A year ago today...............

We heard the words 'Myotonic Dystrophy' for the first time - I cant believe its been a whole year already - we haven't had time to breathe, and I don't think its sunk in properly yet.

On our holiday in Italy last week I started writing a short piece on Dregan, and it turned into an essay. I can't use it on the article I needed it for, but I can post it here....

Grab a brew and a biscuit (or 2).... wait a minute - Ill post it in 3 bitesizes parts.... you can still have a biscuit though ;-p

Dregan: Birth to diagnosis..... (in 3 parts!)

Dregan was born in 1999. Labour started as textbooks tell you it will. Then it all changed. I was in active labour for 36 hours, and eventually wheeled down for an emergency C-Section under general anaesthetic. Dregan was not moving down as expected, and his heart rate was dropping dangerously low. I never really knew what happened, nobody told me, but I do remember it was longer than expected for them to bring me round. I recently found out, some 15 years later, that Dregan was Bradychardic and had some difficulties breathing.

He was taken to Special Care as he was ‘grunting’ and needed help breathing. I was very poorly so it is all a bit of a blur, but I remember I was not able to feed him. He was in Special Care for 9 days. Nobody really explained what was happening, and after we were sent home there were no follow ups. ‘Just one of those things’.

Dregan could not breastfeed, he didn’t have the sucking ability, and we used bottles with bigger holes. His development was delayed, he sat up, crawled and walked later than expected. And his speech was severely delayed. He struggled to eat, and could not chew. He was on baby food jars until he was 2 years, and then he would only eat certain foods. He did not eat anything messy – he was quite picky! At his 18month check-up I expressed concern, to be told that it would come on by his 24month check. I pointed out that he was actually 23months and they were late with the check. The health visitor showed some concern, but didn’t really give any advice.

At 3 years old, it was more apparent that Dregan was having difficulties with his speech and development. He was sent for a brain MRI, but nothing obvious showed up, and we were told, again, ‘we don’t know’. He was diagnosed with Speech and Language difficulties, and some developmental delay.

Dregan is the eldest in his school year, so he was almost 5 when he started full time school. He was obviously not on par with his peers, but ‘he will catch up’. He was put into a specialist school class called a SERF unit (for speech and language disorders) and they said children usually spent 18months maximum in there, and then moved on into the mainstream classes. Dregan was there the full 3 years, and then he was diagnosed with ‘Verbal and Motor Dyspraxia’, ‘Semantic, Pragmatic disorder’, ‘Sensory Perception Disorder’. We were told if he had these diagnosis before he started the SERF unit he would not have been allowed to go there.

He moved into mainstream school, because he had outgrown his stay at the SERF, and there were no other options. We were by this time seeing many specialists, Paediatricians, Physical Therapists, Occupational Therapists, Speech Therapists, and Educational Psychologists. They all did their individual assessments, and gave him a few more labels. I applied for a statement of Special Educational Needs, and tried to get them all to talk to eachother. By this time it was clear Dregan was Autistic, and he still had severe speech issues. He was 8 when he received his Autism diagnosis, and his statement. I have to say, the only reason the Statement was granted was because we mentioned we were moving out of the area, and we were actually told they would grant it because we would be another Authorities financial responsibility!

When Dregan was in year 4, we moved over to North Lincolnshire with my new husband, and he attended a small village mainstream school. By this time his Autism and Learning difficulties were more pronounced, he was not reading and writing, and he was not an active part of the educational class. We had to start again with the specialists. We met some wonderful supportive people, who we still feel close to now, he had a lovely time at the school. But it was not an educational experience for him. And we still didn’t have any answers, just more questions as time went on.

Dregan now had a long list of diagnosed conditions, and we were even more convinced there was something else causing it all. We were regularly told it was unfortunate that he had so many separate issues, and its almost like they all interact with eachother. We simply could not get departments to talk to eachother. We had people not believe us when we told him he got hiccups every day, multiple times a day, and that he seemed to struggle to swallow. We had people think we were making it up that his hands were ‘freezing up’ and that his fingers would go extremely stiff for a minute, for no apparent reason. I was saying at every appointment that I felt he didn’t have much strength in his jaw and hands/arms.

We are fighters, and we didn’t take no for an answer. We just knew there was something other than ’Autism’ causing his difficulties. By the time Dregan went to high school (a specialist school), he still could not read or write, he was going backwards in some respects. He struggled to know when he needed the toilet. He could not express himself, and it was becoming more apparent that he didn’t always understand what we were saying. His cognitive difficulties were more pronounced as he developed in other areas. But, he had a diagnosis of Autism, and everyone kept saying ‘oh, he’s Autistic’ – other children with Autism could read and write, and walk without banging into things or falling. This wasn’t an acceptable response to us.

This went on for so many years. In between all this we were struggling with Dregans younger brother, who was subsequently diagnosed with ADHD, Aspergers and Hypermobility. He was the other end of the scale to Dregan though. (Xander has since received a negative test for DM)

At the end of 2013 we were at another Paediatric assessment, and the Doctor said he had ‘run out of ideas’. He agreed to send us for another MRI, upon our firm request, because there must be a reason his hands were seizing up so regularly. Multiple times a day, sometimes just when he moved his fingers. Also, he had gone further backwards in his education and the school test results were showing this. So, January 2014 he was sent for an MRI under general Anaesthetic......

 

Part 2 to follow......

Time flies, when you're having a baby......!

Wow! I have just realised how long its been since my last post! SO MUCH has happened - too much to go into detail in one post, so I will give a basic update....

It was the beginning of December when I last wrote - since then:

* Dregan was in hospitral AGAIN for another 3 days, just a week before Xmas. It took him a while to recover - he had antibiotics this second time as his infection markers were way up again. As we know, he is allergic to 'Cillin, 'Cef and Metronidazole - but we found one he could take. He was ill for quite a while this time, it seemed to take it out of him.

* For the rest of December we had a whole bunch of  appointments, for both boys. Including Cardiology for Dregan. 

*January saw LOTS of maternity related appointments, including a weeks stay in hospital for me as I went into early labour (34 weeks). Steroid injections for the baby's lungs, and the start of contractions every 4 minutes.....

* Dregan had an appointment in Sheffield where it was decided he needed an overnight sleep study, as well as a Physio consult. It was found that the muscles on the bottom half of his legs are deteriorating, and advised he should walk with a stick to help support him and avoid injurys. We were told he would probably need a wheelchair in the future. He was seen by the 'foot doctor' who fitted him with insoles in his shoes. Multiple meetings at school. 

* We got the report from the social services meetings we'd been having - you'll remember those - the meetings to get some support for Dregan. The ones we didn't want to have but were assured he would get some support? Well, he didn't! After SO MUCH stress, meetings while I had a broken rib, while I was in early labour, over a period of moths, where we were trying to explaint he condition and they didn't really listen or take it in - while Dregan was in hospital and even at home when he was poorly.... apparently there are no safeguarding issues so Dregan doesn't need any help. They actually said, we wern't abusing him, so they don't need to keep an eye on us!!! The fact he needs support to become independent has totally been overlooked. We are fuming - thats a rant for another day......

* February - Dregan had an appointment with Neurologist, ALT at school (to find some communication aids for him), bloods in Sheffield for the Immunology appt we had been waiting for. Also, the dietician and the speech therapist at school....

*All interupted on Valentines day when baby River decided to be born 4 weeks early!!!! I was quite relieved, my contractions hadn't abated, and I had had very little rest since being hospitalised. Every 4 mins for 2 weeks is exhausting!!! 

* Things get a bit more hectic now - River is poorly, and we still have multiple meeting for Dregan and Xander - now is the time the help we were promised from Social Services was greatly needed!! Dregan had Orthotics (for his insoles) and OT appointments, and Xander has his medical appts too.....

* Im in hospital with River still on my birthday (20th Feb), quite a sad day for me, as I wanted to be with the family. But River was still hooked up to machines and under the blue lights. Pete brought the boys over the day after, and we had pizza and played cards. I was utterly exhausted though....

* We were able to bring River home, but he was sent back urgently straight away, as he got more poorly with his Jaundice. So scary - he was let out again on Pete's birthday (6th March), only to be re-admitted 2 more times. 

*During all this - Dregan had his overnight sleep study in Sheffield, and had his immunology appointment, also in Sheffield. Except, when Pete got there for Immunology, they had cancelled it and forgot to tell us!! STRESS! 

* An appointment at the Genetiists in Doncaster, where it was discussed that Xander may need to be tested for Myotonic Dystrophy - not a happy thought! I have a whole blog post in my head on this one....

* Meeting at Sleep clinic to discuss results - it was decided that another sleep study is to be done, and also a day study to check for Narcolepsy. I don't think he has Narcolepsy. I think he has excessive daytime sleepyness which is attributed to his CDM, but they want to check!

* River is still having his jaundice checked - they think he has a genetic condition, but thats a long story for another post too. In the meantime, he is regularly having his bilirubin levels checked. In Grimsby - a day long every time....

*April was relatively quiet for Dregan - he had some meetings, but it was mostly River who was in and out of hospital this month.

* May - Cardiology appt for Dregan in Sheffield. His results are not entirely normal, but not at the worrying stage yet. It is thought he may need a pacemaker in the future, but at the moment we just need to keep an eye on him. His blood pressure is very low!!!

 School statement review (3 HOURS!!!!) - multiple appts with River!

* We took Xander to the Neurologist who believes there is a strong chance he has inherited Myotonic Dystrophty - he was tested. Now we are waiting the results. Ive struggled a bit this month :-(

* Multiple appointments cancelled on us - SO FRUSTRATING! Including occupational Therapy, and Transition meetings! 

*June - so far this month we have had the transition appointment (utter waste of time - but I haven't got the energy to go into detail just now) and Occupational therapy home visit (possibly helpful!). 

It has been Xanders birthday this weekend, so we have had some nice family time.

And now we're up to date......

So much good stuff has happened too, I have met (online) a WONDERFUL group of people who have children with congenital myotonic dystrophy, and feel like the support is there from others who understand. We have a beautiful baby who has brough sunshine and rainbvows into the family. We have booked a family holiday for the Summer.

So, thats a quick basic update - I haven't gone into detail, as you can see, it would fill a book, and there is lots I have missed. I am sure I will get more detail in as I update (hopefully more regularly) as there is still so much going on.

Im going to leave it there for now....night night!

River Mika Edwin Ashley

14.02.2015

11 days which feels like a lifetime......

I can't believe its only been 11 days since my last update. Not because it has flown by, but because SO MUCH has happened. It feels like we've had months full of updates! I imagine its going to be like this for the rest of the year - hopefully with less illnesses though...

On Tuesday Dregan was taken to hospital in an ambulance at 9.15pm. It came on so suddenly, he had been fine at school, (they were so shocked when we called wednesday morning because had had a great day!) Tuesday morning he was excellent. 

It was a teacher training day on Monday, and he had spent a lot of the day in my new shop with me, and had been really good. We had had a meeting at school with the Neuromuscular Care advisor, school nurse and the deputy head mistress (who is co-ordinating his updated needs since diagnosis, and I have to say, has been GREAT) He seemed himself, no sign of illness.

So, when we got home at 5pm on Tuesday and he was curled up saying he was cold - we were a bit concerned! I had a meeting at 5.30 with Social Services again - well, actually Dregan did. The Social worker was coming round to meet and get to know the boys, and Dregan was curled up in a ball, not interacting at all. So, that didn't go as planned. I took his temp, and it was 38.4, and his heart rate was 133!!! He hadn't moved off the sofa, he was shaking, he obviously had a fever coming on. So, Calpol it was...and wait..... 1 hour later, his temp was 39.1, and we called 111. They didn't understand what we were telling them, and had no idea what Myotonic Dystrophy was, but given his Cavernous Sinus Thrombosis earlier in the year, and his allergy to antibiotics, they sent an ambulance out.

He was in hospital for 2 nights, and his temp/HR/Blood pressure was all over the place. We were in the same room he was in last time, and I felt like I had been transported back in time 6 months. I probably got about 4 hours sleep the whole time we were there. His eye was droopy when he could open it, and swollen when he couldn't and he had a bad headache. His infection markers were 60, which is cause for concern, but becaus he can't take all the normal antibiotics, it was decided to let him try and fight it off. His chest sounded clear, otherwise they would have sent him back to Sheffield to the 'specialists' and to re-scan/X-Ray. 

Obviously Pneumonia is one of the biggest worries for people with DM, and causes approx 54% of deaths. They were very worried.

LUCKILY, he fought it off - 2 days of sleeping non stop, and we came home. He now has an 'open door' to the childrens ward, because they can't risk him not being seen, and it being more serious. It came on so quickly, and in April it was exactly the same. In that case, if we had left it even 24 more hours he would not be with us now (terrifying thought!). So, no risks, take him straight in!!

Since then, we have opened our new shop! And held the raffle we have been running to raise money for 'Treetops House'

We had to cancel an appointment with the Physiotherapist on Wed (which we have been waiting years for) as Dre was in hospital, so that needs to be re-scheduled! Unfortunately that means there was no report for his statement review!

Pete met with the Speech Therapist on Thurs while we were admitted, and had a good meeting, luckily Dregan did not need to be there for the initial meeting so Pete could do that without me. My brain has not been working so good anyway, so its probably best I wasn't there!

I had my midwife appointment on Friday - that was nice. :-) All is going well with this pregnancy - No sleep and being the size of a hippo is starting to affect me, but thats manageable!!!

Dre was back at school Monday, and we had another meeting with Social services during the day - they have been helpful so far, so fingers crossed once the inital meetings are over, dregan can get some support from them!!

Statement review at School on Tuesday - that was a looong meeting with LOTS of people present - a  blog for another day! Positive meeting though - so fingers crossed everything is implemented as its supposed to be (we do have 12 years of history of that not being the case though, lets see if 'medical' diagnosis changes that!!)

And its wednesday today - I'm exhausted, and going for a bath. Dregan is at Youth Club - so he'll be having a great time now!!!

Believe it or not, thats the SHORT version - there is SO MUCH I could have said, but I'm sure I will get round to it at some point!!

**feeling spun out**

Dregan pulling out the winning number for the raffle! 

"Ooooooh!!!"

Good meeting at school - Ed Psych!

Dregan has complex learning difficulties, and reading is a great difficulty to him. This is a combination of understanding letters and how they go together, understanding words, the MEANING of words, and also - whats the point in reading? We've always felt that if we can get him to a basic level of reading and understanding, he will stand a much better chance as an adult!

He is 15 now, and FINALLY he is showing a keen-ness to read (only a little, but better than nothing)

He is currently at the level of a 5year old, and has not progressed past this level since he was in Year 2 at primary school. 

We have now got a new Educational Psychologist, who has started 'Precision teaching' with Dregan. It has only been going on since November this year, so is early days - but the meeting we had yesterday was very positive, and he is showing some small steps of improvement. I have to say, I don't think he is improving any more than he did with his TA at primary School, but since going backwards at High School, he is maybe up to that level again.

So thats GREAT news - all we need now is to make sure they don't say ' yep, thats working, pass it on to someone else to do'. He needs the consistency with the same person, as that is always the downfall **fingers crossed**

After this meeting we had an Open Evening for 'Post 16 Provision' - it was a talk by 4 or 5 Education providers in our area, to give us an idea on where he may go at the end of year 11. That, luckily, is a decision we don't have to make until next year, I can't face another important choice like that just now, haha!

We have a couple of ideas at least, and thats something to work towards - it will depend how he progresses (and how his health needs progress/deteriorate) over the next 12 months.

All in all, a positive day - even if I did have a black cloud over my head all day!

I won't write over the weekend, its been a busy and difficult week, and we have an even busier one next week. So, for the next few days, while we have no appointments, I want to enjoy the boys!

Have a great weekend!

x

Echocardiogram and 24 hour monitor.

I missed writing the last couple of days, so will try to catch up.

On Tuesday we had an appointment to have an Echocardiogram on Dregans heart. He had one when he was critically ill earlier this year, so knew what to expect. It was slightly different, but he coped amazingly well. He spent the whole time watching the monitor - looking at his heart, and his heartbeat! The gel was cold and the stickers at the top pinched a bit, but he was ok.

I had no idea what I was looking for, so can't comment on it really!

He was great on the journey to Sheffield, but his hands 'froze' up about 5 times. Not even when using them, at one point he simply rested his hand on Pete's chair, and it seized up. Was quite worrying, it was hurting a bit, and his hands were nice and warm for a change!

He went a bit internalised in the waiting room, too many people, he was sitting with his head on my shoulder. He really does change when we're in situations like that!

Next was the fitting of the heart monitor. he had to take his shirt off again, and then the nurse ran out of the room to see another patient (!!) so he got a bit uncomfortable and wanted to get dressed. It was cold, so I covered him up again. When the nurse came back, he was split between talking her head off about rubbish, and withdrawing and hugging into me. But, he took in everything she said, and coped with having the monitor fitted really well!!

In all this time, Pete was trying to park the car! Was a nightmare - he finally found a space and then I called him to say we'd finished!!!

That night was one of the best nights he's had in ages - he had loads of energy, walked the dog with Pete, didn't complain of his legs hurting, and even played some games with us. Managed with the monitor very well, and went to bed no problems.

His eyes went 'a bit fuzzy' in the morning, but other than that (and his hands kept seizing up, was very persistant!!) no problems.

The monitor was a 24 hour monitor, and Pete went to collect it to take it back to the hospital. Apparently Dregan was complaining of his heart hurting at around 1.15ish...BUT the monitor hit 24 hours at 11.30 - I don't know if it will have recorded that incident (I hope it did)!

So, now to wait for the results! We received an appointment with the Consultant Cardiologist at the 'Inherited Cardiac Conditions Service' yesterday, but it clashes with Dregans Interim Statement Review, so am waiting for it to be changed. Should be soon though, they seem to be speeding it all along!

Too many appointments, not enough days!

x

Child Services/Social Services....!!!!

Just the title here fills me with dread!

Pete and I have never invited social services in to our home, we have bristled every time someone has suggested it in fact. After all the experiences we have had with 'professionals', it has been very hard to see how this could be a good thing - despite being asked 'who is your social worker' and every appointment we have for the kids! In all our time around disabled kids, I think I have only met/spoken to 2 parents who said anything good about the service - and this includes schools too!!! Both those parents have children with a proven medical diagnosis - not just 'Autism and associated disorders'. Personal opinion and belief really doesn't come into it when there is a Genetic reason for the disability!

So, when our Neuromuscular advisor suggested we access the service for help, you can probably imagine our reactions! However, she made a good case, and we trust in her, so we decided, being that the situation has changed dramatically, lets give it a go and see what they say!

The VERY NEXT day we had a phonecall arranging a meeting!! That meeting was this morning.

Now, to be blunt, Dregan and his needs have NOT changed - the thing that has changed is that now we have MEDICAL PROOF, people are more inclined to offer support instead of laying blame. We are actually starting to get somewhere, and we believe that because we have specialists out of county involved, our local Authority is stepping up. This is a good thing (if really frustrating and upsetting that we have been fighting for so long for nothing!)

The meeting was this morning. The Social worker attended with a Student on placement, and they were both very nice. From the onset we were honest, and gave our reservations, and from the onset we noticed how differently the meeting was going - again, because it was based on actual proof in their eyes, not just what we believed as parents!

I was SO anxious this morning about it. But, all went quite well, and we shall now see what the next steps are. The meeting was to begin the full assessment of Dregans needs, and where HE can be supported! Also, if Xander can be supported in any way also. What we are hoping for is someone to help Dregan access the outside world, maybe instead of him spending 3 hours a day on the school bus (leaving no time for anything else), someone could collect him and spend that extra hour doing things with him one on one. Be that homework, therapy, swiming, Physio, etc...Also, its putting support in place for when Dregan goes through transition into adult services. (whatever that may be)

So, all in all, I am quietly confident that we may have taken a step in another correct direction. I am still wary, there is still a long way to go, and many more meetings etc (one next week to meet with Dregan) - so I don't expect changes to happen quickly - but if Dregan can get some support outside the family, it could be a great learning and life experience for him...

And, we got told our ideas for support were the type of thing they would definitely be able to work with, and 'you've done a great job so far and seem to be doing everything right' - did you hear that... PRAISE from a social worker (!!! hehe!!!)

So, feeling positive, and now to get on with the rest of the day!

What a way to begin a Monday morning (9am meeting!!)

x

Digestive problems!

Friday 14th November 2014.

Hello! 

A bit of education with how it affects Dregan specifically !!

Myotonic Dystrophy is very well known for affecting the digestive system of its suffers, although it is something that many people do not talk about. According to the specialist who gave the presentation last weekend on this issue, it is one of the most common symptoms - also the most embarrassing! And, also, one that has likely been affecting the person for a long time - so might even seem 'normal' to them!

If you think about muscle wasting, and how it can affect the digestion, it is quite complex!

1. Chewing the food! 

The tongue is a major muscle affected by DM, in fact, it is used as one of the diagnostic tools for the disorder - so if the tongue is unable to do its job properly (rolling the food into a swallow-able ball), even just getting the food into you can be a major problem. Not to mention weakness of the muscles that help you chew and swallow - facial and mouth muscle weakness.

Up until Dregans diagnosis, his issues with eating were put down to 'Dyspraxia' - despite us mentioning at MANY appointments that he can't seem to bite his food. How does Dregan eat? Well, he is quite picky about the foods he eats - he will avoid messy food and gravy/soups/etc. this was always put down to 'Autism' - however, we now know it is because he struggles to actually get the food down his throat! This is a VERY common problem, and it is liquids and drinks which often cause the most issues! He pushes the food into his mouth, and squishes it up. 

2. Swallowing.

THIS is the scary one! The number 1 cause of death for people with DM1 is Pneumonia. Until last weekend, we thought this was because of the immune system not being strong enough. but we were very wrong! This is because of the inability to swallow food and drink. The food actually goes down the windpipe into the lungs, instead of down into the correct tube, causing infection in the lungs. So, keep an eye on it? Surely you will know? WRONG! The majority of people don't even know it has happened! THIS is why it is so dangerous and scary. It causes death in over 50% of suffers, early on in life, and is a major contributor to the reduced life expectancy of people with the disorder. This terrifies me!

For Dregan, this is a problem. He gets hiccups almost every meal, and also, throughout the day. He struggles to chew and swallowing is a big problem. Not only food, but drink and saliva. He cannot swallow tablets, so medication have to be in liquid form, and he struggles with this too! It is quite painful watching him if you ask him to swallow for you :-( 

Also, what is the treatment for Pneumonia - if symptoms even show themselves in time? ANTIBIOTICS! Well, Thanks to Dregans critical illness in April/May this year, he is now VERY allergic to Antibiotics. He cannot take anything from the 'Cillin' or 'Cef' family, or Metrinidozole. So, he would be in trouble if he was to get this illness - terrifying thought, given his difficulties.

We were told that when swallowing becomes a severe problem, a lot of people have a feeding tube placed directly into their stomach. I simply can't imagine that for Dregan!

This issue is a very serious worry for us!

3. Digestion!

Once the food has actually arrived where it is supposed to - the digestion begins. people with DM can often have an inability to DIGEST FAT! Also, digesting certain minerals is a problem, and so the liver is often impaired, insulin resistance, diabetes can all be seen in a number of patients with the disorder. The first thing you may notice, is that you cannot put on weight - or that you put on too much weight, depending where the difficulty lies. Also, you may find you are having a lot of tests on your liver, and the first thing you may know is that your GP is asking 'Are you an Alcoholic!' You need to see a specialist, because this liver damage will not improve without the correct treatment, and you may just be told all your tests are negative 'we don't know' what it it is. In the words of the specialist doing this talk 'Before you know it you're in Liver Failure' - the is REALLY important! And comes down, again, to YOU educating the Health Professionals. Your GP probably doesn't even know what Myotonic Dystrophy is - it is so unknown that if you are aware you have the disorder, it is down to you to make sure you receive the help you NEED. Great for people like Dregan, who don't have the cognitive ability to understand or fight for their help!

So, inability to digest fat! The majority of sufferers will be underweight. Might not seem a problem for a healthy person, but for someone with DM it can cause an onslaught of issues. Your muscles will become even weaker, and you are prone to other illnesses. So take suppliments, surely thats the obvious route? WRONG! Trials and clinical tests have proven that it actually makes NO difference. Trials have been done and shown that, unfortunately, it does not help. So, what do you do? You tell me?

Dregan has always been skinny, when he was ill in hospital he lost a LOT of weight, which he has managed to gain back, Unfortunately we struggle to get him to put more weight on. He gets ill if he eats too much dairy, and is unable to digest milk as it causes sickness and addiction . This is something we have known for a long time, but now we have PROOF! People might start listening to us now! He is awaiting an appointment with specialist dieticians and speech therapists to see if there is anything we can do to help. At the moment, making sure he tries to sit a bit straighter when eating, watching he doesn't choke, and keeping a close eye on anything that may seem to indicate illness...

In the meantime, he is currently in the 0th percentile for children his age and weight. That's not just a bit underweight - that is actually clinical starvation. BUT HE EATS ALL THE TIME!!!! I am keeping a very close eye on him, and basically, we have been advised that 'healthy eating' guides might not be relevant for him just now - just get the fat into him! Dregan is very happy about this ;-p

4. Intestines!

The intestines are long muscles - can you see where this is going? Yep, moving the food from the stomach to the anus can be a struggle. Pain, inability for the food to move, etc... This can cause constipation, bowel obstruction, etc. Many patients are diagnosed with 'irritable bowel syndrome' but it is much more than this, and can have serious consequences if not seen by a specialist.

5. Pooping!

Constipation, Diarrhoea, Pain and discomfort, all part of the problem. The Anal Sphincter can be quite badly affected, meaning that it is hard for a person to stop 'leakages' - this can be embarrassing and is often not spoke about very much.

Dregan has these issues. He was not toilet trained until late in his development, and pooing has always been difficult for him - he simply did not know when he needed to go. It was, again, put down to 'sensory perception disorder. and 'Autism'. Later on in life, it has been put down to 'poor self care' and 'learning difficulties'. Having the diagnosis has not changed the difficulties - BUT, it has changed how WE as CARERS can deal with it. It simply is not his fault - so we have more soiled underwear to deal with sometimes, and he cannot tell when he needs to go to the toilet always - BUT, we now know it isn't him being lazy. We change OUR behaviour, to support him, and learn to read the signs and try and send him to the toilet. I don't think there is much we can do about it really.....

Also, we can see a lot of these difficulties in Dregans brother, Xander. Especially the digestion issues. These have been apparent from him being very little, and are documented on many reports. Without getting him tested, we won;t know, but at the moment, I don't think this is a valid reason to test him. We shall see how Xander progresses.

What made me decide to write about this today? Simple, Dregan just came into my office, and handed me something he found in his room. We had a little discussion, and out he walked. Suddenly he was panicking and saying 'don't come out' - yes, you guessed, he needed the toilet...URGENTLY! He didn't know until it was almost too late. Luckily, on this occasion he made it in time as he was passing the bathroom when the urge hit - but this is a problem that will only increase for him. And he doesn't make it every time! I have no idea what support we can get for this!

So, on that note - time to start thinking about what to eat for tea!!

x