My son seems to be developing an anxiety problem. Is it related to his EGID?

Hi Kitty, my 2 have EGID and  joint hypermobility syndrome/Ehlers Danlos iii. Hypermobility is common and great for sports. However pain can mean they have the syndrome. There is a researched link to anxiety and intense fears and JHS.There is a chapter in a newly published book Hypermobility,Fibromyalgia and Chronic Pain which is written for fellow medics and available on Amazon but costs £38 If you want to look up the researchers they are mainly by A Bulbena and R Martin-Santos both eminent psychiatrists from Barcelona. My son(15) was very much like yours and still is anxious on school return.It doen't help that new term =flare up.When he was young he felt he was different and just wanted to be the same as others. Going to Cubs and Scouts helped as did Trumpet and drums and now Fencing. His self esteem was raised and it gave him distraction ,achievement and enjoyment. These activities mean he interacts with a lot of different people and while teenage stuff like hanging around and fast food is very difficult he can maintain friendships.

Hi

Thank you so much for your reply. I will search the web about the researchers you mention. Thank you!

I have tried getting him to Beavers but he didn't have enough confidence and refused to go after the first time. He also hates noise and found a room of 20 loud boys too much.

I hadn't thought of trying music lessons or more unusual sports so I will find out what's in my local area. Thank you for the tip!

Sorry to hear your 2 have hypermobility too. My 2 suffered a lot with joint pains but my eldest son is improving lots now. The hydrotherapy is helping my youngest son so I'm hoping that will continue.

Did you have problems getting  your 2 diagnosed with EGID and Ehlers Danlos? Which hospital do your 2 go to?

Thanks again,

Kitty

 

 

Hi,

my 2 are seen at Gosh, Gastro and Rheum Hypermobility clinic where they were both diagnosed. My eldest daughter would never have been refered at 12 but her younger brother had eventually been referred at 7  by the local paed. due to our persistence that vomitting 20 x a week was not normal.He had seen an "expert"  NHS diatician who told us after tests he was definately not allergic to wheat and dairy.She then put him on various exclusion diets including nothing red!

Strangely GOSH found out he was allergic to wheat and dairy.They scoped him and diagnosed Egid. We had been feeding our vegetarian son a diet mainly consisting of wheat and dairy, no wonder he was in a dream state at school he was trying to cope with the pain.

His paed. locally then congratulated me on being a very good mother to persist.He had discharged him about 3x as he looked well and was growing.He also thought about Munchausens by proxy as he sat looking at my "Healthy" children and muttering "but they are happy ".

My daughter was referred to Gosh as my sons Gasto cons. agreed while different to my son she also had symptomseg persistent gut ache,constipation, poor appetite. She was scoped and also found to have Egid.My GP agreed they would never have referred her to Gosh with such symptoms. She had also been seen by local Paeds.

EDS at Gosh was due to my daughters anterior knee pain,diagnosed as chondromalacia and EDS. As my son was there he was later assessed and diagnosed and I was told I had it too and was officially assessed at UCL.

Locally they don't understand any of the disorders that accompany these diagnoses.My daughter was told by another local Paed. that he had seen children far more hypermobile than her and her pain was therefore innappropiate.All their care is at tertiary providers.I feel sad for all those undiagnosed children out there being told their pain is due to stress etc which happened to my daughter. That was enough to make her stress.

Hope this helps 

Julie

 Hi there,

I have a 16 year old son with EGID and hypermobility. I quite understand the problems you raise and have faced the same issues, we have also found music and instrumental lessons a great help. Would be great to hear more from you, it is hard to find help for teenagers with this condition. As well as hypermobility he has some muscles that are very tight e.g neck and ham strings. He suffers frequent back and leg pains and tires easily. He also finds getting off to sleep very difficult. 

Our son is on a lot of medication and I worry about the long term effects, do you have the same worries?Have you been given any advice about what the future holds or whether there is any chance that they will grow out of this condition?

Anonymous

 

 

 

 

Hi,

as they both appear to be genetic conditions we are taking it as we are in for the long haul.We were told years ago that they would probably grow out of it but they obviously have not.

Gaining a greater understanding has helped. I would recommend you contact Bath adolescent pain service (NHS) as my daughter and I did their 3 week residential course and it has been positive.

My daughter is now at Uni and having a good time.She is waiting for her disabled students assessment to be provided which I'm confident will allow her to manage despite being down to about 35% attendance last year at school.My son also enjoyed horse riding and helping out.

I find the lack of knowledge of what symptom belongs to which condition hard but am coming to the conclusion that this is all one condition.There is a growing medical consensus that there are links.

My daughter is effected throughout her body involving the autonomic system eg low blood pressure etc, tinnitus, brain fog , vision &on & on.

This twin diagnosis is being made more often. FABED have teen site as well as a family site.

My hope is that gastro,rheumsand neurology will work together on this as our experience has shown us that knowledge is there but communication isn't.

Hi I agree there seem to be communication problems between departments. It's interesting that EGID doesn't seem to be just a gut condition but affects so many other parts of a childs bodily system. It has emotional effects too. 

There also seems to be lots of misunderstandings. I still struggle to get my GP and other local services to understand what EGID means for my children.  I hope things improve soon as too many children are suffering for too long without a diagnosis, or with a wrong diagnosis.

It's great to hear your children have managed to go on to university and carry on doing the hobbies they enjoy like horseriding.

Sx

Hiya Kitty, hope your well

 

Have you spoken to the school regarding this? have they suggested a playground buddy? a child from his class who is assigned to spend time with him but the *buddy* will be differant every day or every 2 days etc, the *buddy* wont feel it is a chore as at that age it makes them feel *important as such*

We have this system in the twins school with children who have either behavioural difficulties or special needs and it works a treat. It will also help the *buddies* to get to know him and as time goes by they will learn from your son more about EGID so in affect will be able to understand more about it. As time goes by he will feel more secure within the school enviroment and with his peers that he will feel happier and more secure in himself. Also as i said before try Place to be.

 

Much Love Dawn x x x x