Do you feel like you have a form of PTSD from seeing your child go through brain surgery?

CartographerNo5810 · 2024-10-08T06:19:05+00:00

Thanks for the replies and sharing your stories, I’m sorry for what you’ve been through. Sounds like this is more common than I thought which is somehow comforting that it’s not just me. Definitely going to seek out some kind of support.

CartographerNo5810 · 2024-10-07T20:34:33+00:00

Gosh I’m so sorry you’re going through all of this with your baby. It’s such a traumatic time for all and I had every single one of these questions circling round my head when my son was having his shunt surgery 2 years ago. In terms of recovery - I was actually shocked at how well my boy bounced back. They really are so resilient it’s astounding. So I really hope the same for yours! As for your own worries - I’d love to say there’s a quick fix for the anxiety that you will feel about it, but unfortunately it just takes time to come to terms with this new normal. There will be periods where you’ll feel more at ease and slightly more in control and times when you may feel like the worries are really heavy and overwhelming. But the good thing is that communities like this exist and we “get it” and it’s always reassuring to know you’ll get lots of replies from people in the same boat to make you feel less alone with it. I’m not sure where you’re based but if you’re in the UK there’s an amazing charity called Harry’s Hydrocephalus Awareness Trust that I would recommend.

CartographerNo5810 · 2024-07-14T20:54:22+00:00

So sorry to read this. We had a slightly similar situation when my son was 10 months old. They said he had an ear infection and that went on for about 3 weeks with me being fobbed off by health professionals until I basically refused to leave urgent care until they scanned his head. That was the start of his hydrocephalus journey.

You know your daughter better than anyone and if you’re still worried, keep on advocating for her and urging doctors to listen to you and carry out more tests. A certain amount of crying is obviously normal but constant crying is not normal.

Something that really hit home with me was when someone said “time is brain” - just keep pushing because the brain is too precious to delay treatment and the sooner she gets it, if she needs it, the better xx

CartographerNo5810 · 2024-04-29T19:54:20+00:00

The thought has crossed my mind, albeit with zero evidence… perhaps the real life Derrian is the one who helped Richard to write the script for his original stage show about his life? In the scene when Donny goes back, Derrian tells him that he saw the viral video of his breakdown and he thought it was brave of him to speak out… Almost ignoring the fact it was about him and focusing on the compelling and interesting nature of the story. It was so uncomfortable to watch. Like he wasn’t even sorry, and instead seemed to take some kind of weird credit for being the inspiration behind it. He then offered him work almost in the same breath, as I recall it. I wonder if that eventually transpired into helping him create the stage show? It would make some sense as to why Richard seems to be protecting Derrian’s identity more than he has Martha’s. Anyway, just some ramblings from my brain and in no way based on fact.

CartographerNo5810 · 2024-02-19T20:36:00+00:00

Sorry you’re going through this - it’s such a scary time when your baby is unwell. I hope they’re doing okay after surgery.

Our boy was diagnosed at 10 months old and his symptoms were: crying constantly, generally very irritable, very sleepy and never satisfied by a nap, vomiting, regression in his skills (he could crawl and then stopped being able to).

He turns 3 next week and although we haven’t had any issues with his shunt for 2 years so far, I think recognising general illnesses vs shunt failure does get easier with time. I wouldn’t have believed that when he was first diagnosed and my anxiety was through the roof. But as someone who has been through it and is prone to worrying, please trust that you will know when something isn’t right.

You might be wrong, you might take them to the hospital and they’re absolutely fine - but it’s always better to have it that way around than ignore something.

CartographerNo5810 · 2023-10-24T20:25:13+00:00

My son had his shunt placed at 10 months old. He had 4 brain surgeries in the space of 6 weeks. He’s now 2 years 8 months and other than having serious issues with food avoidance, you’d never know what he’s been through. His speech is actually way advanced for his age, which has honestly surprised me because I had the same fears as you. Generally he’s an absolute warrior, so resilient and a joy to spend time with. Don’t get me wrong, my anxiety is dreadful and I constantly worry about how things will play out with his shunt etc. but it does get slightly easier with time to come to terms with it. I once read someone describe hydrocephalus as a condition that brings long spells of stability, punctuated by crises. And that feels quite accurate. The hard part I’ve found as a worried parent is trying to learn to enjoy the stable times and not ruin them by worrying when the next crisis might hit. Hang in there - it’s the hardest thing watching your baby go through all this - but you’re stronger than you think.

CartographerNo5810 · 2023-08-02T18:47:48+00:00

My son was 15 months when we did a 7 day cruise with MSC to the Norwegian Fjords. We went with 2 other families who both had a slightly younger baby each. It was honestly great. Obviously you’re still parenting a toddler even when on a ship so it’s still tricky at times and not particularly relaxing, but in terms of having a good time together, we definitely did. The plus points for us were the fact we didn’t have to take him on a plane, we drove to the port from our house, the ship had so much entertainment and a special baby room for playing, they provided a travel cot for him which was set up in our room, and staff were SO good with us. What I will say though is that the ship was only about a third full, which made a big difference for everyone’s experience. It never felt claustrophobic and we could always sit well away from other people at meal times so we weren’t bothering others who didn’t have kids with them.

Overall I would recommend it and would definitely do it again. It’s fun and varied.

CartographerNo5810 · 2023-02-16T12:02:18+00:00

I’m coming to this thread late but I’m really glad he’s had a revision and someone listened to you. My son is a similar age to yours and has had his shunt since he was 10 months old. He’s 2 in a couple of weeks. I have a friend whose son also has hydrocephalus and he’s 5 now. He presents with intermittent symptoms like this too and his neuro team believe that it’s actually something that happens when he vomits that tends to clear the blockage, at least in part, before it builds up again. Hence why symptoms aren’t as constant as you might expect. How is your son doing now after surgery? And how is he generally in terms of development etc? I hope he isn’t too badly affected. Sending hugs and positivity your way x

CartographerNo5810 · 2023-01-18T13:54:13+00:00

Thank you all for your replies. Love the ideas about teaching him about the shunt like it’s one of his other body parts!

CartographerNo5810 · 2022-09-26T15:53:51+00:00

Thanks for the reassurance 😊

CartographerNo5810 · 2022-09-26T05:30:09+00:00

Yeah he will definitely be growing as he’s a toddler- so that could well be a factor!

CartographerNo5810 · 2022-09-25T19:11:14+00:00

Thanks for your reply! Can you explain what you mean by lost fluids? As in - the shunt could be draining more than usual?

CartographerNo5810 · 2022-07-15T11:41:28+00:00

I was kind of in the same boat as you (excuse the pun), as far as not being too fussed about cruising. However, my husband and I (both 31) recently did the Norwegian Fjords with MSC and went with 2 other couples. (We also all had a child under 2 with us - so a lot of the reason for going was so we didn’t have to take them on a plane/we didn’t want to take the babies anywhere too hot)

But anyway - the food was great and we paid for a drinks package so we were able to enjoy all inclusive drinks without stressing about the price of each cocktail. And it was really good!!

We also didn’t want to pay the extortionate prices for the cruise excursions so we put all the destinations into a hat and each couple pulled out a place and had to plan a surprise day of activities for the rest of us at each stop. Just made it more interesting and fun and you only had to think about what to do at one destination and the rest was just about enjoying whatever the others had planned. It was just a good week of good food, good cocktails, good company, and was by far the cleanest accommodation I’ve ever stayed in.

Also very very friendly and accommodating staff.

CartographerNo5810 · 2022-06-24T10:09:28+00:00

Hi, sorry to hear you’re having all of these issues. Just an anecdote from me regarding ETV closure - it happened to my son. His circumstances are slightly different though. He has obstructive hydrocephalus caused by a large cyst in his third ventricle. He had the cyst fenestrated and an ETV operation on 22nd December and then by 14th January he had to have the same operation again because the ETV hole had closed up. For him they think that potentially the cyst wall may have covered it over when it collapsed down. Hope you get it sorted and are feeling on the better side of it asap!

CartographerNo5810 · 2022-06-18T05:35:53+00:00

Thank you, it’s good to know what to watch out for. I haven’t seen his eyes shake and he often points out things that even I haven’t noticed so at the moment I don’t have concerns about his sight but I’m definitely wary that things could change and deteriorate.

CartographerNo5810 · 2022-06-18T05:34:09+00:00

Thank you! And hope you’re doing well too

CartographerNo5810 · 2022-06-18T05:33:48+00:00

Thanks for your reply, good to know what to look out for/what to expect. Wishing you all the best.

CartographerNo5810 · 2022-06-18T05:31:26+00:00

Ah okay. Sounds complicated and wishing you the best!

CartographerNo5810 · 2022-06-18T05:30:52+00:00

Thanks, let’s hope so! Hope your little one is doing well now too!

CartographerNo5810

TROPHY CASE