PDA

View Full Version : Genetic and Undiagnosed Disorders


Pages : [1] 2
  1. Just saying hello!
  2. *Must Read* Welcome to the NEW improved version of Genetic,
  3. Welcome!
  4. Sleeping difficulties
  5. Difference Between Specialists
  6. News Tell us about your avtar or signature photo
  7. Noonan's, CFC and Costello syndromes, anyone?
  8. Need Hugs Feeling lost (long)
  9. urine organic acid???
  10. Appt with new immunologist
  11. Immuno/Rheumatologist--what should expect
  12. mom to ella and alex.......
  13. Update! Roll call for Genetic, Met. and Undiag.
  14. Article Complex Child E-magazine.
  15. Article Overview of the autonomic nervous system
  16. Article Information on Epilepsy and Seizures
  17. Sick Jessica, how is Ethienne
  18. Question Neurocristopathies?
  19. Sick Please say a prayer for Andrew
  20. Welcome! Liamsmom
  21. Question Part of the dysautonomia?
  22. Question Another question of energy.
  23. TOTW What testing has your child had done??
  24. Jsquared (Jenn) We are thinking of you.
  25. Sick Jaclyn, we are continuing to pray for Deanna
  26. Need Advice is this related to her autonomic issues??
  27. Question Heather28
  28. epicanthal folds???
  29. NIH Undiagnosed Program
  30. Update! Perfect bloodwork but
  31. See through skin
  32. Dark purple circles under the eyes.
  33. Need Hugs Myas Genetic appt today
  34. ARGH! Someone give me a hyperactive kid!
  35. Question Does anyone else find therapies a total
  36. TOTW Who is the most intrumental medical professional
  37. Memory lapses? Dysautonomia?
  38. Frustrated--Appt w/ new neuro last week
  39. Help What Would You DO?
  40. We are back here I guess
  41. Good News! what a relief!!!
  42. TOTW What do you do for YOU?
  43. new here
  44. Update! Andrew's having a brain MRI tomorrow morning.
  45. Odd yesterday(long)
  46. You tube video I came across.....
  47. Question IGG deficient testing
  48. Question what do you know about metabolic alkalosis?
  49. Update! Give us a little update.
  50. Umbilical cord or bone marrow transplant?
  51. We're thinking of Ella today.
  52. Ugh! relying on dr's office
  53. More dysautonomic stuff
  54. Ugh! anyone else tired
  55. Update! after D's appointment yesterday.
  56. Cardiac Issues Echocardiogram
  57. Need some quick advice
  58. Test Results elevated CPK
  59. Cross-Post: Long Fainting spell
  60. Trying not to get my hopes up
  61. Hemoglobin
  62. Dysautonomia Limabean, we are thinking of you guys.
  63. Therapy Long road of assessments start tomorrow
  64. Test Results Skin biopsy and DNA markers back
  65. Ugh! I don't know how you all do it
  66. Curious,your thoughts??
  67. Test Results Physio assessment
  68. Low Blood Sugar
  69. Odd Color on Ketone Test Strips?
  70. Worried about weight
  71. a geneticist sees a feature in another sibling?
  72. Dysmorphic features????
  73. Update! Can everyone give us a quick update and let us know how your...
  74. Good News! We have a diagnosis!
  75. autonomic insomnia
  76. Dysautonomia syndromes?
  77. More blood glucose questions
  78. Appointment GI appointment this afternoon
  79. Might wanna grab a cup of joe!
  80. Update! NM appt
  81. Kids with autonomic issues
  82. melatonin/seratonin-lumbar vs. bloods?
  83. Appointment Postponed that marathon speech assessment
  84. keep fingers crossed...
  85. Test Results Serratia UTI again
  86. Ugh! Disapointed with Genetics appointment today..
  87. Question autonomic??
  88. Appointment Thinking of Ella today
  89. Therapy Andrew has an OT assessment today.
  90. Interesting genetics website
  91. Need Hugs d had her eval today....
  92. Test Results blood test and the bx
  93. Ugh! Just had to turn down an appt
  94. Cross over toes/syndactyly
  95. Susan, how is Karuna??
  96. Question Secondary dysautonomias?
  97. Test Results NO SMA or MD but..
  98. Ugh! Today's big appointment
  99. small Ella update
  100. i can't reply much for a few days
  101. TOTW How has being the parent of a G,M or Und. child
  102. Question Ehlers Danlos syndrome
  103. GI appt
  104. Good News! Andrew and I had a 'date' today.
  105. Appointment I am in "ignore" mode...
  106. Good News! Friends, I will be 'absent' for a couple of days.
  107. News We heard from genetics....
  108. Today's Physiatry Appointment
  109. Question I am back......and a genetics question
  110. Update! Remember the physio assessment
  111. TOTW Alternative treatments
  112. where can you get?
  113. Kari - Cranio-Sacral therapy?
  114. Appointment Long day ahead tomorrow
  115. Need Ideas Low Tone or something else?
  116. What is the medical term for
  117. Question About Metabolic Syndrome
  118. Need Advice Glycogen Storage Diseases
  119. Dealing with spouse about SN child??
  120. Feeling Glum....
  121. Ped appt today- tic like movements
  122. Need Advice Testing and blah, blah
  123. homeopathy anyone?
  124. TOTW What are your childs symptoms, issues ??
  125. New...with question
  126. Update! Genetics-How it went.
  127. Update! Our trip is so close and....
  128. update on Devon
  129. results from at home sleep study
  130. Dysautonomia Our doctor is in New York.
  131. Dysautonomia Help with fluctuating Blood Pressures
  132. Welcome: Jennifer, alyssas mom
  133. Update! When I am away....
  134. Chorea
  135. Update! Ughh Do I have to?
  136. anyone good with organic lab results?
  137. Spoke with the genetics counselor
  138. Update on Alyssa's urodynamics today
  139. TOTW What is the hardest thing to deal with as a parent of an undiagnosed child?
  140. Appointment Seeing the geneticist this morning....
  141. Sheila - how did the appointment go?
  142. Appointment Cate sees the local Geneticst on Tuesday
  143. next week d is having........
  144. Update! Cate's Geneticist appt
  145. Genetics update
  146. Need Advice Don't know what to do.
  147. dysautonomia and anaesthesia
  148. Our Visit at the Undiagnosed Diseases Program
  149. SUA (simgle umbilical artery) APO our special kids
  150. Need Ideas Stuck with a dilema
  151. Ugh! WTF?! Vent
  152. Hello
  153. I'mmmmmm Baacccckkkkkk.......
  154. Sneak peek of Littlest Heroes photo shoot.
  155. I am Struggling!!!
  156. TOTW What impact does having a SN Child have on your other relationships?
  157. Keely, how did the pediatrician appt go today??
  158. It Gets Better!!!
  159. Question about Endocrinologists
  160. Good News! blood work
  161. I'd like to start a non-profit
  162. Update! Just a little update on us
  163. Deanna's big week(s)
  164. Need Ideas Throwing out some questions..
  165. Update! On Jessica and Us!!!
  166. Normal Micro Array...
  167. On a Good Note!!!!
  168. News Link from UMDF about Swine flu
  169. Ugh! We have another UTI
  170. What to expect at first genetics appt
  171. Can I Say How Much I Hate Hate Hate What is Going on with Jessica!!!
  172. way busy...
  173. Episodes of low BPs... thoughts?
  174. Ugh! have you ever had a dr....
  175. Glutaric Acid
  176. Help Is there only 1 type of "true" autonomic BP lability?
  177. Appointment Taking Jessica Back to the Pediatrician Tomorrow!!!
  178. Article Pediatric Autonomic Disorders (by Dr. A in NY...)
  179. Good News???!!
  180. Update! On Jessica's Doctors Appt Today!!!
  181. Still waiting...
  182. Jessica, how is Ethienne?
  183. Dysautonomia Cortisol levels/symptoms?
  184. Need Hugs Need to vent...erg!
  185. Ugh! Long week ahead!
  186. Getting ready for Blade's genetics appt Monday (5/18)
  187. Sharon, did Ella get her blood tests done??
  188. Orthopedic INCREDIBLY loose joints
  189. TOTW: How many kids with chromosome changes in here?
  190. TOTW Tell me about your struggles with school while dealing with an Genetic, Metabolic or
  191. Sophia's been accepted to Yale!
  192. Some Good News about Eliana!
  193. Help Brand New and Questions - Need Help! 2 DD with problems
  194. Ehlers-Danlos syndrome
  195. Good News! We FINALLY GOT OUR CALL BACK FROM,.......
  196. genetics findings
  197. Update! About the loose joints
  198. Need Advice Please Help Us!!!
  199. Probably going to do genetic testing....
  200. The Dr. In New Yorks thoughts about Andrew
  201. Dysautonomia Those with autonomic issues
  202. Need Ideas Speaking of autonomic issues...
  203. joining the genetics wait...
  204. Tired of no diagnosis
  205. Update! Blade's genetics appt
  206. Therapy Degenerative disease and pt/ot/speech therapies etc.
  207. Hypoplasia enamel?
  208. Appointment I am so Irratated!!!
  209. Question Eliana is not affected by cold water
  210. Allison, how are you?
  211. Update! Update me on your little kiddos
  212. Jaclyn.
  213. Anyone else have a little one with Williams Syndrome????
  214. Sharon, did you do the Melatonin,
  215. Jaclyn, Have you heard anything from Germany??
  216. Need Advice Pleae tell me what you think!
  217. Neuromuscular update
  218. microarray questions
  219. Question Elevated liver enzymes
  220. Appointment Andrew is having a sleep deprived EEG tomorrow
  221. Question Neurotransmitter testing
  222. Could use some thoughts for Alyssa
  223. Update! He wouldn't sleep!!!!
  224. Article Undiagnosed Registry...
  225. Update on Alyssa's appointment today
  226. TOTW What are your summer plans?
  227. Therapy Andrew will be in a horse show tomorrow!
  228. Testing Question What is the longest time you have had to wait for test results?
  229. Struggling
  230. Appointment We had a long psychology assessment today
  231. Need Hugs very stressed and worried....
  232. Please reassure me that we're doing the best thing...
  233. Surgery tomorrow
  234. Ugh! life is full is full of.................
  235. Pseudmonas A. UTI again
  236. We got our OT assessment report in the mail
  237. neurogenetics appt
  238. Autonomic blood sugar issues?
  239. Liver Biopsy?
  240. Another kidney infection...
  241. OMG Genetics just called. I'm shaking.
  242. Need Hugs Update, News, and Overwhelmed!!!
  243. TOTW What about your 'other' children??
  244. Jessica, how is Ethienne??
  245. Sharon, mom to ella and alex
  246. Big appointments on Monday
  247. Question Any Parent's Here Suffering from Issues Similar to there Children???
  248. Shwachman-Diamond Syndrome
  249. TOTW Have you begun to prepare for your child to age out of the children's system??
  250. Need Hugs Another Normal Result