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Everything posted by RNmom

  1. Hi Mati's Mom! I have been following your PEX story and was so happy to read that you finally got the approval. Congratulations! I will look forward to future posts about your child's progress. My son had PEX recently - in fact I think we "took your place" on the GT schedule - something I have felt badly about. Your story has a special place in my heart for that reason. ...

  2. I would love to know the answer to this one. I have been told that an ESR level is a daily marker of active inflammation anywhere in the body. If the rising titer was due to infection this would possibly show it. I was also told to follow my son's CRP level for the same reason - this one is to be done monthly. I am sorry that I do not know the full names for these tests - perhaps someone else reading this can help.
  3. At the OCD conference in Washington DC this past summer, Dr. L spoke about dopamine receptors lining the bladder. She linked that to many of the urinary symptoms (such as bed wetting & urinary frequency) which can occur with PANDAS. That was the first time I fully understood that PANDAS is so much more than involuntary movements and OCD. It makes sense that the additional symptoms that we often see in our PANDAS kids could be traced to receptors reflected in the Cunningham tests.
  4. My ds14 has really bad "brain fog" right now. This thread is so helpful - I thought the cognitive haze was unique to him and I have been extremely worried. He is now 6 weeks post plasmapheresis and healing very slowly. During a follow up visit with Dr. Latimer this past week I learned that the brain continues to heal for @ six months after plasmapheresis. This information gave me a better perspective on my son's "rate of healing." I can only hope that as my ds14 continues to slowly heal this "brain fog" will lift. He is on home bound status with the school - so there is flexibility in learning. But, the fog interferes with every aspect of his daily life. It is definitely one reason he is not quite ready for ERP therapy right now (but he is in traditional therapy to help with the post traumatic stress from the whole PANDAS experience). Thank you for this thread!
  5. Nevergiveup is asking good questions. It would be very helpful to understand the thinking behind statements such as "turning back of pages" and "do more harm than good" (what kind of "harm" for example). Intuitively and historically, serial IVIG for autoimmune diseases makes sense and has worked - would that not include PANDAS?
  6. Gosh, you posts have really gotten my attention today! :-) It really does seem that your ds responds well to antibiotics (and steroids - even if it is "rough" while taking them). It sounds like you will stay on top of the yeast problem with probiotics, stool checks, and other meds if necessary. I don't know all the details of your ds case - but the questions about the recovery phase for both IVIG and PEX are very good ones. Currently, we are in a recovery phase post PEX. It has been rough - over one month out and our ds is only now saying that he "might be feeling a little better." Our situation is very different from yours however. Our ds had no life before PEX - so there was nothing to lose ... and so much to fight to regain. I wish you the best in your decision making process!!
  7. I am so sorry to read that insurance blocked your access to PEX. I would keep working with Dr. Latimer on that solution. Our ds14 had catastrophic PANDAS that "came out of the blue" in January 2010. He had PEX this July. The healing process has been so SLOW that I have not posted much about it. However, today he said to me, "I think, maybe, just a little, I am starting to feel better." What a blessed thing to hear!!! (He had no life at all at his worst. He was a "14 year old version of Howard Hughes.") I would not discourage the other things that you are doing but I would never give up on PEX. Hope to be reading about "progress" for your ds soon! P.S. I have a friend who is having very good results with IVIG with Dr. B. for their PANDAS child.
  8. My ds14 is 165 lbs and 5'5" tall. He is on 3,000 mg Augmentin XR daily (takes 1,000 mgm every 8 hours). He has been on this since he had PEX in July and we have no plans to decrease this dose or discontinue antibiotics. (We do give probiotics - the ones NOT cultured with strep!) I liked the post from today about milk thistle protecting against liver damage. That is a concern with long term Augmentin. You can bet we will be starting that today!
  9. O.K. I re-read the sequence of events. I can see that you are concerned about yeast. It has caused joint pains and maybe some other symptoms (?) in the past. But, I also see that you were feeling your ds needed to be on a higher antibiotic dose. Unfortunately, you will need to address one issue at a time. Give your ds the time necessary to get his antibiotic blood level back up to a therapeutic range (that may require getting that higher dose you were going to ask for). You can also ask to get your ds back on diflucan while you battle this symptom flare in order to deal with the yeast. Have you had his stool checked for yeast recently? Hang in there - I know the anxiety and frustration that goes along with managing a PANDAS flare up. BTW, IVIG is a good thing to consider for immune regulation and turning over the autoimmune process - and I have read that it addresses the gut issue in some diagnoses. Others on this forum will have a lot more to say about that than I. We just had PEX but I am very open to following up with IVIG. There is a lot you can do! :-)
  10. It can be so confusing to sort out what is causing a surge of symptoms. One thing did "leap out" from the sequence you shared. Two changes were made at the same time: the antibiotic was stopped x 3 days AND a new probiotic was introduced. Unfortunately, you will have to guess at which one is triggering the resurgence of symptoms. Based on our own experience with severe PANDAS and everything I have read here (love this forum)I would put my money on the 3 day antibiotic "break" as the culprit. The half life of the antibiotic drops off a little more slowly with azithromycin so, by the time your 3 day break was over, the blood level was probably just getting low enough for the PANDAS symptoms to break through. The fact that this coincided with the introduction of the new probiotic just confounded the picture. You can retry it later on when your ds is stableized again on a proper antibiotic level. We tend to use a higher dose of antibiotic regardless whether we are using Augmentin XR, or azithromycin, or cefuroxime (a great strep buster). Our ds14 is 165 lbs and 5'8" however... Also, I just got my ds14 back from our immunologist where labs were ordered for mycoplasma, ASO, anti-DNAse-B, Haemophilus Influenza Type B IGG, Streptococcus Pneumoniae IGG AB serotypes, EBV, and Lyme. We check these periodically as they can enter into the PANDAS picture and cause symptoms flares even while on antibiotics. (We also did a lot of Immunoglobulin levels in case we decide to follow up his recent PEX with IVIG - but that is another issue). I hope this helps! At the very least you know that you are not alone in the struggle to keep things sorted out. Do try and make changes one at a time whenever possible :-) and please let us know how this evolves.
  11. Oh boy, is is the question I am struggling with now. Last June, a PANDAS friend had their ds follow PEX with IVIG because he got strep three weeks after the PEX. He was on Augmentin but at a low dose. The strep was virulent and needed a different antibiotic (Ceftin). He is currently maintained on Zithromax and continuing with IVIG every 8 weeks. This case makes the point that PEX is great for clearing out the anti-neuronal antibodies but it cannot prevent recurrences. My ds14 had PEX at the end of July. We are keeping him 100% home bound until his immune system rebuilds itself. He is not going back to school in the fall. It is a radical decision but, as everyone knows, PANDAS is an extreme disease. Not to mention that it was so difficult to access PEX that I do not want to be casual about follow up care. The big question for us is whether or not we also have IVIG. We will make a decision in September when we follow up with Dr. L. Right now, she wants us to have him work with a therapist who treats OCD and post traumatic stress. She says a lot of her older PANDAS patients have a post traumatic stress response to the illness as well as the hospital experience. It makes it difficult to determine what symptoms are residual OCD and what are a reaction to the illness itself. My personal feeling is that my ds will need therapy and IVIG. Are there others out there going through this decision making process? I would really appreciate feedback.
  12. I agree - ask Dr. Latimer what she would like you to do (I wrote you a longer response elsewhere...)
  13. Nancy, I will try and give you as much helpful info. as I can. For purposes of "context" I'll share about my son's abilities and needs: My ds 14 had his plasmapheresis the last week of July. He has catastrophic PANDAS that "exploded" on January 2, 2010. We have done: constant high dose antibiotics, steroids x 1 month, tonsillectomy, increased antibiotics, 2 days of IVIG at Georgetown, and then the plasmapheresis. My son is the "frightented" PANDAS type, he is completely homebound, unable to go to school, a "14 year old version of Howard Hughes." This is in sharp contrast to the boy he was the year before when he won the drama award for his school, "rocked" the lead in his school play, enjoyed hanging out with friends, and loved life... And, he accomplished all of this as a kid with High Functioning Aspergers Syndrome! (Yep, he too has ASD!)He does not have the surges of rage (so far) that some PANDAS kids suffer from. However, he can get terribly anxious with changes and his thinking can be "unreasonable." So, while at Georgetown I was prepared to advocate that all procedures be patiently explained, and that a small amount of extra time be provided for him to process and adjust to changes. Much to my delight, I never had to ask the staff to do that because the nursing and medical staff handle all of their kids that way! I can't imagine that your daughter's issue with the blood pressure cuff would actually have developed into a problem. In our case, I found the staff to be very willing to do whatever might help my son cope with the demands of the treatment protocols. I am wondering if the discussion during the pre-admission consult was partly "lost in translation." Firstly, the blood pressure cuff only needs to be on "continually" during the plasmapheresis procedure which only lasts @ 3 hours each day. During that time, my son was able to have the head of his bed up @ 20 - 30 degrees. He was able to play video games on the TV. The idea of "lying flat" during the procedure is a "textbook" idea and the person with whom you consulted may not be completely in tune with how things are actually done on the unit. The clinician who ran the plasmapheresis procedure (not the nursing staff) kept the lights low for my son and was very gentle and sensitive to him. When not having plasmapheresis, he was able to get up and walk to the bathroom. Additionally, he could even have gone off the unit in a wheel chair is he had wanted... however in true "Howard Hughes" fashion, he opted to remain in his room the entire time. One bit of info. to think about: One person on the nursing staff told me that sometimes the PANDAS kids are abusive to the nursing staff. She did not indicate any negative feelings about taking care of the kids with PANDAS. What I thought I "heard" in her comment was that those particular cases are very challenging to the staff and some of the nurses cope with the abusiveness better than others - understandably! As a nurse myself I had intuited that issue. In our situation we prepared our ds with role playing and talked about the details of the hospital stay for weeks before he went. We did tell him that, no matter how he felt, he was not to use bad language or an angry voice with staff. His older brother (21) and I played "tag team" as the "24/7 in hospital support." There were some "unique" adaptations that we had to make to help our ds with his "issues" while in the hospital. I found that by taking a room in the Levy Center we were able to support our ds for the four days that we were there without too much trouble. I am, possibly, reading between the lines of Andrea's comment that the psychiatrist you encountered might not be the regular one? I will contact you personally for his name... That would actually be good news for the future if this particular doctor was just covering for someone else. However, this encounter is tragic for your daughter and your family. If you can find the strength within yourself to write as calm and factual a letter as possible (the facts will speak for themselves)to Dr. Shad (the admitting physician for PANDAS patients receiving plasmapheresis at Georgetown Pediatric ICU) I would encourage you to do so. You have an advocate in Dr. Shad. She will take the letter as high as it needs to go. I would focus on what this experience cost your daughter in terms of timely access to necessary treatment as well as the hardship to your family. State your concerns in an informative, rather than "threatening" or "litigous," manner so as not to raise defensive barriers to communication. (If Andrea suggested writing to someone else - do that as well.) I sincerely hope that this is helpful to you. I hope that my lack of knowledge about the finer aspects of your daughter's case does not translate into insensitivity here. Each PANDAS child expresses the illness in their own unique way depending on where and how their brains are effected by the antibodies. Each child deserves access to treatment for their PANDAS along with proper support to help them cope with the demands of that treatment. One additional thought: The comment that "Dr. Latimer is the most aggressive doctor out there treating PANDAS..." (my paraphrase) is an unprofessional statement that undermines the doctor/patient relationship between you and Dr. latimer. That is a big "no-no" in the practice of medicine. It might be worth addressing. Hopefully, others will read this and edit and/or ammend my suggestions. I agree with others who say that what you write will be for all PANDAS kids who try and access plasmapheresis in the future. I wish you the best in returing your daughter to that point of access as soon as possible!
  14. I am so sorry to read this. I cannot believe the psychiatrist intervened by showing up with the police and intentionally "pushing your daughter's buttons." That makes her into a criminal rather than an anxious patient. I would have hoped that Georgetown University Hospital would have a psychiatrist on staff who understood "therapeutic approach" and "therapeutic support." My ds14 just had plasmapheresis in the Georgetown ICU. The nursing staff was very supportive. The physicians were very kind. They treated him with dignity - the complete opposite of what you are describing here. We did not have to deal with this psychiatrist however. I hope you can go around him in the future. Was he the head of the psychiatric department? Honestly, using the police as a "therapeutic tool" does not strike me as "best practice" no matter what the psychiatric diagnosis. Definitely try again when the head of the pheresis department is back from vacation. All the best to you and your family.
  15. I am completely flabbergasted and speechless too! Unbelievable!!!! I am so so sorry you and your daughter had to go through this. This is completely unacceptable.
  16. I have heard that Dr. B., Dr. K., and Dr. L. take slightly different approaches to the dose level of IVIG. Can anyone confirm for me whether or not this is true? If it is, does anyone know the rational for the differences? Thanks!
  17. I am new here too. My question "echos" the post from cab40: My son also relapsed after tonsillectomy/adenoidectomy in April. We have kept him on Augmentin XR 1,000 mg twice daily for months. It has "contained" the resurgence of symptoms but has not eliminated them. We tried IVIG in May. He got some mild relief but he is still completely home bound and seriously symptomatic. I believe we will be trying plasma exchange in the future. Is this the normal progression of things when antibiotics fail to eliminate PANDAS symptoms? Is there some point where immunological treatments must be done before antibiotics will work again?
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