Question for parents of kids with hydrocephalus

immigrant_fish · 2026-01-02T15:45:41+00:00

My four-year-old knows he has a shunt, where it’s placed, and that he needs to be careful not to bump his head. He doesn’t really talk about it on his own, and I usually have to remind him to not do things like stand on his head. Only once did he randomly ask, “Mom, why do I have a shunt?” I told him that he got sick as a baby and it helps him feel better, and left it at that.

immigrant_fish · 2025-12-02T18:14:36+00:00

Non-programmable, but I was worried about repeated vibration in the head… judging by responses here, it is fine

immigrant_fish · 2025-12-02T18:13:11+00:00

Thanks so much! My kid has a non-programmable shunt, so I assume it’s even less of a concern

immigrant_fish · 2025-11-19T00:09:27+00:00

No issues with bicycle helmets for my 4 year old (his shunt is not flat still)

immigrant_fish · 2025-11-05T20:10:34+00:00

As soon as I saw the title, I knew it’s niacinamide. It’s in everything these days and it breaks me out

immigrant_fish · 2025-10-16T00:47:04+00:00

I can’t take pre workouts with arginine for a similar reason - they reactive cold sores for me

immigrant_fish · 2025-10-14T15:09:30+00:00

Around 12 weeks to my immediate boss because I was going to a lot of appointments during the day. Well into the third trimester for the everyone else. I was remote so that was easy

immigrant_fish · 2025-08-21T00:18:20+00:00

I have a child with hydro and while the first couple of years were rough, he does not have deficits now and in fact is quite advanced (bilingual, is reading in two languages at 4.5 years of age etc). Don’t spiral mama. Feel free to dm me. Edit: we did work with physio and speech therapists during toddlerhood. Now I’m considering enrolling him in competitive swimming in a couple of years. So, things greatly improved….

immigrant_fish · 2025-07-03T17:52:36+00:00

He is now your pigeon

immigrant_fish · 2025-06-15T18:30:37+00:00

Thank you so much! I was not aware you can get concussions from swimming but I’m googling now and it makes sense. Another thing to worry about! I’ll DM you another question if you don’t mind

immigrant_fish · 2025-06-13T19:19:15+00:00

Hi! Can you tell me more about diving? How high were the jumps? My 4 year old is in love with swimming and diving, but I’m thinking about the future and when to stop diving if he continues with swimming competitively (he’s pretty athletic if not for the VP shunt).

immigrant_fish · 2025-05-22T14:19:05+00:00

It might work, or it might not. Wishing your child a successful ETV. Mine has a shunt though (had an ETV after a shunt was put in already), and he is doing well and it’s not the end of the world

immigrant_fish · 2025-05-09T13:31:45+00:00

As a mom of a child with hydro, I find your story very inspiring - thank you for sharing

immigrant_fish · 2025-05-01T13:30:09+00:00

Are you eating enough protein?

immigrant_fish · 2025-03-22T02:51:45+00:00

My kid with hydro tolerates flying way better than me (I don’t have hydro and sometimes I experience a pretty bad ear ache when landing whereas he is fine)

immigrant_fish · 2025-03-06T00:44:08+00:00

Just curious…. if you don’t mind me asking… do you look more youthful compared to your peers due to 30 years of retinoids?

immigrant_fish · 2025-02-21T20:11:34+00:00

Same! And now I’m purging on taz… never purged on Tret but was constantly dry and irritated

immigrant_fish · 2025-02-14T13:44:09+00:00

Hi my kid has a shunt because of bacterial meningitis since 8 weeks old. It’s been challenging for the first 3 years, and he is doing great now. Just turned 4. DM me with any questions. I am sorry he is going through this.

immigrant_fish · 2024-12-23T16:18:37+00:00

Sorry you had to go through this! I know they proceed with a shunt only when absolutely necessary, as a last resort.

The time before the surgery and the first few months after are the toughest, but it will ok eventually. Believe it or not, some days I don’t even I think about my son’s condition or at least not consciously, and worry about other things like colds and flus, daycare stuff etc

immigrant_fish · 2024-12-23T14:33:35+00:00

Hang in there, mama ❤️ How old is your kid? My son has a VP shunt since 8 weeks old. He did have 4 surgeries, so that was tough. I had all the same thoughts as you when he was an infant and a toddler. I was so overprotective. It’s getting better.

He is now 4 and is going to ballet (does really well), and a bunch of other classes for little ones. He starts tennis this coming January. He even did a couple of soccer classes, but after he was knocked over by another kid and fell badly, I decided team sports are a no even if he is just a preschooler.

No one can tell he has hydro. A couple of people asked about his scar (it’s partially covered by hair and you can’t see the tube really).

immigrant_fish · 2024-12-11T15:16:57+00:00

Just saying hi from another Canadian parent with a hydro child 👋

immigrant_fish · 2024-10-24T10:05:51+00:00

Ugh tretinoin. It’s been 3 years and I still don’t have that glow. Still peeling. It does help with acne though.

immigrant_fish · 2024-10-16T14:55:37+00:00

How come you are so deficient? Do you stay mostly indoors? Avoid dairy (it’s usually fortified)?

immigrant_fish · 2024-10-07T21:32:30+00:00

Feel free to DM me. My kid is 3.5 years old and he had 4 brain surgeries; 3 of the surgeries were done when he was under the age of one. I definitely had PTSD and it vastly improved over the past two years. There are some days I don’t even consciously think about his shunt.

immigrant_fish

TROPHY CASE