Thursday, February 17, 2011

My kid has IH?! So What's Next?

Last week, my daughter had a routine visit to her neurologist to check on the neurological impact of intracranial hypertension.  On the way out the door to the appointment, I grabbed the "yellow folder" out of habit.  Without giving it a second thought, I had grabbed her entire medical IH history file.  After 14 years of battling IH, some things have become routine.  Is that a good thing?  I don't know; maybe; yes (I think).  It's good to keep a health log, but I also felt sad after the appointment.  It was a good visit -- the eyes looked fine and the symptoms are mostly manageable lately.  But I still felt sad.  In my hand was a lifelong history of my daughter.  I think that I felt sad because this history was not full of medals, trophies, and ribbons.  This was a record of the bad things along the way, and it was a very fat folder...

I'm not doing a very good job of giving parents advice as to what's next for your child.  In fact, I'm probably discouraging you from the very next step that you need to take.  If you've been given a recent diagnosis of Intracranial Hypertension (also called Pseudotumor Cerebri) for your child, then you are feeling overwhelmed, anxious, and possibly frantic.  Twelve years ago, there was so much for our family to learn, we didn't know what to do as a first step.  There are things that you can do right this minute such as making a plan and taking action.  Here's a list of things that I recommend to get things started:

  1. Get a folder and start a health log.  It can be as simple as scribbling notes about symptoms observed with a date.  A good detailed log will be essential to answering medical questions at appointments.  You might think that you'll remember everything, but sometimes the doctors ask for seemingly simple information that you won't be able to recall.  The log is for you, not the doctor.  Record as much information as possible at the end of each day.  Track how your child looked and felt during the night, in the morning, throughout the day, and bedtime.  When were the headaches at their worst?  Did any medicines help?  What medicines and how much was taken?  Did you forget to give a dose?  How bad are the headaches?  If your child is very young, sometimes a picture helps to describe the headaches.  Was there nausea? Vomiting?  Ear ringing? Pain in other parts of the body?  Dizziness? Visual disturbances? Did he/she miss school?  This is too much detail for the doctor to take in during an appointment, but you'll be able to study the log and give an overall trend.  Save these logs forever.  I've been surprised a couple of times when I had to go back several years in the log to answer a question.
  2. Get a letter from your child's doctor giving the diagnosis and a recommendation that the school make any accommodations necessary for your child.  You are about to learn how complicated it is for schools to teach sick kids.  There are many laws dictating who can get accommodations and what they can be.  In the long term, the school will want to do testing, reviewing and writing reports.  In the meantime, the fastest way to get help this week, not 3 months from now, is to take a copy of the letter  to your child's teacher, principal, and the school's learning consultant (if they have one).  They will then be able to write a "504 plan" which means that they can be flexible with your child's education.  The school will not know how IH is impacting your child, so you'll want to ask for things such as relaxing of deadlines, extra time for tests, taking tests at a later time if needed, frequent bathroom breaks, allow visits to the nurse, develop a method for sending assignments home to be finished and returned to school when done, and whatever unique needs that IH is causing for your child.
  3. Do some research.  Right now, you are on the internet reading this blog, but I'm recommending that you not delve into the deep dark corners of every IH patient's story that's out there.  Intracranial Hypertension is a life altering disorder, but there are many successfully treated IH patients.  The best method to learn about IH is to contact the Intracranial Hypertension Research Foundation.  As of this writing, they are the only research foundation dedicated to the medical research for IH.
  4. Learn to be flexible.  I've lost track of how many times we were on the way to an outing, drove less than a mile, turned around and went home.  That's one of the life-altering aspects of IH.  Learn to always have a plan B in place.  If we don't get to go to the zoo, then let's play a game at home.
As to the "yellow folder" making me feel sad.  I went home and put it next to my daughter's scrapbook.  The scrapbook is much larger, cheerful looking, and full of happy memories.  The happy book is bigger than the sad book.  Yay!  Happy wins!

16 comments:

  1. Thanks for the information my 4 year old niece was diagnosed about 2 weeks ago.

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  2. I'm very sorry to hear that. That's the exact age that my daughter was when diagnosed. I hope that my tips help even though she isn't in school yet.

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  3. Thanks Kim...Karla,Kim is my sister and my daughter was diagnosed 2 weeks ago.Erika that has this is a twin and then I have a 3 year old.My 3 year old has a rare disease but is doing great now.You are exactly right we are all so overwhelmed by this at this point.I am actually going thru all the school issues right now.Erika is in pre-k.The school is working with us right now but Im not sure what the future holds.Thank so much for writing this blog.

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  4. I know this is hard on these kids.As well as the people who in there lives day an day out. Im so thankfull my daughter has a great support system around her. Especially her mother.Thanks for all the information, an i hope things countinue to get better for your child.

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