Neck/Muscle Strength
thebratpack
Posted 2010-05-12 7:57 PM (#39253)
Subject: Neck/Muscle Strength


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My son had his VEPTR placed at 8-9 mos old (I can't remember exactly when) and he's currently 2. For the first 8-9 months he couldn't do tummy time, or anything that would cause him stress due to his lung capacity and if he did get stressed he would stop breathing (his malacia would kick in). For the first 8-9 months he basically laid in a backward "C" position (over a boppy, over our knees, etc). That position gave him the best possible breathing room. He's now 2, and because he missed all that crucial tummy time and muscle building period, he still can't crawl. He can sit alone and he scoots everywhere on his back. If we put him in the crawling position, on all fours, he can hold himself up, but not his head. His head always hangs on the floor and he's unable to lift it on his own. We will lift it for him and when we let go it slowly drops to the floor, along with his little arms giving out from underneath him. Is there anyone else who has experienced this weakness in neck muscles? Or poor range of motion? Is it caused by the rods? The ortho keeps stating the rods shouldn't be causing it, but it just seems odd. He can obviously sit and hold his head up. And we've noticed lately that it's very awkward for him to shake his head yes. He's all about shaking his head no, but he gets really nervous when we demonstrate for him what "yes" is and move his head for him. He actually fights us when we try to move his head backwards for the yes motion. Just wondering if other parents have experienced this. Thanks!
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Zoes Nana
Posted 2010-05-12 8:16 PM (#39254 - in reply to #39253)
Subject: Re: Neck/Muscle Strength



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AFTER ZOE HAD HER IMPLANTS, WE BROUGHT HER BABY "WALKER" OUR OF STORAGE....ZOE WOULD NOT TAKE WEIGHT FOR A LONG TIME, AND HAVING HER IN THIS GAVE HER THE CONFIDENCE AND AID SHE NEEDED....WE WOULD ROLL AND BLANKET UP UNDER HER ARMS, AND THAT HELPED AS WELL FOR COMFORT...
ABOUT THE NECK...HAS HE BEEN CHECKED FOR ANY CERVICAL ANOMOLIES?....ZOE HAS SEVERE FUSIONS IN HER NECK.....I WOULD NOT MOVE IT...LET HIM DO IT AT HIS COMFORT LEVEL....
GOD BLESS....
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Carmell
Posted 2010-05-12 11:56 PM (#39256 - in reply to #39253)
Subject: RE: Neck/Muscle Strength



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Has your little one been evaluated by a pediatric physical therapist?  It sounds like he would be a great candidate for having therapy to help strengthen those muscles.  Is there a reason why he can't do it?  Medically?  Does he have hypotonia, or other problems that relate to weak muscles?  Hopefully something will work out for him.  I don't see how the rods would be a problem.  They offer support.  It does make sense, tho, that if he wasn't using those muscles prior to surgery, he wouldn't be developing them after, unless you help him with it.  Good luck with this.
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HopesMom1124
Posted 2010-05-13 10:47 AM (#39261 - in reply to #39253)
Subject: Re: Neck/Muscle Strength


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Welcome to the board!! My daughter Hope never learned to crawl on her hands and knees. At first we did not know what to do, she could not hold her head up on her own or sit up. She slept in the backward "C" position that you mention due to her ling capacity on the right side. She still sleeps in the position and a few others that are hard to discribe. Some are pretty amazing.

I would get a physical therapist involved for sure. Hope some how figured out to crawl while laying on her back. With the help of therapy and repitition she learned to sit up. Once she got the hang of that she scootted on her bottom everywhere(she would get hole in her clothes pretty fast), until after the VEPTRs were put it. Then she started to pull herself up and stand. After that PT worked with her on walking and then one day she just did it. PT was a great thing for her.

Hopes mom,
Stephanie
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thebratpack
Posted 2010-05-18 10:52 AM (#39296 - in reply to #39261)
Subject: Re: Neck/Muscle Strength


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Thank-you so much for the responses! My son has had a physical therapist since he was 4 months old. She's never dealt with the VEPTR before, which many of my son's doctors and surrounding support system haven't, and she doesn't understand either what is holding him back from being to lift his head past midline. He does have low muscle tone which is usually the only answer any of doctors can come up with as to why he can't lift his head up. He also has a large head so we joke it too big for his little muscles to lift. We're currently trying to teach him to do a military crawl. But bless his heart, this past week he's been trying over and over again to push up into a crawling position. It's amazing to watch and just melts your heart! He seems to understand the basis of the military crawl but again he doesn't have very strong muscles in his arms to help pull him. His legs are stronger and can help push, which is what he uses when he scoots on his back. My son doesn't have a diagnosis or a syndrome to help guide us to what to expect and not expect (he was born with a clubbed foot, cleft palate, deafness-though eartubes resolved that, chronic lung disease, congential scoliosis w/ a spinal deformity, tracheobroncial malacia (he's trached), and he has a nissan/GT).Test after test have come back inconclusive or negative and the doctors told us they didn't know if he'd ever sit, crawl, walk, stand, etc. He's sitting and can bare weight and can walk while holding our hands. So he's come much farther then the "experts" had anticipated. So in the big picture the lifting the head shouldn't be a concern but after having physical therapy for so long and us working with him over and over again, I would think he'd have the strength and ability to lift it by now. That's where my concern came from as to whether or not it was the VEPTR that may be causing it. But he's making huge strides within the last couple of weeks, so I'm excited to see where my son is going with all his new found progress!
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HopesMom1124
Posted 2010-05-19 10:46 AM (#39300 - in reply to #39296)
Subject: Re: Neck/Muscle Strength


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Wow! Glad to hear your sone is making huge strides. Hope went through some of the same things your son is going thru now. The docs told us that she would never make it to 1 year. After that she had her first birthday and they said she would never walk. After the VEPTR was placed it helped her hips line up. Still took another year for her to walk, but things take time and at 2 1/2 she was walking on her own.

Hope has VATERYL or VATER syndrome. I would see if this is what your son might have. Each letter in the acronym is used to describe specific or multiple parts of the body thay may have been affected or interrupted during embryonic development either by developing abnormally or not at all. I can't recall what they all stand for right now. I would check it out. Hope this helps with a diagnosis or syndrome.

Stephanie
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Zoes Nana
Posted 2010-05-19 3:31 PM (#39301 - in reply to #39253)
Subject: Re: Neck/Muscle Strength



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THANKS FOR THE UPDATE....
KEEP US POSTED...
GOD BLESS...
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thebratpack
Posted 2010-05-19 6:44 PM (#39308 - in reply to #39253)
Subject: Re: Neck/Muscle Strength


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Stephanie-I will have to ask about VATER or VATERYL syndrome. It's never been mentioned but it might be something the doctors may have already ruled out? I know they were looking at cartilage disorders because he has very soft ears, nose, has tracheobronchial malacia, and of course the scoliosis which was cartilage in utero! The doctors were really excited because they thought they were onto something but the tests came back negative. I'm not quite sure what exactly they were looking for. The geneticists said the technology may not be sensitive enough yet to diagnosis him. It may be a few more years before new tests are developed. Does your daugher have soft cartilage? The doctors always joke that my son is a 1000 piece puzzle and we only have a few of the pieces put together. How exciting about your daughter though! I know I shouldn't feel this way, but I love when my son outsmarts the doctors! We were told continuously that he was going to die, but I would tell them right back that no, he wouldn't. I look at my son each day with amazement, and I'm sure you look at your daughter the same way.
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HopesMom1124
Posted 2010-05-20 1:30 PM (#39320 - in reply to #39308)
Subject: Re: Neck/Muscle Strength


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Hope does not have very soft ears or nose. She had a TEF repaired at birth, she currently has a MIC-KEY button or GT, her right arm is missing, she has osteoporosis (she was receive monthly infusions, however they have stopped due to her receive enough of the medicine), she has severe congenital scoliosis, she is missing her ribs on her right side, her lung on the right side is small (that's called thoracic insufficiency syndrome or TIS), she also had tubbs placed b/c of hearing issues and really bad ear infections. She also had her tonsils and adnoids removed last summer (they were blocking too much of her airway when she sleeps). Her right kidney is missing, her left one is functioning normal. She has VEPTR on both sides, rib to pelvis. I wil be thinking of you and your family often. Keep us posted on what you find out.
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kchristensen
Posted 2010-05-26 12:14 AM (#39357 - in reply to #39308)
Subject: Re: Neck/Muscle Strength



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It's great news that your son has been doing so well these last few weeks. It's so fun to watch those spurts of growth and development. Carter has not had his surgery yet, but will have it in the next few months. He did the military crawl too. You mentioned the midline. I'm sure you therapist has looked at this, but does he have a problem crossing over his midline with his arms or legs? I guess it doesn't really seem too likely because he shakes his head no, but not yes. Have they looked closely for high fusions? Carter is fused on his right side. He compensated by using his right leg to do the short stuff and kept his left leg long. I wonder if the same sort of thing is going on with your son, where it is easy to move left to right, but hard to go up and down if there is a fusion. ? The other thing that I was thinking of is underdeveloped muscle. Carter is missing a nipple, and the docs say that the chest muscle will likely be underdeveloped there as well. Finally... this is just a complete shot in the dark, but some of our kids also have tethered spinal cords. Carter was looked at after he was born, but they could not see the fat in the filum until later. Have they looked at that? Also... I don't think it would cause discomfort in his neck, but I'm just throwing it out there. I really hope you find the cause. It must be frustrating to keep coming up empty after all the tests. :0( Good luck with everything, and congrats again on his recent progress!
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