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Thursday, June 07, 2007

Medical Ju-Jitsu!

Tap Dancing

Fire Walking

Western Cowboy dancing as bullets are fired at his feet

Tightrope Walking

Trapeze Swinging

Plate Spinning

Mind Boggling

Wrestling

What do all these things have in common? Just the mere fact that they describe the labyrinth we are in right now trying to figure out what is best to do for Ellie. I haven’t posted much because I am trying to get information from doctors and as such slave to my unending phone list that continues to shrink and grow like some big fat freakish cyber worm that thrives despite chunks being eaten out of it by little persistent mothers.

Here is the thing, Ellie has reflux. She has seizures. She has massive hypotonia with an overlay of spasticity in her ankles. She has a vision loss that has increased from 20/60 to 20/260 in two years. She has a mild hearing loss. She has strabismus in her eyes that has gotten much more out of control over the last six months. Over the last 3 months she has gained two pounds and 1.5 or more inches to weigh in at 28 pounds and measure at 38 and half inches tall.


She is in a growth explosion.
She is changing cognitively as well as you might have noticed from all our days out where instead of cowering in her stroller she is happily taking in her world in the sponge like way little kids do.

She is a joy – just don’t want you to forget that. My anxiety is high because I want to preserve her life. I want her to live a long time healthily and happily. I don't want any big disease monsters to swallow her up or rip her out of my arms.

But because of reflux and seizures and constipation (the first and last have everything to do with being Hypotonic which includes all the sphincters in her body) she is on a ton of meds. Cisipride, Zantac, Protonix, Myralax, Depakote. She has been on the first three for four years and on the Myralax for 2 and on the Depakote for sadly 1 year. That’s a lot for a little girl's liver to take. We recently got the vision report that told us that she had this HUGE vision loss. Though in going over it with her neurologist yesterday we decided that it wasn’t totally conclusive and have to get her a couple more tests to really know for sure (did you hear that?! My cyberphonelist worm just burped loudly!). That said the whole wandering eye thing is something that is noticeably obviously new and different.

Because of this we started to really research all the meds she is on and look for evidence of drug interactions. Or at least Dave did. He did because I freaked out about the vision loss and was in a panic over it and told him my gut was telling me it had something to do with the
Cisipride. So Dave, with his awesome amazing brain that is 2 parts Sherlock Holms, one part Copernicus, and millions of parts amazing computer scientist internet savvy guy found this site that tells you about all the meds in depth including rare side effects.

Guess what we found? A rare side effect of Cisipride is seizures and vision change or loss. A rare side effect of the Depakote (that we are using to treat Ellie’s seizures) is vision loss. So here we are treating Ellie’s reflux with diet and meds. Happily giving her a medication that could be the cause of her seizures though it’s really hard to know and then in turn medicating her for seizures with a med that can negatively effect her vision.

Someone, anyone, please shoot me now.

I am not quick enough for all of this medical
Ju-jitsu.

All along we have been adamant about NOT treating her reflux surgically (meaning getting her a fundoplication which I have written about before) because we were sure she would stop eating because it makes it hard to swallow at least according to many adults who have written about it on the Internet. Most of them also reported losing 10% or more body weight, which would be a horrible thing for my Skinny-Minnie girl. Though these days the ribs are not as noticeable (her cheeks have always been quite full despite low weight). How many 3 year olds do you know that weighed in at 22 pounds? Now at 4.5 years old she is whopping 28 pounder.
Ironically and sadly, last May, she stopped eating completely by mouth despite our best efforts.

Most nights she wakes up multiple times for hours at a time due to reflux. I think on the nights she doesn't wake up it's not because she is not refluxing but because she is so exhausted. The Gods of Sleep through the Night are actually the Gods of GERD. F&CK%R$!

What to do?

Here are some options:

1. Continue to treat the reflux with medications that are only minimally effective and will certainly one day in the not too distant future ruin her liver which would be fatal on top of having all kinds of other side effects including seizures and vision loss.

2. Take her off the Cisipride, Zantac, and Myralax and take our chances. Go see the “Witch Doctors” including acupuncturists, herbalists, naturopaths, homeopaths, and on and on to try to find alternative solutions for reflux or diet change even though she is already on a low acid diet that I have written about extensively. I still believe in this diet as she is gaining weight on it, has the most beautiful skin and hair I have ever seen and it has been vetted by a nutritionist who is open minded to not personally supporting Enfamil. She also is much less gassy and vomits less on it. But it's not perfect.

Also, no insult to said Witch Doctors. I have had quite a huge healing of my own tattered first two vertebrae because of Network Chiropractic – which I am huge believer in because it delivered me from years of chronic neck pain. But the problem is, no two WD’s say the same thing about Ellie. In my gut I know to explore with caution and I will. But it all takes time. If we take her off the reflux meds the big, her esophagus is going to disintegrate clock, starts ticking - LOUDLY like in Poe’s Tell Tale Heart (please somebody know that reference!).

3. Realize that her reflux will be here until stem cells can heal her brain which is probably several years away and get her the
fundoplication surgery and get her off the meds. A good friend and uber nurse told me that she has seen more than one child stop eating when they develop cognitively enough to realize that when they eat they get painful acid in their throat and mouth – this could certainly be what happened with Ellie last May. And that when they get the fundo and no longer experience that pain, start eating and get rid of their G-tubes. All that said, I still know implicitly we did the right thing not getting Ellie the fundo with her G-tube when she was one month old corrected and under 4 pounds.

G-tubes and fundos are NOT necessitated as some doctors might lead their patients to believe. Also, for the doctor I heard tell this to a mother in the bed next to our, G-tubes are NOT like wearing a wrist watch. I think he needs to get one and see if that analogy still fits. Some Residents are such idiots!

Rant, rant.

But if you follow this link to the description to this surgery you will realize quite quickly why I am not a fan. It just seems so barbaric and awful and God I hate the choices before me for my warrior princess pigtail sporting cutie pie. It’s just not fair.

So there are our options. Sucks doesn’t it?!

20 comments:

Maureen said...

Kathryn,

I have heard the recording of Tell-Tale Heart many times and know what you are referencing. I know what you mean about references - I have made comments about "Great Expectations" when I went to a 50th birthday party where cobwebs were placed on the wheelchair - and no one understood the reference. Sad that no one reads classic literature anymore. Hang in there with Ellie, so many choices but I think you are on the right track - making INFORMED choices rather than just doing whatever the doctors say. Keep up the good work! Love ya. Maureen

Jacqui said...

Sucks big time.

Anonymous said...

Here are choices we made for big-time reflux:
-Used Cisipride for several years. Scary, but we didn't have any complications (that we know of)
-Stopped Cisipride and went with accepting the reflux (and vomiting at times), but suppressing the acid (high dose)so that the esophagus wouldn't be damaged.
-Avoided Nissen fundoplication, because of a major parental fear of horrible, unanticipated side effects of the big guns on a fragile neurological system
-Small, calorie dense meals
- of course, no shaming about vomiting, wretching, gagging, etc.
-using some relaxation and breathing techniques to help calm what appears to be another form of spastic activity

That said, everybody is different. And these decisions are so very tough.
Good luck,
Janet

Penny L. Richards said...

For what it's worth, some different issues here, some same. My skinny son just finally hit 40 lbs this month. At the ripe old age of ALMOST A TEENAGER. So, on the subject of intake, I hear you! Like Ellie, my boy also stopped eating for a year or two, around the age of 7 I think? Anyway, we eventually figured out (the hard way) that his teeth were all awful, and he must have been in terrible pain with each attempted feeding. I hated what we had to do, surgically, to fix it, but I'll admit he's been eating well and happier ever since. Like most things, it only becomes clear that it was the right choice in retrospect.

Sometimes the choice isn't "pain" vs. "no pain." It's only "bad pain now that we can schedule and control" vs. "worse pain later, that comes at 4am on a Saturday, over a three-day weekend, while we're on a trip." I try to remember that, while the "screw it, no more phone calls" option is attractive, it can only postpone and complicate matters, most of the time.

It is so complicated on the best day, though, isn't it? Pigtails and beaming smiles will keep you slogging through--but it's still such a hassle.

Anonymous said...

<<"Like most things, it only becomes clear it was the right choice in retrospect.">>

How very, very true. So you have to be gentle on yourself as you try to make these really tough decisions.

Janet

Anonymous said...

Wow. I am really sorry for what you are going through. My gal was a micropreemie at Cedars too (thank God for Dr. Balaji), and here is a healing synopsis...

I had my girl see an energy healer for severe reflux. She was supposed to be on meds for 2 years+ and was off of all of them in 3 months. Her severe strabismus that neccesitated surgery by Dr. Wright (know him?) was also cured "spontaneously" (that took longer), plus she overcame every diagnosis/prediction they gave- there were a lot- (but thats a long story...) to be caught up by age 2 as a 25 weeker (and now ahead).

Follow your gut with energy healers. My experience has been that alot of emotionally damaged people get in the field of healing- but when you get a great one, WOW. Keep looking until you KNOW. That being said, she needs-

accupuncture at least 2x weekly to help with the detox and movement(chi cleanse) of these terribly noxious medications. You will see a difference even if you keep her on them. Her field is stuck, she can't process properly. From an energetic standpoint only, longterm this is making things worse.

massage her feet every night with 100% almond oil, pref. organic to further detox/movement

if you get off meds, do it SLOWLY because her system will energetically shock and could make things worse (cell shift engery)

tiny amounts of pure lime juice (liver cleanses) throughout the day, and YOUNG coconut juice to detox- just drops to start, never more than 1,5 tsp of lime total, lots of young coconut

Also, do you have a developmental pediatrician overseeing her care? Its a great asset and they take it a step over a ped.

I hope even one little bit of this helped. Personally, a balancing act between east and west seems best. You seem like such wonderful parents. Best wishes to you.

Kathryn said...

Thanks to everyone for their comments.

Janet- by surpressing the acid do you mean you had your baba on prilosec or protonix or some such other proton pump inhibitor and that was enough to save the esophagus deteriorating? We are leaning toward getting her off the cisipride and zantac and seeing how it goes. I would keep her on the protonix to try to surpress some of the acid.

Tell me more! No shaming around any of this is so important.

Penny - you got it right about the two choices. It's such a bummer that it's never a choice between something wholly good and something bad. Never. And it actually did make me feel a bit better to know there are other kids out there who are off the charts because of cp. That is a way different thing than the failure to thrive that the nutritionists put on Ellie. I don't think she is failing to thrive I think she has cp and was a preemie and is going to be smaller because of that.

Anonymous - thanks for the input on the acupuncture. That has actually been on my mind a great deal as something that ellie is ready for .But like you said finding a good one is tricky.

If anyone knows any great acupuncture/pressurists within a 50 mile radius of Boston, please email me their contact info!

Ok - haven't had my coffee yet - but the Beatle's tune long and winding road just popped into my head as I wrote that.

Kathryn said...

Maureen,

Thanks for your validation of my Poe reference@!

Love ya right back!
Thanks as well for Ellie's flowers! She loved them.

xoxox

Anonymous said...

We tried Zantac, Prilosec, Nexium, and finally, Aciphex. Under the supervision of a gastroenterologist (who, unfortunately wasn't familiar with severe CP-related reflux) we tried the different meds. Aciphex worked best. The gastroenterologist said we could much higher than the recommended dose for this situation. He follows up with periodic endoscopies, which show a healthy esophagus. So, for now, at least we live with that.

As far as the vomitting - we do see patterns. It's worse in the morning, with excitement or anxiety, or with large meals. So we try to adjust around those things.

My boy worked with a psychologist to learn some relaxation techniques and diaphragmatic breathing for post-op orthopedic/neuro pain several years ago, and interestingly, those techniques greatly help with the reflux/vomiting also.

No shaming - we just clean up the mess and move on. Hard to do in restaurants and away from home, but we come prepared with towels and changes of clothing. And, often, my boy chooses to eat minimally away from home to avoid those situations. Much as I'd like him to eat, I try to support those decisions. As you noted, eating can become a negative experience, and it's tough to counter that.

Good luck!
Janet

Billie said...

Yes, it sucks. It totally sucks.

I'm so very tired of doctors. There is NO good system in place for coordinating services. We have all of these appointments with all of these specialists and one hand doesn't know what the other is doing. We, as the parents, end up having to try to coordinate everything with the limited knowledge we have and LOTS of research.

Don't you wish you could just have a brainstorming session with ALL of the doctors in one place to come up with a plan? Have them call you up or come to your house to monitor said plan, making adjustments as necessary and doing all of the research for you?

I think if I could make one major change in the system, it would be that we would have doctors who specialize in CP who do all of the case management. It's so hard to coordinate and work it all out on our own.

Bummer. I am sorry for you.

And by the way...those pigtails are too cute for words!!!

Chrystie said...

Hi,

I came across your blog in part because, well, I'm a blog stalker. I wanted to tell you how BEAUTIFUL your Ellie is and introduce myself as a *different* Ellie's mom. My Ellie is 27 months old, and she, too was a preemie (although not nearly as early as your precious Ellie), and has PVL, which has resulted in cerebral palsy. I won't begin to tell you that I understand what you're going through, as we aren't dealing with many of the health issues you face with Ellie, but I DO "get" a lot of it. And, well, I just wanted to say hi!

Penny L. Richards said...

Don't you wish you could just have a brainstorming session with ALL of the doctors in one place to come up with a plan?

I have heard of someone doing this--the frustrated mom invited all the specialists who worked with her kid over for a dinner party, and a surprising number came--and once she had them all wined and dined and introduced to one another, they had an easier time communicating about her kid's treatment and care. And not just the medical specialists either--therapists, teachers, etc., were also included.

I don't have quite the energy for that level of organizing and entertaining, but I do make sure there's a recent photo of my kid in most of his various files in various doctors' offices and such--something to help them connect the name on the paperwork to a real person. I figure it can't hurt, and might help.

msiagirl said...

Honey, Ellie looks beautiful in her pictures, and I just wanted to say I've come by and read your post about these incredibly difficult decisions. Hugs.You've made the best decisions possible so far, and as she grows and shifts, so will you be. I will ask my teacher about a good acupuncturist. You yourself are doing a lot already with the scotson and simply when you are working with that method, visualise light and energy lines with it. No love like that can hurt her. love ya.

Moggy said...

Argh, I didn't realize I wasn't getting your posts in my feed... I would have commented on this already otherwise! :(

I have severe GERD from the same lovely source -- largely unresponsive sphincter muscles -- and the related (?) lack of peristaltic response in my lower GI makes full-on impactions a problem. My surgeon at the time evidently said fundo wasn't a good option, so we went with sleeping upright, only eating/drinking certain things, and more alternative medication than you can shake a stick at. I couldn't feel the acid properly (brain interprets those signals as "gut is cold") so we didn't realize how bad it was... We think that my tracheal stenosis at 8 years old was likely the result of the acid getting up into there; I'm not sure about the esophagus since I can only feel that it has slowly become harder to swallow (mechanically and in terms of space in the esophagus).

I can't comment much more right now as it's incredibly late, but I wanted to mention that much... I've tried a bunch of other meds, but so far Prilosec seems to be the only one that handles the acid for me and doesn't cause reactions or interact badly with my other meds.

(And I'd reject the fundo, too, simply because I know from experience that it's best to limit OR trips to what's necessary for survival. I wish they hadn't done several of mine to me.)

I hope things are calmer around there, or that you're feeling less frazzled now than when you wrote the post. :)

Kathryn said...

Janet - thanks for more info on that. It's difficult no matter what! But the relaxation part sounds like it would help a great deal. I will check out the meds you mentioned as well.

Moogy- Yikes - that is tough. I worry about Ellie's extremely high pain tolerance and so does her GI doc who of course wants to scope her. But Dave and I have pretty much the same philosphy you do about limiting OR procedures to what's absolutely necessary. Putting someone under anesthesia and surgery are so invasive and so weakening. I will keep you posted on anything we find out that is helpful for Ellie. The Diet I put her on under my nutrition label IS really helping her a ton.

Billie- that is so funny you said that because Dave and I were discussing how - was't it great in the NICU when all the docs would sit down together with you. And we were wondering how to make that happen. But you are totally right. If we could do that things would take a lot less time and be more all encompassing.

Penny- I get what you are saying. I am with you though - that would be pretty time consuming and we live in a house that is unfinished. But I wonder if they would come? Hmmm. That's a good thought though to get the docs personally involved in your world.

I DO love you idea of making sure a picture of your kid ends up in each doc's file. That is BRILLIANT and something I am going to do. Thanks for that.

Msia-g thanks for the vote of confidence! xoxo

Special Survivors said...

Kathryn,

I'm so sorry you're going through all this right now. It's so hard to know which is the "best" path to take.

Thoughts and prayers are with you.

Heesun

Nelba said...

Kathryn

I've wanted to comment on this long ago but can only get into blogger sites occasionally.

Loren had a G-tube plus a Nissen and even though I know we did not have much of a choice at the time, I've always resented both. The G-tube was definitely responsible for his huge digestive problems and ulcer during his last months. And I could not help but wonder if the Nissen hadn't worsened his inability to swallow.

But the problem with having to use a whole lot of medication is also that one interacts with the other and when you are putting problems with muscle tone into the mix and accept that that will influence the working of medication, you can be faced with all sorts of potential pitfalls.

I wish I could give you advice, but I can just say that you've done very well so far and that there is never a moment of "absolute certainty".

Thinking of you...
Nelba

Nelba said...

Aaargh. Blogger just swallowed my comment.

Anyhow, just wanted to say that we've often had the same debate about Loren and I absolutely hated his g-tube as well as the nissen because it defintely caused a lot of problems. But then, medication also did not seem to work too well either.

You've done so well so far, but I realize at what cost...

Thnking of you.
Nelba

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