. I knew something was wrong but she wouldn’t tell me. At bed time, I asked her what was wrong and she burst into tears. Proper, awful, body rocking sobbing. It was utterly heart breaking and totally gut wrenching to have my four year old in a state of complete distress that I could do nothing about. We explained gently to her that she needs to tell the teacher or teaching assistant when she’s had an accident. I completely fell apart that night after she cried herself to sleep in my arms.
The next day I spoke to the teacher about the bullying incident and she shrugged her shoulders and said that, despite them trying to ensure that no bullying happened at school, there was nothing she could do about it. Ironically the subject of anti-bullying was covered at school that week but this clearly didn’t mean anything in reality! I was furious so got straight onto the Doctors for another appointment.
I tried to get an appointment with the woman Doctor who had given my daughter her physical examination but, for whatever reason, she wasn’t available. I had done more research by this time and was utterly convinced that my daughter had encopresis. My husband and daughter came to the Doctors appointment as well. The Doctor told me that my daughter didn’t have encopresis (without even checking her over!) and that I was clearly a neurotic mother and that my daughter would learn to use the toilet in her own time. I then requested to be referred to a paediatrician (a friend had reminded me that my husband had medical insurance cover for our family and my daughter would be covered under this) and he refused to refer us to the paediatrician until after my daughter had tried two weeks of Movicol, the laxative. We tried two weeks of movicol, a low dose, and it made no difference at all.
In the meantime another friend had been to see the School nurse for a medical issue that her child was having and she mentioned the issues we were having. (I will always be extremely grateful to my friend for her help with this). The school nurse said that I had to demand that the Doctor refer us to the paediatrician otherwise they wouldn’t do anything.
I then phoned the Doctor, again having to wait another week for a phone call appointment and had a twenty minute “discussion” with the Doctor who eventually gave in and said he would give us a referral but “it wouldn’t make any difference because your daughter doesn’t have encopresis”.
I phoned the school nurse (did you know there are only 3 school nurses that cover ALL of the schools in North Hampshire?) and left a voicemail. They never called me back.
I mentioned in passing to the teacher at school that it was probably encopresis. She had never heard of it before and said there was nothing she could do until it was diagnosed by a Doctor.
By this time it was Christmas 2015. It took a week to be referred to the private paediatrician and we managed to get an appointment between Christmas and New Year. (I can’t tell you how grateful I am for private medical insurance!)
We spent 30 minutes with the paediatrician. She spent 15 minutes talking to our daughter about how she needed to use the toilet and why wasn’t she using the toilet as she wasn’t a baby. She then asked to check over our daughter’s tummy. Immediately her tone changed. She said she could feel impaction and that our daughter needed an X-ray. We had the x-ray there and then (which our daughter really enjoyed! Children! ) and were able to look immediately at the picture. The Paediatrician explained the picture and showed that our daughters bowel was so large that the impaction had expanded to under her ribs and it was one of the worst cases of encopresis that she had seen in 15 years of being a peaditrician. Our daughters lower half was literally full of poo.
All of the dark patches. including in her ribs, are poo.
She put our daughter on a hard core case of laxatives (8 sachets of movicol at one point) for two weeks. We were literally swimming in poo. It was awful but my daughter coped admirably. We cancelled all of our plans between Christmas and New Year because we needed to be at home to “sort things out”.
It was a huge relief once we had the diagnosis and I thought our troubles were over…
I phoned school to explain the situation as my daughter’s laxatives didn’t finish until the Thursday of the first week of school. I was told that because they didn’t have a shower or the facilities to clean her up, she would need to stay home. So my daughter had to have four days off school whilst the laxatives “cleared her system out”. I spoke to the head teacher who sympathised with our situation and she said she would get the school nurse engaged for our support.
We went back to see the paediatrician and talked through the different strategies that we would need to engage. Our daughter would need to sit on the toilet for 10 minutes as soon as she got up and that she needed to sit on the toilet frequently throughout the day. We needed to make it as fun as possible. Lots of games, books and toys in the toilet to keep her amused and keep it “fun”.
We tried all of these strategies but it was extremely distressing. Our daughter would scream relentlessly if we tried to get her to sit on the toilet. It took all of our negotiation skills to get her to use the toilet at all for a while.
Six weeks later I saw the head mistress and asked if she had heard back from the school nurse. She said the School nurses were very busy and as our daughter wasn’t a critical case they would get to her when they got to her.
The next day we had parents evening. We were told by the teacher that our daughter was extremely “behind” and unlikely to catch up because she had missed so much class time because of her accidents and would be failing YR. When I asked the teacher what she was doing to resolve this she responded with: “I have 29 other children to teach”.
It took about 3 hours for this to sink in and it was only when I got home and relayed the conversation back with my husband, that I got really, really angry.
School Nurse
The next morning I phoned the school nurses, managed to actually speak to someone and lost my rag. I ended up bursting into tears and ranting about how I felt that all of the institutions in my daughters life had let her down.
Within 2.5 hours I had a school nurse sitting on my sofa. It’s a huge credit to them that they responded to my call as quickly as they did.
The school nurse spent 1.5 hours with me, asking all sorts of questions about whether my daughter had meconium when she was born, what her first experience of the potty was like, what her diet was like, etc. etc. By the end of our conversation she did say that I was clearly well read on the subject and that we appeared to have tried everything. She then informed me that my daughters condition is very serious and could lead to her having a colostomy bag and not being able to have children when she got older. She also explained that my daughter needs to be considered as disabled and needs to be treated, especially by school, as disabled. I got a bit hysterical when I explained this to my husband when he got home that evening from work.
The school nurse worked through a care plan for my daughter which involves her sitting on the toilet for 5 minutes every hour. She had to drink at least 650ml’s of water a day at school because dehydration can exacerbate constipation. We were to stop her milk in class immediately and she wasn’t allowed chocolate or bananas anymore. (I was only allowed to change our daughters school meals with the permission of the school nurse and I had to list all of the meals that our daughter could no longer have).
To her credit again, the school nurse went in to see the school the following day, took lots of leaflets from the eric.org website and highlighted to them just how serious my daughters condition is. She told them that they needed a stool for my daughter in the toilet and she needed regular support at school. She also advised that they implement a book that they used to record the times she had been to the toilet and the water she had drunk so that my husband and I were informed.
It took nearly 4 weeks to get the care plan implemented in school. By this time it was March 2016. I was advised by another friend to set up regular meetings with the head teacher, to keep the school accountable. We have had a meeting with the head teacher every month for the past 6 months and they seem to be upholding their end of the bargain. However, it was eye opening to me that they could have turned my daughter and her extra care down and we would have had to move her to another school! I didn’t realise they had a choice! (I have since found out that this isn’t true: http://www.eric.org.uk/Schools/Toilet_Training)
In April 2016 the school started to invite the “Physical Inclusion Development Officer” (PIDO) to our monthly meetings. We explained that our daughter had recently started having wee accidents again as well as poo accidents. The PIDO explained that it was likely that our daughter was impacted again and would need to have another “flush”. She recommended that our daughter have at least 16 sachets of movicol over a couple of days. It was another horrific experience and we were using everything we could possibly think of to get the movicol into our daughter, including making ice pops and jelly with it. Our daughter thought it was brilliant as she had a week off school AND jelly.
We had an appointment with the private paediatrician at the end of May 2016 and she said that because we’ve tried everything and our daughter still doesn’t seem to be able to use the toilet properly, she clearly has a deep seated fear of the toilet. She referred us to a child psychologist. We had our initial meeting with the psychologist which took 1.5 hours and at the end of the meeting Dr Ana hugged me and told me that I was finally with the right person and she would help us. She needed to send a letter to the medical insurance explaining the situation so that we could have authority for them to pay for future sessions.
A week later the insurance company turned down any extra funding because our daughter’s issue was “behavioural” not medical. We never heard from the child psychologist again. We were advised that if we wanted to go through with seeing a psychologist we would need to pay £3k in fee’s. My husband and I had many long conversations about what to do and agreed that we didn’t want our child to be used as a lab rat and that we would handle things ourselves. I still stand by this.
During the summer holidays in 2016 we went to see Lily at the Life Right centre, a hypnotherapist that another friend had suggested (Another person who I am deeply indebted too).
Y1 at school
On the way to school on the first day of Y1, September 2016, I had a chat with my daughter about her being old enough to understand that she needs to use the toilet now she was 6 years old and in Y1. We had nearly a month of her using the toilet and having no accidents at school. It was awesome although I’m now convinced she was partly withholding as she would have an accident as soon as she got home. School were putting her on the rainbow for every day that she didn’t have an accident and she was so pleased with herself! :-D.
We did have to start all over again with her new Y1 teacher, but they are far more understanding and sympathetic than her old YR teacher. This has really helped as they have made more of an effort to understand and to reward our daughter when she has done well with her toilet training.
In Y1 the staff categorically won’t change her because she’s “older now”, so she has to change herself. I have very mixed emotions about this. It can take her up to 45 minutes for her to change herself so she often misses lunchtime play because she has an accident after lunch.
Then she got sick in October 2016. And everything regressed. We had half term and she categorically refused to use the toilet. We made some progress after half term at school but I know she’s just exhausted with it all now.
This week she missed her Christmas play because she had an accident just before the play and managed to get poo over her outfit because there weren’t enough people to look after her whilst she changed herself. My poor husband had to sit through the play because I got called out just before it started, to change her, and he had to watch a play with all the other children, knowing that our child was missing out on ANOTHER key milestone in her life. I spent 15 minutes sobbing in reception, being judged my the receptionists and went home in the end.
Frustration
In YR in May our daughter started lying to the teaching assistant when the TA asks her if she’d had an accident. As a result of her lying to an adult about having an accident, she was immediately put on the “thunder cloud”. This did not sit right with me. Yes, she should not be lying to an adult, but it’s not as straight forward as that. Plus, I have no idea if they humiliate her in class by explaining to the rest of the class why she is on the “thundercloud”.
I mentioned it to the school nurse and asked if I was being a neurotic mother and she said absolutely not because in this situation we should all be focusing on the positive, never the negative.
In a recent meeting with the school in October 2016 the head mistress said that our daughter is using this experience as “attention” seeking and that she seems to enjoy the attention that she gets when she changes herself. I don’t doubt that my daughter is enjoying the extra attention as she’s a smart cookie, and this has also been a struggle at home as she loves telling people that she has a “medical condition”, even though we’ve tried not to talk about it in front of her. .
In Y1 it seems to be better. Although at home our daughter categorically refuses to accept when she’s had an accident and will scream at us and resort to violence if we even suggest changing her.
Support
We were advised by the paediatrician NOT to make a complaint about the Doctor who called me a neurotic mother because the paediatrician wrote a letter to the practice explaining the extent of my daughters encopresis which made it obvious that the Doctor had made a big mistake.
The practice also changed our daughters laxatives in April 2016 from Movicol to Laxido with no consultation. When our daughter had four nights of liquid poo accidents when she started taking laxido (it was horrific), the first night poo accidents she had had since she was 18 months old, I spoke to the Doctors and was told that they had switched to laxido because it was cheaper and they needed to document exactly what the impact of the Laxido was because it had the same ingredients as the Movicol.
The practice also refused to initially give my daughter movicol because we had it on a private prescription so I had to go through the whole rigmarole of obtaining the online log in details, only to be told they wouldn’t give it to our daughter without a telephone appointment, the first of which would be available in 10 days time. I had to phone the private paediatrcian again, to get her to intervene.
We are now seeing Lily at The Life Right Wellbeing centre and things seem to be getting better. Lily has supported lots of other children who have had encopresis before so we keeping everything crossed that things start to improve soon.
If I’ve learnt anything from this experience that I would like to share, it is that if your child has chronic constipation DEMAND a referral from your GP to your closest Paediatric Gastroenterology team, as they are really the only people who know what they are talking about.
Things we have learnt about encopresis
Chronic Constipation affects 1 in 100 children.
“Proper” Encopresis is incredibly rare.
The NHS won’t diagnose chronic constipation/encopresis until a child is at least 8 years old. If you want a diagnosis earlier, you need to get an x-ray privately.
Chocolate, Bananas and milk can all cause constipation.
Not only have we cut these out of our daughters diet but we have all found further research that suggest that all forms of dairy products can cause constipation, so we tried cutting out the majority of dairy out of our daughters diet and we try to substitute her food for a few months. However, after three months it wasn’t making much of a difference and it’s actually quite dangerous to cut food out of a child’s diet so our daughter now has limited dairy and goats milk.
The NHS have been pretty crap for us in this situation. Even the NHS website is disparaging about what encopresis and chronic constipation is. The fact that we had to get a private paediatrician to take us seriously, speaks volumes.
Tesco’s sell the cheapest pants. We spend the same on pants now as we did on nappies when our daughter was little. I used to clean them out but now we just bin the majority of them. Cleaning poo off of her other clothes at the end of each day is demoralising enough.
The eric.org website is a fantastic educational tool. It has lots of information and suggested strategies for helping to over come chronic constipation.
We cannot go anywhere without our changing bag. We have to carry supplies with us everywhere we go. It’s not a big thing but it is a thing.
Vanish carpet cleaner is the best thing to get poo out of the carpet.
Following a rigid plan of monitoring when and what our child eats, drinks, how much water she has in a day, how often she has sat on the toilet, the level of what her poo is like, remembering to sit her on the toilet within 15 minutes of every meal (often while she is refusing to sit on the toilet) and cleaning out clothes and pants filled with poo, on a daily basis has taken it’s toll. My husband and I thrive under a challenge but after nearly 3.5 years of battling to get the best support for our daughter and the daily stress of living with our daughters situation, we are exhausted.
Movicol sucks the water out of our child’s body, to redistribute it to the poo. This means that our daughter has to drink a LOT more water than other children. It’s taken 1.5 years for school to really understand this and I frequently have to remind them that she needs to drink more water at school.
One of the side effects of movicol is severe gas.
We don’t have holidays abroad unless it’s staying with friends, because of the change of water, diet and routine, access to laundry facilities and much as I am desperate for a holiday beside a swimming pool, it’s just not practical for us.
When your child has a chronic health condition which means they soil themselves between 5-12 times a day, at any given moment, it affects everything. Everything.
Even if you tell school about the medical reasons as to why your child is off school, you can still expect a snotty letter telling you that your child’s attendance is lower than required.
I dread our child getting sick. It takes a lot longer for her “poo” to recover. Once she is better, even if we reduce her movicol, it still takes a few weeks for things to “settle” down. This is even more challenging because we can’t let her wear pull up’s because this will undermine all of the progress we have made in the past year.
It has been an extremely stressful experience for our family. We’ve been told, time and again, that chronic constipation is more common in boys and one friend suggested that our daughter might be autistic. Nope, she’s in intense pain a lot of the time and no one knew.
Not being able to talk about it to people, because we don’t want to embarrass our daughter, has been tough. Really tough.
The few friends who know about our daughters situation, a couple have suggested that we move her to a different school. If only it was as straightforward as this. Our daughter loves school and has been through enough stress with her chronic constipation that we don’t want to move her to start all over again. It’s taken a while but it finally feels that school realise how serious her condition is. It would be nice if they had a little bit of sympathy and understanding, but you can’t have everything!
Final Thoughts
The paediatrician said that there is nothing as parents that we could have done to stop this. It’s a medical condition and no matter what we did, it still would have happened to our daughter.
Being a “chronic constipation parent” is a very lonely experience. Many of our friends don’t understand what we are dealing with, let alone strangers. We are lucky that we haven’t had many disparaging comments from “well meaning” people. It still hurts though. Most people have never even heard of chronic constipation or encopresis and therefore have no understanding at all.
In my experience, if you think your child has chronic constipation or even encopresis, be prepared to fight. I read online that a man in the US made his child sit with some poo on their nose for a whole day, as punishment for having continuous accidents. This made me weep. All of the children out there who have been mocked, beaten, ridiculed for having this condition because their loved ones didn’t understand or weren’t prepared to fight for them. I am determined that this doesn’t happen to my daughter, even if it has been one of the most stressful experiences of my life. This is also why I am sharing some of our story. If our experience can help another child so that they don’t have to go through what my daughter has, then that will be fantastic.
Our daughters condition is not resolved yet, by any means. It could take years and I’m terrified of the bullying that my daughter is likely to experience the older she gets.
My daughter doesn’t deserve to be treated the way that she might be. She didn’t ask for this.
I am going to continue to do what I can to try to improve everything for my daughter and I will continue to ensure that she gets the best level of care that she deserves.
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This is a heartbreaking read. I can relate to so much of what is in this post because Miss NHM also had a posterior Tongue Tie and it wasn’t identified until she was 9 weeks old.
Reading today’s post has bought bank a lot of painful memories for me of that very difficult time but hopefully this Mum’s experience may help other Mum’s who are going through, or have been through, the same thing. The last sentence on this post is spot on.
Thank you very much to the anonymous reader for sharing her experience. I know it’s not easy writing something like this but hopefully it’s helped as part of the healing process.
If you would like to share your experience of anything to do with being a Mum or parent, please get in touch.
A NHM Reader’s Experience: Tongue Tie
Tongue tie, as a first time mum I had no clue what this was and the problems your little one can face from it. Throughout my pregnancy as like all mummies to be, I just wanted my baby to be healthy and arrive into the world safely.
However Tongue tie was one of the things no one had even thought to make me aware of, considering it is so common with apparently 1 in 8 babies being born with it and how easily it is to fix. Hopefully by sharing our story I hope more mummies are made aware of tongue tie.
On the arrival of my beautiful baby girl, I was put in a side room at the hospital. The midwife initially checked my baby could breastfeed and then I was left to it. We saw a health assistant once more briefly to check that everything was OK, the paediatrician quickly checked her over and we were given the all clear to go home.
On going home we saw the midwife for the follow up visits. On one of these, they weighed my little girl and found she had dropped weight but this was less then 10% so they were not concerned.
However on her five day check, we went to the clinic and on weighing her, it was found her weight had dropped further. As a new mum, five days post giving birth you are very emotional and it is the last thing you want to hear that your baby is dropping weight, rather then gaining.
At the clinic I saw two older midwifes and they asked me to show them how I was feeding her. This was an eeekkkk moment as I’m not a mum that is confident breastfeeding in front of people. However I knew I had to suck this up and get on with it, so I did.
On doing this, I was told immediately the way I was holding her was wrong and to hold her like a rugby ball under my arm. I was then asked questions about my milk supply and they came to the conclusion this was failing and told me to get some formula in!
I held myself together but on leaving the clinic and getting back to the car, the tears just rolled down as it was the worst thing I could have been told, that I was unable to feed my baby well enough and all I felt was that I was a complete failure.
That evening I tried to struggle through but feeling so low and with no real support on breastfeeding, I caved and sent my husband to Tescos at midnight to buy formula. All I could think was I was starving my baby who was crying and getting more frustrated as she was struggling to feed, so I had to get some milk in her someway. However this did not solve our problems and just brought on a whole load of different issues.
We started on formula and within days we had stopped breastfeeding altogether as she just couldn’t latch properly. We thought this was best and her weight started going up. The midwifes were happy and we were subsequently discharged from their care. We thought great our baby is now on the right tracks and all will be fine. How wrong could we have been!
In the subsequent weeks our little girl started to suffer with colic, reflux and projectile vomiting whenever she had a bottle. The colic was the worst as our poor girl was literally in pain and cried continuously for hours on end as she was just full of wind, to the point she would rattle with it.
We spoke to the health visitor who said to see the GP, so we did. I explained all her symptoms and I was just given medication to try to help settle her. At no point did the GP or health visitor check in her mouth to see that she had a good latch but it was a case of being told that babies do suffer from colic, sickness and reflux when being fed formula and that it would pass.
However the symptoms were just getting worse to the point that one day while I was home on my own, I had given her a bottle but she started to choke and turn blue.
This is honestly the most scary situation seeing your baby looking terrified as they cannot breath. I managed to get her to throw up and she started breathing again but was inconsolably crying.
I took her straight to A&E as my instincts knew there was something wrong with her and this was not normal. On arrival, I asked her to be booked in and told the receptionist what the problem was, she looked over the desk and commented, well she looks ok now, she’s breathing! I couldn’t believe this and politely but in a no messing with me tone, said that I still wanted her seen to regardless of the wait.
On seeing the nurse in triage, due to her age we were taken through to see the doctor. I again explained the situation and what had happened but they had no clue why she had choked and put it down to one of those things.
The doctor in A&E referred the details to a paediatrician and we were taken to the day ward for observation. They again checked her over and I explained what had happened. The consultant said it sounded like she had just choked and that this can happen when babies are so little as they don’t have a gag reflex yet. She said if it happens again to put her on her front and pat her back which should clear it.
Each time we saw someone we were asked if this was our first baby and when we said yes, the ‘look’ of oh they are first time parents worrying too much came out. As she didn’t do this again while we were there, we were sent home with the advice we had been given.
Over the months proceeding this, we struggled on and found ways to help stop the choking with reflux wedges and sitting her upright for an hour after a bottle. While we did this the next challenge we had was getting her to drink a bottle. Our poor girl was still suffering and we felt like we just had to struggle on as it would get better in time, as this was what we were being told repeatedly.
On taking her to her monthly weigh in, her weight was really starting to struggle. The health visitor at my local one looked at me and said oh her weight has dropped what are you doing with her, what’s happened to change this?
Again this is not what I wanted to be faced with, a question to make me feel as though I was at fault for my beautiful baby girl not gaining as much weight as she should. I replied to say nothing had changed but I was still having the same issues. A
gain no one thought to check in her mouth and it was put down to a blip and she would pick up again. I swiftly left the clinic, again feeling as though I had failed my baby girl. I hated going to the weigh ins after this, to the point I would work myself up beforehand so I decided to buy my own scales and do her weight checks myself at home.
On approaching four months old, her weight had dropped to between the 9th and 25th centile. She was also getting to the point she would only drink an ounce or two of milk at a time and then she would refuse anymore. I knew this was due to the pain it was causing her so I spoke to my health visitor but she didn’t really help and said to go and see her on the next weigh in.
I thought this is not right and I was so worried as I knew my little girl was suffering, I needed to find out what was causing it so I decided to google her symptoms. Normally I would never do this as it can give you so many horror stories and cause unnecessary worry but I had to see if there was any possibilities of what was wrong with her. On looking at the search it all pointed to tongue tie.
The helpful reference was this chart that listed out the symptoms:
From looking at this list, my little girl had all the symptoms so I wasted no time and booked her into see the GP. The GP checked her but wasn’t sure so asked the midwife at my practice to have a look. She first of all put a finger in her mouth to see what suction she had and the poor girl didn’t have any. They agreed the best thing to do was to refer her to the paediatrician at the hospital that dealt with this and go from there.
On speaking with his secretary on the Monday morning, she took my details and then asked how my baby was fed, I said by bottle and suddenly the tone of the call changed, where she informed me that the paediatrician only dealt with breastfed babies.
Even with me explaining that there was no possibility she could do this and how her health was suffering, I was told he may see her but it would be at his absolute discretion, plus I would have to wait three weeks for this honour.
On putting the phone down I thought to myself sod that, I’m not being made to feel like a second class citizen for bottle feeding my baby as she couldn’t breastfeed so I looked online for somewhere I could have her seen to privately. This is where I found a website that listed all the tongue tie practitioners in the country,
I looked through the list of practitioners in my local area and called Katherine. On speaking to her and trying to discuss the problems we were having, I just broke down on her and cried.
Katherine was great, she said she could certainly help and gave me an appointment for the following day at her clinic. On going to the appointment, after explaining the symptoms and looking at her weight chart, she looked in her mouth and confirmed she had a posterior tongue tie which was restricting her tongue by over 50%.
Katherine explained that posterior tongue tie is not picked up so easily as it is not visible but it was very easily treated. Katherine told me what she would do to release the tongue tie which involved one cut to the piece of skin with surgical scissors and that it would take less then a minute.
She asked me to leave the room while she did it and by the time I got to the waiting room and sat down, it was all over. One little snip with the scissors by a trained health professional was all that was needed. This cost £95 privately and I can’t tell you the relief that I felt knowing I wasn’t an over bearing first time mum and that my instincts were right. More importantly, my beautiful little girl would hopefully now start to overcome this and be out of pain.
Picture of her posterior tongue tie
Picture after the procedure
I will say this made a difference straight away. The colic and wind settled down as she was not sucking in air. The reflux also calmed down and choking stopped over the proceeding days.
However she had learnt to adapt to having a restricted tongue for the first four months of her life so she had to relearn how to use her mouth and the muscles with her tongue now freed.
This took several months to reeducate her but she is now a completely changed baby. She’s happy, no longer in pain and her weight is back up, which makes me one happy mum.
Looking back, I have such a mixture of emotions about what we went through as a family. From anger to pure sadness that my little girl was left to struggle and be in pain for the first four months of her life.
I also feel so let down by all the health professionals that saw her as no one picked this up sooner. Such a simple thing to fix but the problems and pain it caused her unnecessarily, when she could have been thriving and happy.
Ultimately I have learnt from this, that you should always trust your instincts as a mum, you know your baby best and don’t think you are worrying unnecessarily.
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