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mom love

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Everything posted by mom love

  1. Hi Norcalmom, My dd tested positive for myco p this past summer with no symptoms other than a very bad motor tic (new). Her IGM (current infection) just came up positive, with no number. The IGG was low. At re-test, the IGM was negative, again no number, just none detected, and IGG went up a little. She is on zithromax still. Was a myco p test done prior to the IVIG? My assumption is that you can get antibodies to myco p from other people, which I'm not sure is such a bad thing. Could offer protection?? IGM would show a current infection. A test prior to IVIG would tell you how much to worry maybe. I have a very good, thorough, long article that I will link. If you read it all, you will learn alot about myco p. It can be very nasty, like lyme and strep. But myco p holds on to and hides in the host cell. In time it can change the cellular makeup of the cell. It hides etc. http://cmr.asm.org/cgi/content/full/17/4/697 That is a very high number, but again, it could be from a pool of donors. You will see from the article too, that zithromax is reported to not necessarily be bactericidal in patients with compromised immune systems. There are other abx that older children can take, but for younger ones, zith is usually the first choice that I have found. Biaxin as well, perhaps a bit stronger?? I am not exactly sure. here is another interesting abstract to an article http://ajp.psychiatryonline.org/cgi/content/full/157/3/481-a
  2. mycoplasma p is aka walking pneumonia and it has been shown to be a factor/trigger in PITANDS (infection triggered autoimmune)among many on this forum. It is treated with a different antibiotic, usually zithromax. My guess is that the llmd did check for it. If you find stephanie2 on this forum she may be able to lend insight to the strep in the gut and using vanco. She now uses olive leaf extract for strep in her kids. You may want to research that and give it a try if you are debating using any more antibiotics. Have your other children had strep issues? Have they been tested lately for strep or had their titers drawn?
  3. Well, it is good that you went right to a llmd. It seems many pandas people on here end up there after years and years. So, those strep numbers were high, and are still high although obviously responding to the abx. So is your child not on ceftin now? on anything? Did the lyme doctor put your child on ceftin for the lyme or the strep? Why do they want to use vanco now? To target what? Drama and tantrums and moodiness can definitely be pandas. I think you were very lucky to have found this sort of by accident. Now you have to decide if you want to at least to prophylactic abx or nothing and continue checking titers right? Do you have other children? By the way, has her eating improved any since May? Can I assume the lyme doctor checked for mycoplasma pneumonia as well?
  4. I know most here hope and pray that there is not permanant damage to the brain from all of this. I think there is so much we do not know about how the brain functions and recovers. My hope is that by eradicating pathogens, reducing inflammation from allergies, whether environmental or food, and eliminating infection, the inflammation can end and the brain can heal.
  5. I do believe the BBB can open and close. My daughter had complete remissions at times over the years. I have been learning about the BBB and need more time to study it. Most infection triggered neurological disorders are all about the BBB, obviously. Bacteria aren't supposed to be able to get in there. Although there are certain pathways that aren't as protected. And it seems to be well documented that viruses can get through the BBB as well as lyme. It all has much to do about inflammation opening the BBB http://en.wikipedia.org/wiki/Blood-brain_barrier Pathophysiology The blood-brain barrier acts very effectively to protect the brain from many common bacterial infections. Thus, infections of the brain are very rare. However, since antibodies and antibiotics are too large to cross the blood-brain barrier, infections of the brain that do occur are often very serious and difficult to treat. However, the blood-brain barrier becomes more permeable during inflammation, meaning that some antibiotics can get across. Viruses easily bypass the blood-brain barrier by attaching themselves to circulating immune cells. An exception to the bacterial exclusion are the diseases caused by spirochetes, such as Borrelia, which causes Lyme disease, and Treponema pallidum, which causes syphilis. These harmful bacteria seem to breach the blood-brain barrier by physically tunneling through the blood vessel walls. IMHO I think that all the shots our kids receive from birth with all the viruses and bacteria and toxins like thimerisol and aluminum to name only a couple, can contribute to the disruption of the BBB and dysregulation of the immune system. I have read that the BBB acts like a sentry, triggering immune response to a pathogen. Brain protection AND immune system functioning. I also want to research more about when the BBB is open, likely due to inflammation, drugs like antibiotics actually get through more easily aiding in the eradication of the pathogen. It makes me want to find out more about the timing of antibiotics and steroids for those who use them.
  6. I agree with everything Kayanne wrote. You can only have a tic or tics. There may or may not be even subtle things you have otherwise overlooked or not known are pandas related as well. Your general doctor can run the basics if he or she will do it. ASO and Antidnase b strep titers, which rise over time so is best to run again in about 4 weeks, mycoplasma pneumonia, and lyme western blot are good basics. At least get the strep and myco p if they will run it. With a long respiratory illness, you could suspect both strep and myco p. My daughter's issues have definitely included strep, with titer rising only slightly, and most recently with myco p causing only a tic with it and no symptoms of myco p except the tic and positive blood test. zithromax is good for myco p and some strep and augmentin and omnicef are good for strep generally. If your local doc will not at least run the blood tests, and possibly consider a trial run of weeks of antibiotic, try to find a pandas expert or a lyme expert as they have been reported here to look at it all. It is my humble opinion that yes things like aspertame can trigger neurological symptoms, but in my daughter's case, I believe that was only after the blood brain barrier had been breeched by an infectious agent like strep or myco p. IMHO you have to investigate the infections.
  7. Oh Stephanie, I'm so sorry things are so hard right now. You are one of the strongest PANDAS moms I have encountered on this forum. You have helped so many people on here, including me. Hang in there. It was good to read your post actually so I know I'm not alone in my personal meltdowns and PTSD. I don't know how to use those crazy bottle opener contraptions either. My husband had to buy me the old fashioned one that just screws in and pulls out. I don't even know what this kleb thing is that you are dealing with now, and I don't even want to look up what it is, but I'm really sorry you have another thing to deal with. Hang in there and know that you are an appreciated member of this forum for me. Mom Love
  8. Well, if it makes you feel better, I would be jumping for that ct scan too. That is potentially too serious to think twice about. Again, just double check with the technician about the calibration right before he goes in. Let us know how it all turns out. And the doctor appt too. I sincerely hope and pray it is not another cyst.
  9. I am impressed that your dd 9 swallows pills. My dd 8 will not even try yet. Did she just take to it naturally or did you practice with something first? We use culturelle for kids (for us it is the powder) and florastor which can be bought in drug store shelves now and behind the counter at pharmacies in larger quantities. It is my understanding that florastor helps keep yeast at bay. We also use Theralac, which for us is a powder but does come in capsules. I believe some popular ones on this forum are theralac, custom probiotics and kirkman. There is another probiotic thread going on now and previous ones if you search it.
  10. Laure, I only suggested augmentin because it does seem to be a first choice for strep among doctors. I too thought my dd 8 would be covered for strep while on zithro, but she had an exacerbation while on zith and our doctor suggested adding augmentin for 3 weeks to cover for strep, and stay on the zithro because she is fighting myco p. She had her tonsils out while on the augmentin, and now 3 weeks later, she is better, praise God that doesn't change. I'm not sure if it is the T&A or the augmentin or both. There were alot of strep notes home from school. I'm sorry, I didn't know your history with augmentin. Certainly, maybe Dr. B will suggest something else or just stick with the zith. I thought your dh's strep titers were a little high, certainly the dnase b and maybe your dd was exposed. I would ask Dr. B about it. I am interested in the conversation on here about omnicef. I wonder if that could do the trick for us. Amoxicillan has failed for my dd for strep in the past but augmentin is a stronger medicine than amox, although still a penicillan. Good luck. I'm still muddling through myself. I hope your dh can get treated for that myco p.
  11. Augmentin does not cover mycoplasma pneumonia. zithromax or biaxin do. mycoplasma has no cell wall. There are others that adults can use but children cannot, but I cannot find my reference to it now. It is my belief that IGG and IGM for mycoplasma really vary, just like strep titers. We had low IGG and just "positive" IGM (current infection)and then negative IGM and only slightly higher IGG. If it were me, I would DEFINITELY treat with at least a z pack if he can get it, if not 10 or 20 days of zithromax. My children react to mycoplasma just like strep, and I am thinking maybe even worse for the mycoplasma. I believe he could stay on both the augmentin (for strep) and the zith at the same time. My children have been on both for the same reasons. You could also consider trying to treat your dd for both strep and myco p with the same drugs because of exposure at home, adding augmentin for at least 14 days I would say.
  12. Hi Kimballot, I am interested in your questions too. I don't know much about IVIG, but have read on here that insurance is less likely to cover it if it is a subclass deficiency. It is interesting that he is lower now than in the past. My dd was positive for mycoplasma this summer (IGM) and now negative for it with the IGG going up only slightly. I have read quite alot about it and it can be found throughout the body, in any organ and especially likes the respiratory tract. I suppose it could be possible it may have landed in his sinuses. How do you know he definitely had mycoplasma exposure? Why is he on diflucan? Is it for yeast or is it to help fight the mycoplasma? I read that somewhere on here. Who suggested he use it? Another ct scan is a hard decision. Would the results help to decide on another surgery? If not it would just be abx anyway right? You could start on biaxin and just see if he improves. All I can recommend is if you do the scan, make sure the person running the machine has calibrated it for his age and weight. Do you irrigate his sinuses with a neti pot or a bulb?
  13. I have seen members on here use it 2 times a week and others who feel 3 times a week is more protective. What dose (mg) is best for each dose? If anyone with experience with this could respond I'd appreciate it.
  14. Fixit, could you give the name and brand of your vitamin D? I have wondered about the vitamin D because are lanolin based which if I remember my research correctly is from sheep wool. How did you come to decide on the algae based?
  15. also the source of vita d should considered...alot are fish based... i use algae based
  16. Has anyone found any video or text of the treatments Amy Proal was talking about? She mentioned it would be talked about in her colleagues sessions on vitamin D and another one?
  17. Posting about personal things is not too much of my thing. I post when I think I have something to contribute but I need help. I've been reading around this forum since 07 when my then 4 yo dd had a sudden onset of tics, eye blinking and shoulder shrugging at a time when her brother had strep. She wasn't tested because she did not have classic symptoms but was sick with what we thought was a cold and long cough. Doc did ASO when we went in and lyme elisa. ASO was 200, not considered positive for our doctor at time. Found very basic PANDAS info online at the time and suspected it. We went in after all the time for swabs and 2 weeks later she was positive, treated with augmentin 10 days, tics remained, maybe a little less, then 2 weeks later tested positive, I asked for zith, got 5 days and started Bontech vitamins at same time. About a week later all tics went away. We attributed it to vitamins because doctors kept telling us PANDAS was rare and I should stop reading the internet. Before and after this time there was separation anxiety (at times very extreme), frequent urination, oppositional behavior, moodiness but it always passed or was what we thought just being a difficult child at times. We kept suspecting PANDAS and always made sure dd was treated for proven strep. She was usually symptomatic for it, treated and did just fine. Recently she has been really good for over two years, with some minimal stuff that came and went on its own or during a time of abx. Fast forward to now and she had developed a bad tic out of nowhere. Our doctor gave us zith right away at onset and ran titers which were neg for strep. The zith brought her back to 90 to 95% right away. I have consulted with a PANDAS expert and found her to be positive for myco p (no symptoms except for tic), probably explaining why she responded so well to the zith. But she is slipping now and doing it more. Classmates and parents are beginning to notice. She is also really moody, crying, angry on and off. One recommendation has been to add in augmentin for 3 weeks in case she was exposed to strep (there has been alot in her class). I am also wondering about the option of increasing the dose of zith to see if that helps. She is already on the strep dose for her weight, which is 300mg. But I see on here that many are on as high as 500 mg for little ones. I wonder for those on zith if increasing it alone has helped. I really dread the thought of two antibiotics for her tummy and the schedule of trying to fit in probiotics. So, what would you do? Is this what can happen when an ab stops working or could it be just exposure to something else? This high dose should be keeping the strep away. Myco p really sounds like a nasty bug with no cell wall etc. Not that strep is any picnic I know. It has proven, no controversy neurological complications. http://cmr.asm.org/cgi/content/full/17/4/697 Strep really needs this type of published research. If it's there, I haven't found it. Thanks Mom Love
  18. Oh my goodness! That is really traumatic for all ages and especially your pandas child. I understand all your concerns. Try not to feel guilty. I can tell you already do. I would give him all the safety and love he needs, no matter if it puts you back some. Maybe you can let him lead in telling you and showing you what he needs. Maybe it won't be as dramatic as you might think. But he needs to feel safe now. Those are issues a 7 year old cannot understand and should not be exposed to. Sometimes I think schools tell too much of "reality" so hopefully they were very general with it. Accident or on purpose are equally hard to wrap your 7 year old mind around. I'm so sorry you are going through this.
  19. Hi Colleen, I have been thinking of you. Why is not on the zith too? Is the fever there even with the tylenol? I have heard that fever after procedure is normal because it is the body's reaction to it. I have no experience with it other than my friend's child who refused to take his tylenol and spiked a fever. Their ent sent him to er for a CT scan to look for infection but was clear. He just didn't take his meds. I think I remember now that he swallows the zith pills right and its too sore now right? Is the augmentin a liquid? Could you get gp to rx a liquid zith for a week?
  20. Way to go blessed mom! Right now I give culturelle for kids (easy to buy at Walgreens or Walmart) and Florastor (behind counter at pharm). I have been looking into more comprehensive probiotics like Theralac, and Custom Probiotics. My dd is on zithromax and I did try to give her OLE and her tic got worse so I stopped it. Keep researching and printing information out to give your doctor. Go to the links at the top of the forum and print stuff out. Print out the NIMH document validating pandas. Give your doc a copy of Saving Sammy to keep. I hope your son responds. 21 days is a good start. For us, our doctor had to see our dd get worse going off abx or even going lower dose before she kept up the high dose. In the end it has to be clinical, just what works for your kid no matter what the research says. Praying for you too!
  21. Dr. Trifiletti, New Jersey, google him, he has a website, neuro kids something. Many big doctors out east. keep reading here. Dr. Bouboulis in CT, google him too. At least your ID doc upped the dose. Sounds like you need to stay there longer term though. Good luck!
  22. Blessed mom, You may want to consider getting all your test results on paper copies and searching for a new doctor. Early on when we first suspected pandas and the doctors were telling me to stop being a paranoid mother and to stop reading the internet, I found an older doctor in our group who had seen an OCD case directly after strep and he didn't think I was crazy. He wanted to see high titers though to treat. We have not had high titers but you do! Our daughter was in remission then so we were not sure what to do then anyway. Saving Sammy's doctor treated for only high titers and symptoms. I think you could find someone. Also, Dr. Trifilleti in New Jersey is a very smart, experienced doctor and does phone consults withoug a long wait I believe. I would definitely call him if I were you to get things going and to have someone to consult with your local doc. You may really want to consider hunting for a new local doc. DO's are generally more open minded and often think outside the box. Have you posted yet where you live? If you do, some may pm you information about docs. Since there are no abx in the picture right now, read some of Stephanie2's posts about olive leaf extract (OLE) you could do that to see if it helps. And yes, IMO you should believe that strep was and is doing a number on your child. You have the titers. He needs antibiotics IMO. At the very least look into OLE for immediate time being. You and your family are in my prayers.
  23. Asking God to give your daughter what she needs through her pediatrician and immunologist and through HIS direct healing.
  24. Blessed mom, What antibiotic is your child on now? From what I see on here the wait for Dr. Latimer is long. You should get the appointment today and talk to your current pediatrician to see if she will extend the antibiotics for as long as you can. Print out information from the helpful threads here and give it to your doctor, buy the Saving Sammy book and give her a copy to keep. Motrin can help as well. Keep reading and posting.
  25. We had nothing like you describe at birth or as a baby, but my non pandas son was diagnosed with viral torticolis at age 2, with symptoms of fever and pain moving his neck, but it turned out to be an abscess in the back of his throat (not attached to tonsil) shown up on ct scan that had to be drained surgically and the bacteria was strep, but not group A, but still was strep. He was put on clindamyacin in hospital and at home after surgery. I think torticolis is a fairly vague diagnosis. This I am sure has not much to do with your situation because my son was very sick and not getting better, but I only posted because of the initial diagnosis name. Who knows if bacteria can cause similar neck issues without sick symptoms.
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