Things have been a little crazy around the Crain house so I haven't had the time to sit down and write about our follow up appointment with the Neurologist for Lilly's spinal MRI!
The spinal MRI showed nothing to be concerned about concerning her gait. Which is great! It did confirm that the Chiari Malformation is there but not affecting her at all. There is plenty of spinal fluid flowing behind that spot in her brain. It is still something that the dr. would like to keep an eye on so she will go back to see him every 6 months to watch and make sure she isn't having any symptoms.
For now with her gait I'm just going to watch it. I'm satisfied that we have ruled out something with her brain/spine.... but not satisfied that I don't have an answer. So we will continue to watch her. See how she does at school and if it gets bad again I will setup an appointment with her pediatrician again!
Showing posts with label neurologist. Show all posts
Showing posts with label neurologist. Show all posts
Thursday, October 6, 2011
Saturday, September 10, 2011
Spinal MRI
Yesterday Lilly had her spinal MRI's. There were originally supposed to be 3 separate ones but when we got there, the tech informed us that he was going to break it into 2! I was very relieved. She took her valium like a champ and we did the first hour and then he gave us an hour break for lunch. We went back for the 2nd one and it took about an hour and 1/2 and she was done! She did GREAT! She slept through most of it and didn't even cry when they gave her the i.v. w/ the dye in it! We go back on the 27th for her results!
Thursday, September 1, 2011
MRI Update
The neurologist called me to schedule Lilly's next set of MRI's for her spine. The test as a whole will take THREE hours! Obviously she isn't going to be able to lay there for 3 hours straight so they suggested we take a day and break it up into 3 parts. So she is going in Friday the 9th at 11a.m. They will do the first set and she will take an hour break and come back at 1p.m. for the next set and the same thing for the last set at 3p.m.! Throughout the day they will be giving her small doses of Valium to keep her calm. SO this means a long day for my little one! Keep her in your prayers as I'm sure it is going to be difficult for her!! She asked if she is going to have to get "medicine" 3 times (aka an IV w/ Dye) and I didn't think to ask that questions when they scheduled the appointment! I'm hoping for her sake that she doesn't have to!!!
Thursday, August 11, 2011
MRI results and follow up Appointment!
Well its nothing in her brain! Which is great! The neurologist said her brain was "Pristine!
He ordered an MRI of her spine to check the spinal cord and nerves and investigate further. This particular test takes 2 hours so they are going to split it up into 2. So that kind of sucks for her but she knows what to expect now.
He did however find an abnormality called a Chiari Malformation. He said he doesn't really think its related and just a coincidence. It's basically that her brain tissue is protruding 10mm outside her skull into her spinal cavity. He said it is common and although hers is impressive it doesn't raise any flags.
I feel conflicted!! I am THRILLED that there was nothing wrong with her brain for the most part, but I wish there had been an easy answer so she didn't have to endure more testing!!
Continue to pray for her as we walk this journey!!
He ordered an MRI of her spine to check the spinal cord and nerves and investigate further. This particular test takes 2 hours so they are going to split it up into 2. So that kind of sucks for her but she knows what to expect now.
He did however find an abnormality called a Chiari Malformation. He said he doesn't really think its related and just a coincidence. It's basically that her brain tissue is protruding 10mm outside her skull into her spinal cavity. He said it is common and although hers is impressive it doesn't raise any flags.
I feel conflicted!! I am THRILLED that there was nothing wrong with her brain for the most part, but I wish there had been an easy answer so she didn't have to endure more testing!!
Continue to pray for her as we walk this journey!!
Wednesday, July 27, 2011
NO Tumor!!
I just heard from the neurologist office and the preliminary report is no tumor!! He said there are a couple other little things that they found that the doctor will talk to us about at our appointment on the 11th but there is nothing life threatening going on and they are still going to figure out what is going on with her gait! Praise God!! So no real answers yet but at least we got this one important piece of big news! Thank You all for your continued support and prayers!! I will keep you updated after our appointment on the 11th!! Until then we are off to church camp next week and we are going to rejoice because God has all the glory in this situation!!
Friday, July 22, 2011
MRI
We just left the doctors office and Lilly did an amazing job! She cried a little bit when they injected the dye but she dried up quickly and was a trooper!
I asked about results and he couldn't tell me anything. He said that it will take 24 hours for the Dr to make a report. He said that if they see something of concern they will be calling me. Otherwise no news is good news and we will hear at our follow up appointment on the 11th of August. He DID say that I could call in a couple and ask about the results, so you all know I will be doing that!! I'm guessing the doctor won't have a report until Monday since today is Friday.
Thank you for all your prayers and support! It means so much to us and we know that Lilly is very loved!!
I asked about results and he couldn't tell me anything. He said that it will take 24 hours for the Dr to make a report. He said that if they see something of concern they will be calling me. Otherwise no news is good news and we will hear at our follow up appointment on the 11th of August. He DID say that I could call in a couple and ask about the results, so you all know I will be doing that!! I'm guessing the doctor won't have a report until Monday since today is Friday.
Thank you for all your prayers and support! It means so much to us and we know that Lilly is very loved!!
Saturday, July 16, 2011
Prayer for Lilly
Normally my blog is all about bright and bubbly things that are going on in our lives with the kids, but sometimes life isn't always bubbly and bright, sometimes we hit bumps along the way. Sometimes we need prayer warriors on our side for things going on in our lives and this is the reason that I write this blog!
A few months back we started noticing that Lilly was having trouble walking. I could describe it as "Hobbling"... At times it is bad enough that she is practically dragging her right foot. I had been watching it get worse and worse. I noticed it the most when I dropped her off for school and would watch her walk into class. I thought maybe at first that her shoes were too small and she was walking to compensate that. They were in fact too small, and we bought new ones, but that didn't help the problem. She had a jog a thon at school and was very sad that she couldn't do as many laps as the other kids. She couldn't pass her swimming lessons class because it "hurt" to kick her legs. I decided it was time to take her to the pediatrician.
We saw the pediatrician in May and he saw something with her reflexes that led him to refer her to a child neurologist. She had some blood work done and the referral was sent over. They couldn't get her in for TWO months.
Last Friday, the 8th she had her appointment with the child neurologist. I went in, not really knowing what to expect and honestly pretty confused as to why we were referred to a neurologist to begin with. I really thought when she went to the pediatrician that he was going to say she had just learned to walk funny and refer her to a physical therapist.
He examined her thoroughly!! He had her walk up and down the hall, with and without shoes. He had her walk on her tippy toes, and on her heels. He had her bend over and examined her spine. Then he tested her reflexes extensively.... and I mean that literally. He spent maybe 7/8 minutes solely doing this. He tested the reflexes in her knees, ankles, and under her feet. He examined her armpits. The movement of her legs, even her birth marks he was very interested in.
After he finished his examination he began to talk to me about what he thinks is causing the problem. Now before I went into this appointment my friend Kristi gave me some great advice about dealing with specialists. She said to hold my ground and make sure that I understand what they were talking about and to ask questions if I didn't. I was glad for this advice when he was talking to me about possible causes because he kept saying that she could have a "T". He talked to me about a "T" for a good 5 minutes all the while I had no clue what he was talking about so I finally asked. "What is a T??" He whispered "tumor". Needless to say I was NOT prepared to hear that word. Had I not asked I would have gone home and googled "What is a T".
SO what does this mean? He wants her to have an MRI. He mentioned 2 things that he feels it could be. 1. is a tumor. 2. Is some sort of lesion that was formed on her brain in utero that formed on the area of the brain that controls her "feet/legs". I asked what we would do if that were the case and he stated that there may not be anything that he can do for that. That it would be something she would have to learn to live with the rest of her life with therapy. I asked about her spine/nerves and he told me he would explore that option if nothing shows up in her MRI. He kept reiterating that he really feels like doing the MRI is the right choice and that he will get to the bottom of what is going on. He stated that he has been doing this 20 years and there is no reason to go running a whole bunch of tests that are unnecessary when he has a really good chance of finding out what is wrong with one test. So he feels strongly that what is going on is related to her brain in some sort of form.
Hearing all of this came as quite a shock and hearing the word tumor was really scary considering her family history of Chris' dad having brain tumors. It would be really easy to say "oh I'm sure it's nothing" but we don't want to be naive. At the same time however we DO know that God has a perfect plan for our baby girls life. Her MRI is scheduled for Friday, July 22nd at 9am. They will be giving me valium to sedate her a bit because of how loud and long the test is and she has to lie still for it. We are asking for prayers for Lilly through this procedure. For us, her family as we deal with all of these possibilities. For God's perfect plan in Lilly's life.
A few months back we started noticing that Lilly was having trouble walking. I could describe it as "Hobbling"... At times it is bad enough that she is practically dragging her right foot. I had been watching it get worse and worse. I noticed it the most when I dropped her off for school and would watch her walk into class. I thought maybe at first that her shoes were too small and she was walking to compensate that. They were in fact too small, and we bought new ones, but that didn't help the problem. She had a jog a thon at school and was very sad that she couldn't do as many laps as the other kids. She couldn't pass her swimming lessons class because it "hurt" to kick her legs. I decided it was time to take her to the pediatrician.
We saw the pediatrician in May and he saw something with her reflexes that led him to refer her to a child neurologist. She had some blood work done and the referral was sent over. They couldn't get her in for TWO months.
Last Friday, the 8th she had her appointment with the child neurologist. I went in, not really knowing what to expect and honestly pretty confused as to why we were referred to a neurologist to begin with. I really thought when she went to the pediatrician that he was going to say she had just learned to walk funny and refer her to a physical therapist.
He examined her thoroughly!! He had her walk up and down the hall, with and without shoes. He had her walk on her tippy toes, and on her heels. He had her bend over and examined her spine. Then he tested her reflexes extensively.... and I mean that literally. He spent maybe 7/8 minutes solely doing this. He tested the reflexes in her knees, ankles, and under her feet. He examined her armpits. The movement of her legs, even her birth marks he was very interested in.
After he finished his examination he began to talk to me about what he thinks is causing the problem. Now before I went into this appointment my friend Kristi gave me some great advice about dealing with specialists. She said to hold my ground and make sure that I understand what they were talking about and to ask questions if I didn't. I was glad for this advice when he was talking to me about possible causes because he kept saying that she could have a "T". He talked to me about a "T" for a good 5 minutes all the while I had no clue what he was talking about so I finally asked. "What is a T??" He whispered "tumor". Needless to say I was NOT prepared to hear that word. Had I not asked I would have gone home and googled "What is a T".
SO what does this mean? He wants her to have an MRI. He mentioned 2 things that he feels it could be. 1. is a tumor. 2. Is some sort of lesion that was formed on her brain in utero that formed on the area of the brain that controls her "feet/legs". I asked what we would do if that were the case and he stated that there may not be anything that he can do for that. That it would be something she would have to learn to live with the rest of her life with therapy. I asked about her spine/nerves and he told me he would explore that option if nothing shows up in her MRI. He kept reiterating that he really feels like doing the MRI is the right choice and that he will get to the bottom of what is going on. He stated that he has been doing this 20 years and there is no reason to go running a whole bunch of tests that are unnecessary when he has a really good chance of finding out what is wrong with one test. So he feels strongly that what is going on is related to her brain in some sort of form.
Hearing all of this came as quite a shock and hearing the word tumor was really scary considering her family history of Chris' dad having brain tumors. It would be really easy to say "oh I'm sure it's nothing" but we don't want to be naive. At the same time however we DO know that God has a perfect plan for our baby girls life. Her MRI is scheduled for Friday, July 22nd at 9am. They will be giving me valium to sedate her a bit because of how loud and long the test is and she has to lie still for it. We are asking for prayers for Lilly through this procedure. For us, her family as we deal with all of these possibilities. For God's perfect plan in Lilly's life.
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