June 29, 2011 at 9:00 am #9801
My son was diagnosed with CIDP in May. His lumbar puncture to confirm the diagnosis gave us an opening pressure of 42!!! (15 is normal). He was asyptomatic at that point, but has since had two more LPs due to headaches and blurred vision. Those 2 LPs had an opening pressure of 33 and 24 (with 2 weeks between the two and with him being on diuretic meds to keep the pressure down). One neuro in the group said the increased protein in the spinal fluid found with CIDP is causing the pressure increases, but the other neuros in the group (we are at Children’s Mercy in Kansas City, MO) don’t think the two are related. Have any of you had any increased intercranial pressures with your kiddos with CIDP?
Also, my son is wanting to commnicate with other kids with CIDP…someone he can talk with (via e-mail) that understands what he is going through. Anyone willing to swap e-mails??
ValerieJuly 15, 2011 at 10:43 pm #100375
In case anyone else actually looks at this, they think my son was suffering from chemical meningitis–a side effect of IVIG. He has been switched to prednisone. If the increased intercranial pressure comes back, we will be back to square 1 on that diagnosis. His last pressure last week in the ER was 45!!December 30, 2011 at 11:40 pm #102838
My son had a LP shunt put in about a month ago and we haven’t had any headache since. He was put on diamox in July and then titrated off of it in September and October since he wasn’t having anymore headaches (and they thought it was chemical meningitis), after being off the diamox for 9 days his headaches returned. We had 6 therapeutic spinal taps in about 8 weeks leading up to the shunt placement—no fun!! His neurologist doesn’t think he is progressing well on the oral predisone treatment, so we are seeing a rheumatologist next week, and then Taylor will be seen in March at the combined neuro/rheumatology clinic at Children’s here in Kansas City. Hopefully we will get answers, I just want my normal little boy back again!December 31, 2011 at 9:34 am #102841
I really am sorry to hear about all your son is going through – that is a lot for a little guy. I’m also sorry for you. I am an adult with CIDP. I know we have other moms on the forum, hopefully one of them will be in contact with you as I think it would be good for the children to communicate with each other. I know how difficult it is to find another adult who understands my challenges, much less a child.
I wish you total remission,January 6, 2012 at 2:44 pm #102893
My son is 7. I don’t ever remember talking with the neuro. about the pressure. His must be normal or he would have said.
Dell’s onset was about 5-8 months of age so he’s lived all his life with CIDP but he’s a little to young to type on the computer.
If your son would like to exchange photos with Dell and be a pen pal, we would love that.
Dell asks lots of questions about his disease and his body. He has kyphosis and scoliosis so his body looks different than the “normal” kids. He’s also very small for his age, the smallest in his class.
Let me know and I’ll get you our address.
LoriMay 3, 2018 at 10:36 am #114117
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?
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