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mom md

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  1. Christie- Your info on the IVIG with Dr. K was very helpful. We had a phone consult with him a few weeks ago. I am trying to see if I can get it done in Charlotte. If not, we will be heading there too. What is the "turning back the pages" thing I keep seeing people speak of? Thanks, Claire
  2. Sounds like it definitely could be PANDAS to me. My son has PANDAS and some very similar issues. Auditory processing, sleep issues, involuntary movements, etc. I would ask to have a strep titer done. There is a researcher in Florida by the name of Michele Cunningham who is developing a blood test for PANDAS. I would ask your neurologist if he could look into getting her blood sent down there if he can. Looking back most if not all of Carter's issues can be explained by PANDAS. The basal ganglia functions to filter thoughts etc that come into the brain. When it is not functioning well all things are equally competeing in the childs brain which can lead to all of the symptoms you spoke of. Hope this helps. Claire
  3. Yes, and Yes to answer your question. I am a doctor and I think my OCD tendencies are what got me through medical school. I always make sure I dot every "i" and cross every "t"! I also chuckled when I read Dr. K's website because the mom he was describing was me! Claire (mommd)
  4. Carter continues to improve on Azitnromycin but I am trying to get a plan in place if things start to relapse. I spoke with Harvey Hamrick,M D who is the chairman of pediatrics at UNC and he referred me to Eliana Perrin, MD who is on faculty has done some research with Swedo. She e-mailed me today and said she had a fair amount of clinical experience with PANDAS and she would be happy to help guide me through our treatment. It is nice to know she is in Chapel Hill and just 1 1/2 hours away. I sent her our timeline of symptoms and we will have a phone consult soon. I will keep everyone posted on what she says. Claire
  5. Great job. Your daughter is beautiful. I know someone who is an anchor in Charlotte and I am going to see if I can do the same...spread the word!
  6. Thank you so much for your response. It was very helpful. We went to the docotr today and he agreed that we should start with two months but may need to stay on it prophalactically if he continues to flare. The ibuprofen is a great idea and makes good sense. I went to the store today to get all my stuff-omegas, DHA, etc. I spoke to the women there about 5HT and I may go back and get some later. I feel the stress of this whole event has probably depleted his seretonin stores and it might help with his moods and sleep. The store was out-apparently women are buying it up to control carb cravings and she said it sells out fast. I was just going to do 50mg. I may wait on that awhile though as I see how he does. The whole thought that future exacerbations may be more severe is very scary and makes me want to keep him on something. My docotr seems pretty willing to work with me which is nice. This forum has really been a wonderful resource and my thoughts are with you and your daugther. Thank you again, Claire
  7. After being on Penicillin for 7 days with no improvement I called and got him switched to azithromycin. I think I can already see improvement. His big choreiform movements are now simple hand tics and he still has emotional swings but only 1-2 a day. I am starting to see my child emerge from the fog. He still seems a little like the absent minded professor though. We are going to the doctor in the morning to follow-up. Just a few questions... One doctor said keep him on antibiotics for one month and the neurologist said two months. What do you all think? When and should we re-check titers again? What recovery things can we do to help him heal and help build up his immune system? Are there any dietary changes or suggestions (he already is on the omega supplements? Do you get routine strep cultures or do you just sit back and wait for symtoms to re-appear and then act? How long does it take to recover from a bad episode? What is Abilify and 5HT? I guess now that we have diagnosed the PANDAS...where do I go from here? Thanks, Claire
  8. Carter has officially been given the diagnosis of PANDAS by the neurologist. He had one of the worst bedside manners I may have ever witnessed but he does believe in the diagnosis. He wants to get an MRI with a focus on the basal ganglia. I hate to subject Carter to it if it won't change the treatment but in the back of my mind I want to see that there are no other abnormalities and if his basal ganglia looks involved. He recommended Carter stay on Amoxicillin for two months. After reading the info regarding intracellular and resistent strains I am planning to switch to azithromycin after 10 days. The cardiologist did say his heart looks fine. The neurologist said I was lucky...he was one of the doctors that did believe it was a disease. He thought his movements were chorieform tics. He asked me to video them if I could. He also said we were trying to treat his sleep without success because treating the night does not fix the day and vice versa. He said you have to treat the whole disease. He wants me to give Carter 25mg of Seroquel to help with his movements. Has anyone tried this? I gave it to him tonight and he could barely keep his eyes open after 1 hour. That scared me. I am tempted to hold off and just let him move as much as he wants while we see what the antibiotic does. I spoke to someone tonight that had her daughter diagnosed last year. She struggled as we all did finding someone who would listen. Her daughter has almost made a full recovery. She was on Omnicef for 5 months. She now takes her in prophalactically to check strep cultures. I was very down today after we got the diagnosis but felt better after talking to someone that had results. She told me to expect a "sawtooth" recovery pattern. Carter was not doing well on day 3 of his antibiotic, day 4 seemed almost back to normal, and the day 5 was back having issues again. Seeing him be almost normal on day 4 makes me know he is still there and I just have to pull him back out. My next task is to find a pediatrician who can work with me. I am planning to leave my old group. They misdiagnosed my daughter at day 5 of life with a virus when I came in saying "she is vommitting bile!" Turns out she had a midgut volvulous where her bowel was kinked off and she almost died. I stayed with the group hoping they would listen to me when I asked for help but apparently I was wrong. Once agian, we are the only ones who can be advocates for our child. My other concern tonight is his titers were so high (ASO 1750, and antiDnaseB 1320 IU/ml). It makes me worried we have let this go for so long and it may be harder to treat. Carter had a sleep study two years ago because he moved all night long. I wonder now if it was the PANDAS. On a positive note, the mother I spoke with tonight said they are training the doctors at Duke that PANDAS is real. Does anyone know anyone in that area who is good. We don't live too far away. Thanks again for all your concern, support, and info. Claire Su
  9. Thank you all so much for your care and support. Carter seemed much better today but I am cautious to see if this is a true improvement or just a better day. He has been on the antibiotic since Wednesday night. We are seeing the cardiologist tomorrow morning and the neurologist tomorrow at 1:30. I will report back what we find. Carter has not had any motor delays yet only weakness occasionally after a long day. His mood was better today and I saw a few shoulder rolls but not the big chorea movements that I saw the past week. I am an obstetrician & gynecologist so I know just enough about neurology to get overwhelmed quickly. I do have access to a library that will help me gather articles so I will continue to read and educate the pediatricians I come into contact with. I am working tonight so I must go but I will report back what I find out tomoorw. I did e-mail Dr. Swendo and am waiting to see if I get a reply. It seems pretty clear to me though that the bacteria is getting more resistent to the antibiotics and our bodies immune systems are overreacting in response. This experience has also made me realize how much about medicine we still do not know. I am off to do a c-section! I will repot back tomorrow and once again thank you to you all. Claire
  10. Thank you for your reply. I talked to a pediatric infectious disease docotr and she did believe in SC and PANDAS but still did not have much information. She has only seen two kids in her career since she works primarily in a hospital. She is someone I went to medical school with and now lives in Houston. She told me to call a pediatric infectious disease doctor here in Charlotte. I spoke to one on the phone who said she would help me with treatment and following titers but wanted me to go see a neurologist to help us. We were being seen by probably the best pediatric neurologist here and she recently left her practice to start a sleep practice. She has a non-compete policy so we can not see her for anything but sleep but I e-mailed her and she thought the post-streptococcal auto-immune dx made sense. Tomorrow I am going to call the pediatric neurologist and rheumatologist and see where I get. I don't know if we have an immunologist but I will make that call too. Carter seems to meet the SC diagnosis better. He is doing OK with his school work but literally can not stop moving. His movements are continuous and wave like-they are not repetative like tics. He looks like he is dancing. I decided to take him off his neurontin which was given to him to help him sleep. I want to really see if the antibiotic does anything. Before he was diagnosed with SC he was given a diagnosis of PLMD by the neurologist. PLMD is periodic limb movement disorder. He kicks and arouses anywhere from 8-14 times an hour. He is also taking iron supplementation to raise his ferritin which is supposed to help. His movements seemed a little less today and I hope that was because the antibiotic was helping, but yesterday they were awlful. Also, interesting enough my other son was diagnosed with strep throat yesterday. He awoke with a high fever and I took him in. He is on Clindamycin because he had a funny sore on his foot that worried me and the pediatrician for MRSA. He seems to be doing well today. I spoke to my friend today who is a neurosurgeon today and he said he would do some legwork around town and see if he could find anyone else to help me. He said the infectious disease doctor I talked to was great. From what I could tell she believed me but did not have much experience treating it. I really feel he has SC and just want someone who can sift through the literature and come up with a treatment plan. He has not had any arthritis only muscle fatigue but primarily at the end of the day. The neuropsychiatrist that made the diagnosis believes strongly in it but I don't think he is up to date on the literature but in a fix he could help me too. I think he thinks SC and PANDAS are part of a pectrum of disorders. I have completely given up on my pediatrician. He wants to help but I can tell has doubt in the disease. There is someone in their practice who did an infectious disease fellowship and he said he did not think PANDAS exists. He stated he wanted to see something besides retrospective studies...and I replied..."well while I wait should I just watch my son deteriorate before my eyes!" I have no problem bypassing my pediatrician altogether and will probably switch groups when this all settles down. I have two pediatricians I work with which said they would be happy to help me through this but once again they have no experience. I know there is some doctor who is a movement specialist in Chapel Hill if I can't get help here. Unfortunately I was unable to get his throat cultured before he started the antibiotics. I called my pediatrician and by the time we talked he had already had three doses. I have no idea if he is a carrier. I threw out everyone's toothbrush today and when we get back from disneyworld I will take my other kids and my husband and I to get cultured. Someone even told me to have my dog checked. I can not imagine going through this without any help. My heart goes out to everyone who has delt with this. I am in the medical field and this whole thing is frustrating. Once again though my mother's instinct told me not to believe the ADHD diagnosis. When he finally started having full blown neurological looking movements I finally pushed to see someone else. I know I will eventually find the right doctor but it is very frustrating. I can't imagine going through this alone. Thank you so much for reaching out to me. I will call my friend in Houston and get her to look up the data on Azithromycin. Also, my reading told me to let Carter rest. That is a very hard task with a child that can not stop moving. I also feel like he has spent the past 1-2 years seeing multiple doctors trying to figure this out. He loves baseball and I hate to tell him he can not play. I spoke to the coach and filled him in. I told him to be patient with him and not let him exert himself much. We are off to DisneyWorld where I hope we can just relax and enjoy one another. My son seems very relieved that we have finally figured out this is all beyond his control. Thanks.
  11. My son Carter will be eight next month and he has just been given a diagnosis of Rheumatic chorea or PANDAS. I am a physician myself and they appear to be different. Carter 's symptoms are primarily difficulty in stopping moving and he appears to have chorea like movements. His movements are bilateral and very dance like. I have caught him on two occasions playing the piano but usually the are dance-like. I know tics are repetative and his seem to all be a little different. He has had a few tics but most truly seem chorea like. According to my reading chorea is extremelly rare but he fits the desiption. His ASO titer was 1750IU/ml and his antiDNaseB was 1320IU/ml. His ESR and CRP were negative which makes me think this is a reoccurance. Looking back his symtpoms started at the beginning of kindergarden and truly waxed and waned. Since November they have gotten much worse. I was given the ADHD, anxiety, OCD, PLMD diagnosis but the chorea like movements did not fit. Finally someone check his titers and it all seems to make sense. We are seeing a pediatric cardiologist Tuesday and are trying to get into a neurologist. From my reading on Syndenham's chorea it seems 89% of children recover within 2 years even without treatment but reading these forums makes me a little worried. It sounds as if these relapses are fairly common and can last for much longer. He is on amocillian so we will see what that does. If anyone have any helpful tips on managing the chorea type movements please let me know. He is emotionally labile and has very poor sleep. He has had some memory issues, headaches, and obsessions too. I can manage these OK at this time but the moving is really disruptive at school.
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