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Everything posted by AmbersMommy

  1. Hi all, I haven't posted here in a long time. Maybe a year or so. Not sure exactly. My daughter has had PANDAS since she was 6. She is now 13. Our life sucks. I don't get to sleep at night. She gets up at night all night. Last night it was about 2:30 in the morning and she never went back to sleep. She yells all the time. She has very obsessive odd thoughts and the list of symptoms go on. She has been diagnosed with an intellectual disability. Who knows if it is part related to her PANDAS. I surely don't. I am tired. I don't want to be her mother anymore. I have no life left. I can't work. We went bankrupt. We lost our house. There is no end in sight. We have tried antibiotics, IVIG, essential oils. You name it. We have tried it with some success, but not nearly enough. I have tried my best. I am just so tired now. I am seriously considering giving up our parental rights and handing her over to the state. I would never have considered it before because I thought they wouldn't be able to help her. The thing is I don't think we can help her either. I just can't do this anymore. Why am I posting this here? Because I now think that there is a point when you have to say uncle. I never in a million years would have imagined that there was. I entertained the thought that I am a terrible parent. You know what? I am not. I gave up everything for her, a career, a home, my life. There is nothing more I can do or give.
  2. My daughter was diagnosed with PANDAS in 2010. She had autistic type symptoms at the onset. Eye contact was virtually gone, language regressed. I could go on. She has had IVIG and many different antibiotics. The autistic type symptoms have come and gone and come back again. They did get better with IVIG and antibiotics. Then they got worse even though she was still on antibiotics. I have been wondering if some of the symptoms I have attributed to PANDAS are permanent. I wish I knew. I know she has pandas because she had the Cunningham panel done. I just don't know for sure if she has autism on top of it. I have a hunch that PANDAS and autism are two different sides of the same coin. It is hard to figure out what to do when you question whether a symptom is permanent or not. Should your focus be on trying to find the cause so you can seek a treatment or should your focus be on alleviating the symptoms?? I am right there with you. It is 6 years later and I am still trying to figure out how to help her. She is better overall. Just this past 6 months her muscle strength and stamina have gotten a lot better. However her eye contact has gotten worse. Go figure. Keep on trying. Trust your gut and be good to yourself. Good luck.
  3. My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems to be working for that. With the Lyme under control I think the PANDAS is on its way out. This has been a long road, and I don't know if we are at the end of it or not, but it looks like we are at least seeing the light at the end of the tunnel!! Never give up. You never know what is around the next corner.
  4. Hi, My daughter was diagnosed with PANDAS and Lyme back in 2010. We had IVIG treatments for a year. Her worst symptoms including hallucinations, OCD and sensitivities to light and sound all but disappeared. However, we had and still have major issues with her ability to pay attention. She also has started laughing uncontrollably and can't really tell us what she is laughing at. Her teachers say they aren't able to teach her anything at this point. She started IVIG treatments again this year. She has had 5 of them. The laughing has gotten worse. One thing that has improved greatly is her stamina, and she doesn't have pain in her knees and feet anymore. So, what is going on with her????? She can't concentrate on anything anymore and the uncontrollable laughing is awful. It isn't constant, but it does prevent her from learning. I was having her read to me tonight and she just kept laughing. Could this be a side-affect of IVIG treatment. Does this mean it isn't working? Any insight would be greatly appreciated.
  5. Hi all, We are in the process of getting pre-approval for IVIG. Now with the possibility looming in the near future I wonder if we are doing the right thing. We have only tried one antibiotic with some success, but really she still isn't herself. She walks around the house in circles with her head down. She seldom speaks. She didn't speak much before, but now it is much worse. She laughs for no reason. She doesn't express, "normal" emotions anymore. She rarely wants a hug or any physical contact. She has numerous other issues I believe are PANDAS related. Should we try another antibiotic before we go directly to IVIG? Is IVIG going to become the first line of defense for PANDAS kids. Would it be already if it were more accessable? Do the PANDAS kids have more success on antibiotics or IVIG in general? Is there an, "in general" with PANDAS kids or do you really have to just hunt and peck to find the right thing that works for your child? I am going absolutely nuts. My dd who is 6 years old doesn't sleep well at night. We are totally turned around. She falls asleep after midnight, closer to 2:00 AM most nights. On some nights when she does go to sleep at a more reasonable time, she will wake up at 1 or 2 AM and is up for the day. I don't think I am thinking very well anymore with the lack of sleep myself. Is IVIG the right thing? Please chime in. I really need input from people. I don't know if we are taking the appropriate steps. Just an FYI we see Dr. B.
  6. Some Quests will draw blood for other labs and some won't. It depends on the, "region" they are in. The quest labs down by Dr. B's office apparently will draw blood for other labs. The Quest labs near me, east of Hartford, CT won't draw blood for other labs. A representative of Quest actually explained that to me. Call the Quest lab you want to go to and find out if they will draw for other labs. Igenix will send you a kit. I had our pediatrician's office draw the blood. Had to pay the office co-pay, but it wasn't that bad. Good luck!
  7. Hi, My dd goes to Dr. B. and we are trying to get precertification for IVIG from Aetna. I spoke to the staff at Dr. B's office and asked them as far as insurance companys go how is Aetna at paying. They said Aetna is one of the ones that usually does pay. They told me the process of precertification goes something like this... The staff submits to Aetna for precertification. If it is denied they ask for a peer to peer review where some doctor at Aetna will speak directly with Dr. B. and he will argue the case with them. Would the business manager at Dr. K's office be able to call about pre-certification? They may have better luck than you as they probably know all the, "right words" to use. You could always ask about peer to peer review with Dr. K. if you are initially denied. Good luck!
  8. I am actually drinking Kefir, and taking probiotics as well..on and off. Maybe I will just switch them to always on. I feel horrible on every antibiotic I have ever been on. I also went on the Specific Carbohydrate Diet which eliminates all grains as well as carbs/sugars except for the simple sugars which are readily absorbed. I thought that would ward off the yeast even better than the probiotics. Nothing for the yeast to eat! Thank you for the response to my post. Much appreciated.
  9. Hi, Dr. B. prescribed antibiotics for me because I tested as a strep carrier. I have been on them for 14 days today. I had a yeast infection in my throat at the beginning of the year because of antibiotics...before PANDAS hit my dd. Dr. B. put me on an antifungal as well at my request. (Thank goodness!) I am beginning to feel really icky on them. My throat was burning today and I really just want to know if I can stop now. There is only 1 day left on them, but I feel like I am really pushing it...like something is looming...major gastritis is what I am thinking. Not good as last time this happened I couldn't swallow anything but liquids and really soft stuff for at least 3 months. I love my dd, and will do absolutely anything for her. I guess what I really need to know from you all is how long have any of you strep carriers been put on antibiotics and did it clear up your carrier status? I feel guilty because I want to stop taking them...I just feel so awful.
  10. Hi. my dd goes to see Dr. B. as well. We need to get Lyme ruled out. I ended up calling Igenix and they sent us a blood draw kit. Then we had Dr. B. fill out the form that was included with the kit and sign it. Quest wouldn't draw the blood for an outside lab where we live. I found out that Children's Hospital in Hartford will draw blood for outside sources, and my daughter's pediatrician said he would, so we are going to the pediatrician to have it drawn and am sending to Igenix myself. I'm sorry I don't know about the lab test results you posted. Try finding a phone number for Imugen Lab and call them and have them explain the results! Good Luck!!
  11. Don't give up! Don't get discouraged by the physicians that don't agree with what you think may be wrong. You know your son. You know the behaviours started after a Strep infection. It is logical to assume that it may be related. My daughter, 6 yrs old, was diagnosed with ADHD inattentive type in Feb. this year. She had a positive Strep test on May 3rd. Within 3 days of the strep diagnosis she was unable to sleep by herself or go to the bathroom by herself, she was hallucinating, and had movement ticks as well as she just wasn't there and would just stare off into space. We went to the ER and they said there was nothing to be done, and sent me home. We ended up there again a week later...one of the ER docs mentioned PANDAS and put her on an antibiotic. We went home. The antibiotic that he prescribed did nothing. We went to a pediatric neurologist. They said there was nothing wrong with her neurologically. We had a normal EEG test. We went to a child psychiatrist who believed that it may be strep related, but that we should do nothing and it would just go away and prescribed her anti-psychotic medications which I decided not to give her at that particular time because we were going to see Dr. Bouboulis, a PANDAS doctor a few days later. He prescribed a different antibiotic and explained why the other one probably didn't work. Within 2 days there was a big resolution of symtoms. Although, they have returned somewhat on and off in the past month, she is much, much better than she was before. He is having us test for Lyme as well, and had us do a myriad of testing. I am sorry to say that I don't know what his conclusion is from all of the testing that was done as our follow-up appointment is with him tomorrow. Could by Lyme or PANDAS. I'm betting on PANDAS. If you think he may have Lyme go to another doctor and just say he was bitten by a tick, and that you don't know the species. Beware that some Lyme tests have a 20% false negative rate. Even if the intial test is negative he still may have Lyme. Dr. B. had us get testing at Igenix Labs. He said they have the most reliable tests. I had to call and order a kit, and the physicans order had to be signed by him. My daughter also seems to be better in some areas than she ever has been as well as far as her learning abilities and concentration when the symptoms I am attributing to PANDAS aren't as prevalent. Weird isn't it? I am glad you mentioned improvements in those areas. I thought I was going crazy. DON'T GIVE UP!!!! If Lyme testing is negative get to a PANDAS literate doctor!!! I saw that somone put a link in their post to find them. One step at a time. Use this forum as support whenever you need it. It has been a major lifeline for me since this has happened. Even if I don't write a post I read a lot of them and it helps.
  12. Thank you for the work you have done!!!
  13. Thanks for the info. I will check out the sites in the morning. I am exhausted right now. The ED docs discounted amoxicillin as a cause for the hallucinations as they would have been out of her system by the time that they saw her the first time. I am skeptical. I think that perhaps it did cause some type of cascading effect. I'll read up more on it tomorrow. Thank-you.
  14. My daughter was on 1 tsp a day liquid Azithromycin...so 200 mg/day. She improved greatly for the first 2 days then backslid a few days. We are seeing Dr. B. I called him and he upped the dosage to 1 1/2 tsps a day...300 mg/day. Had a little miscommunication with the pharmacy, and just got the upped dosage started a few days ago, but had been seeing steady improvement anyway since she backslid at the very beginning. Think that was my fault anyway because I was giving her a probiotic with magnesium in it at the same time as the Azithromycin which interfered with it. When I stopped doing that she steadily got better. I honestely don't know what we are going to be doing as far as long term antibiotics or what comes next. I am absolutely leaning toward wanting long-term antibiotics, especially with the thought that she has/had rheumatic fever and that is the recommended treatment for it. We still need to get results for Lyme Testing to rule that out. I know that steroid bursts clear up symptoms, but am not sure about doing that at this point. I think I would like to continue the antibiotics. We suspect she has problems with yeast in her system as she has always had digestion issues...which incidentally seem to be better right now. I think steroids may whack out her digestive system. We will be seeing Dr. B. in about 2 weeks, and plan to make a plan of attack at that point! What is Full-Strength antibiotics? Are there dosages that work better? Is it a kid-by-kid basis? Thanks for everyone's comments and help. I am so very happy that this forum exists.
  15. Hi, My daugther has had an unexpected improvement while being on Azithromycin. She has been on it for a little over 2 weeks. My husband and I are nearly in shock. As far back as we can remember she has gotten winded extremely easily. She has never been able to run around like other kids. She would turn pale and pretty much gasp for air after trying to run about 1/8th of what other children can do. Yesterday we went to the beach. Normally we have to carry her once we walk about half way from the parking lot. We NEVER had to carry her. She NEVER got winded. We did a ton of walking all over the beach and on the boardwalk. Oh my goodness!!!! I am so excited about this!!!!! She was like a different kid!!!!! I am wondering if she has/had rheumatic fever?? I got a list of symptoms from the mayoclinic website. I figured I would put it here for an FYI for anyone who wanted to know. They are as follows: ■Fever ■Painful and tender joints — most often the ankles, knees, elbows or wrists; less often the shoulders, hips, hands and feet ■Pain in one joint that migrates to another joint ■Red, hot or swollen joints ■Small, painless nodules beneath the skin ■Chest pain ■Sensation of rapid, fluttering or pounding heartbeats (palpitations) ■Fatigue ■Shortness of breath ■Flat or slightly raised, painless rash with a ragged edge (erythema marginatum) ■Jerky, uncontrollable body movements (Sydenham chorea or St. Vitus' dance) — most often in the hands, feet and face; less often in the arms and legs ■Outbursts of unusual behavior, such as crying or inappropriate laughing, that accompanies Sydenham chorea She has had the pounding heartbeats, fatigue, shortness of breath, the jerky movements, and inappropriate laughing. Just so you all know, we did bring her to a cardiologist who did an EKG and listened to her heart. He said her heart was fine. Is there a test for inflammation in the heart or is it more diagnosed from symptoms? We were going to bring her to a pulmonologist, but PANDAS hit at that time. Maybe we won't need to!! Has anyone else seen an improvement in fatigue or shortness of breath in their children with antibiotics?? Anyone seen an increase in muscle tone with antibiotic treatment?? As a note I have also put her on Ibuprofen which seems to have decreased the PANDAS symptoms. Just FYI, my daugter's hallucinations and other PANDAS related symptoms have continued to lessen everyday. I am guardedly excited at this point.
  16. I was finally able to tell the difference between hallucinations and play by watching my 6 year old daughter's eyes. She would focus in mid-air. She also was scared of what she was seeing. I figured if she was playing with imaginary friends that she could control she wouldn't be scared. Good luck. I have to go sleep with my daughter now because she is still hallucinating things in her room at night. Good night.
  17. Hi all, I have been thinking about homeschooling my daughter. (She hasn't officially been diagnosed with PANDAS, but saw Dr. B. and he says he is 90% sure, but waiting on lab results.) Is it a good idea? Has anyone else done it? Am I going to end up doing it anyway because she will get exacerbations from all the illnesses at school? She gets services through the school that she won't be eligible for if I take her out. She gets OT, PT, and Speech. I am not convinced that any of it has ever helped her. She is just 6 years old and will be repeating kindergarten anyway. Right now she doesn't even want to go and do things that she loved before...go to the beach, dance class, just go outside in the backyard. She had been hallucinating, so she missed the last month or so of school anyway, but she didn't want to go. I probably wouldn't have wanted to either. A psychiatrist that we saw recently believes my daughter may be autistic, so that is a concern as well in taking her out of school. Any comments would be greatly appreciated. Thank you.
  18. Hi, My daughter has been gluten free for a year and I kind of jumped on the bandwagon with her about 6 months into it. I feel better!!! My daughter gravitates toward things that are good for her too so I didn't have much of a problem with her. She LOVES Chocolate Chex Cereal. Betty crocker has gluten free brownie mixes as well as cake mixes and a chocolate chip cookie mix. They are awesome!!!! Namaste makes a pizza crust mix that is delicious!!!!! We use rice noodles by Thai Kitchen and they are really good too. Good luck to you!!!! We went on the gluten free diet before PANDAS, but my daughter always had reflux problems. Her reflux is for all intents and purposes gone now!
  19. Hi, Just a thought for you. My daughter is on probiotics and Azithromycin. I found out that the probiotics that we use have magnesium in them. I called the pharmacist and she told me to make sure I give the magnesium containing probiotic to my daughter at least 2 hours before I give her the azithromycin or the magnesium could interfere with the absorption of Azithromycin. You should try touching base with a naturopath regarding probiotics and tummy issues. I have one for my daughter and she is a wealth of information!
  20. Hi, We haven't tried chiropractic, but have gone to a physical therapist for craniosacral therapy. It seems to calm my daughter down a bit and has seemed to help her with balance. She has been going for craniosacral for a while...even before we ever heard of PANDAS. Just so you know my daugther doesn't have rages, but she has laughing fits and is unable to sit still.
  21. Wonderful!!!! My daughter is improving on Azithromycin as well!!! She backslid for a few days, but then started to get better again!!! I think she backslid because I was giving her a probiotic that contained magnesium at the same time as the Azithromycin. Apparently magnesium makes it so the Azithromycin isn't absorbed as well. I didn't realize it was in the probiotic!
  22. Faith, The main differing view is that Dr. B. wants to try and treat what he sees as the cause of the hallucinations...infection or inflammation whereas the psychiatrist wants to give her Risperdol and seems to think that the hallucinations will just abate without any treatment. She says she has seen it before. The psychiatrist saw my daughter in the ED initially and told me that the hallucinations would be gone in 7-10 days. They weren't. It has been well over a month now, so I have trouble believing her. I know that medicine is not an exact science, but I can't help but being extremely skeptical of the it will just go away stance. Both docs believe it is an autimmune response that is post viral. I am not really sure what Dr. B. sees as a next step when he gets the testing back. I am actually waiting to see if the tests we are getting done point to PANDAS per Dr. B. before we make any other moves. I plan on asking Dr. B. why he feels the test results point to PANDAS if indeed he feels they do. I did start her on Azithromycin per Dr. B. She apparently has a sinus infection which I should have realized with the yellow mucous coming out of her nose! Dr. B. also wanted her on it in case it is Lyme which she was tested for previously, but am getting a more accurate test done. He also said that the antibiotic would most likely help with the PANDAS symptoms as well since there is a current underlying sinus infection. Everything he has said so far has made logical sense to me. However, you are absolutely correct about me needing to know what is going on with my daughter before I make any decisions on any further treatment. Thank you for the input. Thanks everyone for the input you have given!!
  23. Thanks to both of you for the input. My daughter had a neurology consult a few weeks ago, but am not sure I am happy with it. They said neurologically she is fine. I guess I should be relieved. I may get a second opinion.
  24. Hi all, Dr. B. said he is 90% sure my daughter has PANDAS. He prescribed Azithromycin. He is also having me get the testing kit from Dr. C. as well as a Lyme test among other things. I am in a wait and see mode right now. I went to see my daughter's psychiatrist who has a differing view on what is happening. My daughter presented with hallucinations, anxiety, and tics. It was basically an overnight presentation. The psychiatrist says basically that she thinks it is an autoimmune response to a virus, possibly strept. Sounds like the PANDAS definition to me... The psychiatrist also says that it will just go away. Dr. B. says it won't it needs to be treated. The psychiatrist told me that I had to decide who was going to treat my daughter Dr. B. or herself. This woman is highly respected in her field. I also respect her, but was rather shocked by her saying this. I believe my daughter has other issues that she could help me deal with once this "exacerbation" of whatever it is is over. I convinced her that I would like my daughter to continue seeing her and Dr. B. as well. Has anyone else ever had this happen with doctors? I am trying to keep an open mind on what is going on until I get test results. I am so frustrated right now. My daughter is hallucinating a lot and I am dealing with the stress of how this is affecting our family as well as the uncertainty of whether it is ever going to go away. I feel like the psychiatrist was trying to strong-arm me. She also said I should stop getting other opinions because I was just going to continue to get different diagnoses???????...??? I am so very confused.
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