KISS syndrome?

[Cariadsmum]

Hello. My seven month old daughter has just been diagnosed with KISS syndrome as a result of birth trauma. She is seeing a chiropractor and physio therapist and is being referred to the child development team to monitor her progress and rule out any other problems.

She is generally a happy little girl but has not met (or met very late) quite a few developmental milestones. she rolled over for the first time on Sunday and hasn't done so since.

Although my family are very supportive I feel very isolated and like other mums don't understand the challenges we are facing. Has anyone else had experience of this?

Kiss Syndrome - "Kopfgelenk-induzierte Symmetriestörungen". It's German. It means that your head rests not straight and symmetrical on the 'atlas'- atlanto-occipital joint. You treat it with 'Atlas-therapy' ideally, or Osteopathy, go to a chiropractitioner. All of these have to be very experienced as you would be very careful with the atlanto-occipital joint. Careful do not wait too long as it could become Kidd Syndrome.It should be easily treatable if someone knows what they do. I am impressed that you got this diagnosis in the first place as not many people in England seem to know it. Good Luck.

My 5 year old son had a traumatic forceps birth which resulted in a sternomastoid tumor on the left of his neck and physio since he was 4 weeks old. He was discharged from physio and consultant check ups at approx. 18months. His face was asymmetrical but improved over time. He has always been very active and a very early waker (5.30am) most days which people told me would improve once he goes to school etc....it has not. He suffered from reflux when he was a baby and was not a great eater...this has improved. He is permanently tired but instead of quietening down or admitting it he becomes more hyperactive, stressed, angry and frustrated and it is impossible to reason with him or get him to rest. Since starting school he finds it difficult to concentrate and cannot take any pressure (5 year old pressure like sitting to learn sounds at school etc). I have two other sons who are totally different and not like him at all. I have considered options like adhd/autism ....I think more likely adhd, until I came across kiss syndrome. As he grows, he becomes more asymmetrical, his right ear is higher than his left ear, when he is tired his left eye almost appears to become lower, his neck seems to be bent over to the left. He has suffered from glue ear but only in the left ear. He has had regular check ups for this which the experts say it is not too bad but I have not seen any improvement over 18months and he still struggles to hear well, often misunderstanding what you have said or becoming confused. His speech was slightly delayed and you can tell he often lip reads, especially when he was younger. He lacks motivation and tends to run on his toes with his arms slightly 'flapping'. He gives up any task easily becoming angry and frustrated very quickly. He is an extremely demanding child. However, he is very intelligent and quick, constantly asking intelligent questions and very able in many ways. I feel like a neurotic mother but I am sure there is something wrong and I want to help him but don't know how. does anyone have any advice please?

forgot to mention that he suffers from abdominal migrains and sugary foods/drinks affect his behaviour....so these are limited.

I hope that you have now received the support you need. I recently attended a course that included recognising and treating KISS and from your description it certainly sounds like this is the issue. Good luck.

Having just seen my post I have just realised that the "good luck" could be perceived as sarcastic and/or negative - it's not! I merely mean that I wish you well.

Hi

I just wondered how you all got on with kiss syndrome. I think my son has it. He favours one side when on back and another when sitting up. He struggles to put his head straight on. We think it affects his eye sight in certain positions. He doesn’t have Torticollis and the structure of his eyes are fine according to the doctors we have seen. We would be so welcome for any advice.

Thanks :)