jezzabella Posted October 31, 2012 Report Share Posted October 31, 2012 Hi, I just came across PANDAS last night while trying to figure out what is going on with my son. He meets every single one of the symptoms. Also both myself and my husband have auto immune diseases (I have MS and my husband has psoriasis). I also am a carrier for strep and have never tested positive or shown the signs of it. This has been going on over 2 years now. He has been put on every anti psychotic and nothing helped. He also has been given just about every stimulant adhd med which made him worse and then made the ocd worse. He was given Strattera which is a non stimulant and it had no effect. I was not paying attention to all the details of when it happened or what was going on when it happened because he is autistic so I just thought it was because of that. I had never heard of PANDAS until last night. However, my husband specifically remembers going to pick him up from school one day and his teacher said it was like someone flipped a light switch with my son and he changed literally over night. Long story short, I am at my wits end. I have taken him to 6 different psychiatrists and no one can help him. Everything they try medication wise either does not work or only works for 2 weeks then stops. When I came across PANDAS last night it made so much sense then. I honestly believe my son has this however I cannot get any of his doctors to even entertain the idea of it. I do not understand why they are so hesitant to write scripts for anti-biotics but will hand out anti-psychotics like candy. I really need any help you all can give me. I do not know how many mg of the anti-biotic my child needs, he is 7 years old and 58 pounds. Also, which pro-biotics to give him. I am going to have to take things into my own hands at this point and I need any help or advice any of you can give me, thank you so much for reading this! If I cannot help him, the next step is they want him to go into an inpatient facility and I cannot handle that and he cannot either. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted October 31, 2012 Report Share Posted October 31, 2012 If you think that your child has PANDAS, and the docs won't even take a look at the notion, I suggest that you see a specialist ASAP. What part of the country are you in? Most of us find it necessary to travel. I am attaching a link with referrals. We can vouch for, or know several people that vouch for Dr. Bouboulis, CT; Dr. Latimer, MD; Dr. Elia, DE (not currently in practice but will be soon); Dr. Triffiletti, NJ; Dr. Kovocevic ILL. The 2nd link I am attaching is from Dr. Kovocevic's Site - regarding PANDAS. http://pandasnetwork.org/resources-new-research/treating-physicians/ http://webpediatrics.com/pandas.html Warm wishes and hang in there! Link to comment Share on other sites More sharing options...
LexMom Posted October 31, 2012 Report Share Posted October 31, 2012 I know how you are feeling. We only really got a response from a doctor when it was discovered that my son had low IGg levels. Only then did they discover that his pneumococcal titers were low. They gave him a booster and he has been a totally different kid, although not 100%. If your child is having problems with getting sick a lot then I would ask about checking his immunoglobulin levels. My son had to have his tonsils and adenoids out before the doctors would believe me when I told them that it was not normal for my previously healthy child to be getting sick so much. He has now gone 5 weeks without needing antibiotics. It is my belief that immunity plays a role in PANDAS. Although I am no doctor. Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted October 31, 2012 Report Share Posted October 31, 2012 I am so sorry to hear this........However, I would seek treatment ASAP from a DAN doctor if you can find one or an integrative Pedi. What part of the country are you from???? Link to comment Share on other sites More sharing options...
airial95 Posted October 31, 2012 Report Share Posted October 31, 2012 If you think that your child has PANDAS, and the docs won't even take a look at the notion, I suggest that you see a specialist ASAP. What part of the country are you in? Most of us find it necessary to travel. I am attaching a link with referrals. We can vouch for, or know several people that vouch for Dr. Bouboulis, CT; Dr. Latimer, MD; Dr. Elia, DE (not currently in practice but will be soon); Dr. Triffiletti, NJ; Dr. Kovocevic ILL. The 2nd link I am attaching is from Dr. Kovocevic's Site - regarding PANDAS. http://pandasnetwork.org/resources-new-research/treating-physicians/ http://webpediatrics.com/pandas.html Warm wishes and hang in there! Don't forget Dr. Murphy - St. Petersburg, FL Link to comment Share on other sites More sharing options...
Missmom Posted October 31, 2012 Report Share Posted October 31, 2012 I am private messaging you, please check your inbox at the top right corner. Link to comment Share on other sites More sharing options...
cobbiemommy Posted October 31, 2012 Report Share Posted October 31, 2012 (edited) Jezzabella, First off, welcome to a group of wonderfuf, intelligent and supportive parents. You will learn a lot from these folks. Step 1) Get an appt with one of the docs listed previously. If not possible, find an LLMD through Lymenet. Here's why: your child may not have Lyme and coinfections, but these doctors know about chronic infections and autoimmune components. They also will be more likely to test your child for strep, IG levels, mycoplasma, and whatever else you request. Step 2) Get yourself tested by both swab and culture for Strep. Get treatment. Use probiotics. Step 3) Get educated. Read anything you can get your hands on about PANDAs. There are some helpful links at the top of this page. Read PubMed articles by Dr. Susan Swedo and Dr. Madeline Cunningham that refer to PANDAs. Step 4) Probiotics many of us use are Florastor and some variation of Bifidus or Culturelle. Stay away from anything with the prefix strep in the ingredient list. Step 5) Maintain calm. There is a ton of information out there. Some of it is wrong. Know that with proper care, your son will get better. It may take a while, but he will get better. All the best to you! Cobbie Edited October 31, 2012 by cobbiemommy Link to comment Share on other sites More sharing options...
jezzabella Posted October 31, 2012 Author Report Share Posted October 31, 2012 Thank you ladies for all the wonderful information. We live in Huntsville Alabama. The only DAN doc we have here was Dr. Mary Sullivan and she moved to Florida. My son used to see her she did a test for yeast once and found he had 10 times the amount he should have. She tx him with diflucan for 2 months and that's when he started speaking in full sentences. My son only has Alabama Medicaid for insurance so we will have to pay out of pocket for every doc visit, travel expenses, lab work, etc. All the peditrician did was give him a aso blood test and it was negative so she will not even entertain the idea of more testing. I've emailed Dr. K, it says he will respond in 24 hours but that was a few days ago and I haven't heard anything back yet. I know I can get a IGg test from great plains lab but I don't know if you have to have a doc order for it. I will check on this. His peditrician did refer him to a pediatric neurologist here but said it could be 6 months before he can get in. We are waiting to hear back about the appointment. I am going to read the links you guys posted. Thank you so much! Link to comment Share on other sites More sharing options...
pr40 Posted November 1, 2012 Report Share Posted November 1, 2012 Yale Child Study Center that treats PANDAS/PAns accepts Medicaid. You may want to contact them. Link to comment Share on other sites More sharing options...
Pandasphilly Posted November 1, 2012 Report Share Posted November 1, 2012 Did you have a tonsillectomy if you are a carrier? Treatment is extreme because this disease is extreme. We did T&A on all kids, which I believe has helped reduce tics & lower exposure risk for my son. Also my husband and I may also do a tonsillectomy as long term it will better protect my son. Thankfully our ENT understands our situation. Now if we could just find the time when we're always in crisis mode..... Also my son age 10 started augmentin xr1000 2x day when he was 65 lbs. now 85 lbs (pretty big weight gain from ivig and antibiotics) and he's still on the same dose. Really reduced his symptoms but still severe Link to comment Share on other sites More sharing options...
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