Ehlers-Danlos Support UK
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Anxious nana

Hi I'm new here, we are just trying to understand what is happening to our granddaughter, she is 8 years old now and has been told she has hyper mobility.

She has had stomach troubles since she was 3 years old, sudden soiling of pants after fully toilet trained for a year, after lots of hospital visits over the next 2 years she was diagnosed with lactose intolerant and intolerant to other sugars, so lactose free diet has been followed. last year she started with odd things happening.

Waking up during the night sweating and headaches.

Heart racing for no apparent reason and sweating profusely.

High temperatures,sent home from school numerous times.

Swelling and rash on legs that were painful for a couple of days.

Swelling of face.

Passing out due to low blood pressure.

Sudden onset of clicking joints and pain.

Her pallor is often white, you can sometimes see the colour drain from her, but she does not feel faint.

Not sure what to do to help.

5 Replies

God bless


Thank you.


Hello Elth and welcome..It is always so much more of a worry when its anything to do with little ones, so I can understand and sympathize with how you must be feeling. I have two grandchildren.My son has a son age 7 months, and my daughter has a daughter age 18 months.Unfortunately my little grandson is always poorly and I hope it will be something he grows out of.

My young adult son at home with me was very ill with all manor of symptoms for many years and in a wheelchair for two years.He had severe ME.But after missing out on so much due to being so ill, he has in the last two years improved to attend college and do well and it has been so lovely to has been very hard,as I've no doubt it is for your family too, but you will all get through it, and your family will be able to enjoy the good times too.

It has come to light through my own hypermobility diagnosis that due to my sons symptoms and various traits similar to mine, that he too is affected with hypermobility and so we're both seeing a hypermobility specialist soon..I am informed it is crucial to see a specialist in this condition in order to receive the correct treatment and care, as most GP's and general consultants are not familiar with the affects of hypermobility or all the body systems that can be involved,and so they do not know the appropriate treatment/care to give.

There are a list of specialists which you can get from the hypermobility HMSA website or the website, and you can also ask for information and support.

I wish your granddaughter all the very best,and also to you and your family.x


Thank you for this just makes you realise your not alone and others are out there going through similar things. Were going to see a rheumatologist next week fior first time so will wait and see what they have to say . As it's half term will take her swimming to help with muscle tone . Just hope it's not as bad as I'm thinking it's going to be.


Thank you.

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