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ptcgirl

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  1. I haven't posted in a while, but I feel compelled to let everyone know about this and ask some questions. For the last few months my 13dd had been in a flare. Not a terrible horrible crisis mode one but significant since she was doing IVIGs and staying on abx. We thought Lyme had resurfaced: it hadn't. Coinfections: nope. No mycoplasma. No strep. I started to think this was her new baseline which really wasn't good enough. Completely confused me. Making a long story short, Dr had ordered candida blood test back in November but Dr never received them from LabCorp. I didn't even know it was ordered or I would have followed up on it. After much praying and frustration, we finally got the results in early January and dd was extremely high on Candida. Started her on Diflucan and nystatin. Within a couple of days she was well again. Flare gone. No symptoms. Happy. Healthy. Better than I think I've ever seen her. My parents made a statement that she was better than normal 13 year old girls. So I'm just thanking God that she is well and letting you guys know what happened to us. Now, how do we keep the Candida in check? I've read about Grapefruit seed, but she can't take it with Benadryl or her low dose of Zoloft (tapering off). Any ideas? I'm open to supplements. I know about the diet aspect but she is a vegetarian and taking carbs and fruit out of her diet won't happen here. Already giving one florastor a day. Not sure if it is enough or if we should switch. What do you guys do or think? Thanks!!!
  2. Dr. Storch was kind enough to give us the name and number of a wonderful therapist that was trained and worked with him there for many years. We too had some issues that were specific to the home environment. The CBT/ERP made a world of difference. It is crucial for my dd. They can give your child the tools needed to get back into life. Highly recommend.
  3. My dd12 just had her fourth IVIG done. The first IVIG got her to 100% for 5 weeks, the second one to about 90% for 8 weeks, the third one didn't do very much (was about 80% for 9 weeks), and the fourth one is too soon to tell. We just found out that Lyme came back so we are thinking that is why the third one wasn't as effective. IVIGs are very easy and my daughter looks forward to them. She finds it relaxing and it helps her feel better.
  4. Thank you so much for sharing your story. It means a tremendous amount to those of us still in the trenches.
  5. Can't they just blood test and check titers. Why put the dogs under?
  6. Back when my DD started with PANDAS (in Fall of 2006), there seemed to be an outbreak in the Southeastern part of the US. I remember when we took her to Emory to have an MRI the doctor mentioned that there was an unusual strain of strep that didn't respond to category 1 abx and that 20% of the kids needed a catergory 2. What is odd is there seems to be another strain this fall. I've heard of SO many kids that are popping up with sudden onset OCD this fall or having very major flares (for those already with PANDAS). I am really wondering what is out there right now....
  7. Fluids before, during, and after IVIG help with headaches. Ibuprofen and benadryl every 6 hours afterwards (they will give you a sheet on this at the IVIG center). I also asked for a script for zofran in case of vomiting, but haven't needed it. They give the steroid through the IV. Very easy process for us so far (DD had 3 in 2012). Dr. B's nurses really know what they are doing. Just listen to them and (try to) relax. It seems much more overwhelming than it actually is. Make sure to bring things for your child to quietly do at the center. There is wifi and a tv in each room. There is also a small refrigerator and microwave at the center for snacks/lunch. Good luck! I hope the IVIG really helps!!!
  8. Sorry I didn't get back on here sooner, Lulu! My daughter enjoys the whole experience of it. We travel from out of state so we always make a "fun trip" the day before treatment (visiting NYC, Yale, etc). I also let her eat whichever foods she wants and limit rules. The BIG thing for my dd is unlimited computer access though. At home, she isn't allowed to just sit on the computer all day with headphones on, eating whatever her heart desires, not do school work, etc. The only stipulation I put on her is that she HAS to drink lots of water during IVIG (and take her meds). But otherwise I let her do what she wants (which is a big deal for my now 13 year old computer loving kid. She hasn't had much of side effects (slight nausea and headaches when she doesn't drink enough). She also isn't afraid of shots, bloodwork, etc so it makes it much easier in that regard. Thankfully they don't try to do a strep culture because then she would "freak out!"
  9. We are waiting to hear back from our doctor about the preapproval to get my dd more IVIGs. I know that my dd has some IGA deficiencies (that I'm hoping will improve her chances or the way it is written up by the dr office), but am very concerned that she won't get approval. Has anyone's child gotten approval for IVIGs after the Nov. 1 cutoff date? Any info would be greatly appreciated.
  10. We've homeschooled off and on for this very reason and some others. Homeschooling absolutely helps on the exposure to sick kids, but it isn't without it's own set of issues. Socialization for us during the younger years was pretty easy to obtain through groups and neighborhood kids, but now that DD is in 8th grade things are different. The older kids curriculum is just more academically involved and time consuming. It also isn't as easy to have "play dates" with 13 year olds. My daughter loved being homeschooled when she was in 2nd and 3rd grade, but really misses the social aspect of school now that she's older. Makes it a difficult choice for us now. Good luck.
  11. My daughter's are very interesting looking. They will literally change throughout the day. Sometimes they go all the way to her mid-calf and other times they are more isolated to her upper thigh. They are reddish and purpleish in color. Heat also seems to effect them. About four years ago she had them and they were on her upper arms and back. Then they went completely away (I think due to abx). No scarring leftover or anything. They look a tremendous amount like stretch marks. When she first got them, that is exactly what I thought they were. Dr. J in CT said (hope I'm stating this right) that it is because the Bartonella attacks the weakest areas first (therefore areas of growth and stretching or any area where there has been injury).
  12. We found our wonderful erp therapist by getting a recommendation from dr Eric Storch at USF. I highly recommend asking him if he knows of anyone in your area that can do erp the way they do it at USF. We were able to complete the exact same program 30 miles from my home instead of traveling out of state. Pm me if u need his contact info.
  13. Laurielee123, the good news in our daughters' similarities is that I can also tell you that my daughter doesn't remember hardly any of the initial onset (which was by FAR the worst for us). I don't know if it was just too traumatic and she's blocked it out or what, but she really doesn't recall how bad it was or the things she thought, did, or said. That to me is a blessing beyond belief. I wish I could forget how awful that time was. I know that I will never fully recover from it, but time moves on and so do we. She's had very bad patches since (of course) but nothing that was so scary as that first onset. I imagine a lot of it has to do with the unknowing aspect. We just had no idea what in the world was happening to our little girl and all of our lives were turned upside down. Hard to think about still....
  14. Your daughter sounds EXACTLY like what happened to my daughter 7 years ago. It is almost like you've written her story for me. She is now almost 13 and this has been a very LONG road for us. She does sound like a very classic case of PANS/PANDAS. My suggestion would be to find a PANDAS doctor and stay on top of this. Although she is better right now, this will likely not be an isolated event. I sure hope I'm wrong, but I found myself digging my head in the sand every time she got better and in the end it hurt her. I wish I had treated it more aggressively from the beginning. There really wasn't a whole lot of information back then (in my defense). For example, if I could go back in the past, I would have kept her on a low dose of abx for prevention (particularly after having her tonsils removed. I wish you and your child the best of luck.
  15. My daughter is off of abx for the month in order to find out if she has Lyme again this time using the newer blood culture testing. My question is, how many of you have used this test? What were the results? Someone locally (we travel out of state for treatment)mentioned to me that it doesn't cover all of the strains of Lyme and since we live in the Southeast it won't be able to find the types that are here. Anyone know anything about this?
  16. I couldn't get the fist link to work. Can you try reposting it or let me know how to find it? Thanks!!!
  17. I thought there was a spot to put our "history" on this site, but couldn't find it. Is there a place where people can post histories?
  18. From our experience, each Ivig is different. My dd12 had one Ivig in may and had 100% improvement then reinfected, second Ivig in july with decent improvement then reinfected, and then third Ivig in sept with poor results so far. My dd had Lyme and coinfections, however, so it makes her case more difficult. She's also had PANDAS since 2006 so the length of time with it is making a difference too. Good luck in your decision. The good news is Ivig is a very easy treatment and my daughter actually kind of enjoys them.
  19. Wow. Lots of good info. Thanks everyone. I was at such a low point and your comments really helped. Strangely, dd is doing really well yesterday and today. So weird. I guess she was herxing. She's off the abx and happy with very little OCD. I'm sure it is Bartonella again. I just dont even want to think about putting her back through the herxing. Ugh. There has GOT to be an easier way to fight this stuff.
  20. Wonderful news!!! Thanks for sharing something so positive. We all need to hear these wonderful success stories.
  21. After such a great summer that was mostly where my 12 yr old daughter was back to being a normal 12 year old (did 3 weeks intensive ERP and 2 ivigs over summer), we are back to where she was six months ago. Yesterday we went for a followup ERP due to relapse and my DD literally walked out of the office because she couldn't handle it any more. Honestly, I think she was more angry about being back at this point and didn't want to even bother with the ERP. So freaking depressing. I don't know what the heck is going on. Her third ivig was in early Sept and she is nothing but worse OCD-wise. She is NOT sick at all. Allergies are well maintained. No one is sick in the house. The only thing I can think of is that Lyme and it's co-infections must be back. Talked to Dr. J's office yesterday, he wants her to stay off abx for the month so she can have the new Advanced Lab Lyme Culture test done. Not sure what Dr. B will think about this and (of course) haven't heard back from the email I sent his nurses in the IVIG center. The lack of communication really gets old. I know, I know I shouldn't complain because there are so many patients and so few doctors, but it doesn't mean it isn't annoying and hard to deal with. I just want my daughter to be well again and off this crazy roller coaster. Thanks for letting me vent. I'm just at a point of not knowing what to do anymore. I feel like this cycle will never end. Does anyone really ever get better from this (and STAY better) besides Sammy from Saving Sammy? I need TRUE success stories of long term remission/cures. I need hope because I feel like this is hopeless.
  22. My DD drinks it sometimes and we've never noticed a difference (didn't ever think to look for one though). She just likes the way it tastes. Guess I'll encourage her to drink more of it. : )
  23. I wonder what kind is administered in Dr. B's Ivig? I emailed the nurses and didn't hear back. Anyone know?
  24. Those pills are huge too. My daughter can take pills pretty easily but no those. They are gigantic. The chewables are nasty and get stuck in your teeth. She has to take the liquid and it is a pain in the butt due to refrigeration and the expiring thing.
  25. Thenmama, I am thinking the same thing. This disorder is supported by our own government through NIMH. This doesn't make any sense. I could understand if this was something different. I understand some doctors being skeptical, but to remove a child.... This isn't right. I'm pretty scared and want to find out more info.
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