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Everything posted by Teri

  1. Are you giving any ibuprofin? That may help calm things down a bit. Also may I recommend an excellent probiotic?We use Florastor Kids. My dd10 has PANDAS,Lyme, Bart. and Mycoplasma. She has taken a cocktail of antibiotics daily and the Florastor has protected her gut! As far as herxing reaction, I would make sure you have touched based with your Dr. Watch the foods your child is comsuming, food dyes and artificial ingredients for us have often led to behavioral changes and nightmares - specifically red dye for us.
  2. Well I'm not an expert .... just a PANDAS Mom who's been in the fight for 5 years now. I would say the high strep numbers are significant. I don't see any specifics regarding your child's symptoms in your recent post but I think it's a positive sign that you see improvement after 24 hours on antibiotics. Make sure you document these things so you have the info. for the appointment with the specialist! Hoping for quick healing for your little one! Teri
  3. Hi Anyone on here that sees Dr. B and is getting IViG with BCBS???? I am so frustrated right now I could spit nails. Looking to connect and see if I can move things forward. Dd 10 has been getting IVig at Dr. B's infusion center for the last year. Our insurance has approved the treatments (under specific conditions) but Anthem BCBS has not paid out on the last two claims. The office has my daughter's treatment on hold right now - which means we have skipped November's infusion. She really needed it and we have been going backwards since August. I've been calling BCBS nearly every day for two weeks and filed a complaint with the NJ Board of Banking and Insurance. I feel like both parties are not being honest with us. We are caught in the middle ... and my kid is suffering. Anyone else experiencing the same? Any advice? Teri Disgusted in NJ
  4. Good morning, Tomorrow afternoon we have DD9's 504 Meeting. Rather than just signing the old one we have opted for a meeting to discuss. Dd is doing fairly well. Our major issue is that the 504 states notification of strep in class. It didn't happen. She started monthly IVIG in November of this year. While trying to keep school absences to a minimum ... She was missing 2-3 days per month for IVIG alone. We would send her back .... And there was strep in the class. In her class alone I believe there were 12-15 case with multiple kids getting it multiple times. We were notified once. 😳 It felt like we were flushing $$$ down the toilet. Anyone have any suggestions for things that we need to have stated in the 504????? If you have a 504 for your child - what is helpful. Dd9 has PANDAS, Lyme, Bartonella, and Mycoplasma. We are 4+ years into this and IVIG is helping her heal. TIA Teri
  5. Hello all! Just wondering if anyone has any news on Dr.B's office. Dd has been a patient for the last three years. We have heard that he will no longer take our insurance. We didn't hear from the office but from one of the PANDAS forums. It happened roughly one week after our last appt on May 21. We have been having trouble getting one of Dd 's RX s filled .... A nose spray for allergies. It has been two weeks of run around from dr.B's office. The last thing that was communicated to is was from the CVS that fills her prescriptions. After multiple calls and electronic communications from CVS to his office - we need to make an appt. With Dr. B to have it renewed ( it had 2 refills on it). 😳. We don't see him for another month and I am in a panic that we won't be able to fill Dd's three abx prescriptions. In 3 years she has not been off of abx and is also being treated for Lyme & Bart. I am pissed that there has been no communication from his office. She cannot go off cold turkey and who else is going to prescribe that cocktail? In a panic and pissed , Teri
  6. Hi all We have been on this roller coaster for 3 years now. Dd8 was diagnosed at 5 - with strep & her 5 yr. immunizations plus combo flu- vac as her initial triggers. 6 months after diagnosis she had a tick bite and yup you guessed it - Lyme & Bartonella soon followed. So for about 2 years we also have been also fighting Lyme & Bart. She has been on a combo of 3 abx for about 2 years with lots of ups & downs. We do biweekly allergy shots to keep allergies from triggering symptoms. For 2 years we had no fevers at all which is pretty common for our kids I guess. Last year Dd developed an URI and ran a fever. After maybe 3 days her cough/ cold symptoms got better. Her fever held on for days. She was out of school for over a week bc I couldn't send her back with a fever. This year two days after Christmas she developed a high fever that laid her out for 2 days. Nine days later she is still running a low grade fever. Other than a scratchy voice and exhaustion she has no other illness symptoms. PANDAS symptoms however are obvious - separation anxiety, mood swings, restlessness, difficulty writing .... Just in time to go back to school. Has anyone else experienced something similiar ?? I did not take her to Ped. Who is Pandas friendly. She is already on 3 abx and I know they will tell me it's viral. Any words of wisdom appreciated .... Teri
  7. I will second Dr.Chansky's practice - they are very knowledgable! Not sure where in Central NJ you are .... But we are in Mercer County. It was about a 45 min. -1 hour drive to the office. Dd was too young at the time to really work with therapist but they gave USA consult. It was very informative. They also have a website that is helpful. I see your son has Lyme/PANS .... are you treating infections? Just wondering what specialists you are seeing?? Seems like you need to address the infectious triggers or you maybe already are doing that. Sounds like you definitely need to change things up! Hang in there Teri
  8. My dd is 8 and finally hit the 50 lb mark ... 150 mg daily sounds low to me. I think early on when we were first diagnosed at 5 she was about 40 lbs and on 250 mg. Have you had any labs run? There is an infection going on .... Or he is having exposures at home or school. Mycoplasma was another infection that took us by surprise. Sudden new symptoms and fatigue while already on daily abx. We had to add Cipro at that point. Sending good thoughts yours way .... Teri
  9. Hi all, I am just looking at Dd's latest labs. She is 7 and we are dealing with PANDAS, Lyme, Bartonella, & Mycoplasma. Strep numbers have steadily gone down and are now in normal range. Myco is still slightly elevated and she is no longer testing positive for Bart. She is still coming up positive on IGenex for Lyme. Currently she is on a combo of 3 abx but she has been in a flair since November. She is functional, does well in school, but struggles with OCD, fatigue, tics, sleep difficulties, and moodiness. We just completed new allergy testing and she will begin allergy shots within the week. Her last labs showed the following: Iga, Subclasses (1-2) 1- 41.0 - low 2- 2.3 - low Igg, Subclasses (1-4) Immunoglobulin G, Qn, Serum. - 723 - normal Igg subclass 1 - 375 - low Subclass 2 - 193 - normal Subclass 3 - 69 - normal subclasses 4 - 36 - normal Immunoglobulins A/G/M, Qn, Ser Immunoglobulin A Qn - 49 - low Immunoglobulin M Qn - 42 - normal Pneumococcal Im (14 Serotype) * not going to type out the 14 numbers but dd came up low in 11/14 types. I'm not sure what all of this means and I did not have copies of my own when we saw the dr. He thinks if we don't see positive improvement with allergy shots then we need to seriously consider IVIG at this point. Can anyone tell me what some of these numbers mean? Any feedback will be appreciated ! Thanks so much, Teri
  10. What a nightmare! My dd7 was already allergic to amoxicillin and Bactrim by age 3. Reaction to Bactrim also came on Day 9. She was diagnosed with PANDAS at 5. We were in a panic that she would not be able to take abx. She is also Lyme/Bartonella/Mycoplasma so she is on multiple abx. There may be another type of abx that your DS can take. Did your Ped. Prescribe the Omnicef? Contact your PANDAS dr. Do you see one?
  11. Thx ...... I am pretty sure they were hives. They resolved after about 36 hours with round the clock Benadryl. Fever lasted about 48 hours. She just had labs drawn the day before the hives .... Interested to see what comes up!
  12. Thanks for your reply. After speaking to Pediatrician, I am thinking the hives are an immune system response to a virus. She continues to run a low grade fever and we are dosing with Benadryl to keep hives/ itching at bay. If it continues I will take her in to see our Pediatrician tomorrow. We see Dr. B on Wednesday. She is suppose to have food allergy testing @ Dr. B's. Not sure if we will be able to have the testing done with the Benadryl in her system.? We already know she has food allergies but would like to have her testing updated. Keep trying to tell ourselves that maybe her immune system is healing. This is the second time that she has run a fever since January. Before that it had been almost two years - since PANDAS onset that we had seen a fever.? Hopeful
  13. Dd7 woke up this morning feeling itchy. After a shower she seemed to feel better and headed off to school fine. When I picked her up she told me an elaborate story about a kid in her class that had poison ivy. Then she asked me if she could catch poison ivy from someone. I told her she could not and she seemed relieved. As we got home she told me she felt itchy just talking about it. She was quieter than normal but other wise normal. I soon realized she was very itchy. I checked her and she was getting hives on her stomach, back, neck, and face. I took her temp. And she is running a temp. (100.3-101). We gave her a Benadryl tab @6pm and I just had to give her another one as she has hives on the back of her knees & is not sleeping well. She is an allergy kid .... Both environmental & food. There is nothing new - no detergents or foods.?? She is PANDAS/Lyme/Bartonella. The fact that she has a fever has me wondering. Guess we are heading to the Dr. In the morning. Anyone experience anything similiar? A little worried ....
  14. It's a positive that your Ped. Is willing to treat! Our Ped. Was also very open and suspected PANDAS early on. She initially prescribed Azithromycin for dd 250 mg for 5 days and then 5 off for 30 days. As soon as she was off abx symptoms would come back. We continued to beg for her to renew abx which she did at the above dosage. We knew we needed to seek a more aggressive course of treatment after 6-8 weeks of the onset. Ped. sent us to a Neurologist and Psychiatrist to rule things out & confirm diagnosis - which we did. We contacted Dr.B in Connecticut and waited 3 months for our first appt. We are in Central NJ and travel to see Dr.B every 4-6 weeks. None of this journey is easy but we hold out hope that we can find healing for our Dd. Praying you find the same for your DS as well. Dose Motrin several times a day if it helps ..... And stay strong!!
  15. Hello friend, As I read your post I can't help but think that your son's dose is kind of low. How old is he ? My dd at 5 and 40lbs was on 250 mg daily for a while. I would definitely advise you to have labs run. My dd has never cultured positive but we had high ASO that took 2 years of combo abx to bring it down to normal. The other thing to keep in mind is once the immune system is triggered just about anything can trigger a flare. Since this journey began (2.5 years ago) we have had flares caused by new infections - strep, mycoplasma, Lyme, Co-infections, stomach bugs, losing teeth, allergies, and exposure to others who are sick. The fact that he is flaring because his brother has strep is pretty typical. Have you also checked other family members to see if they are strep carriers? I have had to be repeatedly treated as a strep carrier (4 mos. of abx + 2 mos. of combo abx). And yes he could get strep while on abx - I would ask for a stronger dose or a stronger abx! PANDAS stinks and you have to take one day at a time! Dd 7after 2.5 years is still battling. She is functional and does well in school. We are currently in a 4 month long flare - have not been able to identify why we cannot get the immune system to calm. She is on 3 daily Abxs and we are dosing Motrin round the clock. We still see tics, OCD, and behaviors but Motrin helps. Dr. Is focusing on reigning in allergies as a possible source to a continuing auto- immune response. Hang in there .... It's a long journey. Can you contact your son's Dr.? Do you see a specialist? You are not alone! Teri
  16. I feel the need to respond. Our situation is very similiar. Dd5 was sick with fever, swollen adenoids, sinuses, glands, & tonsils. Took her to Ped. who could not find any obvious signs of infection - felt it was allergy triggered. We treated with Advil and allergy nose spray and dd was better. Five days later I take her in for her 5 year well visit where she gets a combination flu vacc. and whatever the 5yr. booster is. Within days she develops a mouth opening/ neck dipping tic. We also find out that the same day she had the well visit that her bestie is diagnosed with strep. One month later we are back at the Peds. as the tic has morphed into complex tics involving shoulder shrugs, arm flails, mouth opening, neck dipping, and eye blinking. Ped. Immediately suspects PANDAS and does strep cultures and orders labs. Negative cultures and sky high ASO - never had classic strep symptoms. We saw ENT, Ped. Neurologist, Psychologist (Dr.Elia) to rule things out/ confirm diagnosis. Almost 2.5 years later .... Here we are still battling. No more vacc. For her !
  17. Thx for the reply miss mom! Day 4 and she is still running a low grade fever with chest and head congestion. I took her to the Ped. yesterday. She is currently on a cocktail of 3 abx ( Cefdinir, Rifampin, & Cipro). Ped. Is concerned that she has a possible sinus infection. She is thinking that if we get to day 5 & she still has a fever - she needs a med. change bc what she is on May not be covering sinus infection . She wanted me to contact PANDAS Dr. To let him know what is going on. So frustrated .... As I emailed the Pandas dr. Via email. The response wasn't helpful - granted it was from one of the Nurses. I was told Dr. can't evaluate from pictures, email, and any med. changes have to wait until our next appointment on 2/26 at our next appointment. Dd7 has been out of school all week. Pediatrician is looking for recommendations from Pandas Dr. - who won't give any. I'm kind of pissed. I am praying the fever goes away today so I don't have to deal with what to do next. Also concerned about this fever that is hanging on. The more she stays out of school .... The more she doesn't want to go back. Worried , Teri
  18. Hello folks, Sitting here at home with my Dd7 who is home from school sick today (and yesterday). This is the first time in 2+ years that she has run a fever. The first one since the onset of PANDAS at 5. ??? Last week she woke up complaining that the roof of her mouth hurt. When I looked in her mouth she had an area in the back of her throat that was very red with small red dots. I posted asking for advice on what it might be. Some of you said yeast, Coxsaxies , irritation from coughing. I did not take her to Ped. For a culture bc she just had labs run the day before. Motrin seemed to help but she just wasn't herself. We have seen flares in tics and compulsions that was particularly bad on Sunday. Monday she woke up with a fever and very tight cough. I'm not sure but this could be a good thing.? She has been moderately flaring since mid November. Labs since September 2013 have been pretty stable with a slow creeping of the Mycoplasma numbers - which has our PANDAS Dr. perplexed I think. She is scheduled to have allergy testing at our next appt. next week. She had allergy testing at 3 and is allergic to many things including grasses, pollen, cats, nuts/tree nuts, medications etc... So we pretty much know what the results will be. Not sure if I should take her to see her Ped. Or not? Pediatrician is PANDAS friendly. Teri
  19. Hello folks ..... Dd7 (PANDAS, Lyme, Bartonella ) often complains that the roof of her mouth hurts. This usually means that she has something going on with her sinuses or possibly swollen adenoids. This morning she was complaining more than normal ....didn't want to eat, was whining about it. She has been very tired lately and complained that her stomach hurt last night. In the back of her throat she has small red dots in one area - tongue is white with dots?.. She is currently on Rifampin, Omnicef & Cipro ....plus Nystatin & Florastor. Motrin seemed to help the discomfort. She has been flaring since mid November not terribly but periods where she tics, mood swings, hyper, OCD, trouble sleeping - not debilitating though. Awaiting IGenex and other lab results now ... I would insert a pic but I am not sure how.? Any thoughts? TIA Teri
  20. Perhaps the Zithromax is not effectively getting to the Myco. My daughters Myco numbers sky rocketed while on Azithromycin. Dr. added Cipro which seemed to be the one for us. Her Myco numbers are high and didn't seem to lower too drastically. Maybe she needs a higher dose or an abx change. Crossing my fingers for you! Teri
  21. Good morning Just wondering if anyone knows what the discounted rates are for Dr.Jones at the Omni in New Haven? Where have folks stayed up in New Haven ? Any recommendations would be appreciated!! TIA Teri
  22. Ok thanks for the advice regarding the bloodwork ! We will do that! The traffic is brutal to Dr.B's! For morning appointments we will leave our house (just across the 95 bridge from Bucks Co. In NJ) at 5-6 am to beat rush hour traffic. We eat breakfast once we get up in Darien. Might just have to consider the train one day - is it Amtrak? Our next appt for Dr. B is at the end of Feb and she will get some allergy testing done as well. :-0. Dreading that but it has been about 4 years since she was last tested and she is allergic to many, many things including foods & meds. She had been in a nearly 2 month flair despite labs improving steadily over the last 7 months. Dr. B wants to look more closely at her immune system I guess.
  23. Thx Philamom for your responses. Not sure what we are going to do but want to try to have a little fun/ adventure before the appointment. I believe they will run probably Quest & IGenex at the appointment - the office called this morning. The cream will be a bonus so to speak as she has never had it before. And she has had nearly monthly blood work for the last 9 months or so. I am not going to tell her until we get to the appointment as it will cause unnecessary stress for her .... And then all of us! The appointment time is 4 pm on Monday and then we have to return home that night. :-0. Not looking forward to that aspect of it. We have stayed at that Double Tree near Dr. B and also at the Hyatt Regency in Greenwich. For the most part we do Dr. B appts - up& back in one day. It's not easy but it's cost effective. Quick question about Dr. Jones office and the blood draws. Please tell me that they send them to Quest & IGenex for you.? When Dr. B ran her IGenex we had to ship them ourselves. It was a big pain as we were traveling. Hope you have a good Philamom!
  24. Thanks hopeny! Actually we have been there after a Dr.B appt .... And we also loved it! We last saw Dr.jones in March and we ventured up to the Mystic Aquarium. Appreciate your response!
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