A VERY BIG THANKYOU !!!

Thankyou for all your imput, it means so much to know we have somewhere to go when things are tough. We haven't been posting for a while because life has been busy. Just to update we had our appointment at Great Ormond Street which was the worst experience ever. We arrived at 10.10 am as asked we had 1st test at 2pm. There is nothing for 12 year old kids to do there (really bad) finally saw specialist who was running very late and we had 10 mins with her. She did apologise but went on to say she couldn't give diagnosis there and then which is what would usually have been done. We then had second test and left at 4pm. What a day, from there we had a visit from school welfare looming and so we needed medical evidence to proove absenses were justified. I phoned after 2 weeks only to find out they send off reports to India to be typed (doc uses dictaphone) and then they are sent back. The 1st one was lost and so rather than do a hard copy here they sent it off again. To cut a long story short he was diagnosed with Benigh Paroxysmal childhood of vertigo.

Moving on we had welfare come and yes we were threatened with court(bring it on is what I say). Saturday gone we get the report from community paediatrician who we saw beginning of October. In his report he lists Jacks diagnosis as overgrowth syndrome,( I wonder if everyone with weight gain has a syndrome) developmental co-ordination disorder (Dyspraxia in old money) with educational difficulties. It gets even better, we changed our G.P a few weeks ago and thank heavens we did. The report states tha a telephone converversation with our G.P at the time took place. In the report it states and I quote, Dr******* described Jack as a strange child who has hypotonia and hypermobility with no explained genetic reason. Well!! I was chomping at the bit, they always arrive on a Saturday. How dare he!!! Any suggestions on how to deal with this would be much appreciated. It gets better though at the back of the report it states, at last and I quoteProviding his tests at G.O.S.H are normal(which they were not) I shall not be arranging any further tests however in veiw of Jacks Thyroid function test(TSH level of5.3) being slightly outside the normal range, I will request Dr*** to repeat the test but it is extremely unlikely that only a small rise in TSH level with normal thyroid hormone level would contribute to Jacks symptoms. His test results were TSH 3.3 range 0.4-5 and free T4 13 range 9-19 a week later test repeated an it was TSH 5.3 T4 12. What can I say, he is out of school and we are trying to get school to agree to Statuatory assessment for a small school near us which has a hollistic approach but we are struggling. We have a multi-proffesionals meeting on the 8 November. What a month, i'm exhausted but being angry is keeping us going. I can't imagine what it must be like to have Thyroid problems and fight for yourselves, I am finding it hard but I don't have the problems Jack has. Fair play to you all and just keep going !!!!! X

15 Replies

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  • Hello krankybird

    Keep up the good work. This site may be helpful for you so please check it out, I reiterate, your child does not have to go to school, the heavy handed welfare state need to back down. alternativesineducation.co.uk go to links especially freerange-education.co.uk then resources then examist correspondence courses. Another one is education-otherwise.co.uk. As long as you can prove your child is being educated they will leave you alone. You can also, if it is preferred, combine home education and part time school if the school is in agreement.

    Again I would say contact the Royal London Homeopathic Hospital, Great Ormond Street, ask to be referred to them under the choose and book system. The government has just agreed to keep homeopathy on the NHS. Its worth a try!

    If you come to the end of your tether then I would suggest you have a conversation with David Black from Bower & Bailey Solicitors of Oxford, 01865 311133. He will discuss things with you at no cost!

    I feel for you and your son. Stay strong for he needs you to fight for him.

    Good luck.

    Wellwisher

  • Krankybird, when I hear your story I realise that our systems are too big to pay attention to individual cases. We are more than just numbers. The home education advice sounds good. But I wish people who are obviously intelligent and well meaning would stop recommending homeopathy as a solution to our very real medical issues. Homeopathy does not work so let's stick to proven science please, no matter what the Government says or does. TLC and an expensive water-placebo might lift us psychologically for a while but, I repeat, homeopathy does not work. Keep up the good work Krankybird.

  • From what you write I think that your son probably has a number of problems and I know from experience this can complicate things a lot.Often with thyroid trouble this can effect you in many different ways and sometimes doctors have a job about how to actually tackle the problems.You need someone to look at the whole problem and see a way where you can go forward. I think you are doing the right thing getting him into another school and perhaps being smaller they will be able to have the time to see a better way to help your son. Good luck and hope things start looking up soon.

  • I beg to differ Jack, Homeopathy does work, there are many articles and people that prove it. Many eminent doctors also. Science is based on nature, without nature we would not have science. But like us all you are entitled to your opinion. Also the RLHH does not deal entirely with homeopathy, I have been visiting the RLHH for PROLOTHERAPY. Something that has given me hope in my life, something that science has not.

    I repeat HOMEOPATHY does work.

    Have a lovely day.

    Wellwisher

  • Hi Jugemvicsar, far be it from me to attempt to remove your hope, but as a hypothyroid sufferer I also need hope at times. But I want my hope to be based on reality. If you won't believe me than believe sceptic James Randi who promised a million dollars if just one scientist could prove homeopathy worked; the BBCs Horizon team took up the challenge and failed. Unusual claims require unusually good proof. Homeopathy is an unusual claim. So far there is no proof. Unless you can show me a scientific paper I am unaware of jugemvicsar, can you?

  • I took my son out of school for other reasons and joined education otherwise. There are a lot of children not attending main stream school and you can make friends with other parents. To be honest it takes a lot of stress away as they dont have to follow the national curriculum either. My son now attends college doing a subject he enjoys and wants to make a career out of. I was going hypo myself at the time when I took him out but it was surprising how much other people offered help at the time with books and advice. He also had to go to hospital during those years. Mind you it does depend on your lifestyle. I run two businesses from home so I was at hand most times.

  • Hello Jack

    I need no scientific paper to convince me that Homeopathy works. Just the people I have cared for, and they have been and are many!!

    For all those who need to have the 'paper evidence' there are many sites and books on the subject that provide studies dating back hundreds of years. Although I would say that many of the studies have been biased towards science. Again I say you are entitled to your opinion, let others be their own judge. All options need to be explored when other methods have failed. I too am hypothyroid, undiagnosed for many many years, which has resulted in much research.

    Have a lovely evening

    Wellwisher

  • Hello Farmermechanic

    Congratulations. I am so glad to hear that it has worked for you, and yes I agree it does depend on your lifestyle. If I had my time again my children would not attend school, they also agree with this, they are now 29,27 and 22.

  • Jugemvicsar, perhaps you mean: why let the facts get in the way? The people visiting this site have real problems and, like me, are looking for real solutions, not modern versions of snake-oil. There is enough dissatisfaction with NHS solutions without peddling fake cures. We are bright enough to know the difference now, so your 'hundreds of years' of fakery casts a long shadow in the glare of modern scientific enquiry. Mine is not an opinion - it is a reflection of the the fact that there is not a single shred of evidence to back up homeopathy, and a mountain of evidence against.

  • Hello Jack

    I feel saddened by your comments and your bitterness, I too have real problems (your comment would suggest that I don't) and have been looking for real solutions which are definately not versions of snake-oil. I certainly do not peddle fake cures either, neither does it cast a long shadow, you failed to read the prior comment correctly, where did science start! Nor am I against science, in the modern world of today there is room for both. Perhaps if you spoke with the eminent doctors and researched alternatives it would help to broaden your mind.

    I wish you all the best.

    Wellwisher

  • And I can't imagine how hard it is to fight for your son against the difficulties you have faced.

    I still think thyroid is a critical factor but it is so very difficult knowing how best to approach it in the context of the other issues. But with a rising TSH/lowering fT4 it could be becoming the most important single factor. Make sure that none of the medics is allowed to ignore or dismiss that.

    All the best

    Rod

  • Might be worth having thyroid tests done as early as possible in the day as the TSH would be higher earlier in the morning.(or lower depending on what way you look at it). eg if TSH 3.5 in the afternoon, then possibility it could be 5.0 early morning.

  • I feel so sorry for you and your son ,it is bad enough having thyroid problems when you are a adult ,but having other problems a well is just not fair,but to have vertigo on top of it all ,its the worse thing I have ever had, (even though I feel really ill with my thyroid ),that feeling of not being able to get of the merry go round yuk,I was in bed for 3 weeks once with an attach, being sick just going out to the bathroom, even my doctor used to come every day to see me as she dident know what it was ,I went to Charing Cross hospital who done all the tests and gave me meds that I still take to this day that really have helped.I really hope he gets the right help, and that he will grow out off the vertigo Sending you both lots of hugs Jan xx

    PS ,try Homeopathy as well it cannot hurt, I have even bought some crystals ,i would now try anything lol xx

  • Ouch -what a tough road you are treading -my heart goes out for you. Am so glad that you are finding the strength to fight and I hope you manage to get your message acroos to the authority and medics. And most of all I hope that Jack feels better soon. Hugs

  • Just wondered how Jack is, and how are you ??

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