Ashlynsmom

ENT ordered meds during and immediatly after surgery--not a PANDAS doc.I really don't know why we took her off Zith maybe because she was doing well and has abd cramping from too many antibiotics already...just picked up Zith after other antibiotics were complete.

DD12 had T&A July 27--had been assymptomatic since May (only a few things creeping in every now and again) Severe symptoms including sneezing tic for months. 500mg Azithr. 3x per week since Dec. Stopped Azith day before surgery and she was given iv Rocephin during proceedure. After surgery she was given omnicef 2xper day x 10 days; nystatin oral suspension 3x per day x 7 days;and pain meds. Azith was started back after 2 weeks. We requested tonsils sent off for path ENT very surprised with following: Staphylococcus Aureus(heavy), Streptococcus Viridans (moderate). They also did sensitivity studies and I have antibiotics her strain where sensitive to--interesting because I would not have seen this except for the fact that I requested path report. blood test repeated 8weeks post surgery and believe it or not the ASO was unchanged and the AntiDnaise was higher that ever before--still mostly assymptomatic. Immunologist says to just continue Azith. because she is doing well and we don't want to "rock the boat". Hmmm she doesn't realize I want to drive the boat! I want to be in control of this disease not have it control DD!. Visiting new Ped Infection Control Doc next week to see if we should change antibiotic to one that shows on her Path report (makes perfectly good sense to me) Even though she seems to be doing extremly well I would like to see infection gone out of her completly! ENT did explain he felt like tonsils where holding infection and this has helped but also the infection was in her body somewhere before the tonsils (they were just doing job) so infection must still be present. I feel grateful we have path report to work off of--- Hope this helps and good luck!

Yes, the PANDAS seems to be under control but the titers keep rising. Hmmm there may be thrush-tongue is patchy and white. How do I address the yeast? I hate to add antibiotic because of stomach pains but will if neccessary. We use probiotics but maybe not enough.

I know this is alot like your post dabel but a little different. DD12 is the one that had the sneeze tic and recently had T&A with high hopes of stopping this dreadful disease.No major symptoms since May but ASO of 409 and AntiDnaise of 776 in May.T&A end of July and tonsils looked like had multiple previous infections.DD has actually been doing well but had blood draw Sept 17(about 7weeks post T&A) Results-ASO 409 and AntiDnaise-871.What is this about?!DD just general not feeling well, still complains with chronic sore throat(not severe),slight stomach aches,pretty much daily headaches but nothing severe.Taking 500mg Azithrymician 3x week. Waiting on doctor to tell us what to do but truly floored with recent blood results! What does all this mean? Do we take a wait and watch approach (kinda scary for ms control it myself) or does anyone have other suggestions. Maybe these blood levels are not high enough to be concerned about? HELP...

Sounds like you have all your bases covered. Just wanted to give you hope--DD had hers out end of July and is doing extremely well--I know this is the right decision and ds will do great--tell him to eat lots of ice cream!!

Grace, Praying you find answers soon!

We never did pex or ivig because she got better before insurance approval but both ASO and AntiDnaise kept rising. But the sneezing stopped, the crowd anxiety and the seperation anxiety disappeared as well as the OCD germ thing (couldn't go to public places for fear of germs),the other fears left and finally the nightmares also. 6weeks post T&A and nothing has returned. Yes she got drip antibiotics plus 10 day's after (can't remember what was given but will get all reports this week) Azithromycin started after 10 days of other antibiotics. Her ENT just sent tonsils for path and asked for all kinds of test (not so sure he wasn't trying to prove wasn't strept at the time) This is not usually something that is done so I requested it but he had already decided to do it even before my request... Your ENT would know how to get it done. My husband actually did follow up for details but I will be getting the path report this week and can tell you more at that time (sorry) Whatever showed has made a believer of her ENT because he was VERY surprised at the outcome! I will post results of blood test in about a week ... Funny side note... During surgery a second anesthesiologist was present (due to a fear of ours of the outcome of the sedation due to previous experience) ENT was filling him in on DD'scase and he said OMG my son has PANDAS also! DD ENT was certainly wound up when he came out of surgery... Another ENT has now officially been added to the list of believing Dr.s due to this one childs experience! Prayerfully he can help others along the way! Keep up the battle because we are going to win the war!

Please google Irlen Syndrom or Scotopic Sensitivity Syndrom. My DD as well as non pandas son have this. I have spoken with Dr T about this on several occasions and he has told me he has also noticed some kids with light sensitivity. I do not believe the two are related but do believe the part of the brain effected by each syndrom is somehow making each of her conditions worse. After reading about this if you have questions or want me to elaborate more please PM me. You will be amazed at the symptoms similar to what you are describing in your child! Light sensitivity is real and effects many but only some are severe enough to cause problems. My DD's sensitivity and conditions of this syndrom get much worse during an exacerbation!!

So Glad to share!!! Had T&A on July 27--even though strep swab always neg the tonsils were sent to pathology and showed positive for strep and could tell had long term infection present. DD did great with no sign or symptoms of PANDAS then or since! Dd has stayed on Azithromycin since surgery and will be doing ASO and Anti-Dinase (sp?) next week. I will post results lets pray her levels are going down!!

Be careful of the meningitis as one of the vaccines is live for this. DD11 got this and started tic 6weeks later Dr. T's thoughts were that it may have triggered. Something about the 6week mark - vaccine titers are at peek. Start with researching the brand of vaccine your doc gives--

DD has a sneezing tic and took the azithrmycin pack for 5 days off 5 days than again for 5 days. Than after 5 days started 250mg 3x's/week eventually increasing to 500mg 3x's per week per Dr T. the tic went away after a month it stayed away for about 2months so we reduced antibiotic back 250mg. When the tic returned we started back to 500mg 3x's/week and it went away after almost two months and have kept this dose since the end of May. She also gets the terrible nightmares which are the last to leave. They are def related to PANDAS not the med's because she had them for months before diagnosis. Probiotics help with stomach pains. Clonadine was given by another doc for several months and did not touch the tic took off this when started the azith.(thanks to Dr T!) We have had to give Lexapro short term due to severe OCD, and anxiety the last round (it def gets worse each time she reoccurs). Helped her get through the rough spots. Hope this info helps you--

We have been to many many doctors including a week stay in Texas Childrens in Houston (That being a huge waste of money and time). No one has helped us like Dr Jane El-Dahr at Tulane. She not only will treat the child she will help fight the insurance company also-- This is actually how we got to her. DD11 needed IVIG or PEX and insurance refused to pay. My daughter got better before the approval but she was still going to work on it. She has studied PANDAS and has conferenced with Dr Swedo. Stated all the test and treatments talked by parents here. She insisted on taking DD tonsils out when ASO continued to rise even though no positive swab for strept throat--When tonsils were removed pathology showed much evidence of long term strept. Now we are waiting 6 weeks to repeat ASO and Anti-Dnaise while on antibiotics. She and her staff are awesome. Hope this helps feel free to PM me if I can give you other info. I really don't think you will go wrong with her. They will help you up front with insurance and financial stuff.

I know it's not Houston but close if nothing else comes up--- Dr. Jane M. El-Dahr, MD 1415 Tulane Avenue New Orleans, LA 70112-2600 (504) 988-7625 She's an immunologist and seems knowledgable on PANDAS

Dr. Jane El-Dahr Pediatric Allergy & Immunology Tulane University School of Medicine 1415 Tulane Ave New Orleans, LA, 70112 Phone Number:(504) 988-2300

My 11 year old dd started when she was 9 with daily chronic migraine headaches. I know this was the start because she had a severe upper respiratory infection (prob strep) then these severe headaches started. She basically had a severe headache for a year and a month when they stopped abruptly and one month after that this bizarre sneeze started that eventually turned into a sneeze tic that did not stop for 13 weeks. She still has severe headaches usually leading up to an exacerbation. Sometimes she just sits and holds her head crying and they go on for days but migraine meds only help temporarily. The headache is almost always in the exact same location in the right temporal lobe. None of the many doctors she has been to can explain or help these headaches--Sorry for that news but I believe the headaches are directly related to PANDAS.

Great information! I will have tonsils cultured-didn't know to ask. My dd weighs about 87 lbs Yes--family has had throat cultures and where negative--wish I knew how to go about checking cat and dog ? I believe the abx rifampin is what ENT said he wanted to use--and looked it up-it is the one that turns tears and urine red--great to know because it will ruin contacts and she wears very expensive tinted contacts for a light disorder she has -- that would have been great

I know this topic has been addressed but it never hurts to re-visit every now and again. My dd has been symptom free for about 1 1/2 months and on antibiotics but her ASO is higher than ever before and Anti-Dnase is also high. Dr thinks it is now a good idea to remove tonsils due to chronic sore throat. I am aware that symptoms may return in full force after this surgery. What preventative measures can we take after surgery to help this? My immunoligist is great and has treated PANDAS before but this is all new to our ENT. He is open to suggestions that have benefited other PANDAS kids. Dd is on 500mg azithromycin 3x/wk as of now, surgery is scheduled for Tues.

My dd has PANDAS but also a visual perception issue called IRLEN syndrom or Scotopic Sensitivity Syndrom which is actually a severe sensitivity to light as which causes many visual perception issues you all are explaining seeing in your children. I have mentioned this to Dr. T who finds a coorolation in some of his patients and light sensitivity. I do not believe the two disorders are related but i believe because of the part of the brain that is affected one makes the other worse. My dd is one of those children with the sneezing tic and it is sometimes directly related to the change in light as well as her PANDAS status at the same time. Very complicated I know but I am very familiar with this disorder because my son has it also although he does not have PANDAS. Please look this disorder up on the computer, it may shed some light (no pun intended) on the subject of visual perception problems. If any of you have any questions please contact me, I am happy to talk to anyone about this other bizarre disorde.--By the way the symptoms of Irlen definantly get worse during an attack of PANDAS.

All of this is very informative! A few thoughts---My dd's doctor's here (going to a new one Thurs) do not feel the antibiotics work since her titers continued to rise and she started the symptoms while on high doses. Some battles are not worth making doctor mad over--Is the antibiotic issue? The primary care continues to site journals that do not back up the use of abx. Therefore, I guess it is safe to say she got out of this excerbation on her own--she hasn't been on meds in about 6 weeks. Does anyone think this leans toward her getting better? How else would she have gotten rid of the antigen unless bodies immune system kicked in? Or is the antigen prolly still there just not as many antibodies fighting so symptoms lessening? Is it only maturity that closes the BBB? I am given hope that some of your children have gotten better after these proceedures! Please continue telling stories that contain hope for us that are in turmoil at this time. If anyone has more thoughts for me please keep this going--I will be out of pocket a couple of days but will try to check in. wornoutmom--please let me know your decision and how it goes for your son whatever you decide.

Wow, tough question. The problem is that if you aren't in an exacerbation, then it's harder for the doctor to justify IVIG to the insurance as necessary -- and more importantly, it's hard for the doctor to show efficacy (in case you would need it again). In addition, there are some risks with IVIG so if you seem in a good spot, I wouldn't mess with it. While I think alot about the comment of the other post "we want to win the war not just get a truce." I think it's a lot easier to recruit all the support when the enemy attacks and harder to get justification during the truce. For what it's worth, continue going for the approval -- you don't have to use it if you get approved, but having it approved is half the battle. You can then refer to the approval later if you need it -- or provide even stronger evidence later if an exacerbation occurs. So my recommendation, keep going for the approval based on prior exacerbations, but don't use it unless you're in an exacerbation. I say this because everyone feels justified when there is noticable improvement. Everyone feels some doubt when the child is either appearing well, or there's no noticable improvement. Buster Great thoughts as always Buster. I value your input very much even though you do not know me--I read alot of things on this forum. Please continue your thoughts--my questions are not to disbute but to try to find answers and I value your thoughts!! I am going to request titers drawn tomorrow--the last time she was free for 2 months her titers where still rising strangely enough. One thought presented to me is that with IVIG--she is given healthy antibodies and therefore may get her immune system healthy over the summer when not exposed to so much strep, therefore maybe helping the 'dreadful sneeze' not return. I am so confused over all this to whether this is the case or if its primarily to stop an exacerbation while it is occuring?? Is this in hopes of a cure or kind of a band aid? Another thought is choosing IVIG over PEX at this time because of the reason stated above instead of "cleaning" plasma of unhealthy antibodies which wouldn't be as present if not having exacerbation? I do agree with you also because I am ALWAYS the one that says if it ain't broken don't fix it! With your knowledge as of now---She has been batteling this for a year this month. The last time she began was about 9 weeks ago--Symptoms started abruptly and the sneeze started and symptoms intensified to be the worse episode she has experienced--Do you believe it will return even worse again or do you believe there is a chance it won't return? I honestly don't know what would happen if it gets worse and I would do anything I had to to keep that from happening! This sneeze occurs every 2 seconds as long as she is not in a deep sleep (which doen't happen often)--she can't talk, can't take a deep breath, can't sleep, etc. Gosh I wish a stone tablet would fall on my head with all the answers and tell me exactly what to do for my child!! Thank you for letting me pick your brain as I feel sometimes I am all alone down here in Louisiana!

My 11 year old daughter was recently in a very bad episode of PANDAS. She gets the sneeze tic along with severe OCD issues. She sneezed for 7 weeks and just stopped abruptly on Sunday. Leading up to Sunday I had noticed she was starting to feel better and symptoms were getting better. She feels really good today and is back to her old self. Our problem is that we have been fighting wit the insurance company to approve IVIG and I got a call from a docttor today--we were persuing PEX. Trying to get one or the other approved. This question is actually has anyone gone ahead with either proceedure when the child was free of symptoms? Would it be beneficial to do treatment while symptom free or are you not achieving anything? I have different thoughts on this working in my very simple mind and hoped someone out there that understands this dreadful disease could help guide me in the correct decision on what to do for my child.

Lyme IGM AB panel 12-4-09 IGM AB bands present none---AB IGG panel band present 66 kDa Does this make sense? Should I have the western blot re-drawn? I am confused if I am being told dd may have Lyme instead of PANDAS or along with PANDAS or is this maybe what caused PANDAS? Where can I get GDU product and I love the epsom salt remedies--we believe in the epsom salt!

Her test for Lyme was neg. I will def try the magnesium and epsom salt! We massage and place the heat pads with meds and have changed pillows. She has bad headaches right now too but this has been one of her symptoms all along. As far as the deep breathing--she would love that! Waiting IVIG and she said the first thing she wants to do when sneezing stops is take a deep breath in and let a deep breath out

Yes Ashlyn actually has the sneezing tic (for 4 1/2 weeks this time) but it is not a forceful sneeze to where the head is slinging at this time. The sore neck has been present before but has gotten severe the last couple of days.

My dd has been complaining with very stiff and sore neck. Can anyone explain what this is from and what I can do to help?