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Johnsmom

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About Johnsmom

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  1. My Lighthouse I am sorry your DD is going through this. i am going to look up that book you mentioned. Thank you to everyone for responding!
  2. Thank you MomwithOCDson. I remember you from a few years back. Your explanation makes sense and yes Colitis is autoimmune. It's right in front of my face but sometimes I think I just needed to hear it again. I need to be back on this forum and converse with all the smart moms! Tomorrow we have ANOTHER IEP meeting to discuss DS and the possibility of attending school 1/2 days. Thank you again!
  3. We have not had any immune tests in a while. I have not been on this forum for quite a few years. Not that I didn't need to be. DS is 14 and in eighth grade and I am about to pull him from school because he can't handle it anymore. He was just recently diagnosed with Colitis. We used to ride the roller coaster but not anymore. He has had no relief in months. I know the inflammation from Colitis can be causing the OCD, anxiety and depression but my gut tells me there's more to it. Right now he is on Steroid Taper (only been on steroids twice and a long time ago) and just started on Effexor. The GI Doc agreed to prednisone and then to get him to immunologist after. He is 5'10 and 115 lb bag o' bones. Any more words of advice would be appreciated. Thank u for responding.
  4. Can anyone tell me what experience they have with other infections that may cause OCD? No Lyme here.
  5. Anyone take their child to Dr Anju Usman in Naperville, IL? DS was a patient of hers about 3 years ago. Just wondering if she has changed her tune towards antibiotics and/or if anything else has changed. Thanks.
  6. I would love a copy too! Thanks for posting! Ann
  7. WOW! This is a great article! Thank you so much for sharing!
  8. DS11 had phosphatidylcholine added to IV chelation therapy. We did a total of 14 infusions in all but it wasn't added until the last few. I can't say I saw any improvements but will check my notes. LLM where we're you years ago when the doctors were making my head spin with all of this?
  9. Can anyone answer her question about low IGG 1. I am very curious. Thanks! [quote name='marilina' timestamp='1320316848' post='124835' I must say that I have found numerous post regarding low IgG1. (this is one:http://www.latitudes.org/forums/index.php?showtopic=5162&st=0&p=36504&hl=igg1&fromsearch=1entry36504 ) MAYBE is something that is not so common, in fact have low IgG1 is considered rare. it is interesting that PANDAS parents may experience the deficiency of these immunoglobulins. My daughter was also deficient in IgG1 what I have found so far is this: - That an IgG1 deficiency is rare (I mean not associated with other deficiencies) - That being deficient in IgG1 means that you can not fight viral and bacterial infections, where viruses and bacteria have specific protein: specifically, for example, there would be problems with the toxins produced by tetanus and diphtheria. but not only ... there are other viruses and bacteria that give problems with this deficiency - That the IgG1 deficiency is treated as CVID My daughter has had serious problems last year with the thetanus-shot. and therefore a lack of IgG1 may explain the severe CNS-reaction that she experienced . Also explain to me the devastating reaction to DTP vaccine at 10 months , vacine that has dropped her into Autism I ask you parents: HOW MUCH low are the IgG1 in your children?
  10. I would advise everyone to get their kiddos hearts checked. We went to neurologist first after ds had some sort of spell at school. We are set up to do a sleep deprived EEG. When we were in the appt I mentioned that DS complains of chest pain and has told me in the past his heart hurts.
  11. Thank you to everyone for responding. We are on vacation now so I have to make it brief since we've been in the car for 12 hours and I'm getting the evil eye from DH. Diagnosis is mild mitral Valve regurgitation and mild left pulmonary regurgitation. Saw APNP not cardiologist. Didn't even pronounce the name of pandas right. Left off the 's'. Didnt want anything to do with strep lab results and didn't pay much attention to the fact I have RF on both sides of family. Thinks he has exercise induced asthma. Gave us inhaler. Asked her about fatigue. Said go to different dr for that. He's fine. Come back in 3 years. We absolutely hated her. Even told her about DS's illnesses at age 4 and 8 where he couldn't walk. University of WI children's hospital is where we went and now we will be trying for an allergy/immunologist but I'm not getting my hopes up. DS will be 11 in August. We've been battling this since infancy.
  12. Thank you for your response. Does your child have symtpoms? Mine fatigues easily and has complained that his heart hurts. I'm really flipping out here and thinking back to those two illnesses where he was unalble to walk. (yes he's been tested for Lyme and is clean as a whistle,) He is also weak, uncoordinated and his knee and hip joints are very stiff. Guess we will just have to wait and see what the doc says.
  13. DS 10's Echocardiogram came back showing Mild Mitral valve Regurgitation. I posted a few days ago but did not receive a response. We have an appt with a cardiologist. Has anyone ever read this paper or does anyone have any advice about this. Very lost and scared here. Ann
  14. DS 10 echocardiogram came back showing Mild Mitral Valve Regurgitation. Long story short. He had a spell at school and we went to neurologist after an MRI was ordered. DS has complained in the past of chest pain. He fatigues easily. We now have an appt with a pediatric cardiologist. Dr K diagnosed DS PANDAS in 2010. I have rheumatic Fever on both sides of my family. Can anyone else chime in here? Could DS have had RF and it went undiagnosed? He has had two illnesses (4 yrs old and 8 yrs old)where he had a fever for two days and was unable to walk. I'm totally lost here. Anyones kiddos have heart issues? Thanks
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