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Tuesday, July 31, 2007

Details of the Aftermath

Since Ellie did not have meningitis the seizure was most likely caused by an ear infection we did not know she had. She did spike a fever the moment we entered the hospital and her white blood cells were very slightly eleveated. What this also means is that her pain tolerance is so high, a really bad ear infection did not reduce her to tears but only made her a bit grumpy. The implication for me is that I need to print out picture symbols of body parts and work hard with her on understanding pain and get her to start identifying where, exactly, it hurts. Ellie knows all her body parts but she often has head pain so if the pain is in her head, ears included, she just puts her hand on her forehead. She is usually good for only one round of where's your aowie before she gets bored and wants to "play" something else so I need to get streamlined about my process.

So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.

This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.

The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.

I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.

I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.

Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.

Can I just hold her forever and never let go - would that work - would that be enough?


Danielle said...

Ah..if love were enough...

Oh, and because I have extremely limited knowledge and get excited when I do know some minor detail, you spell it "Ativan" and the generic name would be lorazepam. Also, I am thinking you might be meaning Phosphenytoin which is the prodrug of Dilantin.

But now I have a really stupid question and don't laugh. So, do Ellie's shunts have to stay in forever? If her hydro is gone...can they be removed? See stupid question. And sleeping on the therapy table is not such a bad idea.. ;)

Laura said...

I hope you find answers for Ellie. I love coming to this blog and reading about her progress. I have always been fascinated by "twice exceptinal" (gifted and disabled) children.

Dimitra Daisy said...

It's funny that you ask... I attended a workshop on the HANDLE approach ( last weekend and it made me think of Ellie a lot. I was wondering if I should butt in and suggest it, though. And then you asked!

Our instructor even said that the founder (Judith Bluestone) has managed to stop herself from having seizures. In fact her whole story, and what she has achieved for herself, is very interesting and inspiring. Unfortunately the site is a little confusing, and so is the one book I've read, but the ideas behind the approach are really simple and brilliant, and I am convinced that they work. Do have a look, and, even though my understanding of the whole thing is little more than elementary, I promise to try and answer any questions you might have.

Stacey said...

Gosh, that's so scary. I'd be doing the same thing - I'd probably be wanting to go sleep in there too. Shoot, when Ace had a cold, I was up several times to make sure the kid was breathing and his lips weren't blue. Ugh.

Hey, I'm all for holding her forever. Right there with ya.

Now this might sound outta left field, but check out seizure dogs. Some dogs are trained to watch the highly sensitive symptoms of the onset of a seizure, and warn others when the person is having the seizure. Probably expensive, but it might save you a little worry.

medrecgal said...

And all this time the literature suggested there were no particularly untoward effects from the presence of supposedly inert silicone in the brain. I, of course, would beg to differ on that one. Hopefully they can find some way to manage the seizures to a point where Ellie regains her "normal" level of function.

Danielle: yes, usually once you have a shunt, it remains there forever unless it becomes obstructed and/or infected, even if it's not currently functioning. They don't want to mess around inside your head if they don't have to (or, as my neurosurgeon put it, "if it ain't broke, don't fix it"), and the thinking is that attempting to remove a shunt that's not causing obvious problems would likely cause more damage than it prevents. And... a lot of the time if you have hydrocephalus you become shunt-dependent, i.e., the proper pressures inside the brain are only maintained because of the shunt, and without one the hydrocephalus would recur. This isn't always true (sometimes the hydrocephalus resolves on its own over time), but it could offer more explanation for why they don't remove shunts once they're placed.

catherine said...

it's definitely worth a try, the hold her forever and never let go. i wish it were enough too.

Kathryn said...

Danielle - thank you so much for the proper names of those meds. Now I can look them up and be more horrified, er I mean, make sense of the after effects on Ellie's body. ;-)

It's true what Medrecgal is saying. The thing about the silicon pieces is that they are these little thin tubes that have a ton of holes in them for the CSF to pass through. Unfortunately in terms of removal of them (and trust me I have gone down that path - especially with the one slicing through the middle of her brain I so wish we could remove it) it creates problems because brain tissue tends to grow into those little holes. So if you remove them, it tears brain tissue. And brain surgery is brain surgery with many, many risks despite the way it approached on TV. I am a Grays fan and there she is drilling holes in the guys head in the tunnel. So unrealistic. I know you know that too - it just made me think of it. But, yes shunt removal is tricky dangerous business.

I also don't think they last forever. Ellie's neurosurgeon told us 10 years.

Lastly, in Ellie's case - she has acquired hydrocephalus. She did not have it when she was born. Hers is due to the bleed that filled most of her ventricles. After the blood got absorbed by the body anywhere it touched the brain that tissue scarred over. Those scars are now where the foremen of monroe (please correct me on the spelling here too if you know off the top because I am too lazy to go pull out the Volpe text I have that explains it) anyway - those little channels that normally act as conduits to let the csf out are now scar tissue. And currently there is no way known to regnerate them other than maybe someday stem cell therapy.

So Ellie basically has scarring all around her ventricles where there should be little ducts to let the csf out therefore she needs the shunts to survive.

Tough business all round.

Kathryn said...

Dimitra Daisy - I will check it out. I am open to everything at the moment! Thanks for answering my question. I am very open to butter inners in general for future reference! ;-)

Laura- thanks!

Stacey - Thanks! I will look into it. I was just thinking about disability dogs this morning - so funny that you wrote about it - definitely something to explore. I have read about them knowing about seizures and also supporting people with cp in other ways. It would be so nice to have a pet as well. You never know what insurance will cover.

Catherine - try and try again right. :)

Anonymous said...

Ohh, if there were easy answers. It hurts so seeing your baby hurt. I don't have any therapeutic ideas, but have heard very positive things about seizure alert dogs. A great story from the UK a few months back about a young lady's life profoundly altered with a seizure dog. Also, I don't think you pay for them - they are a gift to those who need them.
Try to take care of yourself, too.

Penny L. Richards said...

Okay, now that you're home, I can tell you this story: my son (who has seizures and micro and a good long list of other neurological red flags on his charts) had a dental surgery under general anesthesia--not his first, by a long shot, and we knew the anesthesiologist on the case, and everything seemed to go well, except... except Jake wouldn't wake up, and when his eyelids fluttered, I saw that his pupils didn't match. I finally got someone else to see the mismatch, and we were whisked to an emergency CT.

After the CT, I sat terrified (you know the feeling, I realize), until Jake's pediatrician came to the bedside. She took one look at him and said "This isn't neurological." Sure enough, it wasn't--best we could tell, some particles of anesthetic spray had fallen into one of Jake's eyes, causing the mismatch in response to light.

AAARGH! On the one hand, huge relief, of course; but on the other hand--the adrenalin of those hours was a stress I definitely didn't need.

Christina said...

There is a Dr I know of here in CA who does a surgery that means some kids no longer need a shunt. I have no idea if Ellie would be a candidate, given what you wrote above about her condition, and there is no guaranteed success rate with it- I'm just throwing this out there as an option to think about. I am sure there are other neurosurgeons around the country who do similar surgeries, but I know Dr Muhonen is very highly respected, and an expert in the field.

Here's an article about a child who had the procedure: (it's a fluff piece but it tells a little bit about it):

This is the Dr:

Just something to think about...not that you didn't have enough already to ponder!... I'll pray you find the right answers for Ellie.

Emma said...

I had Reiki a few times earlier in the year for no other reason than one of my friends learnt to do it and needed a practice guinea pig.

I found it really relaxing and also found that my legs (which were stuck out in spasm) visibly relaxed quickly and stayed relaxed for a day or two after. I also found it reduced some of my pain too. So I don't know if it would help Ellie but thought it might be worth sharing.

medrecgal said...


It's foramen of Monro--actually there are two of them--connecting the lateral ventricles with the third. And yes, scarring of these foramina after IVH or meningitis is a common reason for requiring shunting, because once they're scarred over, they never open again. These channels are tiny; I saw them firsthand in dissecting a brain during a human anatomy & physiology course in college, which was an easy exercise for someone who came to know the ventricles really well thanks to curiosity and a ton of stories from my neurosurgeon!

Kathryn said...

Thanks everyone - I am going to look into these leads!

Emma - so many questions about the Reiki- it has helped Ellie in the past tremendously in the NICU.

That is great it helped you with the pain and spasms. How often do you get it? Is the effect long lasting or do you think it would be something to have daily. I have wanted to learn Reiki for a long time. Ellie's PT did it on her in the NICU and it would stop a desat in no seconds flat. It's amazing stuff.

Something has to give all this medical stuff is taking it's toll. I am ready to go off the ranch at this point.

Penny - sheesh! Did you nearly have a heart attack! I am glad he was ok.

Christina - I will follow those links. Definitely worth checking out.

Emma said...

I've actually only managed to have Reiki about three times, maybe four because we are both so busy and she only learnt a few months ago. I must talk to her about trying to set up to do it more often or find someone I can set up a proper arrangement with. At one point I had a few a week or so apart and that was great. Part of me wondered a bit if the effect of it was psychological/psychosomatic (because of the candles and the oil and the relaxing music we have on) but I guess not if it obviously worked on Ellie in the NICU.

The other thing I've found is certain ways that I can stop a spasm or relax tense and painful body parts. I think spasms aren't an issue for Ellie though?

girlfriday said...

We have arranged for acupuncture for our son Dustin numerous times and he does seem to think it helps his irritated brain. Dustin has brain injury from a birth defect that left him with a cystic area and small brain. Cysts have resolved , brain pain remains.
THe acupuncture would leave him very relaxed. One fellow even made him some teas for brain pain. Can't remember how that worked but it was in the category of "it can't hurt to try!" Ellie will metabolize the chemicals out of her over the next couple of days and you will see improvment as this happens. I feel your fear level and it is really understandable.
Dustin also like cranial sacral massage. very comforting.

msiagirl said...

hey hon, been away this weekend. Breaks my heart to read your post, wish you could hold her and take away the pain too. I also think all the chemicals will come out over the next few days. She really needed them to get by. Hope you can get some rest and set up a bed to sleep in her room until you feel it's OK. Keep asking, ya? Love lots and hugs all. xoxo

Angela said...

Oh no. I am so sorry to read about Ellie's seizure. I hope she's feeling better and remains seizure free for a long, long, long time.

I will tell you Jack's been in our bed ever since we had to call 911. Is it the right thing to do? I dunno...but it feels really, really good to know he's okay in the middle of the night and not having a seizure.

(((hugs))) and love to you guys!

Karen said...

You haven't posted in weeks, I really hope you and your daughter are okay. I'm thinking of you.

Danielle said...

Yes, I am getting concerned too...What's up, Kathryn?

Lisa said...

Also wondering and hoping all is okay...

Anonymous said...

Hi- I posted about energy healing and wanted to let you know that I saw Nicole today. She knows someone in New Hampshire who organizes all the healing seminars in the area and she is going to email her and get a name for you that best fits the situation (I didn't say you or your child's names but did explain the issues as they are presented on your blog).

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