Saturday, September 11, 2010

+1506 - Idiopathic Inter-cranial Hypertension (IIH)

David's new diagnosis is Idiopathic Inter-cranial Hypertension (IIH).

Breaking it down, this means:

Idiopathic = they do not know the cause
Inter-cranial = inside David's brain
Hypertension = pressure inside the brain

This is also called Pseudotumor Cerebri but there is no tumor, thus the name "pseudo."

On Tuesday, Sept 17 he had an appointment with the ophthalmologist. She saw Papilledema or swelling of the optic disc and reported it to Dr. Agarwal in LPCH. Dr. Agarwal wanted to admit David immediately.

At LPCH they did a CT scan and a MRI. The results only showed excess cerebral spinal fluid. Next they did a lumbar puncture. He did well during these procedures. He did not need sedation for the CT scan. For the MRI he was put to sleep and told me the drugs made him feel weird; he did not like the feeling. For the lumbar puncture he was sedated, but the pain in his back and headaches afterward were hard on him. The results of the lumbar puncture showed he had a spinal fluid pressure of 47 (normal for a child is 15).

He was taken off Vfend (the anti-fungal) and put on a diuretic called acetazolamide (Diamox).

The doctors do not know exactly why he is producing excess spinal fluid. They said prolonged steroid use, or the Prograf. They don't know exactly.

Current meds:

Prednisolone - .45 ml/twice/day
Prograf - .7ml/twice/day
Septra - 4ml/twice/day
Diamox - 7ml/twice/day
Isradipine - 1ml/twice/day
Catapress patch - 1 patch per week

Unfortunately, his skin GVHD started to flare-up after the MRI. We don't know if he is having a reaction to the anesthesia meds or if it's a real GVHD flare-up. The doctors will keep a close eye on his Prograf levels and we hope the flare-up will subside.

One more week until we leave for Italy!

Thanks for checking up on us.


Errica said...

Hi Aimee,
So I am assuming that David is out of the hospital and can travel next week? That's good. Do they think medication will reduce the swelling? Another diagnosis is the last thing he needs!! As long as he is happy and enjoying life, that's all that matters!

We love you!

Paige said...

We're keeping you guys in our prayers every day! I often pray especially for David. I can't imagine being 4 years out and still be dealing with everything that's come y'all's way. Glad y'all are getting to go to Italy! Have a great time!!!

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