Child with HEDS

[bex68]

My 13 year old daughter has EDS, very hypermobile, suffers from headaches, aches and pains, partial joint dislocations, food allergies, low blood pressure/dizzy spells (probably undiagnosed POTS). She also has long slender fingers (she is average height and and looks normal) bruises easily, stretchy skin. She has had this all her life, but only recently had I ever heard of EDS and I had to start the diagnosis off myself with the GP - a long story, they think I'm nuts and it has taken a long time to be taken seriously. I had to go to private clinic in the end near Harley Street. Thankfully she is now having genetic tests on the NHS in London as I am worried about blood vessels etc, and the docs now agree with me (she does a lot of contact sports). The main problem at the moment though is panic attacks and anxiety. We have a referral to camhs which is taking months. She is not worried about the EDS at all, but has several adrenaline surges that are panic attacks every day. I know anxiety is common in youngsters now, but is the random adrenaline panic attack an EDS brain thing?

[Jay66]

Hi, and welcome. I am replying as I just recently had my first random anxiety attack (timed very closely with my possibly - last ever period, suggesting a strong hormonal cause too). There is a close association between anxiety and EDS, proven through different scientific studies. It is indeed an EDS brain thing. Although it is always possible to have two unrelated medical conditions of course, and we EDSers do like to have multiple medical conditions! This page explains it a bit: edhs.info/about1-cs05

[bex68 in reply to Jay66]

Thank you, I did think could be a link as it seems to affect the nervous system. Sadly with an asthmatic child that carries an epipen for food allergies, beta blockers are out of the question. So frustrating, I will continue to fight her corner and hope we get help soon.

[Jay66 in reply to bex68]

hEDSers can have a form of asthma which is not the same as ordinary asthma. It has a different cause. I had the hEDS asthma from around age 25 to about 30, when it just went away (although I didn't get diagnosed till I was 47, so it is a case of working backwards and looking at weird symptoms and incorrect diagnoses). I am with Steenygirl1 in that although I have dysautonomia, I don't want a POTS diagnosis due to faff with the DVLA, as my POTS is not the typical one and I don't get dizzy. There are other treatments for anxiety than beta blockers - CBT is the preferred treatment for children. I have two relatives with probably hEDS and anxiety too.

[bex68 in reply to Jay66]

Thank you, yes we've been doing CBT in the meantime, there are books designed to help parents to help children, I'm hoping the school can also help before the CAMHS referral kicks in. My feeling is that she could do with counselling and short term medication, but I'll leave that to the experts.

[DISC]

Haven't heard anything about anxiety but at her she and with what she has to cope with, it's not a surprise for her to be anxious. Hopefully when tests are done and she can find a daily routine and some helpful pain management the anxiety should ease. Good luck.

[Steenygirl1]

Hi bex, anxiety and panic attacks are strongly associated with POTS, as are the headaches and aches and pains. Controlling general pain helps POTS symptoms and dysautonomia, and controlling POTS helps with pain, it's all a vicious circle, so you have to work on both. Increase her salt and water, you can monitor the blood pressure with a machine you can buy in a chemist or online, it doesn't have to be expensive. Give her 2 electrolyte drinks a day, one on waking before getting out of bed and one before bed or more if it is very hot. Personally I don't get one with citric acid in it as I don't tolerate it well. Keep a record of her blood pressure with and without the regime. Test on lying, then sitting, then after standing for 2, 5 and 10mins. You can then show her GP the results and he can make a record of it and refer her to a cardiologist or neurologist specialising in POTS, Potsuk.org has a list of specialists. Personally mine is controlled with the salt water and electrolytes regime but some need more help with meds. Dr Hakim confirmed the dysautonomia and suggested the regime, an endocrinologist wanted to do the fludrocortisone but it seems I don't need it as long as I stick to the regime. I didn't want the pots diagnosis because of all the hassle of car insurance and dvla and I don't get dizzy now.

It's great that you got her diagnosed so young, I was 54! And also had to go private 😏. The diagnosis will help her manage her symptoms, knowledge is power x

[bex68 in reply to Steenygirl1]

Must be POTS, the consultant paedicatrician that saw her in London said that she should drink loads of water and eat more salt - the headaches and dizzy spells have actually improved quite a lot on doing this and might explain why she has always loved and craved salty food.