Hi All,

It has been just a dreadful awful day. Dylan is not dealing with the Fibromyalgia, he is not coping with the pain on account of his sensory issues. It all started when I tried to see the doctor, Dylan has been collapsing and is screaming, he says his feet feel like hot knives going through them and also in his legs.

Anyway the Doctor cut me off short, told me I needed to listen to him, I was trying to tell him what he was prescribing us was not correct. He was angry with me and then I got upset and just left with prescription in hand. He did not even check Dylan over. I drove 30 minutes to the Chemist (drugstore) with Dylan screaming and in pain only to find out, sure enough it was not correct. I also found out the drugs and program Dylan needs is not available in Australia.

Anyway I went home with the hope that the chemist is going to ring up a private chemist to see what he knows and then will get back to us. What was awful Dylan was weak and was falling down at different times, other times he was walking around but in pain. Also I have asked the doctors for a referral to a neurolgist and they said no. I rang up the City hospital's reummatology dept, and the specialist said it sounded like we needed to see a neurologist.

Anyway the post came and then the report we had asked our occupational therapist to write, came back with a recommendation for him to go to our local school to access socialisation and learning support (these people are not trained in Dylan's difficulties, a person would have to be trained and then they would have less experience than me in dealing with his learning requirements). The report also said that Dylan has had inadequate instruction with his writing problems. When I read it I was so upset...because it sounded like I was incompetent or he had not been instructed properly. Dylan's situation got worse, I took him up to the hospital because he was distressed and collapsing and in intense pain, even the nurses looked upset about it.

We had to wait for the doctor when he came he looked at him with the other nurse, they asked him to stand and he collapsed, I went over to hold him and they said, see that and they told me to come away, they left him on the floor. They said that he could sit up, that he could get up, he crawled over to the bed and climbed up onto the bed, crying in pain. They said he was only doing it for attention from me. The reality was he was weak, and is really not himself, he is normally full of energy running around, on his bike, or jumping on the trampoline etc...

This has happened before with another hospital, Dylan has inconsistencies which is a part of what he has and is frustrating, anyway they thought that he was acting because he was not consistent. They finally believed us when he vomitted all over everywhere and said I feel better I want to go home. That was when he went through 48 hours of colic and there they looked at me and said, there must be a reason why he does not want to be at home. Today it was there must be a psychological reason why he is collapsing and screaming etc...

They told me that we are pshycological unwell and unstable and I just lost it. I told them I am upset because I had previously been on the phone for hours only to find I had not gotten anywhere to access any services for Dylan. The doctor then admitted that he didn't know how to deal with us medically in front of two witnesses and that he said the local medical profession couldn't cope with us which is why we don't get the help we need. I said if you can't cope with us, how do you expect me to cope with this without the medical assistance and help we need. I cried I can not cope with this, its too much and I am just tired of all these programs they give me to do without any help. The help I did receive was "what are you doing about Dylan's socialisation needs", I would then explain about homeschooling and we would talk about nothing else but socialising Dylan. I have felt nothing but intimidation resulting from Home Schooling prejudice. Nor do they understand that the Lord shows me what to do, you see they just see a mother who is not trained in dealing with her child who is not coping with it...What they don't realise them bullying me and pressuring me about Dylan's schooling requirements is upsetting me and they then see me upset.

Anyway the nurse stepped in "well I cant let you out of hospital if you can't cope with looking after your son". She was talking to me, being controlling firm, Dylan looked at her and said "Don't push my mum around". I went home I rang up our Occupational therapist and spoke to her, actually cried on the phone to her. I also said I was upset with the report she wrote about Dylan having inadequate instruction and about the local school recommendation. Where before she had agreed Dylan wouldn't cope in the school environment nor would he learn. She admitted a doctor we had seen rang her up and pressured her and that is why she wrote that. It was the same Doctor that wrote to another Doctor I had an appointment with about my health concerns and he even said to me that Dylan's doctor is concerned that he is homeschooled and not socialised properly.

The Ot apologised, prayed with me and we worked out together that the reason why Dylan is collapsing could be because his system is overloaded from the pain. She also rang up the local doctor and told him we are not psychologically unstable, it is our senses that are causing this and to explain things.

I then went up with renewed strength, (the hospital feels like a sensory mindfield, topped with hostility) and said I'm taking my son home.

They also said we need to bring some of his reports with us next time, so they know what is going on and how best to deal with him.

The Ot found us a new doctor, one that works with some of Dylan's difficulties, and is good with networking. This doctor is on compassionate leave and however is two hours away. We won't see him for weeks. However that does not deal with the immediate problem of Dylan not coping with his pain and us not getting proper medical help in our local area. I really don't want to go anywhere near these people again, however that is difficult because Dylan could have an asthma or anaphylatic, allergic reaction anytime....

I have also tried to access the Local Polictician and to get services for Dylan and he said How do I know you are not just a demanding mother...I feel isolated from human help, not divine...if I did not have Abba, Jesus, Holy Spirit I am sure I would have absolutely gone crazy by now.

The reality is we both feel taumatised by this whole experience. Dylan has no energy left nor has he anymore tears left. Everytime I try to access help for Dylan whether it be medical or educational or even support services, I come out feeling taumatised, feeling like I have been run over by a bus.

I apologise for this being long, however this is huge and I am praying for the Lord to show us through this...that Dylan can make it until he sees this doctor in a couple of weeks and that the fibromyalgia does not get worse. I don't feel confident with taking Dylan to a doctor in this area at all anymore, nor myself because I really don't want to experience this again. This is huge to deal with and the Lord directs me to verses, ideas, songs etc...however I need the Body of Christ to do a bit of brainstorming or really pray to the Lord about this and for the solution to all of this complex problems to be delivered to us immediately. Or just to support me through this nightmare...because it is a nightmare and I thank God, the Lord is with me...

love and blessings in the Lord,

Serenity

I will keep you in my prayers.