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Jessica

Resources for Pediatric SAH due to aneurysm

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Hi everyone, last December my 7 year old daughter was rushed to the hospital with an enormous cerebral aneurysm and SAH. She was treated endoscopically with coil embolism and flow diverter at UCSF - it was the absolute best care we could have hoped for. It’s been about two months and I am struggle for resources focused on pediatrics.

 

Granted, the population is so small that I can understand why there isn’t much literature. But I spend 95% of my research sifting through studies on adults, and I am hoping that someone has found more information focused on kids? Thanks in advance. I’m learning to ask for help when I’m struggling and I’m hopeful this post will reveal some decent resources. 

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Hi Jessica,

Welcome to BTG as we call it,

So sorry to hear about your daughter having SAH, 7 years old is such a very young age to be going through something like this, it will have been a very traumatic time for you all.

 

I don't personally have any knowledge about where you can get more information, but I can say that you have come to a great place for help and support, if anyone here has any information that will help to point you in the right direction I'm sure they will come along and share it with you.

 

We can't give medical advice as non of us are medically trained, what we can do is share our own experiences of SAH, give you lots of support, there are quite a few here who are carers of someone who has suffered SAH, so don't feel like you are alone, you are not.

 

2 months is still very early in terms of recovery, try to make sure your daughter drinks plenty of water, staying hydrated does help with headaches, lots of rest and trying not to over do things will also help, just take it one day at a time.

The recovery road can be a little bit bumpy at times, good days and bad days are normal early on, we are here for you and we will try and help you as much as we can.

 

I wish you and your daughter all the very best as you go along the recovery journey.

Love

Michelle  xx

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Hi Jessica

 

sorry I too don’t have a lot of advice for you except what the others have said about water etc. 

 

My brother had SAH when he was 16 that’s the youngest I’ve heard. He made a full recovery but was in hospital for a long time. Mind you that was about 50 years ago when you stayed in a lot longer than now. 

 

Hope she she recovers well and you find the support you need. 

 

Clare xx

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Hi Jess

i think some of the tips of what helps bring comfort may work equally for a child; so don’t overstimulate, lots of water, healthy food intake anD eat more regularly , probably check vitamin and mineral levels regularly especially as she’s growing too. 

 

Different strokes help young survivors of stroke which SAH is a type of . They may have more experience to share 

 

 

https://differentstrokes.co.uk/

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Thank you all so much for your kind notes.

 

And to Daffodil for the recommendation - I'll look into them.

 

We were in the ER on Saturday where she endured her first full MRI without any anesthesia, a huge achievement for us both, though of course she gets full credit! Though we saw strange symptoms that led us there in the first place, the scans show largely good news. So, phew.

 

But the follow-up conversation with her neurologist opened a can of worms about the performance and longevity of a stent placed in a young child as the decades tick on...so that's my latest quest. To self-educate about how stents age with patients. Never seems to end.

 

Much love, and thank you again, from both of us.

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Hi Jessica,

I too am very sorry to hear your daughter suffered a sah at her tender age of 7.  I can't imagine how awful that must have been for you both.

It's not helped by the fact that there is hardly anything on the internet regarding children who suffer an sah.  I would suggest writing down any queries or concerns that pop into your head as and when they do and then take the list to your next appointment with her specialist.

 

Whilst 7 year olds are usually very active, I would imagine that she will become very tired after little activity, just like us adult sah survivors do in those early months and like the majority of us, she won't necessarily recognise when she needs to rest. Sleep, rest and drinking plenty of water definitely help the brain heal. Sorry I can't comment on stents as I didn't require one.

 

I hope her recovery goes well.. I wish you both all the best and do come back if you feel you need any support, emotional or otherwise - we're a friendly bunch with combined personal experiences of sah together with what can be a rather long road to recovery.

 

Best wishes,

Sarah

 

 

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Jess, 

 

you are welcome.   I seem to have managed to delete the last bit of my post that sent you all positive vibes. So sending again.

 

Try to  take each day as it comes but find and notice something good in each one whether it’s the sun shining or managing to brush her own hair.

 

tell her for whenever she has a next MRI that I try to make up silly songs that match the clunky sounds , ( had loads) it helps me not worry, You could also maybe  consider learning together some mindful relaxation techniques that will help both of you when in a medical situation. I practised it before my SAH  and it’s helped me through no end. 

 

Ive recommended before Finding Peace in a Frantic world is a good entry read and self taught practice. If you did it then maybe you can help her with it, .

 

good luck and as Sarah said, do ask because some things folk here will get irrelevant of age. 

 

Daff x 

 

 

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Jess,

 

Sorry to hear about Daughter, I have had a shunt in since 2009 permanent one. (But I am an oldy)

 

Keep searching or ask Docs what is best for your Daughter xx They can advise you...

 

Good luck to Daughter xxxx

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Have you found Pediatric Intracranial Aneurysms on mc.vanderbilt.edu?  It was published in 2010 but makes an important point about the advances that have been made in recent years. 

 

Also, just in my brief perusal, it appears that UCSF is a most excellent facility. You are blessed on that score.

 

Best wishes,

Colleen

 

 

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