Reply To: CIDP in 9 yr old and pseudotumor cerebri

Hi Valerie,
I don’t know if you still are on the GBS/CIDP forums but I have a child who had a headache and high opening pressure and critical protein in CSF before her first round of IVIG, after getting her first round of IVIG the headache became intolerable and she was diagnosed with pseudotumor cerebri/intracranial hypertension/papilledema…

So the long and short of it is I think she had intracranial hypertension that was undiagnosed before her first round of IVIG (because no one took a really good look in her eyes before her first round of IVIG after which we had to take her to the ER and the ER physician finally gave her eyes a good exam and had a neuro ophthamalogist brought onto her treatment team )…

Each round of IVIG seems to exacerbate her intracranial hypertension at first but then after a few days it actually lessens her headache compared with the constant headache she had for 10 months before she was diagnosed…

So IVIG for her has been like a step backward and then two steps forward…

I can hear in your posts your agony and I know what it is to be in your shoes to have a child who needs IVIG for CIDP, but who suffers brain swelling as a side effect which leaves a mother wondering if the IVIG is doing more harm than good…do we risk our child going blind or going paralyzed?

Our daughter had autonomic CIDP also which gave her low blood pressure, tachycardia and gut paralysis so we knew she couldn’t live with out the IVIG even though almost everything one reads says CIDP is not fatal…I beg to differ…our daughter was below the 1% in weight by the time of her diagnosis and she just was not going to make it if something was not done for her…

With the exacerbation of her pressure with each round of IVIG I had asked about plasmapheresis as being an option but her neurologists seem fearful of plasmapheresis for a child

I was wondering if there were things you learned with your son that you might be wiling to share with me, since you are the only mom I’ve found whose child had pseudotumor cerebri with CIDP?