Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by kimballot

  1. You are certainly in good hands with practitioners! Let us know how it goes with amphotericin. I agree with philamom re: starting slow with mucinex.
  2. Misty - I want to put the word "temporary" into perspective. My son has had PANS symptoms from a young age. He had his tonsils removed at age 7 in the midst of a horrific exacerbation - before we knew enough to call this PANDAS or PITAND or PANS. That calmed things down for him, and put a "temporary" halt to his PANS. He continued to have symptoms once or twice a year when he had sinus infections, and those symptoms were manageable with antibiotics and CBT and lasted for 5 years, until he contracted several infections while harboring a sinus cyst. That was 5 years of near-typical development, tae kwon do belt tests, spelling tests, birthday parties, sleeping at night, summer sleep-away camp, wearing clothes without pain, and going to the skate park with friends. Had we known about PANS we would have been much more careful when he first started showing signs of another infection and may not be in the situation we are in now. I am, admittedly, biased as my son is now immune deficient and gets IVIG every 6 weeks or so, so I am not as frightened of IVIG as I once was. My son clearly is not at all in the same category as your daughter. If I could find a way to get 5 years of relative remission again I would do it. Even if I could get 1 year of remission, I would do it. I truly believe the key to this is getting treatment early on.
  3. 1. No- I don't believe you can tell the cause of the sinus infection on a CAT scan - you can just see that it is an infection. If the infection is in the maxillary sinus they may be able to swab it and test it. If it is in the ethmoid or frontal sinus they will probably be guessing at best unless there is surgery. 2. The bactrim and doryx are being used for her lyme/Bartnella - correct? I doubt any doctor would want to take her off of these unless they decide on another treatment for the lyme/bart. If they take her off, they would probably put her on another antiobiotic and I don't think that will be any better for fungal issues. 3. What doctor is prescribing the bactrim / doxy (scott smith?) and what doctor wants to put her on the amphotericin B (ENT?)? I've not seen anyone on amphotericin B on this board before, but I may have missed it. Most kids go on diflucan if fungal sinusitis is suspected. I will be interested to hear how amphotericin B goes. From what I have heard, you are in good hands with Scott, so I suspect your phone call to him will give you some peace of mind. Also, remember to try ibuprofen for inflammation and mucinex for congestion - short term, and use lots of probiotics- long term. Good bacteria probiotics (such as acedophilus) need to be given a couple of hours away from antibiotics, and good yeast (such as Saccharomyces boulardii) need to be given a few hours away from antifungals. Don't forget - lots of water.
  4. I don't know if she is still congested and picking at her nose, but one thing that I did not see in the suggestions was mucinex. It thins the mucus and that can really help. Don't over use or they will become dried out. Try 600mg dose and see if it helps. Also, when she is wound up you can try valerian root. It does help to calm and I've not hear of any side effects with it. Finally, please remember that ibuprofen is a very good anti inflammatory agent and can be very helpful when our kids flare. You don't want to use it long-term unless your child is followed closely for liver issues, but a few days of ibuprofen during a flare can be very helpful to decrease inflammation and close the blood-brain barrier (theoretically). All I know is it really helps us. And... in the middle of the night when you feel all alone, know that there are lots of other PANS parents who are also awake and feeling the same way and also know that there are many PANS parents who are sleeping soundly because they have made it through the worst of it - so there is hope.
  5. HI folks - It seems that there has been quite a bit of discussion lately about sinus infection, fungal sinus infection, and antibiotics, and I recalled this thread from a couple of years ago that may be helpful for some of you battling the sinus monster... http://www.latitudes.org/forums/index.php?showtopic=9549&st=0&p=80192&fromsearch=1entry80192
  6. Lilly, I don't think the problem is mold in the antibiotics. I think the problem is that antibiotics kill the bacteria in the body - the good bacteria as well as the bad bacteria, and that leaves space in the body for yeast/fungus to move in. The yeast/fungus then become a problem. Your child is on very strong antibiotics. Is she also doing probiotics? That will help to keep the bad yeast and fungus from overgrowing in her gut. Antifungal medications can help if you suspect fungus elsewhere, such as a fungal sinus infection. The problem with antifungals is that when you first start them you can get a herx reaction as the toxins die off, and you need to do something like charcoal or betonite clay to detox. You might also want to avoid foods that tend to feed yeast, such as sugar and carbohydrates. This can be difficult because the kids really crave them when they have yeast overload.
  7. Nice job! I hope it goes well and I hope folks post if the are able to go!
  8. Have you already started with Dr. B or are you waiting for your first appointment? If the MRI was done years ago there is no reason to assume the sinus infection is still there given the antibiotics your child is on... nor is there a reason to assume it is not there. Basically - it is really not all that valid anymore. Dr. B is usually really on top of things as far as diagnosing sinus infection - he (literally) saved my son's eye 2 years ago when everyone else missed a cyst in his sinuses. I would think Dr. B would order sinus CT scan, which has more radiation but is more definitive than MRI if he sees any signs of sinusitis on exam. An ENT would be a good person to add to your team if sinuses are a frequent issue. I would call around for a local one that takes insurance and is willing to work with Dr. Bs recommendations. Please PM me if you want to talk more privately. I totally understand the desperation you are feeling, but I also know that you have to be systematic and strategic as you attack this demon of a disorder. It truly is like peeling away the layers of an onion and it takes a great deal of time and perseverance.
  9. What doctors are you seeing now, and who ordered the MRI that found the sinus infection? What antibiotics is your child on now? Do you have an ENT that you've worked with in the past? Sinus infection need to be treated quickly. Unfortunately, I have lots of experience with sinus disease with my son. I will look for your responses.
  10. MDmom - perhaps you could be involved in some educating?!? Look at how far OCDfoundation has come and all of the support we are able to generate from that organization! I wonder if we could arrange for Swedo or Murphy or Cunnigham to present to IDF at some point - similar to their presentations at OC foundation and autism one?
  11. As I have traveled the PANDAS path, DS15 has been diagnosed with Common Variable Immune Deficiency in addition to PANS. His immune deficiency is not severe by total antibody numbers (HIs initial pediatrician told me it was "nothing"), but is severe if you look at specific types of antibodies - in his case lack of protection for 11/14 s pnemoniae titers and low IgA. The more important piece, thought, for his CVID diagnosis is a history of chronic severe sinusitis from birth, and improvement seen with tonsillectomy. It all fits together... crummy immune system cannot clear sinus gunk, group A strep and strep pneumonia sinus infections, eventual autoimmune reaction to all of this in the form of PANS. Now he has bartonella - probably has had it for years. Immunologist says lots of kids pick up bartonella along the way, but frequently are able to clear it on their own. Not DS with the crummy immune system. Recently, I contacted the Immune Deficiency Foundation to see if they could help me to explain CVID and IVIG to the school. I spoke with a wonderful woman who sent me lots of information to share with the school. She also put me in touch with other parents of kids with CVID. The kids also had histories of periods of sensory processing problems, anxiety, and such. It did not sound all that different from what many of us describe. The organization also has conventions and gatherings for the kids, and advocacy for legislation regarding IVIG and other issues. So... my question is... has anyone else worked with this organization and found them helpful? If you haven't you might find their information beneficial - even if your child has not been diagnosed with immune deficiency. Their website does a good job explaining IVIG and autoimmune disorders too. Also, I am wondering if they should have a PANS presentation at their next gathering - I have a feeling there are some PANS kids out there who are not aware of the reason for their sudden-onset symptoms. Here is the website: http://primaryimmune.org/
  12. You can also give this article http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf to the pediatrician and OT as it helps to explain the connection between SPD and PANDAS, or you can read the stories from other families on this website http://www.nysota.org/node/334 Having SPD does not exclude the possibility of PANS. Sudden-onset SPD is a sign of PANS.
  13. I have some parotid problems and duct problems myself. The swelling is very far back - really more under my ear near my neck. It is very painful and is especially painful if I eat lemons or lemon drops as it fills with fluid. However, sucking on lemons or lemon drops does flush it out and after that initial pain it is quite helpful. If the problem is more in the cheek then angioedema or other allergic reaction such as hives is a possibility. I would get this checked out when it occurs and also keep a close eye on the child - If it is angio then the tongue could swell as well and could impair breathing.
  14. I use amazon a lot. They carry some excellent brands at a decent price and you can use "subscribe and save" to save shipping and get reminders about re ordering (you can cancel at any time if you don't want to continue to subscribe). Also like that i have a record of my supplements that are prescribed by the doc for taxes. I try to order probiotics or anything else that really needs refrigeration during the winter months. I don't like the idea of summer shipping without keeping them cool. Of course, I have no idea where they've been before I get them!
  15. I've not posted much recently because I had little good news to post. However, things seem to be turning around. DS15 was heading downhill over the summer and into the Fall. Life was not good here. Rages, school refusal, fatigue, failing grades and no motivation. He had gained a ton of weight, ate nothing but junk, and spent much of his time ordering me to go out and buy more junk or raging that we only had healthy food in the house. When he wasn't doing that he was on x-box swearing and killing people. I am not joking. I need to tell you, also, that this is NOT what I have tried to raise! He gets IVIG every 6-8 weeks and in October Dr. B confirmed that the "stretch" marks he was developing on his trunk were indeed bartonella. A look back at lyme testing showed the bands that are bartonella specific were the bands that were "indeterminate" in the lyme testing 2 years ago - before IVIG. I have to admit that atl that point I was really giving up hope that he would every pull out of this. As a high school sophomore who did not go to school and did not do work, his time seemed to be running out to make something of himself and I was, frankly, burned out and tired of fighting for him. My dream for him went from hoping he would find a career that he was passionate about to hoping he would someday get his GED and that he would not hurt himself. Most of my family had given up at this point and even those closest to me really started to placate me more than support me. I think my mother and my mother-in-law were the only people left really believing that a good kid was left in that sad body. Fortunately, I had a chat with a friend who has a son with Chron's disease, who set me straight and gave me the motivation to get back into the ring and fight for my son. Dr. B changed his meds to bactrim and azith - and I saw a huge rage for about 3 days when he first started, so I know something was happening. The lyme doctor added in a few more supplements and also convinced him to start on a gluten free, dairy free, low sugar diet. The pediatrician (who has other kids with bartonella and PANS) wrote for him to go on home instruction from mid-october until Jan. 2. The psychologist continued with CBT and focused on coping with chronic illness. He slept ALOT and had about 2 hours a day of home instruction. At first he went right back to sleep after home instruction. Gradually, he started to have more energy. By November he was asking to go back to school before winter break. He was able to go back for 3 days before Christmas. He is working hard to get caught up in his assignments. Over the past week he has developed a new passion for carpentry. He planned a large wood project for his skateboard. To fund this, he sold some of his collections on ebay. He found you tube video instructions on creating the project, used the home depot website to find the materials and budget to for it, talked to the folks at home depot to purchase the materials and have them cut appropriately, and has spent the past few days in the garage drilling and screwing the wood. He has not been at all frustrated and is so proud of his work! At first I was afraid it was OCD kicking in, but he is able to leave it at night to get to bed at a decent hour because he wants to get a full night sleep before school. He has not sworn at me in about 2 weeks and says "thank you" when I do something nice for him. His level of exectuive function has gone from 1 to 8 (out of 10) in two months time. He still has trouble with time management and is forgetful, but so SO much better than what he'd been dealing with before. The purple stretch marks are quite a bit lighter, so I really think the bartonella has been ONE of his infections. I really think he was hit with multiple infections all at once in 2010 and I believe that started a cascade of immune issues, including his PANS exacerbation. Well... if you've hung on and read this post this long, then I thank you and I hope and pray that your child is doing well or will begin to do well very soon. This forum has been my lifeline and you all are my inspiration!
  16. this sounds like a PANS flare to me. We have seen the same when my daughter is sick - DS15 flares. First - be SURE the sibling is being well-treated for the infection and be sure to clean everything .... switch to paper towels in the bathroom instead of cloth towels. You can even use paper plates and paper cups for a while to reduce the risk of sharing germs. Buy a stock of toothbrushes at a cheap store and change them up . Regarding the child who is flaring: Step 1 would be antibiotics and ibuprofen (which it sounds like you are doing). You can also add in quercetin or other anti inflammatories and also charcoal or betonite clay in case it is herxing. Step 2 would be steroids. A taper is often used - where the child starts with just a couple of pills a day then builds to a full amount for a week or two, then tapers down gradually until he is down to 1 pill a day for a couple of days - then ends. It is not uncommon, though, to see an increase in symptoms when you first start a steroid taper, so be ready. Step 3 would be another IVIG. Best wishes.
  17. I thought the NIMH study strickly eliminated anyone with other infections - STREP only. Do they know that your child tested positive for both Lyme and MycoP? It looks to me like the child has to have a strep-associated exacerbation to be in the study, but having other infections does not exclude the child from participating. See here: http://clinicaltrials.gov/ct2/show/NCT01281969
  18. ADHD symptoms are common during PANS exacerbations, and may persist even after the exacerbation ends. If you son's ADHD symptoms were not there after his exacerbation and are suddenly starting or are suddenly getting worse, then you should probably look for an infection of some type. Once a child has PANS he/she is at risk of having an exacerbation with any illness - not just strep. Our kids have been known to react with a wide variety of viruses, sinus infections, walking pneumonia - even allergies.
  19. I need to look that up. I will PM you so we don't hijack this post too much. If anyone else is interested - feel free to PM me.
  20. We are now doing 2g per kilo q 6 weeks. Settled on that as trough levels were still very low after 6 weeks with 1. 5g/kilo. Yes - definitely helps with PANDAS. Symptoms start to come back a bit around week 5. We have "turning back of pages" for 1-2 days after IVIG (small tics, talking in his sleep, so I think more vivid dreams). Then 4 good weeks, followed by fatigue, increase in anxiety and OCD... then IVIG... etc. Hoping for longer Quality of lIfe between treatments as Bart is treated.
  21. First off - I don't want to discourage you from IVIG or from looking for lyme. I believe both are important, but I also want to tell you that, unfortunately, you cannot always have exact answers - even if you are very diligent in searching for them. We looked for lyme using igenex before my son had his first IVIG. Igenex had a couple of indeterminate bands - nothing clear - even the Dr. at the igenex lab said it was probably negative. Did IVIG and had major exacerbation of PANDAS symptoms. Did more lyme testing. Every test there is. PCR testing, igenex, labcorp, quest - even Urine testing. Everything available in 2011. Nothing positive. Still just a couple of indeterminate bands. Continued IVIG, antibiotics and supplements. Gradually, PANDAS exacerbation symptoms diminished, but fatigue remained and IVIGs only lasted about 6 weeks. DS was CVID and had chronic sinusitis, and IVIG kept infections away, so we continued. 14 months after first IVIG DS developed dark purple stretch marks indicative if bartonella. Started on bactrim in addition a azith. 6 weeks later, marks are fading, though fatigue remains. I don't think this is a new infection. I suspect he has had bart for a while and this has led to his CVID. I suspect bart, coupled with sinus issues and H1N1 led to an exacerbation in 2010 that started us down this PANDAS path. It has been a long haul, but I feel like we are finally on the right path. He continues to get IVIG every 6 weeks. We are hoping that once bart is treated a bit longer he can start to stretch out the time between IVIG infusions. Sometimes, it is really like pealing the layers of an onion with our kids.
  22. I'll take a stab at this. In a typical immune system, when someone has an infection, the IgM antibodies are large antibodies respond first to fight the infection, so a rise in IgM antibodies is generally interpreted to mean that a person has a current or very recent infection. Over time, IgG antibodies respond, and these antibodies hang around in the blood for a while afterward - in some cases for years - and are thought to provide protection if the person encounters that infection again. So, most docs interpret elevated IgG to mean that the person has had a past infection (especially if IgM is not elevated). Mycoplasma is a tricky microbe. It seems that many of our kids do not generate elevated IgM - just based on reports from parents on this forum and other websites. It also seems that many of our kids have very long-term elevated IgG to mycoplasma (my own DS being one of them). Could this be because IgM never did what it was supposed to do? This chronically elevated mycoplasma IgG has been interpreted differently by different doctors. Lots of PANDAS docs treat kids with elevated IgG with antibiotics, though other doctors may not do that. To add to this - mycoplasma does not ALWAYS produce respiratory symptoms. (see http://emedicine.medscape.com/article/223609-overview ) So- your child could have had mycoplasma in the past or may have had it recently and may not have been symptomatic. He may not have produced elevate IgM or it could be that the IgM has dropped already. I suspect your doc will order follow-up mycoplasma titers to see if the IgG starts to drop with treatment.
  23. It is not unreasonable at all to want to have medical help that can get your daughter to the point of functioning.... However, it is also not likely to happen given the current stat of our medical system and the stage of knowledge we are at regarding all things PANS related. It sounds like a good primary doctor is really key for your daughter, and she is too old for a pediatrician. Could you check out some other support groups to find a primary doctor who thinks outside of the box? For example, a doctor who is known to be very good with chrons or other autoimmune disorders might be more likely to embrace the PANS concept and work with you through these infections. Or perhaps a doctor who is known to work well with individuals with immune deficiencies. Perhaps you could find lists of doctors through these support groups and then you and your daughter could interview the doctors until you find the one that is "just right". I am saying this because I changed pediatricians a year ago to someone who has a few other kids with PANS on his caseload. It has made all the difference in the world. He has been so supportive and steady through all of the exacerbations and blips we've encountered over the past year and has really helped me to stay afloat and steer the ship. Best wishes -
  24. I am not sure what you found with the connection between sensorineural hearing loss and eye movements. There is some connection, but I suspect it is primarily through the vestibular system. The 8th cranial nerve carries information from the vestibular system (inner ear/ semicircular canals and such), which tells us about head movement and our relationship to space, and also carries auditory information (from the chochlea). The information is from two different receptors and is actually carried in separate tracts, but it is in the same nerve geographically and the same sheath surrounds both tracts. Therefore, if you have damage to that nerve, you would have both hearing loss and vestibular dysfunction. That being said, vestibular information is highly correlated with eye movements. That is why you can look at an object and turn your head to the right without your eyes moving from the object - your eyes actually move at the exact same rate as your head but in the opposite direction. It is a very finely tuned reflex that we use all the time. Therefore, I think there is probably a strong connection between eye movements and vestibular - which may include the 8th cranial nerve. I do not think the connection between hearing and eye movements is as strong. I suspect that in many of our children, ALL sensory systems are out of whack so there is a correlation but not a causation between systems Some folk put more stock in auditory processing as the root of all sensory problems than I - so take my opinion for what it is worth and I would certainly be willing to step back if someone has an article that counters what I have said. I agree that the more likely culprit is fluid in the ears or something like that and I agree that a good audiology eval is in order.
  • Create New...