Down Syndrome

Kyd's Month Of Hell - Negligent Dr's and Success

We started off February 2012 with a lovely meal out for my birthday, we ended it in hospital. 

Kyd is your average kid when it comes to snow but snow dislikes Kyd more than I dislike courgettes! He loves to play in it... mainly because for years he wasn’t allowed to. He always seemed to get chest infections and illness’ after playing out at break times in temperatures in the minus’, so I stopped him going outside in them unless he was wrapped up with an over the top amount of layers and was careful who he mixed with after. It seemed that the colder it got the less his immune system could cope, as colds turned to flu and coughs turned to chest infections. As he grew up and we managed to get the Flu jab each year he seemed to not be getting ill as much... he still caught bugs but his chest seemed to stay clear. So this year I decided I may have been acting slightly over the top and so I let him go out at break times in the snow with his friends... little did I know, that this would be the start of weeks of sleepless nights and illness... I’m not 100% that this is to blame but it’s a bloody coincidence it all happened at the same time.

Your average winter for us includes many bouts of illness and lots of individual days off school. As he’s grown his immune system has got stronger and he has been a lot healthier... we still had time off and illness’ but not as many as before. I had gained hope that eventually he would be fit enough to fight off most illness’ and he’d be at school as many days as he should be throughout winter as well as summer. You see, summer is a completely different story! He’s happy and healthy and although he suffers from Hay fever this is controllable and easy to manage... we make the most of our summers each year as we only have a few months of it and then it’s back to hell. 

So, back to his month of hell...

We began with a cold... just your average cold... we then had a cough... just your average tickly cough... we then progressed to a chesty cough... which progressed to a chest infection fit for a king. This chest infection came on faster than a bullet in a drive by and was so intense he had to have several weeks of the lovely banana antibiotics and several weeks off school. He lost his appetite, then got it back... then lost it again and for Kyd this is worrying. He loves food and he only doesn’t eat when ill. But this run of illness was just the start... what was happening elsewhere in his system was to become the next hurdle.

Kyd has a bowel condition called Lazy Bowel Syndrome. This causes chronic constipation and means weekly medication just to get him moving... sometimes this doesn’t work so we have to double the dose... sometimes this also doesn’t work so we have to triple the dose.  Once in a blue moon this also doesn’t work and we are left with a very full Kyd and a very painful belly. We then have to have a trip to the hospital clinic and then they give him an enema to clear him and we are back to square one.... BUT as we found out last year, quite abruptly, due to the hospitals constant change in system apparently this is now ‘not what they do’ they will not administer enemas to children unless it is completely necessary (apparently nearly 3 weeks wasn’t classed as ‘necessary’ last year) and it had to be under sedation. This means being admitted and they are reluctant to do this also...

For a long time now we’ve had the condition stabilised and it literally is once in a blue moon having to seek help elsewhere occurs. We have had test after test and changed medication continuously for almost 10 years now but at the beginning we had help from a specialist who then referred us to a constipation nurse. After having as many tests as humanly possible they came to the conclusion it was just lazy bowel and that there wasn’t much else they could do other than to treat him regularly and stabilise the situation. We then were discharged from the specialists and in turn because of this, lost the contact of the constipation nurse. We were then just under the care of the GP for this who alternates meds until we find one that works.

This I thought was normal... this I thought was the only way forward... as this was what I was told all those years ago.... TURNS OUT that this, was not the only route and he should have been constantly and closely monitored by the constipation nurse, at least, but due to apparently slipping under the radar we not only are lacking a paediatrician but have been dealing with his condition alone for longer than we had help in the first place. The GP’s fault? or the specialists? Or Mine?

Now all I can think of is ‘is it my fault? Should I have pushed harder to get help or should I have flagged up the problems sooner?’... But actually from what I remember I have done this in the past quite a few times and nobody listened. The GP just said there was nothing he could do other than what he was doing already. I even went in to the paediatrician’s office myself and they said he’d been discharged as he was now at school, I thought this was normal why would I question it?! This whole situation has been hell for nearly 10 years, so if there was in fact something that has been there to help him all along I’m going to scream! 

Anyway it got to 27 days of not going to the toilet, YES that it 2 and a 7, 27. After weeks of meds and nothing we realised that maybe the antibiotics had disturbed his bowels routine. I was well aware he hadn’t been and he was struggling and I had given myself a time limit of 3 weeks as last time we were told that wasn’t long enough and this was as long as when I’d let it get to and then I’d go to the hospital. On day 27 after screaming the house down whilst trying to go to the toilet, but not being able too I decided it was time to go through to the clinic as I was scared of a perforated bowel. He was due to go back to school after 2 weeks off so we needed it sorted so he could go back. But after last time I thought ‘how do I go about this?’. I decided that as it was a Sunday the out of hours doctors might be able to refer us over to the clinic quicker as it was based in the hospital... OH HOW WRONG WAS I?!

After waiting ages at the WestCall clinic in the hospital Kyd was called in to a GP. She then proceeded to annoy me immensely by asking stupid questions that would’ve been answered with a quick read of his notes. I didn’t mind at this point until she started questioning what I was telling her like I was lying... ‘Are you sure it has been 27 day?’ no I’m lying because I find it fun to see my son go through an enema... *shakeshead* I understand they need to question me but the way she was talking to me was as if I was a moron. I went on to tell her his complete history and who and what we’d seen in the past, she looked at me again blankly and said that she thought that an enema was too extreme and a different medicine was called for. I told her over and over that this wouldn’t help and that the blockage would get worse and by giving him more meds she was adding to the stomach cramps and pain. She told me she could phone the paediatric system but their doctors would completely agree with her as they ‘don’t administer enemas anymore’.  By this point I was fuming. She said take this prescription and take these meds for 48 hours and then if nothing come back... leaving it until 29 days but with added pain of more meds. I could see I was getting nowhere so I reluctantly took the prescription from her and said ‘will they even have this? As they don’t have his simple laxatives in usually’... ‘it’ll be fine’ she said... I was then told the hospital pharmacy didn’t have them... so what hope was there for anywhere else. Hmmmmppphhh!

So day 28 and the search for the meds was on... after trawling around 5 different pharmacies with a poorly Kyd in his buggy, which was too hard for me to push now he’s so heavy and I’m pregnant... I had been told over and over that it would be 48hrs to get hold of them and that I could ask another pharmacy.... I broke down  in tears out of frustration and pure exhaustion, in the middle of the town centre Boots... embarrassed much?! I was mortified! The pharmacist was amazing! He said he would see what he could do. He managed to get hold of it for that afternoon and he said he would ring me when I could come and get it... He was at that moment in my head on a white Horse wearing shiny armour! He was amazing, I was slightly in love with him. I dried my eyes and made my way home. When I got there I have never felt happier to see my sofa. Kyd went straight over to the chair covered himself over with a blanket and he looked so annoyed that I’d dragged him out. 

After receiving the phone call to say the meds had arrived, I rung around to get someone to pick up his meds for me so not to upset him further and my lovely delightful cousin Red, jumped up out of her lunch date in the pub and went all the way to town to get them... how lovely is she?... THEN as she got there she’s told they aren’t ready... ‘that’s fine’ she said and off she went window shopping. I then got a phone call to tell me that the doctor who had prescribed the meds HADN’T SIGNED IT OFF!... what the f**k?! What sort of doctor doesn’t sign a prescription off??? He had to get hold of her to get her permission to hand them over... OHHHHH but that wasn’t the best part... after a short while I got another phone call... not only had she not signed it but she had prescribed the adult version of the medicine instead of the Paediatric version so he couldn’t give us the meds he’d so kindly argued to get... OMG I was going to scream!!! He now couldn’t get them in until the next afternoon... which was when we were told to go back to the GP to see what the next step was... I was fuming! I had disturbed Red to go get what didn’t even exist and put the pharmacist through so much just to find out the main person, the most qualified person out of the lot of us, had cocked up!

Let’s just say I wanted to strangle someone at that point but I think I’d have been unsuccessful as the tears would have drowned them before I had got to their necks! The exhaustion of the whole thing had killed me off. I couldn’t move, I couldn’t even speak. I was told to keep my stress levels down as this baby was a miracle as it was so not to risk anything... and so far I was stressed, pushing a poorly almost 5st child and buggy around and being told that even the professionals dealing with it all were a complete joke... The poor Pharmacist was so apologetic but it wasn’t his fault he’d gone out of his way to fix her mess! Grrr still makes me angry.

So the next day I picked up the meds at 4.30pm, on day 29, and on my way back I went to the GP’s and insisted I spoke to him. He was very confused. He told me to bring him in the next morning for him to deal with it. 

Day 30!! The GP has spent ages pressing his belly in confusion. He rung up the hospital and spoke to a Paediatrician, he put it on loud speaker so I could answer the questions instead of him repeating himself... they wanted the GP and the nurses there to administer an enema... HE quickly assured them that wesn’t possible and he told him to send us to A&E and we’d be seen by the Paediatric assessment unit there and we’d go from there. RELEIF! Someone was doing something...

A&E, our local hospital has a separate A&E for under 16s. It’s amazing in there no drunks or druggies, just cbeebies and colourful walls. It is also doubled up as the Paediatric Assessment Unit so we were there for them to finally do something. We went in and they gave him a balloon for letting them do his obs and then we were sent through to see the doctor. He was BRILLIANT, he didn’t patronise me, he didn’t make me feel to blame or like I was lying. He simply listened to his history and said well that sounds like a fight let’s get this sorted for you and try and get a future plan set up... FINALLY I’ve found a professional Professional!! Fantastic! He sent him off to have an X-Ray on his belly to see where the blockage was and although we had a wait on our hands the relief of being listened to was over whelming and just like heaven! We went in I hid behind a screen due to bump and then we waited again. He was so brave through this whole thing and considering how much pain he must be in, he’s not whinged once. I’m so proud of him. We were called in by the doctor again who said he’d never seen a bowel so full! I asked to see the x-ray as I was intrigued to know the extent in which he was full... F me... it was shocking! How can anyone let it go on that long... I felt so guilty but I know it was not my fault and that there was nothing I could’ve done differently. The blockage was really clear, a tennis ball sized and shaped ball was blocking the way. The bowel was so distorted from it, it had gone from a thin tube shape to a ball shape... poor mite. 

Next step was seeing the specialist as this needed to be sorted not only now but in the long run. We went up to the clinic that we used to go to originally and we waited... and waited.... and waited... but for some reason, what would normally get on my nerves, made no difference to me at all. I was just so happy to have been listened to and that something was actually being done that I was oblivious to the wait. After a long time we actually got to see the other doctor who was also fascinated by his history. She said she needed to clear the blockage but would have to sedate him to do it and so he’d have to be admitted. Luckily they couldn’t do it until the next day so she said we could go home and come back before 9am. She told us to give him a big dinner,  10ml of his meds before bed and 10ml in the morning but he wasn’t allowed to eat at all after he woke up.... easier said than done.


DAY 31! Today he has been admitted to bed 12 in the children’s ward and although he was in a lot of pain and not happy with being woken up this morning, he is all set for what is going to happen... but then 5 mins after arriving he starts crying and saying he needs the toilet... so I took him and low and behold... BOOM... he literally fills the bowl. I knew the doctors weren’t around so as I’d been told as evidence before I’ve had to take pictures of it to explain the amount I did just that... this might sound bonkers but it works as a way as you just couldn’t explain that lol. Plus it meant Hoff got to see what I was having to deal with lol. So I took a picture and tried to flush... then tried again... and again... the water was just rising. OMG he’s blocked the toilet. What was left after the flushing was the long thick hard lump in which had also blocked him... apt really lol. So I went to find the nurse to explain and she was over the moon. We still needed to see the doctors as there was no way as much there as there was on the x-ray so it was a ‘What happens next?’ situation.

The doctors were great they understood and explained we shouldn’t have been left to get to this point and we must have sunk off the radar of the constipation team. They ummed and ahhh’d about whether to do a full clean out and then went off to get hold of some specialists. We have had a bit of a wait but in the meantime he’s been to the toilet again and this is a great sign, so maybe he doesn’t need an invasive flush out after all. He’s perked up and is singing Foo Fighters at the top of his voice so must be feeling so much better. We then had to wait for a verdict from the specialists and we’d know what we were doing. 


I’ve just had Great news he doesn’t need any invasive treatments and he’s been given special meds that will flush him out just the same a bit like a detox. We will start on a new meds routine and we will be seeing several specialists in the near future to be helped along the way so we never get to this point again!!

We can go home to do the detox flushing so no overnight stay, I am so happy about that, it’s been a long day but at least I’ve caught up slightly on my blog posts that have been put on hold over this madness.

It’s been a hell of a month and I cannot wait to get this sorted and under control for good. He is an amazingly active child and this holds him back so much....

I’ll keep you updated on the detox but I won’t give you all too much information or picture evidence you may want to be spared of this, it’s not nice....