ktgrok Posted October 28, 2011 Share Posted October 28, 2011 She has always had these odd spasms, for lack of a better word, when she is excited. The ped told us, back when she was about 6 months, that it was just an immature nervous system. That she would grow out of it. He has never really seen her do it. I mentioned it at her 18 month visit, and was kind of blown off by the nurse practitioner that she saw. At my recent visit to my mom's house she was doing it a lot more, much more than at home, probably because she was so much more worked up there. All fun and games all the time, and not enough sleep. She does it more when she is tired. Anyway, seeing her do it SO much there, many times in a row, got me concerned enough to take her back to the ped tomorrow, with plans to ask for a referal to a neurologist. Unless he can give me a definitive answer. Please pray that she is fine, and that this is normal. And please pray she does it in front of him, so he can see what we are talking about. Thank you! Quote Link to comment Share on other sites More sharing options...
lllll Posted October 28, 2011 Share Posted October 28, 2011 :grouphug: We'll be praying. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted October 28, 2011 Share Posted October 28, 2011 Can you take a new toy or something to give her in the office that will excite her enough to do it in front of the doc? Next time record it so you can show them. Good luck and :grouphug::grouphug::grouphug:. If they won't give you a referral, I would look into making an appt. w/ a ped. nuerologist anyway. I just called and did it on my own. Prayers for you and your dd! Quote Link to comment Share on other sites More sharing options...
fhjmom Posted October 28, 2011 Share Posted October 28, 2011 Does she have any light colored birthmarks or rough patches of skin? Good for you for insisting on getting someone to take you seriously. If you cam get a video to show the ped or neurologist, that may help. I am praying that you get some answers and that whatever you are seeing is not anything serious. :grouphug: Quote Link to comment Share on other sites More sharing options...
jhschool Posted October 28, 2011 Share Posted October 28, 2011 Praying for you. Quote Link to comment Share on other sites More sharing options...
Aggie Posted October 28, 2011 Share Posted October 28, 2011 Does she have any light colored birthmarks or rough patches of skin? What would these indicate? Quote Link to comment Share on other sites More sharing options...
jallison25 Posted October 28, 2011 Share Posted October 28, 2011 thinking of you!!!!:grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted October 28, 2011 Share Posted October 28, 2011 I'll pray. I just thought of something--in our family, the Aspie-tendency members tend to "spasm" when they are excited. It's not really involuntary, like a tic or something. It's more like excitement that expresses itself in finger stim or in tightening somewhere on the body. Is it like this? Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted October 28, 2011 Share Posted October 28, 2011 Praying for your dd and peace for you. It is hard not knowing what is going on with our kiddos. Can you get her spasms on video? I have had to do that before, and it worked great. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted October 28, 2011 Share Posted October 28, 2011 Praying! :grouphug: Let us know how the appointment turns out. :grouphug: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 28, 2011 Share Posted October 28, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
Remudamom Posted October 28, 2011 Share Posted October 28, 2011 Prayers. Quote Link to comment Share on other sites More sharing options...
Perry Posted October 28, 2011 Share Posted October 28, 2011 If you can get a video to show the ped or neurologist, that may help. :iagree: Quote Link to comment Share on other sites More sharing options...
fhjmom Posted October 28, 2011 Share Posted October 28, 2011 What would these indicate? My grandson has a genetic disorder that is characterized by infantile spasms and other seizures as well as some dermatological signs, including "birthmarks" that are very light or others that are "pebble-y". It can also cause other manifestations in internal organs but those are not typically found unless they do tests to look for them based on other symptoms that are observable. The blood work to conform the diagnosis is expensive and there is only one lab in the US that does it so it is not routinely performed unless symptoms indicate the need. Also, I have read so many stories of doctors who are not familiar with the condition and dismiss parents concerns when they come in and tell the ped about their child having these "spasms", which are often worse when the baby is tired or excited. There are so many other possible explanations, I don't want to worry the OP unnecessarily, but if the birthmarks were present in addition to the spasms, I would ask for a referral to a dermatologist as well and ask for a Wood's Lamp evaluation (many times there are spots that are often not visible to the naked eye but will show up under a Wood's Lamp). Quote Link to comment Share on other sites More sharing options...
SweetMissMagnolia Posted October 29, 2011 Share Posted October 29, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
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