The neurosurgeon drained a lot of fluid to drop it to a normal range.

In the past when they had LPs, they would get a really, really bad spinal headache. They would be in bed for a week or more.

The spinal headache usually starts 24-48 hours after the tap. They haven't gotten the spinal headache so far, but it could still develop.

It's too early to tell how much the tap reduced their headaches. LPs are the only thing that reduced their headaches in the past.

I'll be thinking of all of you!

--Annie

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Hope they don't get the headaches, and that this will help them again.

Those are some HIGH opening pressures!

Even if they get the spinal headache, and I pray they don't, I hope the relief from the lumbar puncture will be a blessing for them.

When my headaches were at their worst last month, I actually joked with my neuro (this is RARE) about doing another lumbar puncture because it helped me so much -- several weeeks of complete relief from headaches.

Hope your boys get a much needed rest.

Michelle

Has the MD given you any idea of the cause or mechanism of this fluid?

You've probably read about my daughter's experience. Her LP a few years ago was normal, apparently, so I am still a little mystified.

It turns out that her headache was fluid-related though, and the flulid was causing a pulsing bulge on top of her head, which was discovered by the school nurse.

I am still not clear if my child's fluid is outside the brain or if it is spinal fluid.

After all the meds that MD's have thrown at our children, it is interesting that all of them benefit from fluid reduction- your sons by the LP and my daughter by eliminating foods from her diet.

She lost 14 pounds in a few days when she went on the elmination diet...swelling went down on her head and all over and she began to pee normally.

Her headache greatly lessened. She'd had it continuously since 1/6/03.

For her, this is linked to leaky gut, which resulted from antibiotics combined with her diabetes. The leaky gut causes reactions to foods, meds, toxins etc. Ironically, some fo the headache meds (like SSRI's) seem to have increased the problem.

I know that Lyme can cause pseudo-tumor cerebrii..has anyone used that term for your boys?

For how long can they expect relief?

I wonder if "fluid retention" can affect spinal fluid volume? If so, would dietary changes help your kids? Have they had any yeast issues or GI problems?

They were diagnosed with pseudo-tumor cerebri in 2001 or 2002. Their old neurologist was convinced intracranial pressure wasn't the cause of their headaches and would only do 1 LP.

They are now seeing a neurosurgeon. If the pressure doesn't stay down with LPs, he is considering using a shunt. He has diagnosed them with a variant of PTC. They do not have the eye problems you usually have with PTC.

Jake's last LP was in March. His headache was a 10+ (on a 1-10 scale) and it was a 6 after the LP for 2 weeks. The headache has gotten increasingly worse.

Jordan's last LP was in February. His headache was a 10+ and a 6 after the LP. His headache has stayed at a 6.

Both are still sleeping which I think is a good sign. I did their IVs at 7:45 and they slept through the IV. Jake's 1st words in the morning are usually ``I need pain meds''.

I'll keep everyone updated on their progress.