ANS Anxiety as a Symptom of EDS - Would Cahms be Better for DD Than a Child Phsyc ???

[RockinHippy]

DD has diagnosed Ehlers Danlos Syndrome, along with the related POTs & Auntonomic Nervous System issues.

She had a CAHMS. Referral at the request of her EDS consultant as she suffers badly with anxiety - BUT it's very often a sort of reverse anxiety where her autonomic nervous system is out of whack & her body physically over reacts to even minor stresses sending her quickly into a crumbling wreck & then her tearful as she feels so stupid for over reacting

After being hospitalised with stomach trouble back in June, initially the hospital weren't great & insisted it was all anxiety induced IBS - turned out to be a blockage & allergic colitis, but some links to anxiety too .- so they set up appointments with a child phycologist to help DD with her anxiety issues

She has seen her a few times now & though they phyc is very nice & I did speak with her at length as regards DD being very mature for her age & that she would get a better response if she spoke to her more as an adult than a DC - she did take this on board, but DD doesn't want to go, still composing she feels patronised & it's a load if rubbish

Got to admit, I'm not really that impressed either, it all seems to be really basic stuff - gets DD to talk about bullying etc, but doesn't get how DD is masking a lot of stuff with small talk - I see the melt downs, the phsyc sees happy bubbly DD who doesn't want to be there - I even had the Phsyc tell me DD wants yo spend more quality time with DH - DH offers plenty - which DD usually turns down

Basically I feel it's not relevant, DD is playing it a bit & masking her real problems with chatter & getting nowhere - though currently she is struggling badly with not having a high school place & her friends now at school, so it could hopefully help there, just to offload really

I have asked the therapist twice about coping techniques with the ANS anxiety - later realised she didn't understand at all - I explained that I also get it, & exactly what it is - but as an adult who hasn't lived my whole life with it, I know when it's my body going into fight or flight mode & have taught myself to tune it down a notch

DD started with this at 5 - she doesn't really have a living memory of what a normal reaction to shock/stress ect is - THIS is where she needs help - her body over reacts to stress & she freaks over the slightest things - yet she's an incredibly stoic, brave kid who copes amazingly well when things really do go wrong

Would CAHMS be a better place for DD to get help with this sort of hypersensitive anxiety response ??

I'm completely ignorant of this stuff - but DDs therapist response to my questioning last session - was "oh learn to ride it out" wasn't really reassuring

TIA

What I'd say is you currently have appointments with a psychologist at CAMHs the process seems to be that you work through the ranks and get passed up when the person below can't meet your needs. So most likely you would see a lot of organ grinders before you got to see the monkey so to speak. That's assuming they don't discharge your dd first.
As you can probably tell I don't rate CAMHs in our area and many in other areas don't either. Our paed referred ds to the pych at the top direct as he knew he wouldn't cope with his many minions. The psych himself was very good the PMHW (primary mental health worker) who was supposed to know about autism was a joke if I'm honest.

Hi
The psych sounds like she hasn't done her homework on pots. I'm not surprised dd feeling anxious when her ans is bouncing around randomly causing havoc. I think It's important To reassure her that she is not overreacting, her body is responding fight, flight, freeze style to what it perceives as a dangerous situation. So In actual fact The brain Is doing What It thinks It needs To to survive. And having a blocked gut should cause anxiety! I would be worried if it didn't!

I am an osteopath and have had 2 patients with pots in my student clinic . Even senior clinic tutors had not heard of it, and you'll find you're the parent expert when talking to many professionals, from teachers to gp to pychs and even some rheumatologists, and you should be respected as such.

The patient I worked with most was a 27 year old woman, and we had great success combining elements of mindfulness, acceptance and commitment therapy and osteopathy to help with her to cope with her chronic pain and similar symptoms as your dd.

A proper understanding of the symptoms and diagnoses is what's needed. It depends on your rheumatologist, and mind therapists you have available via camhs, but they must understand the hypertensive anxiety response has a very real physiological basis, and teach your dd some tools to cope when her system goes into overdrive, and teach her what is happening, why it feels how it does, how long the feelings may last, how she might feel after, to how the brain has developed for survival.
Not sure if that helps at all but hope it does!
All the best

I know this thread is a little old but I am also interested in anyone with similar experiences. My 15 year old son has had problems with chronic pain syndrome and pain amplification since the age of 9. After a year of investigations getting nowhere he was referred to GOSH who diagnosed hypermobility syndrome (seen by most medics as = EDS 3). Although GOSH got him more mobile the pain issues continued and he had frequent crippling episodes of it, missed loads of school and for a while ended up in a wheelchair whenever he left the house. CAMHS didn't want to take the referral in the first place as they said they didn't have the expertise (they didn't tell me that though) and whenever they've seen him say he's unsuitable for CBT and cannot help.

Like Rockin's dd he reacts to any stimulus with an overwhelming reaction. In his case usually back pain and loss of use of his legs. Pain killers don't stop it (apart from opioids which just make him unable to function). He's now at a much more sympathetic school and was doing well but over the last 5 -6 weeks has gone dramatically backwards and cannot get out of bed until at least half way through the day. There is an integrated pain clinic for adults but nothing for children and adolescents (and I have really tried to find something). Currently I am making an official complaint about the lack of service. He's been stuck with this for 6 years. Has anyone else found a way through?

Rocking and Running, Sorry I don't have any great words of wisdom, but wanted to say I think you are both doing all the right things. It's really tough and there isn't any straight forward answer or solution. We have to keep fighting for our children and do the best we can.

My daughter 15 also has EDS and suffers from huge amount of anxiety, (as do I) and we are constantly battling to get her the help she needs, yet no one seems to quite understand the problem.

People with EDS have multiple and complex needs, and is a condition that most people have not heard of, and so don't look at the whole condition. We don't fit into their normal boxes for how to deal with something, so they don't know what to do, or blame us for their inadequate help not working.

My daughter is also going through a series of meltdowns at the moment. It's really tough. I don't know how to truly help her. She too has been seen at GOSH, and although she is stronger it hasn't helped with all her symptoms. She has bouts of crippling stomach problems which gynae say are gastro and gastro say are gynae. Going round in circles. I suspect the are EDS related. Nobody gets the pain and fatigue either. To everyone my dd looks normal.

School are not helpful and keep telling us she needs to be there more. She has mocks starting next week and the pressure from school is being piled on. Her anxiety levels are going up which is making the pain worse, so she's less able to cope. Physically and mentally she's all over the place. Can't seem to get help from anywhere. I'm just reassuring her that I love her and that we can get through each day at a time.