Derailed

My plan was to work on my literature review from the moment Dave and Ellie left for school until I have to pick Ellie up and then come home and work again because I have some help looking after Ellie after school.

Actual events of the day: Ellie wakes up, can't eat, pale, dark circles. Migraine, accompanied by vomit, pain, restless tossing and turning attempts to sleep. My role, administer love, care, meds, and relief. Relief also means holding onto the pressure points on her feet for long, long stretches to relieve the constant tremors in her legs and feet (pain/stress induced muscle spasms).

And so it goes. Am trying hard not to get too cynical about ever finishing my dissertation within the tiny window of reprieve that will only exist between today and May 11. ;-(

Migraines and Ceiling Tracks

Ellie was up all night with a migraine that was manifesting as massive clonus in both of her feet and a bad headache. Imagine having a foot cramp so bad that your foot vibrated like electricity was running through it and there was jack you could do to stop it. I spent the night holding my 7 year old on my lap and reaching at the awkward angle required to touch the tone inhibiting points in her feet that Ellie's PT showed me. It worked but I had to keep her foot in the hold for minutes to keep the clonus at bay. Every time I would release the clonus would come back. Clonus does feel like electricity because it is. It's a result of the neurons firing but ending up in a loop that does not go back to the brain but gets stuck in the spinal column so there is not shut off valve for the muscles to stop contracting. It's funny, you would think that brain injury would shut things off, and maybe it does in some cases, but in Ellie's, and anyone with high tone, it turns things on and keeps them on.

AND I was out of Motrin. Tylenol seems to do little for Ellie's migraines, though I gave her some anyway. That is how I spent the wee hours between 2 and 5 am last night, finally going in to wake Dave up for shift change. Ellie was up again at 7:45am. She wanted to sleep on me. Sometimes it's the only thing that calms her and I sit up and hold her on my lap as she buries her face in my shoulder. I love holding her and am glad it is soothing to her. The clonus is much less but my lower back suffers as it gets compressed under her weight which after hours of this has got to be 40 pounds.

When I was 21 I backpacked around Europe and my pack weighed 40 pounds and Ellie feels about the same. That's pretty heavy when it's just solid weight on you, like a 40 pound back pack resting on your stomach and thighs for hours...

Ellie has been up and tossing and turning and complaining all morning. I gave her some coconut milk and tried to get her to eat but it's a no go. Dave went out and got some store brand motrin (because the name brand has been recalled because of dosing issues - great - another thing to worry about) and we are waiting for that to kick in. I really wish I knew the trigger. It's hard to pin point. We did take her out for ice cream and she had some vanilla yogurt and she had chicken soup last night for the first time... We are going to give her Zofran now to stop the nausea so she can eat. Did I mention how much I hate these migraines?

Dave and I also finally came to some conclusions about the accessibility of our house and what to do. We were considering a stair lift so that Ellie could keep her upstairs bedroom but decided in the end to build out our back covered patio. It'll be as big as her bedroom now but a better layout actually. With her room there, we can put in a ceiling track and Ellie will have access to the whole first floor which will also have the accessible shower. I will not miss carrying her up and down the stairs. The room will have big windows and face out toward our rock garden and back hill, which is wild now but will have to be tamed. And if there is ever an emergency it will be much safer, faster, and easier to get her out of the house. It's nice to finally decide. The weight issue of this whole situation is number 3 behind death and lack of sleep. I have worried about it so much. But with things like ceiling tracks, it may be manageable. Ceiling tracks and back boot camp stretching and weight lifting. Taking care of yourself is important anyway for anyone, but seems to make all the difference in my situation thought not fool proof as the pain I am feeling now is evidence.

It's so hard to know what to do. Our house is this living constantly morphing thing.

I don't think we will make it to T-ball today. Oh, and Google's spell check, should know how to spell clonus!

March of Dimes, Casting, G-Tube, Migraines

This year we are finally walking for the March of Dimes on May 8. I wanted our name to be Team Ellie but that was taken. So we are team "Warrior Princess". It's such a good cause. I am glad to be participating and feeling like we have the space in our life and the health to do so. If you are interested in joining us for the walk you can sign up on our site and we will see you there!

Serial Casting Update: Not so good
Ellie got through her first cast after one week of no sleep and with a cut/dent on her left ankle. This cut turned into a crater when the donut that they put to protect it in the second casts slipped. She made it through 4 days. The wound is still not healed. The gains she made - because it is clear that serial casting does work - are slipping away on that side. Her feet are becoming clubbed. It's upsetting. Ellie knows how to walk. She deserves feet that will hold her up. It's frustrating. We are reconsidering trying Botox one side at a time to see if the systemic reaction we got last time was a fluke. That may sound crazy, but check out these alternatives:

Phenol Block. Phenol in 1% of people it causes life long pins and needles at the block site....no thanks.

Baclofen: this relaxes tone systemically. Good bye head and trunk control.

Bacolfen pump inserted into the spine - forever. This delivers Baclofen to the nerves in the legs only but is 3+ inches in diameter and is a permanent implant....God that bums me out. It can still cause systemic side effects like fatigue....

Rhizotomies - where they cut the nerves that are effecting the muscles most. This works great for kids who are already walking because they can isolate the nerves most effected and the kid's brain is already wired up to walk, the muscles are there, etc. In kids that are not yet walking there is a good chance they never will with this treatment because what nerves do you cut? Which ones are the ones Ellie's body will self select to support her walking? Since it is in no way clear to me that she will not walk, this is a no go.

Her spine is ever so slightly curved too. I told the doctor that we had been doing less tummy time. I think he sensed my guilt. He was quick to point out that Ellie's tone on one side is much higher (her right side) and her left is weaker. He said it was the tone (the nerve signals flexing the muscles constantly) that is causing the spinal curve. He also said it is very hard to work the muscles on only one side of the body but that, that would help.

Her hip is the same amount effaced which is good because it didn't get any worse.

Other things we can try that there is no research to support they help or hurt:

Conductive Education

and

Feldenkrais

and

Hippotherapy

and

Start up again with TST

and

Hyperbaric O2 treatments

If we win the lotto I can quit my job to not only afford all of this but to get her there too...

Other things on the docket:

Dentist Visit: her first baby tooth is gone and I am not sure where...it's sad. There was nothing for the tooth fairy. I worry about how many teeth she can swallow...will those little baby teeth hurt her intestines? Then there is the obvious fear of her chocking on them.

G-tube revision: The good news is that she has gained back the weight she lost since September (can you imaging it taking that long to gain weight!) but now that she has, her g-tube is rubbing again and causing her pain.

Migraines: still a problem each month or sometimes every other month.

Adaptive Equipment needed: Potty seat, roll in shower for said Potty seat, hospital bed, stair lift, wheel chair van. Lovely things on our horizon that take months to get if they are covered under insurance and only half of them are.

It's a sea of medical issues and concerns in the murky land of brain injury recovery.

Let me tell you some good things too. She is eating up a storm and making progress on chewing soft things like banana. She is sipping slightly thickened liquids from a nosey cup! AND she is way, way into feeding herself! This is HUGE great news.

She is having success in Potty Training, we don't have a seat at home she can use which sucks and is the only thing holding her progress back.

School is going very well. She is being assessed for voice output devices FINALLY. I could sing! I can't wait till she shares with me any thought in her head that I don't have to muddy with my own interpretation! Right now I understand her much of the time, but sometimes she is communicating and I have to ask her questions to try to understand. Sometimes I ask her a question and in doing so influence her communication - that is what I mean by muddying.

Her fine motor is improving fast. And she is growing, growing, growing. She thinks it's funny when I tell her "Shhhhhhh let me listen to you grow!" And then I lean close and listen. She is way into They Might Be Giants which is the most age appropriate new thing she is into and what balm and relief from Signing Time and Baby Einstein! (No offense - but 7 years of those daily is a Looooooonnnnnnnngggggg time!).

She is maturing in her wants and needs. Her expressive language has taken a real leap forward increasing the need to give her better access to language. This is my favorite current problem to have. Also, as reported, the iPhone is still in favor and she is getting good at flipping between screens and tapping to make a video play. In the second picture up above, that is me and Ellie watching TMBG videos on the iPhone while taking advantage of a rare and lovely 65 degree day in the park.

Ellie is still such a sweetie who loves to laugh and laugh with you and include you in the fun. She is also, hands down, the cutest 7 year old I know. (not that I am biased). ;-)

I hope and think, when she is not in pain, she's a happy kid. Not as happy as she was last summer, because of all the pain on so many fronts right now, but hopefully we can stay on top of it and figure out how to move through this part of the story and get to a place where she is not in so much constant physical pain.

Illigitemus non carborundum est

Ellie is in the midst of another migraine. The bad kind - where you puke and then are just in agony or are in agony first...etc. She woke up at 4:30am last night rigid in pain. Her feet had such violent clonis (tremors) that I couldn't get it to stop. The Tylenol did nothing but the Motrin did. For the first time I gave her Zofran after she couldn't keep her rice milk down. I was in Mama Warrior mode. Ellie has just gained back the 6 pounds she lost and I was like, "I am NOT going down like that." And whipped out the Zofran which I am now a fan of (it's an anit-nausea med). Twenty minutes after receiving it she asked for applesauce. Though she ate very little, she kept it down and was able to eat after a couple of hours and keep it down. No more abdominal migraine weight loss at least.

Her temp has been struggling not to climb so I am on Tylenol/Motrin watch all night. Her timing is perfect as Dave is away on business. Sigh.

I wish I knew what the trigger was. There are triggers for migraines right? Maybe I am just looking for some mythical point of control.

Last week was school vacation and Ellie had a blast and slept well. It was low key but great to get to have so much time with her during the day in our sunny home. Her latest obsession is the iPhone. I taught her to sign i phone and it's the first thing she wants in the morning and last thing at night. We make videos and take pictures of her toys. We take videos of people she loves doing fun things they do with her to make her laugh. So what's not to like? It's a good bargaining chip too to get her to do other things, like her math homework!

She is also into They Might Be Giants. That's right TMBG for all of you who were fans of them in the 80's they now do kids music. Ellie's favorite and only TMBG cd is "Here come the ABC's". She is also obsessed with this which is a very welcome change to Signing Time and Baby Einstein - not that those are totally out - but very much in the shade. Yay.

Warning, parental side effects include: incessant humming of Flying V's and "F is for fun!" and wanting to "Go, go, go for G!". The tunes are very catchy. If you don't believe me, check it out here.

It's really nice to see her enjoying two new things that are less baby-like. Her interests are beyond what her motor control will let her do so she still plays with toys she has had for 5 years in some cases. They comfort her and the way she plays with them changes...but still. I am hoping that the iPad will one day include a camera. It's the perfect size for Ellie. At least it looks like it is. The iPhone is great but a little on the small side for viewing. I am wondering if she has gotten eye strain from it and that is what caused this latest migraine episode.

Also, to those of you out there saying they iPad is for grandmas, I have a few comments.

1. Get your head out of your butt and realize that saying that is derogatory to women.

2. It's a truly amazing piece of equipment. For proof go here (warning - you may be convinced and you may laugh because this guy is hilarious).

3. Apple are one of the only big computer companies working actively (have a designated team) on assistive technology for the disabled. I support that and so should you! Assistive technology is the access point to the world for Ellie and other's with similar issues.

Abdominal Migraines and Santa

It might be that the Periactin is working. Maybe. Ellie has had a slightly elevated temp on and off for the last three days. It has ranged from 99.4 to 100.6. She has not vomited. She was given motrin and she is not totally herself in that she has been tired and has dark circles under her eyes and is very pale. I need to get a script for an oximeter because I want to know better how much pain she is in. My rational is that if her heart rate is elevated then she probably has some pain. Also, she is pale. One time when she had a seizure she was pale but flushed at the same time and the O2 saturation in her blood as taken by the EMTs was 78. So, I kinda want to know how she is doing when this is going on. It's hard though. Instead of a week between not it's a couple of days. If this becomes everyday that is an untenable situation.

Picture description: Ellie at her school's jubilee. She signed "I love you" to Santa.

Update

Ellie's migraine lasted for about 8-10 hours. She didn't vomit this time and I kept giving her all her food so that on top of a sore head, she was not also hungry or dehydrated. It's hard to say because she, sadly, has a very high pain tolerance. I gave her Tylenol and Motrin and she went to sleep that evening and slept through (that was Monday). Tuesday we were getting buckets of snow so she stayed home, which was good so I could watch her. Though she looked tired she played all day and was in good spirits. She had a low grade temp on Tuesday morning as well which goes along with what we are learning about abdominal migraines. I think she was in a little pain still on Tuesday. However, it is clear to me now that migraines mess with, you guessed it, her sleep cycles. She fell asleep on Tuesday around 9pm. She woke up a couple of times in the night and was still tired the next day. On Wednesday she was up until 9pm and then again at midnight and was not easily persuaded back to sleep and tossed and turned. At 4am on Thursday she was UP. And I mean wide awake and wanting to play and sign and any suggestion of going back to sleep was met with a howl. She also told me she was hungry and the aowie in her head was gone.

I brought her down stairs and gave her breakfast and we played until it was time to got to school. I was expecting a call around noon saying she was crashing and to come and get her. No such call. I picked her up at 3pm and her teachers reported she was in good form, totally engaged all day and not wanting to nap at all. She finally got sleepy around 8:30pm Thursday night and slept through.

Migraines, yet another thing to learn about.

The Why question is still on the table. Root causes the doctors are saying are anything from cyclical vomiting, abdominal migraines, to deep brain seizures.

What they are not considering, at least verbally to us, is the withdrawal issue. Withdrawal from Protonix and Depakote, which is still not off the table in my mind. They in fact are saying if Ellie's symptoms are bad to put her back on the Depakote, which for many reasons discussed in prior posts I don't want to do.

If this is hereditary migraines, thanks to my side, then we have to treat them with the Periactin and pain killers. If this is withdrawal, hopefully they will end as soon as her liver has a chance to process all the toxins.

Neurology is difficult because there is so much they don't know about the brain. I am glad that this time Ellie's symptoms were less severe, no vomiting or nausea that I could tell, and a shorter time of head pain (either that or she is getting used to it - which really upsets me).

The question is, what is acceptable in terms of her symptoms? And this time instead of being a week in between symptoms, there was only a few days. What if she starts having these episodes every few days? What if, what if, what if? I have more what ifs and whys than I have answers. I wonder if it the answer is staring me in the face and I just can't see it. I want to see it, I want to do what is right for Ellie. I don't want her to be in pain. What am I missing?

**picture description: Ellie laughing in her tent this summer in Carmel-by-the-Sea

Migraines Suck.

After 2 great days at school, Ellie is down for the count again. She was having her dinner and very suddenly went into pain. She was rubbing the back of her head and in fact the whole right side of her head and started to cry. Then she wanted just to bury her face in Marla's shoulder (Marla is a PCA extrodinaire). Then Ellie spiked a fever of 101.1. After a dose of Tylenol the fever went down to 99.7 but she was still in pain. After 2 hours I gave her some Motrin as well. I gave her some homeopathic stuff to no avail inbetween. Right now she is sitting in a darkened room alternating between crying out in pain and trying to rest. She hasn't vomited up her dinner.

This is hard, for the record, very hard. Hard to see her in pain. Hard because Tylenol and Motrin seem to have no effect. Hard because she was doing so very well and having such a great day. Hard because it looks like she will miss out on a very cool field trip to a 4D version of the Polar Express. Hard because when she screams it drives out all other thoughts from my brain.

Hard because she has experienced so much physical pain in her life already. Who do we call "uncle" to? Who? I am calling, "uncle, uncle, uncle!"

Migraines Suck.

Home Again

Ellie came home last night. We did get the MRI. They tried it with her awake. There is the quickie MRI like I mentioned. Ellie didn't like it one bit and ended up getting upset even with Mama in there with her. They had to put a cage like contraption over her face. I don't blame her for hating it. But they managed to get a few images of her ventricles that will establish a baseline for this new imaging going forward so we can avoid CT scans. The good news is that there was no change in her ventricles. Dr. Gumnerova is out of town so the neurosurgery team and Ellie's amazing pediatrician did not want to tap the shunt. Ellie's shunt system is so complicated that it's like balancing a dime. No one wants to mess with it.

The other thing was that instead of being lethargic, in pain, sleepy, and nauseous for 2 - 3 days Ellie felt better after 12 hours. I am not sure this was the fact that they gave her Zofran or IV hydration and electrolytes or that the Periactin was kicking in. Ellie's pediatrician in the Thanksgiving week had time to reconsider the Diamox trial and that is off the table - thankfully.

After all that we came home last night late with a script for Zofran (anti-nausea) to give Ellie at the onset of any symptoms and a whole list of follow up appointments to make: New neurologist who is a clinician versus a researcher and who runs a headache clinic - yay for engaged neurologists as it has been a long time since we have had one, GI doc check in on the weight loss, GI surgeon rescheduled appointment to see if Ellie's G-tube site needs to be closed and a new one put in, checkin with Dr. Gumnerova, follow up with pedi. Lots of calls to make and scheduling. Did I mention I could really use an administrative assistant?

It's a lot to manage.

Her pediatrician also convinced me to give Ellie the non-live version of the H1N1 vaccination. I thought I would come clean with that. We had been holding off with NO intention of giving it to her. He made a good case for her getting it though. And she has lost so much weight and her reserves are so low, and Dr. C, who is NOT inclined towards sensationalism in any direction said that 400 children have died this year of it already. He thought the consequences for Ellie would be "devastating". Dave and I discussed it and chose what we assessed to be the lesser of two evils. The child in me is complaining, "I don't like the Two Evils game!" and I have to agree. I know for a fact that I would like even less to lose my little one, my sweet girl. This is in no way advice or recommendation to anyone reading this regarding H1N1 vaccinations. We have been giving her vaccinations slowly over 7 years. She still has not had pertussis. We are very cautious about them and have given her more than we would have, had she not been in a train wreck at birth and so compromised.

The advice I would give ALL parents is to think for yourself. The doctors are "practicing" medicine. They are troubleshooting with a flashlight fueled by the power of their huge education, experience and knowledge. You as a parent are troubleshooting with a flashlight fueled by your HUGE daily observational data of your child combined with intuition and love (doctors, like Dr. Cloherty, add love to their flashlight too).

The fact of the matter is, that the best treatments and courses of action can only be found through a collaboration of these two lights.

Ellie went to school today after receiving her full breakfast without one burp. She looks pale and has dark circles under her eyes. She is very thin. I sent her in with all kinds of bulked up food with gracious amounts of organic real maple syrup as well as green food supplements. Dr. Cloherty, who is the best pediatrician anyone could ever have, said, "Let her go to school and take off the kid gloves with feeding her. She needs to live her life." He's right. If she has to be so restricted in her activities - it's more data and more cause for tests and exploration. But until then we need to get back to our normal.

***Image description: Ellie at her 7th birthday party opening gifts with Mama. This is a Tinker Bell toy that says a great many phrases and lights up as a lantern. Ellie's favorite is when Tinker Bell says, "Hi little Tinker!" Very perky indeed.

Day 2

Dave stayed with Ellie last night after she was admitted at 11pm. We are in a single private room under "precautions" because of Ellie's fever which seems to have subsided for the moment. It's definitely nice to have our own space and it's south facing. We expected to have the MRI this morning, but because of the fact that Children's has limited number of machines (still trying to assess the exact number) and limited hours of operation....Ellie is in a long line of pre-op brain tumor patients. No argument there, I agree with that prioritization. But it means that we are here until tomorrow. I spoke with Ellie's wonderful pediatrician, Dr. Cloherty, just now. He thinks it's her shunt malfunctioning and discussed all the options with me. There are the considerations at hand (this kind of thinking is very like the logic "if/then" trees I did in my undergrad philosophy courses):

IF the MRI shows enlarged ventricles, THEN shunt revision brain surgery. The good news is the Dr. Gumnerova, superwoman and neurosurgeon all in one, is in town. That said, I hate brain surgery. We have lived through so many of them with our little miss and they terrify me, even with superwoman at the helm.

IF the MRI shows no change (it could still be the shunt, because someone with Ellie's level of brain trauma and brain atrophy, it takes a lot of pressure to expand the ventricles) THEN Dr. Cloherty will ask Dr. Gumnerova to tap the shunt. In doing that she would flush the shunt which can get it working optimally and/or will show it is definitely not working...

IF Dr. Gumnerova refuses to do that, we THEN continue down the Migraine route with the Periactin

OR

Try Periactin and a small dose of Depakote - the logic there being to try to go back to the medication balance Ellie had this summer before these episodes began. IF that works (the two meds together) we THEN go for a month or two and IF she is symptom free we THEN pull one of the meds to figure out which one it was that was working...

He again, speaking for all the GI doctors in the world (not really, but it feels that way) suggested we reconsider doing a fundoplication, which he said could get her off all the reflux meds and ensure that she keep down her food. I have written extensively about the fundo...but seeing her lose all this weight and the effect all these meds have on her, I am once again looking for the lesser of two evils. That might be another new name for my blog "Ryn Tales: Looking for the lesser of two evils".

Here we are, waiting and watching and thinking in IF/THEN scenarios. Through it all my dear Ellie continues to shine brightly with a light from within that sustains us all.

***Image description: Ellie sitting on the fence of the Safari Exhibit at the Dublin Zoo in early August, held up by Dave.

In hospital...again

Ellie is in hospital again. Same symptoms, the sudden ashen face, discomfort turning into fatigue and vomit. Instead of taking her home from school to sleep, I took her to the ER. She was then admitted to the neuro wing. Turns out there is this new MRI machine that can take a quick (5 minutes) and more accurate image of the ventricles...saving Ellie a whole lot of radiation. Apparently they have been using this for quite some time, but it is the first time we have heard about it. I am thankful to have found out. The reason we haven't heard about it before, though we have numerous ER visits that include CT scans, is because they only have a very small number of machines and limited hours of operation... Are you kidding me? So much there for another post.

Anyway, she is in for the night with Dada and will get the new MRI in the morning under slight sedation without intubation - which is a big improvement and sans radiation. It's still not clear if this is an abdominal migraine, regular migraine, brain deep seizure that doesn't show up physically nor in any EEG, acid build up or a malfunctioning shunt. 6 hours into our ER visit, Ellie spiked a fever.

There it is. I am home tonight alone in a quiet house, running Ellie's vomit covered clothes through the wash and cleaning up from the morning refuse. Putting her morning cereal bowl into the dishwasher feels a bit surreal. It's weird to be here at home, alone without the people who matter most. It's survival. Dave and I trade off sleep all the time, but it's weird, in a weird just not right kinda way.

Other than that, I am too tired/meh/raw/numb/notsurewhat to proffer more than the facts.