Obsessions and surgery

Hun,

Don't ever feel bad about ranting here. This should be a safe haven for anyone with our level of demands, to vent all they like. My sense though is that you (Like many) are being very hard on yourself. You are doing a great job, be kind to yourself. Doing your best is all you can do, non of us are super human.

Their us usually someone here to help or put forward some great ideas.

Re other issues. Try the simplest first. (Make sure of course that you don't have any contraindications with current meds though.

Re evacuation, I'm told that that too can be sensory. Worth observing i think that many conditions overlap and although this image is by no means exhaustive it shows many of the conditions that are co-occuring.

www.facebook.com/.../

Try the powder using positive reinforcement. (This will make it more coMfortable!) and see how you get on. Chances are if he feels dryer it will be more comfortable and reduce his need to clean so often.

Do research sensory issues if you have not already done so.

Good luck

Coogybear

Thank you both so much for your replies :)

I have mentioned to his consultant over the past year his need to feel clean, she has not mentioed worms, but maybe I could ask her on Wednesday, I had considered "piles" as he has Cerebral Palsy so his functions down there can be difficult due to muscle weakness, he also stops himself from going to the toilet properly, maybe because he doesn't like it much.

Believe it or not, Kieran was only diagnosed at age 10, though his school said age 4 he was Autistic.  His Epilepsy became quite bad for a while but since the meds were balanced the Autism seems to be rearing it's head, worse as he gets older, I wonder if this is common, or the Epilepsy was masking it some how.

I am trying to be positive in my abilities.  I'm one of these that can talk well in meetings, then fall apart at home when I try to make things happen. Also, when I get no-where with services I feel I'm not good enough, we give ourselves a battering don't we.

I'm more worried about the hospital situation, just because the only stories you hear hear are negative, I have already tried to put in place a side room, as during other surgeries Kieran has bailed quite badly.  Last time he got a side room, the difference at being able to limit the people visable and to dim the lights was marked, fingers crossed I can sort this out as well. His care co-ordinator was supposed to sort desensitisation out for him, that's when she went quiet.  I too like most of the people at CAMHS, I am forever telling people that I understand they're busy and over stretched, but sometimes I just get tired of seeing certain people getting everything and others nothing, maybe I do need to shout more lol

 About a year ago Kieran started harming himself, he had always lashed out at us, but seeing him do this to himself was terrifying. I begged to be seen...they put us in a drug clinic by mistake, never did get another appointment.  The staff are ever-changing :(

Wow! I am so sorry for all the ranting :/ I do try and stay on top of things, maybe also I ignore things in the hope they will resolve, but lately I just feel I'm sinking a bit.

Thank you so much for all your help and support, you have really done so much for me over night :) xxx

Hello Kieransm mam,

And welcome to the forum. Firstly, let me say I really feel for you. Many here have been through similar experiences and although it's probably not much comfort to you, you are not alone.

CAHM''s at the moment seems to be a breaking point! Personally, I've only ever felt they were good in the diagnosis dept, never much good in the support role. (My son was offered just six weeks support.) In my experience thinks rarely get better to a set time-frame. You have probably seen a number of things in the press recently about the rising level of complaints re CAHM's.

The problem being that when an Adult or child needs support it really needs to be immediate not weeks for an appointment and the the individual is at breaking point. You should lodge a complaint, but don't bog yourself down with it as you energies clearly have to be focused elsewhere.

My solution for my son was to find an independant therapist. Indeed, he saw Autism in my son long before CAMH's. We had to use our sons DLA to fund this, but it proved very worthwhile. He had the support he needed on a regular basis and with a therapist who was their for him and on call if he had a crisis.

Re bum irritation, This is going to sound direct but has he had issues with worms? My son had a constant need to wipe himself when young and made himself very sore, this also caused moisture. His personal hygiene wasn't really great with hand washing and it turned out he had worms. This also made him feel like he was gagging a lot. We used a worm treatment over several consecutive weeks to prevent reinfection and then began to address his soreness with sudocream. Once healed, we applied baby powder after each wash to keep moisture down. This then eased his sensory issues in the area. He still uses powder and baby wipes to this day, to ensure he's thoroughly clean, dry and comfortable. Worth a try if you think it could be an issue.

Re the scratching, I'm not a Dr. but this sounds like a recognized isssue with sensory problems to me. I myself, have the skin scratching issues, one of my sons has oral sensory issues. Often it is not so much that this is OCD based, but that the individual has genuine issues with skin sensitivity. These can manifest as itching or tingling on the skin or can feel as though the skin has tags or irritation. In some journals scratching is described as self-mutilation. Particularly for sensory seekers, however if it's accompanied by discomfort with certain clothing etc it's likely to be more sensory based than self-harming based I believe.

Skin itching can also be affected by diet. Certainly where eczema may be an issue or may flair when certain foods are ingested. My son also has this if he eats too much wheat based products.(He has a limited diet.)

Re the throat. Yorkshirelass has a point, anxiety may well be a factor, however if your son has a tag or tear in the skin on the throat perhaps even by fingernails etc it maybe similar to above with regard to sensory issues.

Has your son been assessed for sensory processing difficulties?

It may be worth a referral from your GP to the ENT dept for an assessment as to what might be causing the problem. If no issues are found and he hasn't been assessed for Sensory processing difficulties then you will need to look at getting a good OT to look at those issues. Treating sensory issues can be just as much about strategies as therapists if sensory processing is an issue.

Re Hospital. Can I say. Take a deep breath. Worrying about things that haven't yet happened is a well worn path I often tread and it can be very tiring. Contact the unit where your son is to be admitted and see if you can talk to a liason at the unit re your sons (And Your) difficulties and anxieties surrounding admisssion. Most units are good at accommodating youngsters with needs.

Hope these suggestions are of some help

Regards

Coogybear

Hi there, thank you so much for your reply

I thought that too about his throat.  I have in the past suffered with panic attacks and anxiety, I know well the feeing of the lump in throat, it's scary for sure.  We're seeing his consultant on Wednesday so I'm going to mention it to her.

 I'm just so frustrated with the services at the moment.  I follow a very polite route with everyone, service wise, but lately I'm getting tired of being so polite.  I feel CAMHS is in a mess, no-one knows who to refer to, then when you do get referrals you have to wait so long for help you have usually figured out a coping strategy, or you're past breaking point. Can you believe his Psychatrist said he was dealing with the ADHD, but would have to refer us on to a behavioural specialist for the obsessions.  I know they specialise, but surely a few tips isn't too much to ask for.

Thanks you again for your reply, I will certaily look into the community help available and read up on the links you mention.  I hope you're all well :D xxx