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landamom

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Everything posted by landamom

  1. Lisa, first I'm sorry to hear that you are going through this. I would advise you to make the appointment with Dr. Jones tomorrow. I would be surprised if you get an appointment earlier then March. Our appointment with him is in February, and we scheduled it in September. His first appointment, I believe is $900. According to the nurse, he spends a good two hours with the family and they advise writing down all your questions for him. I know others on this board have been to see him so hopefully they will chime in. I'm not sure where you live but another option for you might be the Jemsek clinic in DC. You can get in sooner there, but there are other trade offs. best of luck! The uncertainly of Lyme is a pain in the butt.
  2. Thanks for the replies, everyone! We changed back to the smaller dosage and the tics have calmed back down to where they were prior to the high dose probiotics. I'm going to ask Dr. B about this the next time we talk to him to see if he's ever seen this in other patients. LLM - I did consider yeast. She just doesn't have any other symptoms of yeast overgrowth. Having dealt with yeast overgrowth in the gut myself, I don't think that's the case with her. But it's in the back of my mind if things continue!
  3. Thanks for your response - did they diminish with a decrease in dosage? I'm glad to hear it isn't my imagination!
  4. Has anyone seen an increase in tics in their child that seem to corolate with probiotic use? We had been giving DD8 the Primadopholous kids chewable probiotics for a while, a total of 3 billion a day (two chewables). Well, I ran out and whole foods was also out, so I started giving her another kind that I had in the fridge. It's a 15 billion strain in powder form. Since then she she has had a big increase in an eye rolling tic and also a tummy tic. Additionally she has been having stomache pain and loose stools. I considered other things going on like maybe she had a virus or something but there is no other signs of illness. I know the probiotics are very beneficial but can there be too much of a good thing?
  5. LLM, I'm curious what abx your son is on or has been on? The reason I am asking is because my husband started on Doxy recently for myco p and possible Lyme. He has been experiencing hearing loss and apparently it can be associated with doxy use and the use of other "cyclines". Have no idea if this is the case with you, it's just something we have been dealing with and trying to figure out also so I thought I would let you know what we have found. Best of luck with this-
  6. I'm from NY... Lived and worked in Manhattan many years. I wouldn't recommend any of the hotels there unless you can stay at the super ritzy ones because NYC has a huge problem with bed bugs! Central Park zoo is nice, but I echo LLM - the museums are your best bet. Maybe the Hayden Planetarium. Statue of Liberty really isn't worth the wait and hassle to get there. Downtown is still having issues from the hurricane. RockCenter tree is nice and you can ice skate there. Did you really mean Toys R Us or FAO Schwartz?? FAO is the big, famous toy store.
  7. Our daughters total IgG was 460, her subclass 1 is in the 200s and subclass 2 is in the 90s we are awaiting preapproval for IvIg. Not holding out of much hope though because I worry they will want to do a vaccine challenge and I don't want to risk that. What are your levels?
  8. Paisley - just wondering what makes you say that she may be the first documented case of PANDAS brought on by Coxsackie? Dr. T is one of our docs, too. Our dd has high titers for it also and Dr. T has said he sees that a lot in PANDAS kids. Can you explain a bit about how he felt it might be the definitive cause? Thanks!
  9. Hi Hayley, I hope you are doing well! I was wondering if anyone ever PMed you about the IvIg for CVID? Dr. B has diagnosed my dd with CVID and wants her to do IvIg for it. I'm nervous about... I don't know anyone whose done this just for CVID. Thanks!
  10. Can anyone explain the difference between PEX and IvIg and why one would be used over the other? Thank you!
  11. Dr. Jones is a pediatric LLMD and has literally helped THOUSANDS of kids from pretty much every country and state. He is who Dr.B consults with and is also in CT. In D.C. there is Dr. Jemsek with the Jemsek clinic and he is also an LLMD. He does not see anyone himself but his staff works with Lyme and PANDAS kids. Best of luck-
  12. Bumping in case anyone can help... Does this high level of ANti D nase mean that my little one HAS strep? I'm trying to figure out if I need to peruse getting her treated. Thank you!
  13. I don't think you flare around myco in the same way a child can when just around someone with strep. With myco ithe concern is more that it is so easy to get reinfected and if you are already prone to it and live with a carrier, you are pretty much passing it back and forth. That's true for strep, too.
  14. MycoP has been seen a lot as a trigger for PANS. It has no cell wall so it can be very difficult to treat if you have it chronically because it hides everywhere, similar to strep. MycoP is actually a relative of strep that mutated millions of years ago so maybe that is the connection you have read about? Myco can be gotten through insects in addition to air, food, etc. so it can be a co-infection with Lyme. When Lyme is suspected it is routine for LLMDs to check for Myco, too.
  15. We are in a similar boat ... DD8 has a chronic mycoP infection that we have been treating. We had our first appointment at Dr. Bs office in September. We were also given lab orders to have all of us tested for mycoP and strep to see if we are carriers. Turns out my DH ( who also has a chronic cough) has very high levels of myco at almost 1000 and no strep, and my DD4 has high antibodies for Strep and no MycoP. Still have not seen my labs yet but I expect to have high strep given that I get chronic sinus infections. Our follow up is not for another three weeks, unfortunately, so I don't know how Dr. B will proceed. Best of luck for continued improvement!
  16. Hi all, So we have been going through the process of getting us all tested to see our levels of MycoP and strep as per Dr. B's suggestion. My DD8 who has PANDAS may possibly be considered a low strep responder and her anti d-nase level is 168 with the normal range of 0-170. Now, my DD4 was just tested and her Anti D-nase level came back as HIGH at 104 with the range of 0-70. What determines the difference in range? Is it just age? I don't know why but that just seems to be odd to me. Do they expect kids to get more and more antibodies to strep as they get older simply because they are exposed so often? Would this high level mean that she has been exposed more then the "typical" 4 year old? I've been suspecting chronic strep in her because of her constant supper stinky breath Thanks!
  17. Our daughter was still having problems when we spoke to Dr. T, and one of the first things he asked was what kind of probiotics we used. Sure enough it had strep in it, and I really believe it was causing a problem for her. It was a 100 billion plus strain which I thought was great... Had no clue that there was strep in it. The ones she takes now has only 3 billion per chewable which I think is too low but the more strains, the higher the chance of strep being in there. Hopefully others wil reply with their suggestions because I'd also like to find a high dose probio without the strep in it! Best of luck!
  18. My dd8 has also had some mouth sores, too, lately on her gums. I have also heard they can be caused/exacerbated by abx use. And yep, viruses can cause them but also an overall decrease in your immune system can bring them out. I've never had them on my lips, but I often get them on my gums when I get run down or have a cold. It's great you are getting so many helpful responses
  19. Thank you, both, for your responses. We are in the process of ruling out the serious things, but it's just so hard to wait on test results and doctor calls! It's really helpful to hear from other parents so that I'm not having full on panic attacks all day Re: Lyme... Yes we are treating it but not as fully as we could probably treat. DD is taking a combo of full dose Zithromax and amoxycillin, which can cover Lyme but it is mainly for the MycoP that we KNOW she still has. We aren't doing any cyst busting... im not ready for that. Lyme is a pain in the a$$. When her symptoms started and we first did blood work, she was CDC positive for Lyme in her IgM, so there was no question she had it and it was caught early. However, did we catch it and treat it early enough to get rid of it fairly easily? That I don't know. Her symptoms have always been the same since we started - motor and vocal tics and a chronic cough. She hasn't ( thank God) had the physical symptoms of Lyme so it's hard to know what is what. So, yeah I wonder if the wonky levels in the CBC have to do with Lyme, but how will I ever know?! Thanks again!
  20. Hello, My DD just had some more lab work done, including another CBC. Her neutrophils level was low and lymphs were high. It seems like maybe this can be related to autoimmune disease according to google, but before I start freaking out thinking it's something else (ok, too late I'm already freaking out) I just wanted to see if anyone else's child has had these numbers be out of whack. Thank you!!!
  21. We were there two weeks ago but I just wanted to say good luck and lots of happy thoughts!
  22. It is just so frustrating, isn't it? My dd did great for almost 4 weeks and then started to backslide and now seems to be doing better... But who knows how long it will last. I know they say recovery is saw toothed, but I just wish I knew why. Are they being exposed to a virus and then getting better once that passes? Or could it be that whatever bacteria that triggered the PANS in the first place has a life cycle it has to go through before completely going away? Ash- our kids sound so similar ... My dd is also in the low 500s for total IgG and her subclass 1 and 2 are both low outside range. Subclass 3 and 4 are low but within range. We were also told we need to watch and recheck by the end of the year and possibly consider IvIg. Makes me wonder if it could be due to the chronic MycoP? Also, I was wondering if your DS has had any low WBC on any labs? My dd has had that. I have read it could be due to MycoP.
  23. Hi, we are also working with Dr. T. He IS conservative when it comes to medication, but he will also kind of do what you feel is best, so if you said you wanted another month of Zithromax, I bet he would give you a refill. How is your son doing - have you seen all symptoms resolve on Zithromax? We have been on it for a while because my dd also has Myco P, however we had to add Augmentin to the mix before seeing any real improvement. I would say she is probably at 80% now and Dr. T is already talking about prophylactic dose for her, too. I think it's too soon as I don't think that should be done until the child is 100% symptom free, otherwise there is still either infection or inflammation going on. We have also been to Dr. B and they advised at least 4 months of abx treatment at full strength. We are still hoping to get to 100% otherwise we will consider IvIg. BTW, my daughter is also immune deficient based on some of Dr. T's tests... what kind of deficiency does your Ds have? Best of luck to you!!
  24. We actually just had a bottle of Zithromax go bad after 5 days... So annoying! It turned brown back to the pharmacy tomorrow to get that refunded!
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