Tell us about your childs diagnosis

[Hanna]

Hi everyone, my son Harvey is 2 and has Tuberous Sclerosis complex which has caused benigne tumours to grow on his major organs, He has quite a few on his brain which causes him to have severe epilepsy and West Syndrome (infantile spasms), he is being tested to see if the west syndrome has progressed into Lennox-Gastaut Syndrome. He has a heart condition called Wolff-Parkinson-White Syndrome which causes him to have attacks of SVT. He has gastroeasophogal reflux and oesophagitis, visual problems including a right eye convergent squint and vission loss due to Vigabatrin treatment. He also shows signs of autism but as he has a severe global development delay he won't be officialy diagnosed until he is 3. He has sensory issuses including tactile deffensivness with his hands and hypersensitivity in his feet. He makes very little eye contact and has bad mood swings where he hits and bites either me or himself. this is caused by the irregular brainwaves because of the tumours. He has no speech, has just learned to crawl, he cannot walk but he has just started finger feeding himself. He goes to a special needs pre-school and has respite care every wednesday afternoon. He is a lot of hard work but he is so loving and i am amazed at everything he is achieving xx

[leesa24]

Hi i have 3 Children and my middle child is sn, he is 3 years old and called Harvey. He is undiagnosed but multi disability, he has global development delay and hypotonia. He is just learning to walk but has no communication skills, he cant talk or sign. He has severe behavioural problems, he needs one to one and has to be kept entertained constantly or he self harms badly, lots of nipping, biting, hitting and head banging. We recently got a safe space for him which is great as he is totally safe at night, where as before he was in major danger in his room. His skills are around the 6 - 12 month mark. Its not easy and i pretty much dont have a life but i love all my Children to bits and i just want him to have a good life.

[Daniel]

Hello Leesa,
How are you finding the safe spaces are working for you?
They have been discussed several times on the site so would be nice to see how it has worked for you.

[Lucy]

Thanks everyone for sharing all your diagnosis', anyone else feel like sharing theirs??

xx

[rockchick]

Hi im vikky and i have 2 children my daughter lilly who is 3 has 17q21.31 microdeletion syndrome which effects her in many ways mainly severe global developmental delay and severe hypotonia and she is hypermobile, she also has epilepsy and is visually impared, she has heart problems also which are currently being looked into to find the full extent of her problems, she also has a very low immune system and asthma and has communication issues, she is also now showing signs of asd / spd so that is also currently being looked into BUT she is a tough smiley, happy little girl who LOVES music and books xx