Amanda32

Things are starting to be put in place with what happened to my son with the GP that examined him that morning. She is a lovely Dr and very caring we had over an hr of her time today even though she had surgery to go to, she didn't mind. What she said was that that adesions started off then started another problem then another which shut his bowels down. Basically what she told us was if it was the large bowel you can get signs of problems but has he had problems with the small bowel you wouldn't notice it just look like a stomach bug. The large bowel could give you a matter of hours ans may get surgery in time but the small bowel going is instant so he wouldn't of suffered. If in the past he did end up having surgery (ace procedure) they may have seen it and treated it. Too be honest it wouldn't of lasted long as she said that the more surgery he had the worse things would of got as the bowels sort of stuck together perhaps knotted or twisted and that led to lack of blood supply to the organs. Personally if it was found I would of turned the operation down as to have him having surgery after surgery would of been painful and upsetting and it wouldn't of been fare to him to suffer your just keeping him alive really maybe for another few months, weks then have another op agin and again I couldn't do that. Nobody would of none this was going to happen they only notice when he had a post mortem. All operations comes with a risk and his insides couldn't deal with it anymore. We had a letter yesterday from the genetics people for him to see them about further testing that was done. They rang and I told her, which she was shocked nothing else came up but if we wanted to see all the paperwork on all the tests they did with chromosomes we could. Anyway feeling a little better knowing more about the jargon the docs use and understanding everything etc. Thanks Amandaxxxxx

I just want to say many thanks for the kind words all of you with the support, I know it's hard to lose a family member when they are old but think being so young as shocked everyone. I am currently trying to find out why we wasn't told that this was going to happen but I am not going to blame anyone just answers. I went back to the local school where I help today and they didn' t think I would of been going in. I feel myself getting on with everything so I dont have to think about it and still talk about him but rather be busy to be honest. My husband is not taking it that well cant deal with it so trying to reasure him that it will get easier over time. My daughter is back in school toady rather than yesterday but I think a counsellor needs to se us all soon. The funeral went well lastweek we had a Tardis made, someone else made 2 daleks and a Liverpool cushion from flowers it was lovely. We had DR Who music playing at the end, he would of loved that. The church was full and alot couldn't get into the church with school teachers, head teachers etc and some of my son's friends parents. Sorry if I have been depressing everyone but we have all been there for one another with advice about our children in the past and you are all still supporting each other now even if it's a rant about something. Take care all we are ok here just time that's all we can do. Thanks Amandaxxxxxx <'> <'>

Thanks for all the replies of support, it is getting a little easier sometimes but we have the funeral on monday to get out of the way. I sent David Tennant a letter after with thanks for making him happy the other day. I rang the agents that receive the letters and they will make sure he gets it and will ring me to let me know he received it. I'm going back to the school where I help out as soon as possible and so is my husband getting back to work soon and get on with things. Thanks again all of you and being able to talk about it even if it's on here. Luv Amanda

We had news this morning about what happened and it took alot of weight off our shoulders what he told us. He told us that nobody in this world would of saved him as there was nothing that could of been done. All the operations he had over the years which the bowels was I think the problem got weak. (sorry but in one ear out the other). He said something like as husband took the call he had an heart attack of the bowel and it just all gave up. Basically the way I can explain it is that it was a time bomb ready to go off. He could of died with this when he was little or next year his little body couldn't cope with much more strain. The surgeons had nothing to do with what happened they probably kept him going longer. Anyway we went see a pantamine earlier on Cinderella which was planned months ago. We really enjoyed it and laughed but I know deep down my son would want us to carry on with christmas and he would of loved the pantomine himself. I know he would want us to be happy and not get depressed and that's what we are going to do. Love Amandaxxxxxx

Thanks for all the support it means alot to hear it. I seem to break down when I hea about DR Who as that is what he always went on about but I should be happy he knew we loved him very much. I rang BBC and trying few other things to see if they could do the DR Who in memory of him but the lady said yesterday its all pre recorded and it too late. Never mind I tried, maybe I will send a letter to David Tennant again thanking him for making my son so happy in what he does very soon. <'> <'>

I just like to say to you all that many thanks to you for all the advice in the past about my son, appreciated <'> <'> I wont be on here any longer and just wanted to let you all know My son died 2 days ago not sure what from yet. All he had was a stomach bug and there is alwasy alot of wish or what ifs at the moment. We have been told that its nothing we could of done. We had already taken him to the GP same day and given something to put the salt etc back into his body. He got worse so rang a doctor but they said to take him to the hospital as the GP in the mornigntold us if it got worse to do this. On the way to the hospital which they was expecting us and awful thing happened in out car. Not going to say but it something I cant get out of my head. I thing he died by me with my husband driving and my daughter with us too. We called a ambulance on the side of the road but by the time we got to the hospital there was not hope. If we had called a ambulance for him at home it wouldn't of made any difference. The GP in the morning wouldn't been able to see an underlying problem so not her fault either. Personally it looks like something as burst and fluid as gone through his system and posioned him wont know as theres a postmortem being done. Everything was going really well for him. He was in a unit in secondary school and we were told he was the brightest in the class and he would of gone to a mainstream class soon for english. The consultant we seen recently ruled out the ace procedure as he was doing so well with his bowels. He even had his first pee standing up the other day as he kept saying it wouldn't work. My daughter and husband are not taking it that well think im the stronger one (well think im sometimes). Please everybody if you can watch DR Who on christmas day he was lookign forward to that and say a pray for him he was only 11. I am having DR Who music being played and hopefully get flowers made into a tardis. Im trying to been clam so I can sort all this out as my husband cant talk about it. We have lots of support so we are ok there. My daughter as been sleeping in our bed (shes 14 lol) but she needs us now. Take care all and god bless. Love Amandaxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi everyone, hope your all ok I wanted to know if anyone lives in Liverpool or the Wirral??? I maybe looking for a new school for my son in the next year and want to make sure that the schools are going to be the right one for him. It doesn't have to be a Autistic unit just a school with moderate learning difficulties. He his currently in a unit attached to a secondary school so basically need a school that will give him all the support he's already entitled to. He still has a statement but like anyone else if you move away priority is the children's needs in a school. I have already got all the school councils information for the Wirral/Liverpool. There is one school i have been in contact with (no names given) but the head told me that it's upto the local authority but if i wanted to look around the school she would be happy for me to do so which is very nice of her. Any advice or names of schools that you know of please send a PM. Many thanks Amanda

It's been happy news in our household the last day or two, just wanted to tell everyone...hope you dont mind.... My other half just passed his 360 excavator and will get his licence in a couple of weeks. : He is doing his HGV next week so hope he passes that..fingers crossed. My daughter just passed another grade for her music playing a flute, 2 marks from a Merit..... Just got home and found we had mail from David tennant (Dr Who)... for my son. I showed him that he had signed it to him and got a letter saying thanks for the picture he sent and that he should say thanks to me for going out of my way for him...... He could not stop smiling love him that as made his day.... I hope everyone else has had good news lately, If not here's lots of <'> <'> <'> <'> <'> <'> <'> <'> Take care Amanda

Hi Mel_jayne Not sure what to say to that.....lol My son used to like looking under mine and any other females tops to see what was in there. All I can say is they DO NOT grow out of it like father like son....lol sorry just talking about my other half that is lol but it is embarrassing especially if you are out and they do it to someone you dont know. Hope he does stop doing it.....DONT EVER listen to someone that tells you your a bad mother we all do the best we can, all the odd and silly things comes with the problems our kids have and people out there dont understand our children Take care Amandaxxxx

Evening all. <'> <'> Sorry not been on alot and giving any advice, dont think I would be any good to any of you lately I feel like everything is getting on top of me. As you know we are waiting to see what the consultant says about the manometry test that was done to see where we go from here about the ACE procedure. Well not had any reply about all the chromosome genetics testing done since last year until today...... Thought they had forgotten, to be honest I did anyway as us parents got too much to think about with our kids. They were unable to reach an underlying explanation for my sons problems. However they feel that further genetic testing may be helpful. Its saying its possible to look at the ends of the chromosomes in more detail. He had his done under a microscope and it was normal. Sometimes a small part of the end of the chromosome may be missing, which is not possible to see under a microscope. New techniques can enable them to look for additional chromosome material at the end. If some of the chromosome material from the ends as been gained or lost then it might indicate certain genes are not present in the right amount, this could lead to an explaination for my son's difficulties. This test is done on a blood sample and takes several months. then when I get the results she would see me again to discuss the result and any implications for him and the family. They enclosed a blood request form with it that needs to get signed but there are words on there that I do not understand. Investigation required.........FISH Details of test.......Telomeres Provisional diagnoses.......Subteloneic rearrangovent (wrong spelling it's the hand writing) The appointment I have is just before xmas to have his blood taken ( he will be fine he was very interested in what they were doing last time so no worries there) Can anyone tell me if they ever heard of any of this????? I can ring to find out but be helpful if you guys can as it would be appreciated. It's saying something on the net about Telomeres is shorter life... All these words do my head in wish they left it off there as it's got me worried now. Thanks again Amanda to you all sorry again for not giving any advice recently.

Hi everyone... <'> Took my son to have his manometry test done it was the same nurse that did it 5 years ago. She did the test and said that he should have 50% control to be normal strength and it came out as about 40-45 so maybe better but not full control yet. The test results are being sent to the consultant so shortly we should get to see him to see what he has to say about it. See how it goes but all I was told to help him do is squeezing his bum in everyday and see how that helps but he really finds it difficult to understand what to do. Take care Amanda <'> <'>

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Just an update had a meeting within the school to discuss the inclusion and Im now understanding it a bit better. There was only a couple of us parents that turned up which was very dissapointing..... Basically what the the head teacher told us what he thinks is happening (yes he's in the dark too) split classes into 2 of 8 children with SEN but there will be children left over that cant get into one of the classes which will still need the help. So to be honest even the teachers etc could be out of a job We was given information about another parent who as informed the local AM and if anyone else would like to say something we could as may help. I have emailed this person but somebody in this line of work are always busy so may not get a reply..... The meeting I have tomorrow will be local with members from Education to listen to us all so lets just see if they are trying to change everything. Dont know why they are doing this as the system is working with SNRB my son is doing well and many others to. Anyway thanks for listening and will let you know what the outcome is if anyway would like to know. Thanks Amanda <'>

Morning all... <'> <'> Just want to say I have a meeting at my sons school tomorrow with other parents to discuss what the inclusion is all about. There is another meeting I can attend on saturday with some of the people from the education department to also discuss the inclusion so lets hope we have some answers what their intentions are for our kids future. Take care Amanda <'>

Hi everyone... I see everyone as concerns about their child growing up and all have different views and it's very helpful. The SALT rang yesterday and discharged my son as she said her and the school are happy he has enough support at school and to be honest I agree. The school he is in are great with him and give him the support he needs. Spoke to the SALT about independance with my son and I think im going to try him to help more in the kitchen with supervison, take care of money more and everyday tasks that will be useful for him to get better with his organisational skills. He does forget things alot, perhaps I haven't been working hard enough to help him but will do my best. We had his review this afternoon and im happy about the meeting what was discussed. I do think I hold his hand alot when out because I worry so much with the roads, he's ok one minute then dont look the next. Im so protective of him especially when he runs off but I do know I need to back off now a bit . My sons dream job is to be a character and act with DR Who cast.... perhaps he might work with cartoons on telly who knows his artistic talent will be a bonus. He could sketch out new cartoons and have them on tv you never know, if thats what he's good at and only what he wants to do. I tried emailing John barrowman (Captain Jack) off Torchwood but no luck with my son going to see him. The man I had mail off told me to send a SAE to his agent to get a signed photo off him and my son is happy with just that. Thanks Amanda <'> <'>

Afternoon all Glad to see that this site is doing so well and heres lots of <'> <'> if you should need them. I hope nobody doesn't mind me asking this My son is 10 and still quite immature for his age, what i'd like to know as anyone worried about their childs future with being Autistic what sort of adult they would make???? How do you get by without having to worry if they will get married? have a job? etc. I was told that my son as a reading age of just over 6yrs and have a review of his statement tomorrow to see where we go from here such as secondary school that best fits his needs. I asked him again what he would like to do for his future as before it was be normal now its a character off telly..... hed like to be on telly with DR Who and act with the cast.... hes talking about dying, He saying things like what will happen to his toys etc when he dies but he means when he's old mind you. It is really difficult knowing what to do for the best. He loves to dress up everyday, especially draw hes very good at art. Its all DR Who this and that but im letting him be a child as long as possible. He wants the Cyberman helmet but what do you do when hes out playing and hes the only one dressed up and kids make fun of him, you cant stop him as hes happy doing what he does. Anyone have any advice to offer when your child got to a certain age such as making him more independant and being a man when the time comes. My hubby asked him lastnight when hes older will he still be living with us and he said yes. Sorry to go on but so stressed out when they say sad things. He has a test being done in a weeks time to check the strength of his bowel which I cant wait to see what that's like and I will need an answer by feb if hes to undergo another operation the ACE procedure. Any help will be appreciated. Take care Thanks for being there when your in need of advice. Amanda <'>

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Hi everyone not been on much due to my computer is broke down and in the process of being looked at. I wondered if anyone knew about SNRB being under discussion in my area being closed down. Well it's been in the papers about Extending Inclusion a proposed statement. I have only just heard about it and can have my say like all other parents in my area. What they are proposing is close them all down and put our kids all in mainstream classes with teaching assistants.... The education dept are trying to save money and put money into a school and extend that for children that are very bad and then put the rest of the money all around the schools for teaching assistants. I have stated my views and amongst lots of other parents have done the same and are waiting for a date we all can attend a meeting with education dept to ask them to explain to us what their intentions are in a way we can understand because i cant understand what they have put down on the proposal. They are saying our kids with SEN should get more independance and walk home from school with mainstream kids but my son is not capable of that and anyway we are too far away from the school. What my views are that if they were to put all SEN kids in a mainstream class even with help they will not get all the attention they are entitled to. If your child as not got a statement but in a SNRB they will have difficulties getting one because they are saying its too much money nearly �5000 each child to get one. I could go on and on what they are thinking about doing. At the moment its just primary school SNRB that may close but secondary schools that have units etc is under review..... Anyway sorry to go on I was going to go to the papers but others have already done that all us parents can do is attend the meeting and hope for some honesty of them (I doubt it) To be honest they just want to waste money elsewhere on things that are not necessary. Hope everyone is in good health and not haveing a bad time Take care Lots of love Amanda

Evening everyone hope you are all in good health. <'> Just an update (yet again).....sorry We took our son to see the consultant today and told him and the registra our concerns about my sons bowel problems. I asked if any other children with the same problem eventually got clean roughly but all the registra said was usually a percentage of kids are clean by now and my son may well be one of the ones that might not get full control so no answers there. To be honest doctors etc cant give you answers to things like when am I going to be cured etc?.... The consultant said he can have another manometry done so got to wait for that just to put my mind at rest to see what control he has got. Apparently he soils his pants because over the overflow that leaks out but when he has dirty pants he probably feels embarrassed to tell anyone. The consultant then said our only option was the ACE procedure (Antegrade Continence Enema) which is permanent. I knew about this few years back but not in detail. It replaces the enemas that I do in the back passage. He would have to have a small operation in the right said of his stomach via a catherter tunnel and the large bowel. Done on a daily basis to keep it empty preventing constipation and soiling. Im still reading up on it at present so cant tell you much and probably getting it all wrong. It supposed to be a success in the long term and he will be able to carry on as normal but just have to have washout through this everyday. I have about 6 mths to think about it if things dont get better so im hoping that things are better but doesn't seem that way. Im waiting to hear from a person that may give us some advice about this and the operation he had and what he was born with so im going to get whatever help I can get to make things better for him. See how it goes for now. All the best and lots of <'> <'> <'> Take care Amanda

Thanks alot you have been very helpful I will ring later on and see what they have to say. All our children cant stay seated without having to wander and especially if they cant have book etc that's going to be a nightmare. They do say on the news that you can buy things at the airport but not sure what the list is. Many thanks Amanda <'>

I just sent a email and told them about his toiletting/being autistic(not severe) but they just said the same check in early enough and MAY get a chance. We was told to check in 3 hrs before but we will go 4 hrs so will get a better chance HOPEFULLY and that he doesn't dirty his pants as I will have to just put them by the side of me in a nappy bag which wont be very nice with no bag of his own........

We are the same fly out on our first flight to canada in a few weeks and have been reading the news about hand luggage. I have been looking into what items are allowed etc, no books toys allowed as hand luggage. Im not too worried about the problems that have been going on but its not stopping us from having a holiday. Im more concerned about my 10year old son on the plane for 8 hrs with just movies to watch. Not sure how long this is going on for with having to use plastic bags for hand items..... I have bought travel games and things he can make when we fly which should keep him occupied (so confused). I have mailed the airline about seating arrangements but they said first come first served which is fair. We are going to check in more than likely nearly 4 hrs before rather than later. Can anyone tell me can the airline put my son with another passenger and not a parent because theres no way he will cope without me with him for that length of time and I cant afford to prebook seats. Any tips if this problem as not been resolved to do as may well have to put wet wipes/pants in a see through bag on the plane which my son may get upset knowing everyone will see. Hope everyone elses flights do go to plan and its not too stressful for the families. Take care Amanda <'>

Hi everyone <'> Just an update I have managed to get an appointment in sept for my son to see the consultant that deals with his bowels. We were due to see him in february but he has been busy, they did say first of all to get in touch with the local GP but they dont know or give advice what I need Id rather see the one that did the operations on him to be honest. He has gone backwards like i mentioned before and he goes to playscheme now few times a week. I picked him up today and he was in a right mess all up his back, the play leaders had to tell me. It still worries me though that the other children are noticing so what problems is he going to have in the next year. To be honest im going to ask the consultant if it's possible for my son to have a manometry done again which measures the strength in his back passage, that was done quite a few years ago and wondering if they can just do this again. My husband seems to think that they wont as it costs money but I would like to know if it is psychological or a medical problem. He does say he cant feel it coming out but surely he can feel it on his bum and the smell. He still as fleet enemas daily but with or without is the same to be honest which he's had regular for the last maybe 5 years. Can someone tell me what senna is? Many thanks Amandaxxxx <'>

Evening everyone... <'> I was chatting to my son's friends mother earlier as he wants to play with him over the holidays. She said she had been fighting for help at least 6 yrs to get her son statemented but no luck. He has been in the SNRB for a year she mentioned about dyspraxia. He has problems getting dressed and handwriting/reading etc. Im not sure what else is wrong with him as only spoken twice but I like to help if I can. She has never had help for him such as DLA/Family fund she's not convinced she would get any help at all to be honest. Her son and mine are in the same class and she said she's hoping to sort a statement out in sept if they will do one. Can anyone give me any information so that I can help her if she can claim for him even without a statement. She doesn't see any other doctor's for him now she has done most things out of her own pocket. What can she do or who to see about help with DLA etc?.....My son was automatically statemented when he was 4 and now he's 10 so not sure what it's like when your fighting for support and dont get it. She hasn't a computer so any help will be great. many thanks Amanda <'>

Hi everyone... just seen a bottle off off and wish I hadn't now......... I only do it once in a blue moon. Im hoping for some advice as my friend as just been offered a job in a autistic unit close by and assigned to 1 little boy age9, she was chosen from 30 applicants Im well pleased for her... She needs to know what to expect etc as not yet visited the unit. I told her my son was not severe but this boy is always on the go. I said to her that they may well use visual timetables/social stories and rewards with behaviour. Im not sure what else I could tell her only that I could get some help for her on this site as Ive always had lots of support from you all....Thanks.. My son is ok he's into DrWho now he will watch the same episode over and over again... He takes his sonic screwdriver with him everywhere and points it at the cash machines... and people. He his still having toileting problems relying on me and the teachers to tell him to go. He tells me that the teacher didn't say he needed to go but really trying my best to sort him out as he has got 1 year left before he reaches the secondary school next year. I hope everyone is ok and in good health take care all. Amanda <'>