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What next?

So, your child has just been diagnosed with KS/XXY

First of all, don’t panic. Take a deep breath and remember, he is still the same child that he was before diagnosis but perhaps things are beginning to make sense.

What happens next depends largely on the age of your child and what difficulties – if any – he has.

Many KS/XXY babies have poor muscle tone. This might cause difficulties with feeding.  Nursing staff should help with this. He might be late rolling over, sitting up or walking but physiotherapy and occupational thereapy will be provided if necessary and he will get there in the end!

If either or both testes are undescended, it is likely that a small operation will be needed to bring them down.

Delayed language development  is one of the most common symptoms of KS/XXY in children. Speech therapy will make a big difference. So will talking to him. Using signing in the early stages can be useful while your child's language develops.

Your child is likely to be a visual learner. Using pictures and colours can help reinforce language. Contact with other youngsters will help develop social skills.

Many KS/XXY youngsters need little support at this stage although speech therapy may still be required. Teachers should be made aware that your child is likely to be a visual learner. Noisy environments and 'itchy' clothing can add to distractions.

Moving to secondary school can be a significant change for KS/XXY youngsters. 

They might find it difficult to get themselves organised if their executive function is affected.

Friendships may also be more problematic. It may become more apparent that many youngsters are less mature than their peers.

It is important to ensure the school are aware in advance of any difficulties.

The nearest secondary school isn't always the best choice for KS/XXY youngesters. Some may thrive better in a school with smaller classes or with targeted support.

If you are worried, disuss options with the SENCO.

So far it is likely that little medical intervention will have been required. However, around the age of 9 many endocrinologists like to see KS/XXY youngsters to get them used to attending hospital and allow them to get to know the medical professionals. At this stage little will be done apart from checking height and weight and general well-being.

The age at which KS youngsters start puberty is the same as for other boys ie about 12 years of age when the testicles begin to enlarge. Puberty then progresses normally for the first two years or so. After this the testicles may stop growing or shrink slightly and testosterone levels may not rise rapidly above the age of 14 as would be usual.

About half will not need testosterone treatment until adulthood. However, testosterone treatment may be beneficial to those who are overweight.

Unless puberty has been delayed, it is probably not necessary to do checks until mid-puberty – 14 or 15.