Anyone experience rapid development after shunt placed in baby

[ave05]

I have daughter who is 15 months old (13 adjusted) who had an IVH and needed a temporary shunt. We thought she wasn't going to ever need a permanant one, but last week at her neuro appointment they decided to tap her shunt and though they couldn't tell if the pressure was normal or not because she was crying so hard I think it was high because later that night we had to take her to the emergency room because spinal fluid was leaking out the hole where they had tapped her shunt.
We go back on Tuesday and they are going to sedate her for the procedure. Anyway, her neuro gave us the impression that she may start hitting her milestones once the pressure is relieved if it is indeed high. Has anyone experienced this? Her cognitive and fine motor skills are fine, but she is having trouble sitting unassisted for longer than a minute. Also no crawling, pulling up, walking, etc.. Her legs have slightly higher than normal tone and her trunk is low tone. Any input would be appreciated.
Niki

[MegNJaxMom]

While our experience is a bit different, once Megs got her shunt that she still has, she TOOK OFF! It took us going through 2 infections and an ETV that failed, but we just celebrated her 2nd (WOOHOO!) shunt-a-versary and she is walking for the most part. Good luck and I hope that your neurosurgeon is right about her and she will continue to amaze you.

[LIZARD]

Hey, Niki. :)

It's very normal for the brain to "go on strike" under serious-enough pressure. It's its way of saying, "I refuse to work until you get this elephant off of me!" but once the "elephant" is "lifted," it's much easier to see fairly rapid progress in many areas where there may have been little before. Compression (even slight) of the brain makes things like balance, memory, executive skills and even conversation difficult or near-impossible. (When was the last time you said, "I can't think through this right now. I have a headache"? Same thing, essentially.) Once the pressure is off, restoration of the faculties that were supressed is common, at least partial, if not complete.

I'll caution you, though, that many of us (yeah, me too! :) ) have had issues with being unable to/slow to crawl, walking is often later (though it may be only slightly), and other issues may come up with age, such as difficulty with multitasking, attention to oral directions, oral memory recall, and visual perception, to name a few. Having said that, I'll tell you that I am just weeks away from 40 :eek:, was dx'ed at 3 weeks old, have had a small handful of surgeries since, but none--yeah, none!!--in the past 26 years. :D I am also a college grad, wife of 16 years, and mom to two awesome kids, 15 and 12. My son (12) was also dx'ed with autism at 2 1/2 and Chiari Malformation at 5 1/2. Life is crazy, but so far, I'm on top of it. :)

The best advice I have for you is to stick with us :D, read up on info from reliable sources such as the Hydrocephalus Association, www.hydroassoc.org, and watch her grow and thrive. :) Also, ask any questions you have, and keep your humor, too! It'll lighten the load. :)

Hang in, and God bless,

LIZARD :)

[AMBush]

Marijke, too, was a preemie (26 weeks). When she was about 18 months old, she was still totally dependent on an NG feeding tube, and the GI doc was taking about making it a G-button if she didn't make some pretty fast advances in feeding. Within a week, she saw the NS for her 6-month CT & exam, and the NS said she needed a revision, her ventricles were nine times larger on the current scan than they had been on the scan 6 months earlier. She had the revision within the week, and within 2 weeks of the surgery, she was no longer NG-tube dependent -- she was eating solids and using a straw.

Two years ago (when she was 10) she had 2 revisions within 3 months, and after the second she entered puberty practically overnight (no exaggeration -- we went into the hospital, she had the surgery 2 days later, within a week of the surgery we had to buy bras).

[kathleenandjoe]

Becca was shunted at 5 days so I honestly cannot say I saw much of anything that early.

BUT. . . Becca did have a bad run of shunt malfunctions and infections and failed ETVs (the other operation instead of a shunt if they are candidates - usually not IVH hydro cases though). With each of those her pressure went WAY up in her head. . . and after each surgery . . . sometimes within hours of surgery - she leaped over new milestones.

I remember about 12 hours after one surgery at about one year old. . .it was 1 am and we were walking the halls with an IV pole. She wanted to get down aand see out a window. At this point before surgery she was cruising a bit and standing holding on to things. Well as I felt the need to just stay in fetal position not even being the one who had the surgery - she stood by herself for 2 minutes unassisted. I shouted, cried. . . and then the nurses ran over and everyone cheered for her. She smiled. It was amazing.

She then walked at 15 months. I saw similar leaps after each surgery to relieve pressure. So if there is increased pressure going on - you could very well see leaps. Ask the surgeon what the opening pressure was when they started surgery. It will be accurate then because your baby will be under. If it is greater than 10 or so - you'll know a shunt was absolutely needed and pressure was an issue holding her back. If not, then keep on keeping on . .. improvements are still ahead for you.

Keep us posted. And PLEASE tell me that it is a PEDIATRIC NEUROSUGRON. . . and not a neuro. . . tapping her. If not . . . get her to a PEDS NEURO SURGEON please. I am also a bit confused about the "tempoarary shunt" - does she have one now and where/how does it work? CT and or MRI done regularly?

YOu will not likely see huge leaps in development if they are only planning ot take some fluid off at the tap. It has to be a shunt working to keep it level pressure over time.

ALSO - leaking from a tap means that infection could have gotten IN too. Do keep an eye out for infection signs (fever, irritable, sunset eyes, vommitting, white blood count) and request that they check CSF fluid for infection when they tap tues.


Hugs,
Kathleen

[AMBush]

I have daughter who is 15 months old (13 adjusted) who had an IVH and needed a temporary shunt. We thought she wasn't going to ever need a permanant one,
Niki


Had to jump in here, too. When Marijke was shunted (at 3 months old) we were told (by a NS fellow -- basically, a NS student) it was "temporary" and would likely be removed when she reached 3 years old.

Our NS was horrified that we were told that. He told me that the rule of thumb is "once a shunt, always a shunt."

For the first three years of Marijke's life we counted on the shunt coming out when she was three. The NS had no idea (until the appointment when she was three) that this had been our expectation. I walked into his office that year and asked "when will you be removing the shunt?" He hated like anything to disappoint us, I could tell, but he had to be the one to let us know that this wasn't going to happen. It was a major lesson for me in communicating with the doctor and clarifying everything.

[sammm]

im 36 was shunted at 4 weeks, your daughter seems to be doing well, from stephanie