Dr. Natasha is a neurologist. And obviously we admire her greatly. As for here on the home front, I wasn't planning on taking Ellie to the neurologist. In fact, I had several reasons why it would be a waste of time and had made up my mind we were not going. But alas, a beautiful friend helped us jump through red tape to see one of the (if not THE) leading neurologist in the area, so we went.
One of the most amazing things about this appointment was that another mom had warned of my coming (and yes I feel as if warning is a proper description). Thanks to this lovely friend - a mom who knows me, and who has an epileptic son treated by this doctor - I didn't have to come with a resume of why I am not crazy, or an explanation of my daughter's extreme situation. Once I got there I realized that was probably the last thing I had needed to worry about. It was easy to see why he is in such demand; he is phenomenal at what he does.
He took Ellie's novel long history, and we had an hour long conversation. He knew of FPIES, and EE, and ceilac, and asked very important questions like: has she been scoped? were her eosinophils checked? who was her GI? has she seen a geneticist? why not? He was even interested in her dissacharidases tests.
He asked about her allergies and why her chart just said peanuts and a couple other things. I explained that I was always told it was not possible to put the information in the computer. I told him what her biggest triggers are (dairy, soy, grain, corn), and emphasized corn. He typed away, and then said "Oh! so she can't do corn syrup, or corn....." I didn't hear the rest. I was floored! Did a doctor seriously just offer that to me without explanation? No argument about corn? or derived foods? He just kept typing. For the first time we were able to get that information spelled out in her charts. I was giddy. I commented: wow! most doctors don't even understand or believe that is a possibility. I said we were grateful to our fantastic allergist for that realization (to which he wanted to know who and said 'oh yes he is great.')
He then asked what she ate. I gave the 2 minutes version of the GAPS diet and its origins in SCD for Celiacs. I explained her current diet, and said that she would react to meats fed corn, soy or grain. His response while typing was a quick: "well, of course. That makes perfect sense." I about fell off my chair.
He confirmed what we have seen is most likely seizure activity, and believes she has heightened seizure activity at night. He asked a lot about what she does when she wakes up and how often. He said that night time seizure activity is common with kids like her due to body changes at night.
He shared several stories of healing, and treatments he has used for other children. The appointment was very full of information and conversation. He took a look at her spine and her sacral dimple/line, her hips and her turned in foot. He said there is possibility that one side of her brain is having more activity than the other which is contributing, but that he did not really feel that was the case. He has some tests he would like to run (EEG, MRI) and then discuss things further. And he finished up by saying he 'looked forward to working with her. She is a very interesting case.' I laughed out loud. Interesting indeed!
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Tuesday, April 17, 2012
Thursday, December 29, 2011
Sleep Is For Sissies
While watching television the other night I heard the quote: We will have plenty of time to sleep when we are dead.
Ugh. Boy did that stick with me! But there is no secret around here that I most certainly love (and miss) my sleep.
When you have a newborn baby, or even an infant less than a year, everyone expects you to be sleep deprived. They look at you, and grin, and oogle over the baby, and reassure you that at some point it will get better. And maybe offer unsolicited advice on crying it out, scheduling, or shoving their bellies full of hard to digest foods (rice cereal) in an effort to make them sleep longer.
My situation has been quite different now that Ellie is well over 2 years, and still wakes at least three times a night. Most people assume she sleeps right through the night and that we are out of that stage. This was illustrated recently when I met a new group of moms. The conversation was awkward (and a bit comical to me). It went something like this:
Group of moms of various ages and kid ages.
"it has been a rough week with illness. child #1 has not been sleeping at night and I am exhausted."
"oh yes, sleep is so important. that first year is so rough until they sleep well."
conversation continues. blah blah. sleep sleep...infant infant...so hard so hard...perfectly normal, acceptable, typical mommy talk.....
Meanwhile I think to myself: this new group of women do not even know me, and I am not going to dive into an entire conversation about FPIES. I am so tired of conversations revolving around that and explaining what 'allergic to all food' means. I am just going to listen, nod, and pretend my situation is the same.
Their chatting continued, until this lovely group of about 4 women realized I had just listened, smiled and nodded. I think they thought I was shy, and were showing effort to include me. At that point I realized my plan was not working.
One of the moms turned to me and asked: "how about you? how old are your children?"
I tried to be shy (I have to purposefully put effort in to do that) and said "6 and 2 and a half."
"and do they sleep well?"
MAN. UGH! Dang it! Now what?!
I took a big breath and mumbled as fast I could something like:
"no actually my 2 year old has an extremely rare immune system condition and is on a liquid diet and she wakes at least three times a night"
Silence. And a few 'oh's' and 'oh so you don't get sleep either'.
What in the world was I thinking? Perhaps I was trying to live back in the new normal, but this strategy did NOT work and only made these poor women feel more uncomfortable around me in the end. Lesson learned.
As for Ellie, dare I say it....she has been waking up only TWICE a night instead of THREE times a night for the last several days. This has come after the elk-broth-or-virus problem, so it is not uncommon for her to sleep more when recovering from a food issue. Except this time we are over a week out and it is still going on. Could it be? Could she finally be moving into better sleep?
She has also been eating less at night which I find interesting.
This coincides with a couple of other new developments that may indicate another stage in healing, but I am too afraid to believe that entirely. What it has done is make me begin Mission Get Ellie To Sleep Part 1.
Dr. NCM has said repeatedly that some of her patients are so sensitive to EMFs that they will not sleep until even the refrigerator is unplugged in the house. What is Ellie? A GAPS patient. And one of the most sensitive ones at that. So today I unplugged what I now know to be our extremely dangerous Ghz cordless phones, and plugged in an old wall mount that was graciously gifted to us. I even pulled the batteries out of the handsets.
Will it make a difference? We will see. What I know for certain is that it wont HURT, and can only make things better for ALL of us. At some point I will listen to the WAPF Conference recording on EMF's for more information. For now I move on to Mission Get Ellie To Sleep Part 2.
Ugh. Boy did that stick with me! But there is no secret around here that I most certainly love (and miss) my sleep.
When you have a newborn baby, or even an infant less than a year, everyone expects you to be sleep deprived. They look at you, and grin, and oogle over the baby, and reassure you that at some point it will get better. And maybe offer unsolicited advice on crying it out, scheduling, or shoving their bellies full of hard to digest foods (rice cereal) in an effort to make them sleep longer.
My situation has been quite different now that Ellie is well over 2 years, and still wakes at least three times a night. Most people assume she sleeps right through the night and that we are out of that stage. This was illustrated recently when I met a new group of moms. The conversation was awkward (and a bit comical to me). It went something like this:
Group of moms of various ages and kid ages.
"it has been a rough week with illness. child #1 has not been sleeping at night and I am exhausted."
"oh yes, sleep is so important. that first year is so rough until they sleep well."
conversation continues. blah blah. sleep sleep...infant infant...so hard so hard...perfectly normal, acceptable, typical mommy talk.....
Meanwhile I think to myself: this new group of women do not even know me, and I am not going to dive into an entire conversation about FPIES. I am so tired of conversations revolving around that and explaining what 'allergic to all food' means. I am just going to listen, nod, and pretend my situation is the same.
Their chatting continued, until this lovely group of about 4 women realized I had just listened, smiled and nodded. I think they thought I was shy, and were showing effort to include me. At that point I realized my plan was not working.
One of the moms turned to me and asked: "how about you? how old are your children?"
I tried to be shy (I have to purposefully put effort in to do that) and said "6 and 2 and a half."
"and do they sleep well?"
MAN. UGH! Dang it! Now what?!
I took a big breath and mumbled as fast I could something like:
"no actually my 2 year old has an extremely rare immune system condition and is on a liquid diet and she wakes at least three times a night"
Silence. And a few 'oh's' and 'oh so you don't get sleep either'.
What in the world was I thinking? Perhaps I was trying to live back in the new normal, but this strategy did NOT work and only made these poor women feel more uncomfortable around me in the end. Lesson learned.
As for Ellie, dare I say it....she has been waking up only TWICE a night instead of THREE times a night for the last several days. This has come after the elk-broth-or-virus problem, so it is not uncommon for her to sleep more when recovering from a food issue. Except this time we are over a week out and it is still going on. Could it be? Could she finally be moving into better sleep?
She has also been eating less at night which I find interesting.
This coincides with a couple of other new developments that may indicate another stage in healing, but I am too afraid to believe that entirely. What it has done is make me begin Mission Get Ellie To Sleep Part 1.
Dr. NCM has said repeatedly that some of her patients are so sensitive to EMFs that they will not sleep until even the refrigerator is unplugged in the house. What is Ellie? A GAPS patient. And one of the most sensitive ones at that. So today I unplugged what I now know to be our extremely dangerous Ghz cordless phones, and plugged in an old wall mount that was graciously gifted to us. I even pulled the batteries out of the handsets.
Will it make a difference? We will see. What I know for certain is that it wont HURT, and can only make things better for ALL of us. At some point I will listen to the WAPF Conference recording on EMF's for more information. For now I move on to Mission Get Ellie To Sleep Part 2.
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