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mom md

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  1. Sounds very familiar. My son had titers of 1800 and many of the symptoms you have stated above at age 8. . We saw Latimer in 2009. She recommended plasmaphoresis due to his extreme presentation and the high titers. We were back to baseline after 5 days of plasmaphoresis and I thought we left cured. Four months later he relapsed (not as severe) after a flu shot, and ultimately needed some IVIG to retrain his immune system. We too, had not had a positive strep test since 2006. For us it was clearly autoimmune. Both azithromycin and steroids worked for us to buy some time until we could get the IVIG. They did not fix things, but allowed him to get back in school. They were a band aid for him. He is 12 1/2 now and doing phenomenal. He had no current issues, and has not had any for years. See Latimer. She saved us.
  2. Yes. Have three. First son-diagnosed in 2009. Very bad case requiring PEX and then IVIG. Now he is in 5th grade and doing great. To hear the story of where we came from you would not believe it was the same child. He is sweet, sleeps like a baby, no tics, no movements, patient, kind, focused. Unbelievable. My second child had responded to antibiotics and IVIG and is now doing well. We have not had any issues this school year. My third child was diagnosed this fall. She has responded to antibiotics alone but I will do IVIG without hesitation if needed. It has brought my other two children back.
  3. I have two children that have both received IVIG probably 6 times each. I asked their infectious disease doctor what she thought-if I should be worried. She said it is riskier for them to get steroids for poison ivy than to get IVIG. She said it is safe it is just risky to the wallet:)
  4. My daughter was diagnosed about two months ago. She is 6 and we caught it early. She was started in Omnicef and her symptoms started improving after 7 days. We were given a three month prescription. About 3-4 weeks in we saw Dr. L. She suggested trying a one month steroid course to see if we could "erase" the immune system memory since we caught it so early. Interesting idea and our immunologist thought it was also worth a try. She finished the steroids two weeks ago and she now has no symptoms. We saw a pediatric infectious disease doctor and she said to keep her on the omnicef for the next 6 months until she see sher back and if she flares again go straight to IVIG. I have two sons with the disease that have required IVIG and I plan to take her advice. I would love to think antibiotics and steroids will work, but knowing our history I bet there will be a round two. My best advice is to keep them on antibiotics and while they are in a good place get them established with a doctor somewhere that can go to the next level if they need it.
  5. I emailed Dr. Grant tonight to see if she would even be considered since she has already had steroids and antibiotics. She has also met with a child psychologist twice to talk to see if she had it and to see if she can start verbalizing her "rules. Don't know if that is considered behavioral therapy since it really hasn't done anything yet. I will see what he says. I really hate to subject her to the spinal tap,travel, etc when we can get IVIG locally but I feel like anything to further the cause. I will see what he says.
  6. It is always great to read the success stories. Thanks for sharing.
  7. Thanks for the thoughts. We did start the steroids and I knew from experience her behavior could get worse with the steroid I just did not expect the OCD to get get worse. I have always done what you said- if it is working stay the course. Strep is everywhere down here and it makes me really nervous to change her antibiotic, especially while on a steroid. I am going to go back on the cephalosporin and alert Dr. L. Thanks again.
  8. My daughter 6, is a classic presentation. Four weeks ago she had sudden onset separation anxiety, OCD, a tic, and then strep confirmed by her pediatrician. Placed on a cephalosporin and symptoms decreased almost 80% by 7 days. We flew to see Dr. L after she had been on the antibiotic for three weeks and at that point her symptoms had decreased down to 10%. She once again confirmed the diagnosis and recommended a month of steroids to see if we could "erase" the memory of the immune system and also placed her on clindamycin for a month to kill staph. She said a lot of kids get infected with staph infections after the initial strep infection and flare again. We came home and a week later started the clinda. We are four days in and I can already see her OCD is getting worse. She was doing so well on cefdinir. I also have her on a good probiotic. I am very tempted to stop the clinda and go back to the cephalosporin. I have made an appoint with the infectious disease doctor her brothers see (they have PANDAS too) to discuss all this, but wanted to see if anyone had any thoughts or if they had see this happen.
  9. My son was 8 and I explained to him that when we are sick your body makes soldiers to fight infection. Your soldiers have just gotten confused and are trying to attack your brain and that is why it is making you do these things. He looked at me with such relief and said, "wow, that is great. I just thought I was a bad kid.". I then explained that all the doctor's visits, medications, etc were just to fix the soldiers and to help his body not make so many. Even his friends who take ADHD Meds when they come over say "oh yeah, His meds are for his soldiers". Pretty basic, but it worked.
  10. ###### hath no fury like a PANDAS parent. If BCH had any idea they would retreat now.
  11. Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation). My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.
  12. I will give you the cliff note version. My older two sons have both been diagnosed with PANDAS and have been through the ringer. PEX and IVIG for one and IVIG for the second. Interesting though, their disease presented more with hyperactivity, sleep disturbances, mood swings, tics, and sleep disturbances. They are both doing well now. My oldest has not had symptoms in two years (he was very severe) and my 8 year old is finally almost back to baseline (he was caught much earlier). My daughter, 6, started kindergarden and right around the beginning of school I noticed some anxiety and a hugging ritual. She has had some separation anxiety, ramped up OCD, and now just yesterday started touching things two times. I know this disease can have a 40% sibling rate, but come on! Have we not been through enough! I made an appointment with a behavioral psychologist who has experience with the disease to get documentation and we have an appointment with her pediatrician tomorrow. She is VERY early. I do not think a non-PANDAS parent would even notice her behavior. My husband is not even convinced, although it took my oldest to get to full chorea before he agreed it was not a behavior issue. He agrees though my maternal instinct has never been wrong before. She did have an ear infection (psuedomonas it turns out) that went for almost three months before we got it cured that may have been the catalyst. What is the current thought is you catch these kids this early? Antibiotics to shut antibody production down? antibiotics and steroids??? She is not severe enough for the NIMH study. Thanks for your thoughts. I know what to do when the kids get bad but what if you catch them this mild and early?
  13. Thanks. I did not list Nelson only because I only listed the Concord neuro I know. The boys are holding steady but Carter still needs IVIG. We are waiting to hear back. Dr. Corbier called and I have not heard. I am ready to just get it done though and continue appealing.

  14. Hey, how r the boys? Hope all is well.

    I am curious why you listed corbier and not Nelson? Do you like her, is she good on pandas? I like corbier but we r still flying up to latimer. He is not as aggressive w antibiotics, I found, and that is what is working for Meg right now.

    By the way, you have posted your phone number on your status page accidentally.

  15. Hi Claire, how are you? How is Carter? Any doctor updates for me? Savanna is doing pretty well but Sierra, after her two low dose IVIG's with Dr.Corbier is not well. I'm so confused about whether we are on the wrong path or maybe she's reacting to hidden gluten in her diet and it's not the PANDAS that is making her nuts. Hope to catch up with you!


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