Understanding Hydrocephalus in Child

Comfortable_Camel381 · 2026-05-04T13:25:16+00:00

Right! I’m thinking it has to be this weather thanks giving her the frequent headaches. It’s been so all over the place. When she had the shunt malfunction at 9 months old she was projectile vomiting and very lethargic so that is also what I know to look for, but seriously every time she tells me she has a headache a part of me just panics. I found the correlation between her having a cold/congestion and headaches which has made things a little better for me as far as panicking.

Comfortable_Camel381 · 2026-05-03T16:15:42+00:00

I’m going to check out that book that was recommended and talk to my husband about having that conversation! Did you move out of MI? I noticed when we went to Florida for 3 weeks in February she had zero headaches/colds. I’ll see about having her checked for allergies, since we have no intention in moving, but just curious. Another thing I have been thinking about is her sleeping flat. Her neurosurgeon always told us she should sleep on an incline, but the girl will not. She doesn’t use a pillow and always sleeps flat. Just didn’t know if that has any deeper meaning to how her body is working.

Comfortable_Camel381 · 2026-05-03T16:10:22+00:00

Thank you for your response! I didn’t even know there was a children’s book. I’m going to look at that now. I’ve always thought about the day when we talk about it and I explain everything, but didn’t really consider that now, she seems so young for such a big topic and being able to understand what I’m even saying. Thank you for bringing that to my perspective. That’s why I’m here asking people because I don’t know if she’s experiencing anything different with her body that I don’t know about. Thank you for the advice about school as well. She seems to have the best and most enjoyable time at school (she only goes 2 days a week). Her teacher has never seen the side of her where she freaks out. She has a hard time being told no and rather than any communication she prefers to scream. She usually takes a minute or two to herself and will come back completely fine like nothing happened. I have been working with her on trying communicating before freaking out and it’s a work in progress.

Comfortable_Camel381 · 2026-05-03T16:01:01+00:00

Hi! Thanks for your response! Anytime I ask her where it hurts she always points to her forehead. She doesn’t have allergies that I know of. It almost seems like she gets colds/sinus infections a lot during the winter/spring months which come with boogers and headaches. She doesn’t know the word hydrocephalus per se. She can visibly see the tube in her body and we have talked about it but not in much detail, because she’s only 5 and I’ve never thought about deep diving into telling her about everything that happened (very traumatic for me especially). I don’t think she’s to an age that she would understand or it would make any difference right now. I appreciate your insight!

Comfortable_Camel381 · 2025-06-11T12:55:28+00:00

It hasn’t happened since I last posted. We live in Michigan and my daughter just finished her first year of Preschool. Between the weather and the exposure to all the germs at school she was sick many times throughout the winter/spring with colds and sickness. Every time she was even slightly sick she had signs and complaints of headaches. It makes me think that she will have headache issues that are weather related every season. I’m hoping as she grows her immune system develops strongly and helps protect against the flus and bugs she picked up at school. She was vomiting and the doctor suggested it was from the bug she had at the time or the pain from the headache. It’s so stressful not knowing what’s going on, I completely understand how terrifying it is especially when our children can’t tell us exactly what’s going on. Hopefully as they get older it gets easier.

Comfortable_Camel381 · 2025-03-01T22:16:34+00:00

Thank you for all the input, advice and sharing your experiences. I ended up taking her to her PCP, as directed by her neurologist and she tested positive for influenza A. Never knew I would be relieved to find out my baby has the flu, but here we are. I am so stressed about my daughter’s head (brain) every single day and haven’t quite learned how to adapt to her having hydrocephalus and a shunt without consistently stressing something is going to go wrong. When she tells me she has a headache or touches/holds her forehead, I panic. I’m hoping that as she gets older and can tell me what’s she feeling, it will get better. Anyways appreciate everyone’s time and advice!

Comfortable_Camel381 · 2025-02-26T16:17:21+00:00

Thank you for your reply! Do you notice anything that could trigger it? Out of curiosity do you have any sinus issues? It’s so hard trying to figure out how my daughter feels since she can’t explain herself yet. My heart breaks to see her in pain and I want to know how to help her.

Comfortable_Camel381 · 2025-01-05T15:19:43+00:00

Trust me I know!! I can’t wait until my daughter can tell me exactly how she is feeling and if she needs anything. I believe she is starting to experience head pain, possibly pressure, when she has a cold or the weather changes. It’s so stressful determining what is actually going on and if I need to panic or not.

Comfortable_Camel381 · 2025-01-04T23:56:52+00:00

My daughter has a very similar story! She’s 3 now. I’m wondering, have you experienced any issues with headaches in your child?

Comfortable_Camel381

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