Parents of anxious kids/teens support thread(part three)

[Stilllivinginazoo]

Filling up a second thread,here's a new one to keep that support running!

This thread is a supportive,non judgemental space for those who have anxious children,or care for children with anxiety

You can pop in and just offload,or stick with us and share ideas etc

Caring for an anxious child can feel like it dominates your existence and drains every last drop of energy you have,and the sadness of watching your child's distress can be overwhelming.only those who have lived it truly understand that

We also love to hear successes.it can be hard in real life sharing something you are proud of your child achieving if others do it as standard.we get that and it's good to have somewhere where people are pleased for those little wins

You are no longer alone

Just wondered as POTS can cause tiredness, high resting heart rate/palpitations, low blood on standing, poor temp control and anxiety, and often first becomes apparent in adolescence.

If you do get blood tests done don't be worried if you have to go to hospital for them, not all GPs can take blood from under 16s.

@1skipforward2back I think it's worth asking our GP to take a look at DS. I realise his struggles are most likely related to the depression that he's got- but it seems sensible to ask just in case.

He has most of those symptoms, but they I think maybe they could be explained by other things, and the dizziness isn't too bad. He says he gets it once a day, and it's not really bad, he just usually has to sit back down again.

Oh yes, I agree, the symptoms could be explained by numerous things - physical and psychological. I hope the GP listens to you, if only to put DS' and your minds at rest and raise DS' MH problems with them.

@anneofavonlea, thats great news re ECHP🙂. I have just applied for DD fingers crossed, waiting for her 6 week initial assessment.

DD was meant to have a blood test on Tuesday but couldn't get her out if bed,rebooked tomorrow - fingers crossed, been trying to get her to take vitamin d but shes resistant. She also complains of dizziness but not sure if thats too much laying in bed so its a shock when she stands up!

Private child psychiatrist has just prescribed melatonin alongside existing Sertraline to see if it helps with sleep, fingers crossed, been trying to stick to regular bedtime,wake times during half term, its an uphill struggle.

We finally have first appointment with CAHMS for anxiety on Friday for initial assessment, its been a long wait. Its a telephone appointment so not sure how well it will work.
Ive already filled out countless multi-page forms so not sure how much more I can tell them, Im apprehensive about it, I hope they will offer help, take over medication prescribed privately and also offer therapy. Private child psychiatrist we see mainly works for nhs but does private appointments on Saturday. I realise I will need to stop private route which I am a bit worried about,shes only had 2 private appointments but it's been a god send whilst on wait list for CAHMS.

My DD took melatonin in autumn but only before school days (schools were open so she had to get up early-ish and get to school on time). On the weekends she just slept for as long as she needed/wanted to, usually until noon. Melatonin definitely helped - she turned from a sleep-deprived zombie to a bit more of a human being capable of surviving a school day. A friend told me that if melatonin helped it's a pretty good indicator that she's got ASD (we're waiting for the results) - I've not verified if this is true but maybe there is something in it.

Now that schools are closed there is no commute and so my DD needs to be up by 8:45am. She manages ok without medication. (Right now we're on half-term so not relevant altogether).

@Runnerduck34 - I offer a choice of taking a Vitamin D supplement or eating half a pack of vitamin D enriched mushrooms or going for a walk. Vitamin D supplement wins most of the time.

@secretsofchange- that made me laugh out loud!
Think I will try that myself!

I hope many of you are having a good day.

I called the GP this morning to tell him about DS' physical symptoms. He said he doesn't feel concerned about them but booked him in for routine bloods and a sitting and standing blood pressure test. I'm glad he listened. The temptation to look for a physical cause is huge, I'm trying to resist it and be rational.

Lots of blood tests. My dd had one today. She has 3 so far with low white cell count and neutrophils. The gp wasn't concerned but paediatrician last week was so has booked a full suite. Am sure restricted diet will be the cause. Not sure about the solution.

Anne did DD start antipsychotics? If so, have the low WBC counts been since? Some antipsychotics can cause low counts. As can stress (physical and psychological) on the body. If it is poor nutritional intake supplements, and refeeding if necessary, should stabilise bloods.

Runner I hope DD managed the blood test, and the LA agree to assess - make sure they stick to the deadline.

DS1&3 take Melatonin. It works for DS3 but although it helps DS1 somewhat nights are still horrendous.

Freckles I'm glad the GP listened, it is always easier when they do.

It has been one thing after another today. This morning DS1 had a F2F CAMHS appointment to check how swapping Risperidone to Olanzipine is progressing. Withdrawing from Risperidone appears to have triggered rapid weight loss - 1.7kg in a week. He was underweight and had overnight top up enteral feeds beforehand so can't afford to lose more. We got off to a back start when DS1 was annoyed with me because we couldn't go the way we normally do .

Then we had a virtual allergy and immunology appointment which was interesting trying to coax DS1 in to shot so they could see a rash and how it changed when the skin is stretched. In the end DH had to hold him as he couldn't be reasoned with. To top it off this evening DS1's central line won't flush.

skip what a day you've had.hope you got some rest
Anne(i think,so much chat) congrats on ehcp

sertraline caused DD to feel dizzy going sit to standing

Vit d is non negotiable here.they have bassets pomegranate and raspberry chewies.warnings of pilchards and large volumes of mushrooms with a side of long walks killed any resistance

Lil zoo has been referred for assessment by eating disorders team.long wait list,expect see her in may/june.issued email to g.p for check up.they RANG ME within 15 minutes of call I'd had to arrange it(they normally useless and I was told to ring them in couple days and request it) she had weight,height,b.p and ECG yesterday(all ok,but ECG was bit fast,poss nerves)
Having bloods taken at hospital today as surgery won't do under 16s despite her finding cold gel more painful than needles!

Not best week here.mondays long walk caused D's only shoes disintegrate once dry.i asked his dad pick up wellies at supermarket as he drives.he refused til a day suited him(on holiday from work so available) he said D's won't mind be trapped at home.i ranted I mind,he's stressed and needs be kept busy and walks help.he wouldn't budge,so I ended up ordering a pair wellies.theyre due tom.meanwhile he's been stuck in all week😢I'm not happy.ds is reliving stressful parts of long walk(dad came and decided on short cut which was further in the end and along very busy roads without paths)
Dd2 has worked hard on catch up schoolwork all week.has been binge eating and very irritable with the stress of it,but she's made huge dent in it,potential almost catching up 6weeks a level work by end of the week.reward is extra internet time to watch episodes favourite show after.its still off by 8pm and not restarted til 9am.

Good news the GP and EDT are finally listening to you Zoo. There is a thread in the eating disorders section for parents of teens with EDs. I don't post because DS1&3 are preteens and have EDNOS not AN but I sometimes lurk. Some GPs not taking blood from paeds is to do with training and insurance.

Your new internet rules seem to be working. Well done DD2. Hopefully without having outstanding work hanging over her online lessons will be easier for DD2 to cope with. Sorry DP isn't being helpful.

It was a late night as DS1's line had to be unblocked. Today has been better.

zoo thank you for the bassets tip re vitamin D, DD hates tablets so going to try those with the hope it will be easier to get her to take them.
Fantastic your DD2 has caught up on schoolwork, that should make things easier, shes done really well. Sorry their dad isnt pulling his weight , sounds a nightmare.
I hope lilzoo gets the help she needs from eating disorders team, ime getting a referral is hard but once they are in the system you do get help, although its a long hard road to recovery, good luck, youve so much to cope with try and look after yourself too.
Its good to know Setraline caused dizziness for your DC, I thought it might be just lack of movement of my DDs part!
DD did manage to go or her blood test yesterday:) She also started on melatonin last night, she initially refused to take it despite, wanting it to be prescribed, finally got her to take it at midnight, I think she was worried about missing out on sm with her friends, she spends too much time on her phone, I think rationing it somehow would help but Im a wimp:( anyway she said that it did help her fall asleep last night as she can't remember "trying" to sleep. she has agreed to take it at 11pm tonight so hopefully I can stay awake and see how long it takes her to fall asleep! By Sunday aiming to have her to take it by 10pm as its a school night, she tells me she doesnt need more than 8 hours sleep a night, experience tells me otherwise- anyway see how we go, hope you all have good weekends

Sounds like everyone is having their share of stressful days.

Skip - dd didn't go on the anti psychotics. She is back on sertraline.

Zoo - it is enough of a challenge getting her to eat and take her sertraline and melatonin. Add iron and vit d to that and it gets harder. She won't take capsules as they aren't vegan and she can't swallow some tablets too.

Dd feels like a failure as she hasn't done much this half term and she is getting anxious about going back to school. Slept with me so I am now exhausted

Wishing everyone strength.

Runnerduck - melatonin is best taken about an hour before you want them to sleep.

Anne-DD is vegetarian, older sister vegan and hate taking tablets so after zoos tip I researched vegan gummie vitamins and found some-twice the price of non vegan ones thou-naturally!
Was also advised by doctor to take melantonin an hour before sleep, but me and dd have different ideas of what time she should be falling asleep, it took her 90 minutes after taking it to fall asleep last night and she says she woke up at 5am and fell back to sleep again at 6am,

Runnersleep service said we should start at time D's was going to sleep (2am) and give it at 1,pulling it back 15 minutes a night to desired time.i couldn't follow this as I sleep best 11-1 to I'd be then set myself up for no sleep...
Think D's took vegan ones for a bit,they are pricey.vegan society to chewy blackcurrant at much better price.vant remember what was in them.do check the website!

Bloods went ok,she's fine with needles so I expected no less

Today she refused breakfast,so walked to to shops to chose some things as keeps saying what's to eat then refusing everything I have and eating nothing...
She had hummus with pitta,tomatoes,carrots and cucumber for lunch.a mini tube wine gums mid afternoon,refused eat pasta with D's wanting "cold food"
Had nush d.f cream cheese with more cherry tomatoes and pepper sticks,3slices bread and few blueberries.not as much as id like,but at least there's variety

Zoo glad bloods went OK.

Runner hope DD manages to fall to sleep earlier tonight.

Anne you can get vegan vitD liquid/drops if they would be easier than tablets/gummies. Some are infant doses but you can get higher doses. Or if amenable there's injections - a different form of vitD compared to many oral supplements (ergocalciferol/D2 rather than colecalciferol/D3) so are vegan friendly. Ergocalciferol doesn't show up as well in bloods, you just have to trust they are working.

zoo, I am sorry lil zoo is having issues with food, my eldest DD had anorexia and I can remember spending an hour in asda with her staring at cereals looking at ingredients and calories deciding which one to buy. I tried to be flexible as it was an achievement to get her to eat anything but when she was finally got referral to CAMHS I was told not to negotiate with anorexia at all but make an eating plan and stick to it rigidly no compromise, its really tough and support of ED team was crucial as it reinforced my position, it wasnt just mum banging on as obviously I know nothing! I hope lilzoo gets the help she needs soon.
Thank you for advice re melatonin, I am trying to gradually bring time forward by 30mins every night , Im trying to monitor how quickly she goes to sleep and theres only so long I can stay awake for

Runner that's what we were told too. We use the magic plate. We give them the food, 3 meals/3 snacks, their 'job' is to eat. No negotiating, bargaining, swapping.

Does DD have a Fitbit to help monitor sleep?

Zoo if you haven't already applied for DLA for DD3 you should.

The same goes for others on here who haven't already. Or PIP if 16+.

skip why/how would she qualify?

Although DLA is needs based, not dependent on a diagnosis, being on someone's books or waiting for assessments helps support your claim. DD3 is now waiting for an ASD assessment and is under the EDT.

Meal/snack/drink support/encouragement. You are awake with her at night. I think you've said previously she needs more encouragement than average to shower and get dressed/has sensory sensitivities around clothes. Social communication/interaction support. You walk her to school - is that because of poor road sense, anxiety, will she not go out alone, needing encouragement and reassurance, would DD3 place herself at risk with strangers, can she ask for and follow directions. She wasn't full time at school. I bet you do a lot that you wouldn't need to do for a typical child her age that I haven't listed. Have a look at the Cerebra guide.

I agree with skip. It's about the difference between dd3 needs and a typical child her age. You are probably doing loads without thinking.