greenbeanmama Posted February 20, 2018 Author Share Posted February 20, 2018 We got in to see our family doctor today. He said he'd fill out the paperwork to refer us to the teaching hospital right away - gave us the option of going to Mayo or Cleveland right away, but said the university hospital is an excellent place to start. We should hear from them in a few days, but at least the ball is rolling. Sadly, he also said that if I had called our current neurologist, they probably still wouldn't have seen us until June. Yikes, that's a bit scary! 10 Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted February 20, 2018 Share Posted February 20, 2018 How do you check a child for seizures? I've been trying to pay attention, but honestly don't know what I'm looking for. She never seems confused or disoriented. She isn't losing consciousness. I've been snuggling her to sleep because she's been asking me to, and all seems normal when she's drifting off. She doesn't wake up needing me at night. I will link to a few videos of people having seizures. You can find more, I'm sure. Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted February 20, 2018 Share Posted February 20, 2018 Stupid YouTube. If I'd wanted to embed the first two, I'd've done so! Quote Link to comment Share on other sites More sharing options...
DesertBlossom Posted February 20, 2018 Share Posted February 20, 2018 I read something about this today and it made me think of this thread. Cerebellar ataxia Cerebellar ataxia in children And since you mentioned she recently had the MMR - https://www.ncbi.nlm.nih.gov/pubmed/10677059 Quote Link to comment Share on other sites More sharing options...
Kiara.I Posted February 20, 2018 Share Posted February 20, 2018 (edited) What about heavy metal toxicity? Lead poisoning can be checked quite easily, I think. Not sure about others. Lyme? I hope you get appointments very quickly. Edited February 20, 2018 by Kiara.I 1 Quote Link to comment Share on other sites More sharing options...
SKL Posted February 20, 2018 Share Posted February 20, 2018 I was also thinking tay sachs / mitochondrial disorder. Good luck, I hope whatever it is can be treated / cured. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted February 22, 2018 Share Posted February 22, 2018 We got in to see our family doctor today. He said he'd fill out the paperwork to refer us to the teaching hospital right away - gave us the option of going to Mayo or Cleveland right away, but said the university hospital is an excellent place to start. We should hear from them in a few days, but at least the ball is rolling. Sadly, he also said that if I had called our current neurologist, they probably still wouldn't have seen us until June. Yikes, that's a bit scary! I missed this update but I came looking for the thread. What does your family doc think is going on? Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 22, 2018 Share Posted February 22, 2018 I guess what I am trying to say is that you need to see more doctors asap, as many have suggested. How do patients get to someplace like the Mayo Clinic? Maybe starting with a multidisciplinary team locally? Since the OP is being offered this, I am responding just in general...sometimes you just cold call. It depends on specialty, symptoms, what you've already tried, and insurance requirements, but cold calling is actually possible at times. She's got allergies (showed positive to at least two in every category they tested for), and some we can't figure out, so she carries Epi-pens. Mostly she gets very itchy, including lips and tongue, or ends up with a pinprick rash over her body. She hasn't seemed to notice any issues at school (the ones the teacher pointed out). She has mentioned lately that her stomach has been hurting - either it's so empty it hurts, or she eats and then it's so full it hurts -the amount hasn't really changed though. I'd been chalking that up to her not liking what was offered, but if she wants to munch on carrots or tomatoes later, I let her. She said yesterday that she's been burping all the time. These are possible histamine reactions too. I was thinking that this could be a neurological manifestation of some kind of nutrition problem. Like a chain reaction. Your mentioning food issues that aren't all accounted for make me think it's worth looking into alongside the other issues. I am thinking something like an inborn error of metabolism (genetic?), Celiac disease (genetic plus some kind of onset timeframe/trigger) leading to nutrient deficiencies (many mineral deficiencies lead to neurological symptoms), some other malabsorption issue (kidney issues or some other thing that can cause malabsorption), or a combo deal. It could be some combo of things that involves a neuro diagnosis and something food-related. IDK, but here is a google search to start: https://www.google.com/search?rlz=1C1KYPB_enUS597US601&ei=4VePWouBJ8abzwLPkbyIAw&q=nutritional+deficiency+neurological+symptoms&oq=nutrition+deficiencies+with+neurologi&gs_l=psy-ab.3.0.0i22i30k1.11194.17658.0.19500.41.35.2.4.4.0.140.3541.21j14.35.0....0...1c.1.64.psy-ab..0.41.3606...0j0i67k1j0i131k1j0i131i67k1j0i10k1j0i13k1j0i13i30k1j0i22i10i30k1j0i8i13i30k1j33i22i29i30k1.0.QnY0DxbiCCc My mom had neuropathy without injury or diabetes. It eventually ended up being a magnesium deficiency, which isn't really on lists of things that cause neuropathy. 2 Quote Link to comment Share on other sites More sharing options...
greenbeanmama Posted February 24, 2018 Author Share Posted February 24, 2018 I missed this update but I came looking for the thread. What does your family doc think is going on? He said, "This is way above my pay grade", but thought something autoimmune or neuro-degenerative - he didn't want to run any tests, as the other hospital will most likely want to run them on their own machines. He remembered that my sister has MS, which reminded him that we tend to have auto-immune stuff in my family (he's been our family doctor since I was five). In talking to his nurse later in the week, she said they faxed 41 pages to the university hospital. Once I get their parent paperwork in the mail, I can start calling to see if they have an opening any sooner than several weeks out. 6 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted February 24, 2018 Share Posted February 24, 2018 He said, "This is way above my pay grade", but thought something autoimmune or neuro-degenerative - he didn't want to run any tests, as the other hospital will most likely want to run them on their own machines. He remembered that my sister has MS, which reminded him that we tend to have auto-immune stuff in my family (he's been our family doctor since I was five). In talking to his nurse later in the week, she said they faxed 41 pages to the university hospital. Once I get their parent paperwork in the mail, I can start calling to see if they have an opening any sooner than several weeks out. Sending prayers/good thoughts that you can get your daughter seen quickly and that whatever is going on is treatable. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted February 24, 2018 Share Posted February 24, 2018 He said, "This is way above my pay grade", but thought something autoimmune or neuro-degenerative - he didn't want to run any tests, as the other hospital will most likely want to run them on their own machines. He remembered that my sister has MS, which reminded him that we tend to have auto-immune stuff in my family (he's been our family doctor since I was five). In talking to his nurse later in the week, she said they faxed 41 pages to the university hospital. Once I get their parent paperwork in the mail, I can start calling to see if they have an opening any sooner than several weeks out. Fingers crossed that she can be seen ASAP! :grouphug: Quote Link to comment Share on other sites More sharing options...
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