To dread the postman arriving?

[RedPatchedAnkle]

I have a thread over on SN chat atm about my DD. She's 2.6 and has a Global Developmental Delay including Physical Delay, Speech Delay, Hip Problems, Squinted eye, Hearing and Chest issues including Asthma - I've posted about her before.

I've always been a pretty laid back person. At school the other girls used to say if "RedPatch is crying then it's got to be serious because she never cries".

But recently I've been finding myself getting anxious every time the post arrives. DD has a lot of appointments every week and I find myself dedicating more and more time to her conditions. I don't mind because she's my DD but I feel so anxious when a letter comes through the door addressed to "Parent/Guardian of Little Patched Ankle" and even sometimes crying putting the dates into the calendar and seeing "appointment for Little Patched at x hospital, at y time and on z date"

I'm already on antidepressants due to the stress of everything with DD. But it's getting too much again. I've considered giving her up, especially when we have 12+ appointments in a month and it feels like I'm paying £500 a month for her to not attend Nursery which is a lot of money. But I wouldn't do that, as I do love her, and her me (she told her keyworker at Nursery "Mumma love-y" (mummy lovely)) and it wouldn't be fair to her and I'd always wonder "what if".

But I dread the postman arriving. I know it's not his fault, he only delivers the letters, but I feel sick at the thought of the post arriving tomorrow - bills and junk mail I can cope with it's the appointments. I feel so worried for her, and her future. It's blood tests for this and urine samples for that, with an x-ray on her hips and chest and an MRI thrown in for good measure. This is surely unsustainable when she's at school?

I don't have health anxiety and manage to make the appointments fun and an adventure for DD - stuff like taking the train there instead of driving as she loves trains. But it shouldn't be like this, should it? I'm scared of the postman which is ridiculous because he's actually a very nice man with 2 grown up children and a dog.

So AIBU to ask how I can get over this anxiety? And how I can stop being scared of the postman?

OP, I'm not suprised you are feeling so very worried and overwhelmed. I think most people would and I know I would.

I think it's worth talking to your GP about it and seeing if they have any suggestions. Do you meet with other parents who have children with similar conditions? Might it help to be able to talk about it with people who understand.

It's adorable that your DD told her key worker at her nursery that you were 'mumma love-y'. What a cutie!

Could you delegate some of the appointments to other family members? Ones where you won’t get results or need to give information. That can help reduce the overwhelmed feeling.

My DM says "Oh she'll be ok" and MIL just says that "Every child develops at their own rate, she'll get there"

Can you be blunt with your DM and MIL and tell them that you understand they are trying to be supportive by saying these things but it's not what you need write now. Be honest with them and tell them what you need. If they care about you they won't mind.

Do you have a general paed? If not ask to get one! Yes it’s another appointment but it’s someone to help draw everything together for you and take some of the load from you - you need a diagnosis too- so push for this

It gets easier, honestly it does, but you are in the thick of it right now and it’s shit and a full time job having to manage it whilst others skip off to the park.

Would also recommend support forums and mumsnet (child health or disabilities section) for support for you - get real life support from your gp too

I know my DM is worried about her in her own way, and just doesn't know what to say or how to help.

MIL just doesn't understand, she's never had serious health concerns herself, neither has FIL or DH or SIL so she just doesn't get it so will repeat that "she'll get there" until she's blue in the face.

Have a general paed but he's only for one hospital, so we'd need another one or two for the other hospitals as our current one can't authorize treatment at the other hospitals and will only speak to the departments at "his" hospital.

I'm between two PCTs, and I've asked for a Paed that can authorise in both but apparently that's not how it works. It's just generally frustrating.

That’s rubbish and not correct - our general paed coordinated care at two hospitals (albeit it’s hard for her she has to ask to stay involved and be copied into letters from hospital two).

Can you consolidate her care to one hospital? We ended up doing that and it was much easier in terms of records and logistics and them talking to each other

Also get one gp that knows your child and make sure they get all the letters too and you only see them with your dd (where possible) - eases the burden of explaining her history and conditions etc and for me often means I can skip an appointment and just ring them when I need something like an extra prescription or help with something specialist

Getting referred to one specialist hospital that does everything (like great Ormandan street or Birmingham or Evelina) def def helps

I might add it takes a lot of pushing and work to consolidate care and get a dedicated gp but is easier long run. We had 7/8? Different specialisms involved and I also felt very overwhelmed and like it was a full time job. Hours on the Phone doing medical admin a day. Doesn’t help that mums are generally treated like shit by the health care system too - you can’t do anything right you are either over anxious or not doing enough.

There must be a diagnosis underlying her various issues - you need to push for them to find this

I'm unimpressed with the Paed anyway, he barely spoke to me when we saw him and he doesn't even look at DD which I would have thought would form the bases of any diagnosis!

Unfortunately I'm too far from a childrens hospital to get everything there.

Hospital one has 3 departments only and is more an outpatients centre now.

Hospital two has loads of departments but not the 3 offered at hospital one as they're in the same PCT albeit miles apart. This is the hospital DD was born in hence why she's seen here mostly (apparently!)

Hospital three is the furthest hospital from us, but is specialist in the department that DD is referred to there so don't want to change. Suppose I could ask if they have the other departments and get it all there.

I don't like feeling out of the loop with DDs medical stuff even if it's a "minor appointment". I feel like I need to know and make decisions based on everything. DH tries to go to as many as he can but his work is in flexible so he can't always come.

We have one GP who I see with DD, she's lovely and has known her since she was 8 weeks old and I see her for my depression as well so she knows the whole situation. Unless it's an urgent same day appointment we book in to see her.

Are there any support groups you could try? My youngest brother is severely disabled and went to a special needs nursery that is attached to the SEN school he now attends. Both the school and the nursery run a support group for parents and I know my mum found it very helpful, especially when the appointments seemed none stop. Is there anywhere near you that does something similar?

Rainbows Can't count the number of times I've been called over anxious!

It’s a real problem imo in the health care in this country - I’m not surprised you have depression - I nearly got there myself after being called over anxious over so many things - there’s a tremendous amount of pressure on a mum, never the mum of a child with health issues (and no it’s not the same for most dads) and then they make you doubt yourself and don’t take you seriously half the time. My oh has never been called anxious even though we could and would present her to the drs with the same thing!!

Rainbows I'll never forget taking DD to the GP with a chest infection - she's prone to these due to Asthma and damaged airways. I knew it was a chest infection, said it was a chest infection and told the GP exactly what antibiotics where needed. Oh no he says without even checking her over "it's just a cold your being over anxious". 24 hours later she was on NICU at Hospital 2 with a severe chest infection and she stayed there for 5 days, had she been given the antibiotics when I'd taken her to the GP she'd have avoided hospital I refuse to see him now even if it's a same day appointment as I don't trust he'll listen to me.

*sorry she was on PICU

Do your picu have a counselling team for you to access? Mine has one patents or patients can have counselling with - even if it’s years after the admission

I’m not surprised you don’t forget that instance! Yes I had a gp nod and tell me my dc was fine and wasn’t I am anxious first time mum, smile, all babies do and then 24 hours later we were on picu with heart failure. For me the treatment of me has almost been as bad as the practical side and impact on my dc. As I say - I can understand why you have depression! I think most people would having gone through what you are saying.

Parents not patents sorry

I'd have to ask about the PICU counselling. She had a lot of awful treatment those 48 hours she was on it, and we did nearly lose her at one point.

Worth asking - they might not have due to funding cut backs. I’ve had emdr and narrative exposure therapy (both trauma therapies) through mine and it was really really helpful. It’s good to get counselling from someone who knows what it’s like as a hospital mum without having to explain as they only see parents of sick or hospitalised children.

But I might add I only felt able to have counselling once my dcs appointments died down

Just a voice of support here, I feel exactly the same when the postie arrives with letters for the parent or guardian of DD3. It's endless. Daily letters. I know it's obviously for benefit but I'm completely over hospitals for ever. Hugs to you op

I'm so sorry op, it's really hard.

I had a very premature baby who's had a range of health issues and it's very draining.
What's helped me is:

• get an understanding GP, change practices or write to the practice manager explaining why you don't think they're taking your opinion/her history into consideration. My GPs have said that I should never hesitate to take my LO in, given his history. I believe any decent GP should take that approach.

• find online support groups (especially if you can't make it to RL meetings) - there are a huge amount of fb groups specific to different health/development issues that you could tap into

• can you find out (HV/community paediatrics) if you can claim DLA for your child? This may allow you to tap into 15 free nursery hours from age 2-3, so there's less financial worries. I'm pretty sure that global developmental delay is a starting point for applying for extra help.

• can you change your paediatrician if you find the current one unhelpful? Or find someone on one of the teams to talk to about it all? I think you'd benefit from talking through all the different issues with someone who has then"big picture", who might be able to give you a forward plan of what they're expecting of your DD as she gets older and what they can put in place.

• do you ever get time away (not including work, to do something (or nothing)) separate from your usual responsibilities? It sounds like you need some time out. Completely understandable, it's very draining.

Hope you're ok

curtains Thank you for your thoughts.

• Have an understanding GP, as I said to Rainbows, we try and book in to see her, but she's popular so it can be a wait. She's very understanding though and often tells me I did the right thing seeing her.

• I'm not part of any support groups but will definitely look into some.

• Definitely think I'll change paed, and try and find one who can work across all departments/hospitals.

• We get lower rate DLA but can't get more. We get the 15 hours anyway as we're on Child Tax Credits, but we missed the deadline to apply for September so they don't kick in until January 8th, so it's my bill from February 3rd onwards that sees the change. It doesn't make much of a difference to the bill once you take into account meals, uniform (which DD loves wearing so I don't begrudge her having) and other stuff like swimming. It only takes the bill down to £350-400 pm which is still a lot of money to spend.

• Never anytime to myself bar work as DHs shifts are variable day-to-day so if I'm not working or at an appointment then I'm at home with DD. When DHs home he's done long hours, often 10-12 hour shifts usually 6 days a week so I feel bad asking him to have DD for an hour as she is hardwork. Nursery have space for her to go an extra day a week but can't really afford it even with the free hours.

I'm also an insomniac, partially because my brain never seems to switch off with thinking of everything. I expect DD to wake up soon anyway (she usually wakes around 1am for a drink and a cuddle then goes back to sleep) and DH never hears her so I'll go to bed once she's woken up and is back asleep.

How about you going out in an evening? Do something like going to the cinema to just distract yourself from everything? I did that for a while. That way your dd will be in bed and hopefully not extra work for your dh.

I struggle to switch off too - things that can help me are writing everything down (kind of downloading my thoughts) to try to clear them and stop them going around and around. I also try to listen to audio books or TED talks to try to distract me enough to go to sleep (or at least I listen to something interesting!).

I do sympathise, it's incredibly hard.

She's not woken up yet! Will give it until 2am then go to bed, would be so nice if she stopped waking in the night.

DH doesn't finish until 10pm some nights, there's no consistency in his shifts, and he often does 50 hours. I know I sound like I'm making excuses, I'm not. It's just circumstances.

I will try and listen to something to help me nod of that's a good idea to try.