AmbersMommy

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.

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.

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.

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.

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.

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!

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!

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.

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.

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!!

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.

Thank you for the work you have done!!!

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.

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.