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Johnsmom

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Everything posted by Johnsmom

  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
  15. DS 10 90 lbs takes only 20 mg a day. I've been told to give zinc away from iron. Was also told with young picky eaters to use liquid zinc. If they are deficient it will be tasteless. When it starts to taste like something to them (metal) that is when it is no longer deficient. it does look like you want to avoid really high doses: http://jennifercopley.suite101.com/zinc-helps-prevent-osteoporosis-a145397 Zinc Toxicity Overdosing on zinc can cause stomach cramps, nausea, vomiting, diarrhea, and headaches. Regularly taking doses of zinc that are too high can actually reduce HDL (good) cholesterol and overall immune function, as well as contributing to a variety of other health problems. Adverse effects are associated with long-term daily zinc consumption at levels higher than the established tolerable upper intake level (40 mg for those 19 years of age and older, 34 mg for those aged 14-18, and less for children). Read more at Suite101: Zinc Helps Prevent Osteoporosis: Zinc Through Natural Sources or Supplements Supports Bone Health | Suite101.com http://jennifercopley.suite101.com/zinc-helps-prevent-osteoporosis-a145397#ixzz1u99DSjWy
  16. Interesting. I've read giving zinc to picky eaters can help as well.
  17. Anybody know how to interpret? Everything appears in range. Dr k ordered these. Complement total CH50 (sample slightly lipemic) result In range 60 ref. 31-60 C3D immune complex result In range 5 Ref range 2-25 Immune complex detection by C1Q binding Result In range <1.2 Ref range < or = 25.mcg
  18. DS10 had some kind of spell in gym class. The local doctor ordered an MRI. He had it today and he did great! Now we are set up to see pediatric neurologist at Universtiy of Wisconsin hospital. DS was diagnosed there when he was 5 with PDD-NOS. Since then we have been to a few DAN docs, ended up doing 7 lower dose IVIG's and just had two HD with Dr K. Last HD was 12-1-11. We dont get to see neurologist until June 4th so im wondering what he/she will be looking for. We of course suspect seizure activity. (I know an EEG shows seizure activity only when you are experiencing one) Will the Basil ganglia be inflammed? Will the neurologist find nothing? Any advice experience?? thanks! Ann
  19. Yes , it sure does sound like pandas/pitand. After all, isn't that what autism is? Is swedo just creating a new spectrum?
  20. Thanks worried Dad. How spaced apart were your sons IVIG's with dr k? We have been to him twice. The first dose was in June of 2010 and our son had about 2 good weeks after month 3. Then we decided to go the monthly route with another dr. We started too low and never got DS up to 1.5. We decided to go back to Dr K in Dec 2011. DS was really good after IVIG but that I attribute to the Solumedrol. Then it was up and down for 4 months until a few weeks back when DS started doing really well. Luckily Dr k was able to see him and told us to up abx when we suspected re-exposure. He also said he would get us in immediatly if he slipped. Im afraid that has already happened. I had to increase his abx a week and a half ago and we haven't seen much improvment. DS was on regular Augmentin after the first hd IVIG but Zithromax always seemed to work the best for him. DS always has elevated ASO but never has elevated anti DNase and dh has had elevated anti DNase on several occasions.. I'm waiting to hear back from Dr K. He usually answers right away but I have not heard for him yet. Again, how spaced apart were your sons IVIG's ? Thanks!
  21. Is it a waste of money to have HD IVIG treatment when there is an underlying infection? DS10 has a constant rise in ASO titers but no rise in anything else. His last HD IVIG was in December. We saw some good results about 3 months after but then he slipped. I upped his abx dosage but that has not helped. Will someone please chime in whether or not another HD will help? thanks johnsmom
  22. Anyone ever had Raji Cell test run by their doctor or know anything about it? Our doc is having us run Raji Cell CIC along with C3d and C1Q. Thanks! Johns mom
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