Taking DD (17) to Drs

[gingerhobo48]

Need some advice really.I will go in with her as that is what she wants.As she is getting older the Dr will want to hear more from her (and rightly so). She isn't very good at explaining herself and gets frustrated and then angry.This normally happens afterwards which I get the full extent of, it's verbal not physical. She has a history of anxiety.We were under CAMHS for a year and she was assessed as having severe social anxiety. She has come a long way but still doesn't go out.
She has always been a worrier but just recently her worries about her health have really cranked up a gear. She doesn't sleep well, she hasn't for years.

Her most recent concern, and the reason for us going to the Drs , is chest pains.These come on at night, normally when she is lying down.She says they improve when she changes position so I was thinking muscular perhaps.

Along with these pains she also gets what she calls shooting pains in parts of her body.She is convinced it is neurological that she has MS or something. She mainly gets the pains in her arms and her fingers (she says the creases).They don't last long but its obviously worrying. I was thinking perhaps arthritis as I have it in my knee, but she has no swelling.Yesterday she was complaining of her knees hurting.

I just don't know what to think or what we should ask for. To make matters worse, the only Dr we can get to see (not our main preferred one) is really old and dismissive. I have said to DD that she can't bombard him with too many things, she needs to write down her main concern, give as much detail as possible and go from there.I was thinking she will probably be sent for blood tests in the first instance but I want to make sure we get screened for the right things.
Her general health is good, she has no allergies, asthma, eczema , anything like that. She doesn't get colds or upset stomachs. Her BMI is just within the range but she is very inactive. She is very lethargic and always complains of being tired. She is a very fussy eater so may be deficient.
Does anyone have any experience of any of these symptoms with their children?
Any advice would be gratefully received , thanks.

[corythatwas]

Anxiety can make you very, very tired. When my dd (of a similar age) has an anxiety episode she literally only wants to stay in bed. She can't do it as she holds down a job but that's one of the main effects. It also makes her tense up which brings on joint pains. Bizarrely enough, it also makes her nose run- she has learnt to accept it as just one of those things.

In dd a lot of the joint pains- and probably the anxiety- is associated with hypermobility syndrome, but it always gets bad when she is stressed.

[corythatwas]

Relaxation exercises and CBT has helped dd to deal with the pain; she is also on ADs and has been for several years.

[samandcj]

DD18 has suffered with chest, back and foot pain for 18mths/2 years. She complains of numbness and tingling, tiredness & digestive discomfort, She is hypermobile and also has a double curve scoliosis. We have seen a neurologist, rheumatologist, orthopaedic surgeon & spinal specialist. She has had ultra sound scans & MRI scans of virtually every part of her body.
She still does not have a diagnosis.
What helps? She has stopped eating gluten - this makes her feel "lighter". She sees a physio as often as possible - this frees tight muscles and generally helps movement. She is in on maximum dose paracetamol plus prescribed medication to help her sleep. Heat pads help. We've tried a tens machine.
Not sure where to go next.

[gingerhobo48]

That's interesting to hear thanks. I think she is so stressed with revising for her AS exams (start May) that the stress has no release as she literally will not go out unless it is with me. Even booking an appointment at the hairdressers is a major thing.
She has bad skin and was on Rocutaine but she needed to come off of it as it affected her eyes in a bad way.It was a really scary time for us as we thought she had permanently damaged her retinas. We were under Moorfields for a while and they were just fantastic. She has no lasting damage but we have been to opticians (x2) in recent weeks and her glasses prescription has changed. She was getting a lot of headaches which the consultant at Moorfields and our optician thought may be a typical migraines as they don't follow the normal pattern. This is another thing we need to get checked out.
It is really stressing me out as I worry as well and need to keep it from her. Now the effects of the Rocutaine are coming out of her system her spots are coming back again which is causing her more anxiety and making her want to go out even less.
Because of the anxiety all she did was focus on revising for her GCSE's (no social life, boyfriend etc) She did really well (6 As, 3 As and a B) She is under a lot of pressure (from herself) to maintain these grades but I keep telling her that it's ok. I feel like all interactions I have with her are either health related or revision related. I never did A levels so have no idea of the workload etc but I try to support her as much as I can. I am a primary teacher so luckily I am off at the moment. I am not working full-time as we felt I could better support her , in getting to 6th Form and just generally being here for her more if I did supply and not work every day.

[gingerhobo48]

Can I ask how you got to the diagnosis of hypermobility syndrome? I can look it up but am curious. Did you have an idea before that this is what it could be?

[gingerhobo48]

It's also interesting about the gluten as she eats A LOT of bread!!!!!
She has an awful diet generally.I would say apart from fruit and veg there is only about 10 things she eats.It's very draining, she wants to become a vegetarian but I think she would not survive as she doesn't eat pulses, pasta, rice etc.
Now she is off the Rocutaine we can explore perhaps getting some good supplements into her. Does anyone have any recommendations? She was taking the hair and nail one before. Her nails are quite brittle.

[gingerhobo48]

Sorry, above post was meant to say 6 A*s and 3 A's , not sure what happened there.Don't want it to come across as bragging either, just more information about her personality and how her anxiety affects her.She is doing Biology as well so knows a lot about the immune system etc if that helps at all.

[samandcj]

The neurologist thinks that some of DD's symptoms are migraine related. She is taking pregabalin which has reduced the numbness & tingling.
DD is in her A2 year and is very stressed re university application. Her school has been great; they have contacted her universities & explained her issues.
Ehlers Danloss has been mentioned ? Her symptoms are being treated individually. I am worried about what will happen when she leaves home to study. She has been improving re taking charge of her own health - she is much better at talking to the doctors herself. ...but this has developed slowly ...at first she wanted me to do all the talking for her! Of course when they reach 18 health professionals will no longer just speak to mum!
It is difficult to get the balance between sympathy and encouragement to "get on with it".
We are back at the neurologist next week.
I wish that I had liaised with school earlier in the process. They have been a great help in supporting her....for example they have given her a supportive chair and larger desk, they let her use the lift ....little things that do make a difference.
One more thought ...we found an excellent pilates class that is run by her physio team ...they understand her problems and target the exercise at her.

[SuburbanRhonda]

It will get better. You could be writing about my DD four years ago. She had a period of counselling as well as medication for anxiety and depression, which she is still on. Her skin was very bad at one point but not bad enough for Roaccutane - she just grew out of it but occasionally gets a flare-up if she's stressed.

She is now studying away from home, has a boyfriend and a part-time job and is like a different person. The mental health problems will always be there but she's managing them.

Don't worry that you always seem to be talking about her health or revision. Now is the time to support her to feel safe and loved. I would suggest in the kindest possible way that trying to guess what's wrong with her might not be helping. Leave that to her GP - help her with the symptoms by all means.

[samandcj]

DD's hypermobility was initially spotted by her podiatrist. It was then confirmed by the GP and rheumatologist. In DD's case it has caused her hamstrings to shorten- this obviously affects how she moves and her general posture.

Going gluten free has made a huge difference. She is not coeliac (had the test!)
Giving up bread is the hardest thing - the gluten free versions are not great .....but other than that it has not been too difficult.

re your DD's skin condition I think I read about a link between coeliac and a specific kind of excema - it might be useful to have a look at the coeliac UK web-site

good luck

[BrexitentialCrisis]

My cousin had tingly arms and legs, sporadic pain and chronic anxiety for the best part of ten years- it was awful and it robbed him of that decade. He then changed his diet to become much cleaner and began cycling to work. Honestly, he's a changed person- he thinks in hindsight it was ibs but he is now so much happier and outgoing.

[gingerhobo48]

Samandcj, thank you for all of this it is so helpful.

At the height of her anxiety I could barely get her to school and even then she was often late.It took her a long time to get her makeup and hair right.It wasn't a vanity thing at all and I had to go in and explain to the HOY about her condition.They were not very supportive but at least stopped giving her late detentions . CAMHS were great at giving her coping strategies which involved a lot of visualising and breathing techniques etc.
She was always too young for sleeping meds even a lot of the herbal ones.

I can't even think about her going to Uni, I had to go to the talk at school alone as she couldn't face it (was overwhelmed and exhausted).

I'm just worried about the Drs this afternoon.She is very impatient and dismissive herself even though HE is the Dr but I recognise this as her being afraid.

I was looking into us taking a Yoga class together to help her to relax/meditate but I will consider Pilates now, thank you.

[gingerhobo48]

Thank you, I do think her diet is key here.When she was on the Rocutaine they were doing monthly blood tests to check her liver.Her cholesterol was always at the top of where it healthily should have been. she doesn't eat spreads or yogurt (so no Flora type things) She doesn't eat oats or cereals, she has little fibre in her diet apart from the veg she eats.She does not go to the toilet daily. She does drink water, hardly any milk.

[gingerhobo48]

Hi, Suburbanrhonda, I know you are right.I wouldn't normally do this as I know it can often make you feel worse . It helps DD though as she sees I am taking her seriously .I always say I don't know, try not to worry, it probably isn't your heart etc but obviously I don't know.

[gamerchick]

I think personally I would print out a list of everything the body needs to function healthily, sit her down with it and a list of her diet and compare her body to a car. You have to fuel the body properly or it will fail you type of thing.

It's pretty obvious for the most part of where her health problems are coming from.

[scotsgirl64]

I think her chest pains are stress related
consider a mindfulness course to help her cope with her anxiety /stress levels..a recognised strategy
does she have a hobby....exercise is good for stress too
Maybe defer going to Uni to take pressure off her...does she really want to go?...it doesn't sound like she could cope with it in her current state ...she could look into volunteering

[gingerhobo48]

I don't think she is ready for Uni either and I'm not expecting her to go straight away (if ever) that's ok with us. She doesn't have a hobby, no, would take too much energy, which she doesn't have at the moment and possibly socialising.

[corythatwas]

samandcj, seems as if we are in very similar situation

dd went through a long period of school refusal in secondary school: thankfully they were very supportive (primary school were grim, refused to accept her physical diagnosis)

she is having a gap year as she didn't get into drama school, may end up having another one (auditioning today!), but that has actually worked out for the best, she is a lot more mature and able to cope after having been working for a while

she gets her physical exercise through drama, and funnily enough is pretty physically fearless as long as she is on stage

but CBT has helped

and just growing up

[samandcj]

I have been interested in mindfulness ....whether I can get DD interested in it is another matter!
I understand what you mean about the chest pains being stress related except quite often DD is woken up by the pain (rather than the pain preventing her from sleeping).
I suspect that in her case there are probably links between her scoliosis, hypermobility and gastric issues. The physio is currently working on her neck which seems to be helping her hamstrings.
DD eats well; she has a varied diet including all the necessary food groups. She is limited in exercise because of her foot pain (unable to walk any distance, cannot run). She does yoga, pilates and swims (with an adjusted leg kick). Her physio has recommended walking backwards on the cross trainer (no idea why!)
I can remember the GP telling us (at the start of this process) that sometimes these things happen, then they will just go away and no one knows why. I suppose we are all guilty of expecting the medical profession to just know what is wrong and to put a plan in place to fix it!
I find it difficult because i don't know "how much it hurts". Should we just carry on trying different things? should we be shouting louder for help?

[gingerhobo48]

Before she had the diagnosis for anxiety, I remember an afternoon spent in pediatric A&E, with DD with chest pains, palpitations and shortness of breath.We saw several Drs who all suggested different things, anxiety being one of them and also GERD and possibly Costicarditis (?).

[gingerhobo48]

We are going for a full, fasting blood test to begin with.He couldn't be drawn on what it might be, said her symptoms were "non specific". It's a start, DD was really good, spoke up , was calm. He did say , rather bizarrely" what did Dr Google say?" We didn't know what he meant initially and then he said "everyone comes in here with an opinion, what's yours?"

[Musicaltheatremum]

That's good he asked that. A lot of people have worries. We are trained to explore for ICE. (Ideas, concerns and expectations) she does sound very anxious. My daughter ended up in A&E with chest pains before she was diagnosed with depression. It was awful she was 19 and 400 miles away. She got there and is much better now.

[Waitingforsherlock]

My dd went through years of chest pain, ( bad enough to cry out), reflux, acid indigestion etc. Eventually she had an endoscopy after the initial diagnosis of heartburn and costochondritis. It was found that at a cellular level she had evidence of chronic gastritis. I am absolutely certain that her symptoms were caused by anxiety and stress.

She was very anxious at the time and the tummy problems got worse with stress. She also had very bad flare ups of eczema around her eyes too. It was as if the anxiety had to be released somewhere from within. Interestingly after the endoscopy and subsequent explanation the episodes diminished. Over the counter antacids helped as did Omeprozole during really painful attacks.

She is now 13 and had been dx by CAHMS with Generalized Anxiety Disorder. She too finds going out difficult and cannot go away overnight due to anxiety. In addition to this she has also had a diagnosis of Aspergers which may be partly an explanation for her anxiety.

We tried leaving out different foods, the old culprit orange juice often triggered an attack as did chocolate and bread. Raising the end of the bed can help too. I think a deficiency in B vits can cause the other symptoms you describe.

What sort of food does your dd enjoy/ tolerate? My dd is veggie so I try to make sure she eats extra healthily although it's not very easy.

[gingerhobo48]

Hi, she drinks a lot of O.J and loves bread and chocolate.

We are not getting on too well at the moment and I feel awful about this.I know she can't help being how she is but I am just feeling a bit overwhelmed by it all and really worried and stressed. She is not happy with her new glasses prescription and wants the new glasses we have just ordered, cancelled (after paying for them) I just snapped last night after a hellish, really long day doing supply and said she had 2 parents, speak to dad (which she did) He is now handling the optician side of things.

We have a follow up Drs appointment tomorrow to discuss her blood test results.