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Original poster

26 medical appointments in 24 months.

28 replies

AnxietyMumEpi · 23/04/2021 18:06

Do you think that's a lot?

My 24 mo DD has quite the range of health of health problems, I've been sorting out her NHS letters and that's how many she's had. Not including the usual things - vaccinations, health visitor checks, gp appointments for infections. It's things like blood tests, scans, ultrasounds, pediatrics appointments.

I mentioned at the last appointment I was finding it all a bit overwhelming and received a head tilt "Well she's not seriously ill like some children we see, is she?"
Of course I'm very grateful she's not and I understand it's much harder for those families. But am I being unreasonable to find it completely exhausting?

OP posts:
NicolaDunsire · 23/04/2021 18:07

Really hard to say. Depends on her health conditions I would have thought?

One of my kids is 9 & has only ever been to the doctor/hospital with a broken hand, oh & vaccinations, so compared to that yes it’s loads, but she’s just very healthy...

NicolaDunsire · 23/04/2021 18:09

I think it’s reasonable to find it exhausting btw, got distracted! But I can imagine one appointment a month isn’t that many compared to some kids, a friend’s daughter has weekly chemo for the next 18m.

SergeiL · 23/04/2021 18:10

Sorry to hear this and I know the feeling having a child with a chronic condition. Are there support groups for parents you could join? I have joined a Facebook group for parents of children with my daughter’s condition and it is a great support to all of us.

Interested in this thread?

Then you might like threads about these subjects:

Behaviour & development Children's health Families General health
Chocolatehabit · 23/04/2021 18:14

It is a lot but I guess what they meant is some children do have a lot more especially if they have complex needs- they shouldn’t have said that though.

Just as an example, a child with cerebral palsy can have appointments with neurology, orthopaedics, paediatrics, dieticians, gastro, specialist dentists, occupational therapy, speech and language, wheelchair services, portage etc etc. But that’s not to say yours aren’t overwhelming - I can’t totally see that it would be.

TheClumisestChildOfAll · 23/04/2021 18:14

6 year old DD here, thats about average for us with DDs condition roughly 1 a month, sometimes we can have 1 or 2 a week if she's having a course of physio or has had an operation or similar. Other times it can be less.

It is overwhelming though at times.

Crustybreadandbutter · 23/04/2021 18:16

Yes it’s a lot, more than one a month and each one will need booking/ travel/ head space.

Original poster
AnxietyMumEpi · 23/04/2021 18:24

I think I'm just looking to have a bit of a moan here really. It doesn't help that it's not one condition she has, but multiple ones that keep appearing. One appointment will be for her brain, the next will be for her heart, the next will be for her eyes and none are related. (Though we are under genetics so maybe they could be)

As soon as it seems one is under control a whole new condition appears and a whole new department wants tests done.

I know I'm just feeling sorry for her and myself, but I feel the need to unload.

OP posts:
RickiTarr · 23/04/2021 18:29

@AnxietyMumEpi

Do you think that's a lot?

My 24 mo DD has quite the range of health of health problems, I've been sorting out her NHS letters and that's how many she's had. Not including the usual things - vaccinations, health visitor checks, gp appointments for infections. It's things like blood tests, scans, ultrasounds, pediatrics appointments.

I mentioned at the last appointment I was finding it all a bit overwhelming and received a head tilt "Well she's not seriously ill like some children we see, is she?"
Of course I'm very grateful she's not and I understand it's much harder for those families. But am I being unreasonable to find it completely exhausting?

I’m struggling to see that an average of slightly over one appointment a month is “exhausting” TBH.

Are there other factors such as the symptoms themselves?

nicknamehelp · 23/04/2021 18:32

It's not easy when you have a dc with medical conditions and constant appointments does get tiring. I think a good week is one with no hospital appointment. I've found you need to be organised and keep a diary of symptoms and findings (departments often don't talk to each other) up to date copies of medicines.
Last year has been even harder as most only allow 1 parent in which can be hard when trying to calm a child whilst listening to doctors and ask questions (most of ours have allowed other parent to listen in on phone on speaker).

RickiTarr · 23/04/2021 18:33

X post. So it’s different specialities and tests? It’s probably more the worry than the appointments themselves.

If you were in a routine of multiple regular therapeutic clinics, you would find your rhythm.

However, in this situation, there’s stress, waiting and unknowns involved.

HerRoyalNotness · 23/04/2021 18:35

Maybe it’s because it’s what you think about a lot that makes it overwhelming. It’s not just the appt, it’s the mental load, keeping on eye on symptoms, getting referrals, booking spots, getting there, follow ups.

Last week our household had 5, 3 for me, 2 for child. This week it’s 4, 3 for me, 1 child. Currently trying to book a test and have had 4 different phone calls and still not booked.

So yes I get it, it can be overwhelming.

Original poster
AnxietyMumEpi · 23/04/2021 18:35

Yes I don't mean just the appointments themselves are exhausting, I mean the worry, the waiting, the diagnosis, the medication/therapy.

OP posts:
AIMD · 23/04/2021 18:36

It’s a lot compared to normal but I guess depending on her conditions it might be standard. I can imagine it being hard work to manage, especially if you need to balance doing it around worm/other children. I imagine it can be emotional ally draining too

Popskipiekin · 23/04/2021 18:36

It sounds like it’s not the volume of visits per se but that your poor little DD keeps getting piled on with condition after condition! That’s enough to wear any parent down I would expect, even if not “serious” they still need management and head space and you must be worrying about what DD will have to deal with in the future. They shouldn’t have said that to you and YANBU to feel overwhelmed, I would be Flowers

TheClumisestChildOfAll · 23/04/2021 18:42

@AnxietyMumEpi

I think I'm just looking to have a bit of a moan here really. It doesn't help that it's not one condition she has, but multiple ones that keep appearing. One appointment will be for her brain, the next will be for her heart, the next will be for her eyes and none are related. (Though we are under genetics so maybe they could be)

As soon as it seems one is under control a whole new condition appears and a whole new department wants tests done.

I know I'm just feeling sorry for her and myself, but I feel the need to unload.

Honestly my DD was a bit like that, and we still don't know 100% whats wrong with her, but we have a better idea now at least.
Bringallthebiscuits · 23/04/2021 18:48

I get it... my son has an average of 1-2 hospital appointments a month. The appointments never say what they are for, and he is being seen for several different issues. The booking office never knows either. I have to take time off work or sort out childcare for his little sister as no siblings are allowed. I could be at the appointment half an hour, I could be there five hours waiting around while cream is put on, bloods are taken, nurses become available. I have to take meals with me as the hospital has nothing suitable for my son’s allergies. I know some children and parents have much, much tougher situations but still all his health issues and appointments can be tiring. It must be the same for you x

Cipot · 23/04/2021 18:53

It does sound exhausting on top of everything else. The worry must be dreadful.

YellowGlasses · 23/04/2021 19:00

I don’t think it’s fair or kind for your doctor to have done the head tilt and make you feel that way. Did you say it during your child’s appointment? If so, I’d advise you to make one of your own about how you feel and make sure the appointment is with a much more empathetic doctor.

One of my children needed a huge number of appointments in the early months/years and it caused quite a few MH issues for me.

MargaretThursday · 23/04/2021 19:03

It depends on your dc.

DD1 is 20yo and has seen a doctor probably only about 25 times in her life other than vaccinations/general checks-and at least 8 of those were over the time she had pneumonia badly and had concerns raised over her health. She has only seen the doctor twice since then (which is 12 years).
DD2 has health concerns, and sees a doctor about 2-6 times a year for various things. At age 2yo, it would have been a bit more as there would have been general illnesses as well.
Ds had glue ear. And viral spots that didn't fade under a glass. Both regularly from age 10 weeks upwards. Three times in a week wasn't unheard of and sometimes the doctor calling in at home on their way home to check because he wasn't comfortable about him. It wasn't generally serious (I did have one time when the GP threatened to send for an ambulance because I said I needed to go home (5 minutes) to fetch the car) but did need to be seen.
I would say he saw a doctor (GP, A& E paed or consultant) around 40-50 times a year for his first two years. He did improve after that, but now in his teens still tends to need a doctor more than the other two.

Over lockdown dd1 has spoken to a doctor once on the phone. DD2 has had 2 appointments, one f-t-f one phone, and could do with seeing her consultant shortly. Ds has been to A&E twice (suspected broken finger and appendicitis), and seen the doctor in person 4 times (blocked ear, checking said blocked ear after treatment, unusual rash and tonsilitis) and phone consultation twice (tummy ache-that was the appendicitis, and allergy reaction)

That's a very light rate for us, barring dd1.

CovidCorvid · 23/04/2021 19:04

Of course it’s normal to feel a bit overwhelmed, worried, tired, etc with it all.

My Dd has several chronic conditions. Different specialists. So she has a rheumatologist, a gastroenterologist, a cardiologist and has now been referred to neurology.

The non stop worrying is exhausting, and I’m not an anxious person at all. She gets new symptoms and then I’m weighing up whether they’re worth going back to the GP about, which of her conditions does it tie in with, is it something new......she has a new symptom this week whichnis quite specific to a certain syndrome which she hasn’t been diagnosed with and I now think she probably has. I said to a friend I’m amazed they don’t think I have munchasuen by proxy!

I’ve found support groups on fb good, problem is I’m in so many bloody Facebook groups now I even find that exhausting!

Sorry, I don’t really have any answers.

flightless55 · 23/04/2021 19:22

@AnxietyMumEpi I could have written this post myself
My 28 month old has probably had around the same amount - lost track

It's remembering everything that's going on and who said what when / what their recommendations were / chasing prescriptions / chasing referrals / updating nursery etc

I've recently created a spreadsheet that I keep up to date and also print off prior to any meeting with any professional so I can literally just hand it over to them rather than remembering

I completely understand and it's EXHAUSTING Thanks

Thelikelylass · 23/04/2021 19:25

hey that is a lot, no doubt about it. On top of life it is all the prep, I have been there so I know.
You're doing all that AND being a great mum generally, so yep you have a right to stop and vent a bit. good luck to you and your little one OP.

roguetomato · 23/04/2021 19:33

At one point, my dc had 4 consultants. So, appointment was very regular and we had to travel long distance to the hospital too. It was exhausting. They actually tried to consolidate the appointment if they could, so we can see them on the same day if appointments were close enough to each other.
So, I totally understand your feeling.

elliejjtiny · 23/04/2021 19:39

Yanbu. I've got a child with multiple conditions and it can feel overwhelming at times, especially when he was a baby/toddler when there were lots more tests and operations. Saying that she isn't as severe as some other children is really awful, I always hate it when people say that.

Original poster
AnxietyMumEpi · 23/04/2021 19:41

Thank you for the understanding and I'm sorry to those who are going through similar X

Two of dd's issues are quite rare as well, one affecting less than 1% of the population, one affects 1 in 10,000. She's also seen in two different hospitals, the local one and the children's hospital 60 miles away. I think it all just adds another layer to the worry pile.

OP posts: