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Not sure how I deal with this again.

(8 Posts)
Dejavunotagain Sat 09-Apr-16 22:07:55

I'm a bit confused ( have name changed as its not related to my other posts).

My 5 month old DS was fast tracked see the paediatrician last week by my GP. He had some symptoms which worried her( and me, his hands and feet turned blue), as my DD has some heart issues. Our appointment was at 10 am... And we left the hospital at 8pm after a whole day of tests and we have to go back next week for more. The original symptoms don't seem to be worrying anyone and they have checked his heart just in case. But while we were there concerns have been raised about the shape and size of his head. He seems well but they almost kept us in for the weekend they were that worried, although they don't seem to know what it is yet.

By itself this is hard but it's bringing back all sort of memories from when my DD was a baby. Not her heart issue really as that was picked up very early on and has not given her any issues to speak of, but when she was 13 months old she woke u one day with a 'wonky face' I didn't think too much about it, but when it didn't go away I took her to the GP thinking it was maybe a teething issue. We were sent straight to a and e, then admitted and then sent in an ambulance to a specialist hospital in London. Once there they sat us down and told us that they thought she had a brain tumour. 5 days later the scans showed nothing and were sent home being told that although they didn't exactly know they thought the symptoms might have been caused by a virus. I was in pieces.

This time I am more prepared for it I suppose and trying to not panic like I did last time, but at the same time I am wondering if I should be psyching myself up for a repeat of last time, or just to try and put it out of my mind and hope it just goes away?

Not exactly sure what I am asking? But am I being unreasonable to not know how I feel about all this?

bestcatintheworld Sat 09-Apr-16 22:38:31

No advice, but reading and just wanted to say, no wonder that you are upset, you've been through a lot.

ApocalypseSlough Sat 09-Apr-16 22:53:28

You are not being unreasonable at all. Even though the outcome was good you're mentally and physically back where you with your DD all those years ago.
I've found Drs can be quite dismissive of non patients fears (which is fair enough, they're looking after your child, not you) have you got RL support? Can you talk to anyone about how this is horribly like last time?

ApocalypseSlough Mon 11-Apr-16 12:12:56

How did you get on at the weekend and how are you feeling now?

Herzie29 Tue 12-Apr-16 08:46:23

Hello, sorry I've not been back till now. It's all been a bit hectic. We spent another 3 hours hanging about yesterday to be told all were actually there for was a repeat blood test just to make sure ( all the ones on Friday were fine).

They will follow up in a month!

I know it that DH and I have maybe over reacted a bit emotionally because of what happened with DD. But the hospital have already admitted that they have handled it really badly. A complaint has been suggested (by them).

He still looks fine, albeit with a large head and raised fontanelle! However I am taking DD to her annual cardiac review today with another paediatric consultant in another department so I will be asking them to have another quick look.

Thanks for holding my hand through this.

IgglePoggle Tue 12-Apr-16 13:10:46

Hi, not wishing to even attempt to diagnose, but has craniosynostosis been suggested at all? (please don't google (as all sorts of crap will come up) but the Wikipedia article isn't bad (my DS has metopic cranio).

Herzie29 Tue 12-Apr-16 22:24:28

Hi Iggle, yes I read about this before (when I first noticed the bossing at about 6 weeks). I mentioned his head shape to the GP who just measured it and said it was in the normal range. This time so far nothing like this has been mentioned - it's all been about ruling put the acute stuff like meningitis. With a vague inference about other possible things that might be causing it.

At DDs appointment today they had another look at it and ' further imaging' was mentioned between them ( DDs appointment involves a team of 2 consultants and the registrar who saw DS over the weekend) but all they said to me was that they would ' have a think' about DS and get back to me.

From what I read this seems like a possibility. Can I ask Iggle how your son was diagnosed? And how is he with it?

IgglePoggle Thu 14-Apr-16 01:47:24

Ask away! (and feel free to PM me).

DS was premature (3 months early) and we were sent to Alder Hey for an expert opinion due to plagiocephaly (slightly flat area at the back of the head) which is very common in premature babies because of the amount of time they spend lying down.

Cranio is not widely known about (his - fabulous - consultant in the SCBU unit had never heard of it but does know now) but Alder Hey is one of the specialist hospitals for it; and they picked up on it - we were a bit bamboozled by it all - thus the advice not to Google (for the record it is not an indicator that the child will likely have autism. That "study" has been completely debunked).

In DS's case it hasn't affected him at all. The plagio has sorted itself out over time (he's 8 now) and unless you've been told about the cranio you wouldn't notice the slight ridge vertically down his forehead (metopic ridge). However during the early days I did find some fantastic support groups online and I'm still in touch with a couple of the people I found there if you need any contacts. In some cases surgery is required but thankfully for DS it wasn't.

DS is now a typical 8 year old boy. Doing great at school and taller than 99% of his classmates with no health problems whatsoever (very rarely even gets a cold!) which is hard to believe when he came home from the hospital on 12 different medications and with a heart murmur (that sorted itself out as well!). Unless of course you count the addiction to Minecraft ;)

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