Pseudotumor cerebri in 10 year old

[lil sunshine]

My 10 year old daughter has a possible diagnosis of PTC due to enlarged ventricles and daily headaches.We are going for a 2nd opinion as the 1st Ped Neuro dr would only prescribe a medication, Pamelor and then when that didn't work wanted to switch her to Neurontin without seeing her for 6 months.
She suffers from daily headches,for at least 4yrs now. She also started puberty at 7 yrs and is at Tanner 4 now. 5'2" and 97lbs with head circumference of 54.5 cm.
The civilian neuro dr we took her to asked why a spinal tap hadn't been done yet. Apparently that is how to diagnose PTC and measure the pressure? She also said that my daughter could just be a person who will suffer from daily chronic headaches. I find this hard to accept that my child will have to live with H/A for the rest of her life.
Except for the abnormal Ct and MRI her blood tests have all come back normal, thyroid, lyme and RA factor.ANA also neg for lupus but APS came back slightly positive{as does mine}. I do have Hashimotos and being checked for possible MS as I have brain lesions with no known cause and my family has a varied history of autoimmune diseases. No lesions on brain MRI just the ventricle and spinal fluid problem.
Her teacher noticed that she tends to zone out and has a glazed look over her eyes. No EEG yet, but I suffer from partial complex seizures. I have noticed the zoning out but thought it to be more ADHD like than seizures. She has a visual fields test tomorrow as well.
Should my daughter have a spinal tap? I hate to put her thru this if it's not needed.
Thank you,
Bonnie

[CCF-Neuro-M.D.-CS]

To diagnose pseudotumor cerebri she should have a neuroophthamology examination to evaluate for papilledema. I agree with the visual field testing as well. After this is completed a spinal tap would be recommended. The reason to perform the spinal tap is to document an elevated spinal pressure. This is the only way to test this. Also, at the time they perform the spinal tap then can remove fluid, and this should make the headache better. If she has pseudotumor then treatment with Diamox would be recommended. This is a medication desgined to decrease the amount of fluid in the brain.

Regarding the staring spells, these could be normal child behaviour, can be associated with attention deficit disorders, and can be seizures. If you are concerned about this, then bring it to the attention of your neurologist. Good luck.

[The Crusader]

EPIDURAL SPINE INJECTIONS

Don't play with the spine unless absolutely necessary!  There are new studies that link severe chronic pain syndromes with complications of this non FDA approved procedure. (Arachnoiditis)  Using the Freedom of Information act, we have discovered that there have been well over 15,000 adverse event reports and 356 deaths attributed to Depo-Medrol between 1998 and 2002.  (A very high number despite that fact that only 1.5% of all adverse events get reported to the FDA!)

Pfizer Inc. recently purchased Pharmacia/Upjohn, the manufacturer of the most commonly used injectable steroid, Depo-Medrol!  They have recently issued a new WARNING on the use of this non-FDA approved drug for epidural administration.  They say that Depo-Medrol is "NO LONGER RECOMMENDED" for epidural administration in a newly published Pfizer document titled: "Depo-Medrol / Reformulation-Epidural Use"  The warning covers BOTH formulations!  (Another misconception is that Pfizer makes a preservative-free formulation of the drug, which supposedly is safer in the opinion of the doctors who use it!  These doctors are not only wrong about this, it's downright incompetent!

Both formulations, the single dose and the multi-dose formulation, have preservatives added, MGPC and Benzyl Alcohol respectively... both are neurotoxic and potentially damaging to nerves.  Besides, both formulations contain huge amounts of Polyethylene Glycol, a chemical cousin of automobile antifreeze and a major ingredient in DOT-3 Brake Fluid!  If this isn't bad enough, they then mix Depo-Medrol with other chemicals, such as anesthetics, like Marcaine, and ionic dyes, such as Isovue, AGAINST THE RECOMMENDATION OF PFIZER AGAIN!  PFIZER CLAIMS THAT THIS PRACTICE CAN INCREASE THE TOXIC RISKS BECAUSE OF CHEMICAL INCOMPATIBILITIES, THEREFORE THEY HAVE WARNED DOCTORS NOT TO DO IT!

Any doctor that may be reading this should call Pfizer immediately and ask for a written copy of their newly posted Warning.

All patients should be advised that they will not be told this information unless they specifically ask their doctors for it.  Even then, there is no guarantee that their doctor will even know this latest update.

Kindest regards,
Dennis J. Capolongo / EDNC
Center for Pharmaceutical Safety
Washington, DC

[lil sunshine]

I should also state that I posted a question under NF1 for 10 yr old.
Thanks,
Bonnie

[lil sunshine]

Hi Dr,
Thanks for the reply!
We saw the Ped Neurologist and Mary also had VFTest on same day. She failed the VFtest and it shows periphial deficits. The camera showed her eye constantly "roving".It was very upsetting as she realized that she had a vision problem.
The Dr put her on Diaomax and we see him again on mar 30th. We will discuss spinal tap then.I would prefer to not put her through this if it's not needed.
I am concerned though about the PTC diagnosis. I researched on Internet and it says that usually PTC has normal CT and MRI s. Is this always the case?
Mary goes for new Opthomology appt on 29th as dr couldn't see something pulsing in eyes. Also to check for lisch nodules for undiagnosed NF1, still only skin findings.
Thank you,
Bonnie