General Chat

After six long years our daughter has been told what is wrong with our grandson he has Behcets. I have looked it up on the internet. Does anyone on here have it or a family member have it.We hope to move forward now. We now have another battle he get so ill and tired that Liverpool Children Hospital have said that he can not mange 5 full days at school , but the LEA have send a letter saying this is not good enough and he should be there 5 days a week . We would like them to look after him when he in bed crying in pain and can not go out to play or go to a friends birthday party. Thanks for any help you can give us

I had never heard of it, but having looked it up on Google it sounds very painful, but not life-threatening.

The LEA reaction sounds wrong - there must be other children who can't attend school full-time. Would the Hospital write a letter for you explaining the situation?

Edit: This explains the law - https://www.gov.uk/illness-child-education

No, I am lucky enough not to have a child with a debilitating illness but I do know that the concept of 'education otherwise' was incorporated into the 1944(?) Education Act.

How bloody thoughtless and inconsiderate can an LEA be?

She jut told me that Liverpool hospital have send them letters,reports and emails and the school have not reply to them. His brothers has education needs and his teacher did not know that he was missing from class for 30 mins 2 weeks age. When the school was asked about this the reply was we do have a lot going on in school. About 3weeks age when she when to get her son to take him to the hospital. she had to ring the hospital to ask them to talk to school. The doctor was not pleased with the school but they have not return his phone calls in the last 2 weeks .

Does the phrase 'well up themselves' spring to mind?

I have googled itand this I noticed:
Behçet's disease tends to be more common in the Far East, the Middle East and Mediterranean countries such as Turkey, Iran and Israel.

"It is much rarer in the UK, affecting an estimated 1,000 people in total.

People of Mediterranean, Middle Eastern and Asian origin are thought to be most at risk of developing the condition, although it can affect all ethnic groups.

The symptoms of Behçet's disease can begin at any age, although they usually first appear when a person is between 20 and 30 years of age, and less commonly start after the age of 50."

As it is so rare that is possibly why you are having trouble getting the LEA to recognize it. How old is your grandson? Awful for him, I see that it tends to flare up a bit like rheumatoid arthritis. Have you tried getting a doctors letter to send to them. Maybe, on the days he can't go to school he could have lessons to try to do at home.

Hopefully now they know what it is there is medication that can help him.

So that others reading this can see how bad it is for your grandson I have also copied the following from NHS choices.

"How Behçet's disease is treated

There is no cure for Behçet's disease, but it is often possible to control the symptoms with medicines that reduce the inflammation in the affected parts of the body.

These medications include:

corticosteroids – powerful anti-inflammatory medications
immunosuppressants – medications that reduce the activity of the immune system
biological therapies – medications that target the biological processes involved in the process of inflammation

Your healthcare team will create a specific treatment plan for you depending on your symptoms.

Read more about treating Behçet's disease.
Outlook

Behçet's disease is highly unpredictable. Most people with the condition will experience episodes where their symptoms are severe (flare-ups or relapses), followed by periods where the symptoms disappear (remission).

As yet, no triggers have been identified that cause a flare-up of symptoms.

Over time, some of the symptoms can settle down and become less troublesome, although they may never resolve completely."

It sounds as though the school has a big problem if they don't notice a child is missing. If they are not responding to letters from the hospital it would be pointless getting a doctors letter I suppose. Maybe your daughter needs to take it higher.

They said for a long time he arthritis.I can see how they said that .Have been told someone carry the gens for it.

Have they tested the family for the gene?

He once took him self out of school and was coming home to me. As luck would have it my best friend husband meet him at the school gate and took him back . School did not tell us what he had done my best friends husband did . There was fireworks then with the school

No not all the family yet They have my gene because my sister was born with something wrong with her and my family give our gens and our records for research. His dad will not be tested because he does not care about his children . He has a new family and he does not wont to know his sons. Our other daughter has a 8 month old little girl and she think testing would be good

Well of course it would be, and how stupid of his father as, if he has the gene he could have passed it on to his current children. It all helps research. But I remember the problems there were with his dad so I guess he won't co-operate.

o no he will not help. He took her to court last year and now his girlfriend and him are having a family thats it. He ha said it will not be his gen that did this . He is beyond words.

Contact your county/distrct Educational Welfare Officers department. They're more likely to be staffed over the summer holidays than the school. If your school still has a Board of Governors, you should be able to find contact details for one or more of them.
Even Academy Trusts have a managing body. Details should be on their website.

How about your local councillor, or even your MP?

As a last resort, after the autumn half term, you could always contact the local paper, but do exhaust all other options first.

Well Grandson been on his meds for a few weeks and we had good days and bad days. He not going back to school next week a the local council has send a support work to help with his need and she going to have a meeting with the school to see what can be done to help him at school . If he can not return to school then she is going to help with what is the next step.He also has to go back into hospital for some more tests as they think his stomach lining my be damage. We will just have to wait and see what the results are. He did get to have a birthday party this year which is good .Finger crossed that things get better

I hate to hear of children with severe health problems.

I can't add anything useful to the above suggestions but I wish him and all his family well including the best treatment and schooling possible.

Sue x

can i also just say that he and children like him miss out on things. Last year all the children in his class got invited to a birthday. He was the only child not invited. He never got asked to other children home to play and have tea after school. I was picking him up from school one day and got asked how long he been at that school from a mum.

I must say that another mum when up to my daughter and said she was sorry but she did not know that her son was in that class. The next day she been on FB found my daughter and her and her best friend asked my daughter if her and her 2 boys would like to meet for coffee. Since then these 2 mum have made sure my grandsons and daughter are include in my grandson class get together

If your child or grandchild has a child in there class which is not included please include them