Today we met with Dr. Kahn. Neil had to work so I had my mother-in-law go for the added support and an extra set of ears. Dr. Kahn evaluated Logan and going by his history...she doesn't think he is regressing as much as it seems to our PT, but rather he has had these problems all along and they are just presenting differently. His muscles are tired. Everything that she read/heard from us she feels that it is probably a genetic disorder and that he has had "it" since birth. This would explain the army crawling, the delayed walking, drooling, and the delay in speech. We don't really know any more today than when we went in (which I knew...bc she has to do all of the tests...). However, I got a really good feeling from her, and I don't think that this will be a dead end.
She ordered lab work (to look at some more genetic things), 3 different heart tests (bc it is all muscle problems we are seeing and the heart is a muscle), MRI of the brain, MRI of the cervical spine, MRI of the lumbar spine, and an MRI of the thoratic spine. She also wants to check him for a condition called myotonic dystrophy. I have no clue what that is... On a better note she did NOT feel that it is muscular dystrophy. That is GREAT news. She also did not think that the "tethered spinal cord" wasn't fitting either...he wouldn't have arm weakness and drooling with that. I think doctors and therapists shouldn't give out possible diagnoses...it only makes the parent a nervous wreck and worry even more!
Dr. Kahn did say that if these tests are inconclusive, we will be heading to Riley Hospital to meet with Dr. Walsh who is a pediatric neurologist who specializes in neurogenetics. He would then perform a muscle biopsy. I am hoping we don't have to go that route and that we can receive a simple explanation. I guess we will see!
So today we begin yet another journey in hopes of finding an answer!
Showing posts with label neurologist. Show all posts
Showing posts with label neurologist. Show all posts
Friday, August 12, 2011
Wednesday, August 10, 2011
P.T. Update 8/9/11
I was hoping that Logans PT status would be at about the same as we were last week...because honestly...I don't see the changes that are happening right away because I spend every waking moment with him. Occasionally I will think..."man, he used to be able to do this." or "I thought last time that he did the treadmill he lasted longer." but as far as really *noticing* changes weekly it is so subtle to me that unless it is pointed out, I cannot really tell. I hope and pray that doesn't make me sound like a bad mother...I love this little boy more than anything (except the girls...I really love all my babies just as much as eachother!). Anyhow - what I am trying to get at is that I think/hope/pray all week that "next week" there will be a positive change. You can only go downhill so long before things start to improve...right?!?!
This week Logan's therapist noted that his scapulas are beginning to "wing" (this means that his shoulder blades are protruding from his back because the muscles are not doing their job of holding them in place), his right scapula is worse than his left, his stamina on the treadmill was significantly lower (which I kind of expected because he is just so exhausted), his core muscles are weakening, and the tremor was much worse this week than it was last week. The P.T. was extremely glad we were able to get into the neurologist so fast (this Friday)...she is actually going to type up a letter for me to give to the doctor specifically so that I won't forget anything. She is also faxing all of the weekly reports that she does...but she is very concerned with making sure the doctor does a full in depth evaluation. This makes me feel a little better...
Logan's behavior has been rotten for over a month now. I hate "reporting" that...but it is the truth. The P.T. and I think it is a combination of feeling so crappy, not getting a full nights sleep, and just experiencing all of the changes so fast and he doesn't understand what is going on. It breaks my heart, but at the same time I am so stressed out that the tantrums only add to the stress. I can't even imagine what he is going through. I wish that I could take it away and he could just relax. He can't sit down and have a glass of wine and a bubble bath and forget his troubles (for the time being) like I can. :(
I have been trying to remain strict with the discipline bc he is so smart that if I budge even a little, he will catch on and take full advantage. He did lose his t.v. (the documentaries that he watches every single night) a few nights ago bc he refused to get in his bed. I had to be the bad guy and turn it off...but you know what?! That next night he went to bed without hassle.
If you pray -- please pray that we are doing the right thing -- making the right choices in the doctors we choose to take care of our Logan. Also pray for the doctors patience & intelligence -- this obviously isn't an easy or typical case. Pray for Neil and I that we maintain our patience with the children and the doctor's. Also for our girls -- Emily and Hailey -- to know our love for them is infinite. I am so afraid that they might think Logan has become more of a priority. Each child is very special to Neil and I. Most of all -- Pray for Logan's body -- that it may receive complete healing.
Thank you all so much -- and I will keep updating as I can!
Autumn
This week Logan's therapist noted that his scapulas are beginning to "wing" (this means that his shoulder blades are protruding from his back because the muscles are not doing their job of holding them in place), his right scapula is worse than his left, his stamina on the treadmill was significantly lower (which I kind of expected because he is just so exhausted), his core muscles are weakening, and the tremor was much worse this week than it was last week. The P.T. was extremely glad we were able to get into the neurologist so fast (this Friday)...she is actually going to type up a letter for me to give to the doctor specifically so that I won't forget anything. She is also faxing all of the weekly reports that she does...but she is very concerned with making sure the doctor does a full in depth evaluation. This makes me feel a little better...
Logan's behavior has been rotten for over a month now. I hate "reporting" that...but it is the truth. The P.T. and I think it is a combination of feeling so crappy, not getting a full nights sleep, and just experiencing all of the changes so fast and he doesn't understand what is going on. It breaks my heart, but at the same time I am so stressed out that the tantrums only add to the stress. I can't even imagine what he is going through. I wish that I could take it away and he could just relax. He can't sit down and have a glass of wine and a bubble bath and forget his troubles (for the time being) like I can. :(
I have been trying to remain strict with the discipline bc he is so smart that if I budge even a little, he will catch on and take full advantage. He did lose his t.v. (the documentaries that he watches every single night) a few nights ago bc he refused to get in his bed. I had to be the bad guy and turn it off...but you know what?! That next night he went to bed without hassle.
If you pray -- please pray that we are doing the right thing -- making the right choices in the doctors we choose to take care of our Logan. Also pray for the doctors patience & intelligence -- this obviously isn't an easy or typical case. Pray for Neil and I that we maintain our patience with the children and the doctor's. Also for our girls -- Emily and Hailey -- to know our love for them is infinite. I am so afraid that they might think Logan has become more of a priority. Each child is very special to Neil and I. Most of all -- Pray for Logan's body -- that it may receive complete healing.
Thank you all so much -- and I will keep updating as I can!
Autumn
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