Pediatric intracranial hypertension

@joey1102 You are talking about a very young child so no wonder you are worried. How are you taking care of yourself as you try to take care of your son? Are there are family members who can support you through this?

Are you looking for another opinion in California? Is your son's treatment team at a major academic medical center? From your description it sounds like a pediatric neurologist is what your son needs. It's always a good idea to get a physician referral. Here are a few suggestions:

1. Talk with your son's pediatrician about your concerns and ask them for a referral for a second opinion.

2. Talk with your son's physician where he is being seen now about your concerns. I know how difficult that is to start this conversation but if the physician and team are patient-oriented they will work with you on getting another opinion.

3. Oakland Children's Hospital is affiliated with UCSF. It's an acute care hospital however the physicians and clinicians there diagnose and treat children. There may be a specialist there for your son.
https://www.ucsfbenioffchildrens.org/
4. If you are looking for a second opinion at Mayo Clinic and are willing to travel here is the link to request an appointment. Better yet, ask your son's pediatrician for a referral to Mayo Clinic.
http://mayocl.in/1mtmR63
Would you please come back here and let me know what you decide to do?

Hello @joey1102

I am really sorry to hear of your four-year-old son's health issues. Your concern is certainly understandable and I hope that you are able to get a second opinion before long.

Are you aware that there is a Mayo Clinic campus in Phoenix, AZ? You might consider contacting them to see if an appointment can be made. Here is the information for making appointments at any of the Mayo Clinic campuses, http://mayocl.in/1mtmR63?

If there are any problems getting an appointment at Mayo, I would highly recommend that you contact your insurance company to get the best possible referral to someone in your area who specializes in pediatric problems such as this. I would also like to invite @astaingegerdm to this conversation. She may be able to offer some more insights.

How is this pressure affecting your son's life?

@joey1102 - it must be frightening for you not to see an improvement in your son’s acute illness.
You mention that he is given max dose of Acetazolamide and intracranial pressure is still high. Was he on prednisone too?
How many days has this been going on?
Are Neurologists in charge of his care?
As you must have been told, this is a rare condition. It often is difficult to find a cause.
I agree with my colleagues in the above posts that it’s urgent to get a second opinion at a major University medical center or at Mayo Clinic.
The urgency is due to the risk that prolonged pressure in the eyes could effect his vision.
Can you let us know how things are going? When you get a chance, of course!

Hi all, sorry for the delay in reply. And really appreciate all of your support and advice!

My son has been treated by Lucile Packard Children's Hospital, and per your suggestions we just got into touch with UCSF as well to get their opinion. Given the rarity of his case, we'd like to get as many expert opinions as possible. Do you know if Mayo offers remote consults?

@astaingegerdm His symptoms started in mid Feb and they confirmed intracranial hypertension in early March via observation of papilledema.
His Stanford care team is led by a neuro-opthalmologist and a neurosurgeon among others. I believe they are doing their best in trying to manage his pressure, but so far still struggle to find the primary cause.
He is currently on 40mg/kg diamox and has not had steroids. They are thinking of starting him on dedracon once all the tests (including a potential biopsy of a bone lesion in his clivus) are done. Outside of that, the current course is repeated LPs to maintain the pressure.

Thanks again and welcome any additional thoughts!

@joey1102, to your question regarding virtual consults at Mayo Clinic. I suggest you inquire at the Children's Center at Mayo Clinic in Rochester, MN.

Mayo Clinic welcomes both new and existing patients for virtual and in-person care, including elective surgeries, in adherence with federal and state executive orders and guidance. Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs. Here is more information and how to get started with submitting an appointment request: http://mayocl.in/1mtmR63