To travel to Peru with IIH?

[mumoronegirl]

My daughter (14) has idiopathic intracranial hypertension (IIH) which is currently under control. Her ophthalmology checkups show limited swelling of the optic nerves and she has not been on acetazolamide for over a year. She has the opportunity to go to Peru with school which would be an amazing experience. However, she will be staying at high altitude (8,900 feet). I know that hight altitude can cause IIH symptoms to worse and those with IIH are at higher risk of altitude sickness and cerebral oedema. She is under a paediatrician rather than a neurologist so we don't really have a medical expert to ask about this. Should she go to Peru?

I would speak to the paediatrician who can discuss with his neurology colleagues.
That altitude is not too bad but with IIH you would need to be careful. I've done the inca trail and the effects of altitude are horrible. Took until day 3 for my body to adapt.

There's a place called " the altitude centre" in London which could maybe give advice as they have specialists in altitude sickness. Just googled it .

I think the clincher is what help could she get in Peru if things went wrong. If the nearest hospital is not good and there aren’t the specialists she needs, I would say no. I would also check if the travel insurance would even cover her and at what cost.

You don’t think your paediatrician is sufficiently expert so you ask the opinion of random untrained MNers?? That doesn’t make a lot of sense. Ask your paediatrician, if they don’t know they can consult colleagues.

I was totally healthy visiting Peru but had slightly low blood pressure.
The altitude sickness was horrendous (many people had it) and on top of this like EVERYONE we met i also had D&V. Mostly D.
This for many involve awful stomach cramps and bleeding bowels... sorry for the tmi but you should know

I was sick as a dog for 8 days in cusco/incase trail and never acclimatised. I didnt feel better until we landed in the amazon.

very honestly Peru is NOT a first world country. The medical attention is BAD and infrastructure is poor.
There is no chopper coming to airlifted her to a hospital.

There is no way having been there and knowing what i know I would send my own (so far so healthy) child to Peru on a school trip alone let alone your child

I was an adult when i went and honestly quite scared at more than one point.

Maybe it will be okay..maybe it wont. I just wouldnt risk it for an overpriced school trip thats optional and run for profit by businesses that come and pitch this in schools.

I actually find it crazy you are considering it... clearly they did a good sales job!!!

She has no need to go right now. None.
Put the money in a JISA and let her do a gap yeat at and 18. She could likely backpack the whole of SA for the price. I preferred Brazil and Argentina by a long way.
Hth.

This does not sound like a good idea, and on purely practical terms I don't think the school will be willing to take responsibility for her on such a trip.

Unfortunately no. IIH is a rare condition and a paediatrician is a general children's doctor. Because my daughter's case is not severe she not been able to see a neurologist. Even if she did see a neurologist most have very little knowledge and experience of IIH. I was hoping people who have IIH themselves might have some personal experience of altitude.

Is she likely to visit anywhere higher as a trip, that’s not particularly high but you need specific advice. I’ve been to 11000 metres (no health issues prior) and you can feel the difference when hiking. I’d also see if she can even get insurance, I doubt a group policy would cover her

Thank you. I will look into that.

Good points, thank you

That sounds like a truly possible experience. The price of the trip is not bad at all as it is not an external company arranging it - the school does so as part of an international arrangement with schools in other countries. I feel it is important that my daughter doesn't feel her health conditions hold her back in any way, hence I usually encourage her to get involved in whatever is on offer. Not at the expense of her wellbeing though, hence the dilemma. Thank you for your information about your experiences.

School is happy to take her, but perhaps they don't understand IIH and altitude!

Ive been to Peru but was travelling in SA for several months. I gradually acclimatised to the altitude

i dont think i would go there on a short trip of 1-2 weeks. Are they going to Cuzco?

IIH isn't rare - a neurologist that perhaps does both paeds and adult will likely be able to give sensible advice. You may be better off organising this privately however as it's travel related rather than a medically indicated thing.

You will need to check out insurance. And also that the school know what to look for if it gets worse. Peruvian medical care isn’t great, I’ve been there.

I would say no.

Travel has been, and remains, one of the highlights of my life. I’ve been to some amazing places. And it was a hugely formative experience for me, and many of my friends, as we moved towards independence.

I would love that for your daughter and I would be worried that a bad experience, at 14, on her own, would hugely put her off.

Is there no other adventure travel option with school in future years, or with you and a friend for example, which would be more suitable?

IIH is classed as a rare disease. 1-3 people in 100,000 for the general population. As my daughter developed it as an 8 year old at a slim weight and before puberty that makes her more her more unusual as most people with IIH are obese women of child bearing age. Incidents of IIH are increasing though and this is thought to be due to obesity becoming more common. As far as I could find last time I looked (a couple of years ago), only London and Liverpool have neurologists who specialise in IIH, and I couldn't find any who are child IIH experts. We don't live near London or Liverpool so we are a bit stuck. I have spoken with my daughter's paediatrician but she wasn't able to give any advice really, hence asking here. We did go privately for my daughter's scoliosis but were lucky to find a surgeon who could operate on her local to us. I'll have a look again and see if any IIH specialists have migrated to our area. Fingers crossed! Do you have IIH yourself?

Thank you. Yes there may be other opertunities later, but only 20 or so students get to go on each trip like this so places are highly valued and there is no guarantee she would be selected again. It would be much less worrying to say no and play it safe, but that's not how I want her to feel about life. She also has scoliosis, dyslexia and ADHD and I want to teach her that she can do anything she puts her mind to, just like anyone else. Until this point that has always been the case. I think you might be right though.

Lima 6000 feet/1829m
Cajamarca 8,900 feet/2713m
Tarapoto 8,900 feet/2713m
I think. Nowhere higher.

I’m wondering whether if you had a good conversation with school, her being chosen could be deferred to the next trip? And someone else is chosen for this one?

So no one misses out but her place is swapped for a later trip that is more suitable if possible. If she is possibly a little bit less emotionally mature than other 14 year olds because of her adhd (my son has adhd too) then I’d say this should definitely be your choice and not hers if it might come with medical consequences.

If it was my child I’d be keen for her to do adventure travel, but just not high altitude until she’s a bit older.

I do LPs on people fairly frequently to support their diagnoses - it's fairly commonly managed by neurologists in the DGH setting. Did she develop it after the scoliosis surgery? What does her spinal surgeon think?

No, scoliosis surgery at 13, IIH diagnosis at 8. Scoliosis only developed during puberty (idiopathic adolescent scoliosis). From what I've read IIH is often managed by neurologists, but very very few actually know anything much about IIH as so little is understood about it's cause and there aren't any truly effective treatments.

I have IIH and I totally would, and have travelled to central and South America with it (though not specifically Peru)

It’s not an illness where things go wrong in hours to days, if you have a flare it’s over days to weeks, and it doesn’t cause sudden life-threatening symptoms so there’s always time to get back if something were to go wrong.

Also acetazolamide is commonly given to treat altitude sickness in climbers so she should be good there - always a silver lining 😀

Oh and I’ve done the Annapurna circuit since having it and didn’t really struggle with the height. Max height was about 17,000 feet

Thank you!

I disagree, severe spikes in ICP can cause permanent visual loss.
Given her age when she developed it it's likely that she has an unfound abnormality somewhere.
It's not something I would risk with my child (Optometrist)