

ptcgirl
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Everything posted by ptcgirl
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Thanks for posting!!
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http://www.youtube.com/watch?v=WFysLT63Lc0&feature=youtube_gdata_player Hope this link works!
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I also have a close friend that was completely disregarded by Dr. T. He just stopped responding and wouldn't return calls, emails, etc. Dr. B is good with communication if you do phone consults. Otherwise, I think he is overloaded with patients and it is difficult to make contact.
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Homeschooling really helps with lowering the stress for everyone in our house. When things were really bad going to school just became too hard for DD and truly made everything worse for her (and the rest of us). Lowering the stress level/pressure and limiting some of the illnesses helped us. However, homeschooling isn't for everyone. Depending on your state there may be a public/hybrid program. Hang in there. You are not alone. We took a loan out on our house to cover medical expenses and asked family for help too. Worth it for our kids, but hard to swallow. Will pray for your family.
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Ok, I'm confused. Is there a difference in the type of mycoplasmas? I know one is called walking pneumonia and there is another one associated with Lyme co-infections. Are they really the same thing? I'm having a hard time knowing the difference here. My dd tested positive for Mycoplasma back in May before IVIG. Please give me some info.
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Who do you order from? I'd like for the probiotics to come on ice too.
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It all makes sense now. The very next day she came down with some nasty virus/infection. Sore throat, coughing, fever. Yuck.
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Well, of course this would happen. I knew it would as soon as I posted it.... Huge flare of anger, depression and OCD today. Crap. Well, good thing we have the next IVIG scheduled for next week. Hope this one helps and does the "magic bullet" trick. I'm so down right now. My dd is SO upset. Went through an hour of complete melt down. Just seems so hard to keep fighting this mess. Why won't it just go away and STAY away.... Oh, btw, she is still on abx. (Augmentin) Hope everyone else is having a better day. Mine stunk.
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Interesting! I'm so ready to start pulling the Zoloft out. Hearing your story gives me hope about doing it. We see Dr. B next week so I'm looking forward to getting his stamp of approval too. Was Dr. Storch on board with lowering the dosage? Just curious... Isn't it amazing what a few weeks of therapy can do? YAY! So thankful for Dr. Storch and his program. That is where our therapist trained. Such a blessing! Hope it continues to go well.
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Dr. B is our PANDAS dr and performed the IVIG. The IVIG changed my daughter's outlook on life within the first week. She went from being highly full of anxiety, OCD, depressed and hating life to being joyful and happy. That was the biggest difference that we saw with IVIG. I also firmly believe that should wouldn't have even attempted the ERP without first having the IVIG. Her attitude truly changed after the IVIG. The CBT/ERP was REALLY helpful with the OCD which was so entrenched in her since she had it for so long (5 years). It was an intensive 3 week daily program (the same one done in FL by Storch). It was unbelievable how much it helped. She quickly faced fears that were impossible to even mention in the house for years. She worked through nearly 30 OCD items within the 3 weeks. Dr. Keeley in Atlanta was amazing with her and I feel incredibly blessed to have her work with my DD. I'm sure we will continue to work with her here and there if things pop up again. The tools that she gave my daughter are just incredible. As far as repeating the IVIG, since my DD is still on Zoloft, I'm not sure if she will be this good without it. That is our goal: med free, ocd free. For this next round (assuming Dr. B will be on board), I'd like to wean her off the zoloft and see what happens. Dr. B also said from the beginning with her that he'd like to get her to 100% and then do a couple more to ensure it. So, that is where we are today! I'm still journaling and trying to keep an accurate diary of how things have progressed. I know how nervous we were about having IVIG done for our child (so much so that we put it off far too long). If anyone else is sitting on the fence and would like to talk, please send me a message. Also, finding an excellent CBT/ERP therapist was crucial for us. In my humble opinion, travel wherever you need to go, spend what you need to spend. I just wish we would have done it sooner. Losing 5 years of a childhood is terrible. Prayers for all of our wonderful children!
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I cannot believe I'm able to say this, but my daughter is 100%. Truly 100% right now and has been for the last two weeks. We even went on a cruise last week and I was scared about what might happen. She had several exposures to things that would have set her off before. nothing. Just normal 12 year old behavior. She is 100%. I so wish we would have given the IVIG and ERP intensive five years ago. I'm amazed at the difference. No OCD (it was moderate to severe). No anxiety (it was pretty severe). No tics (it was very mild). She is off of abilify and we plan to start dropping the zoloft slowly with dr b's blessing. She goes back for another ivig next week. Please God let this stay with her. I'm completely in awe of the healing. Thank God!
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Tonsillectomy question re:IV abx
ptcgirl replied to 1tiredmama's topic in PANS / PANDAS (Lyme included)
My dd had the Iv abx during her t and a. Did fantastically for 9 months. Would recommend Iv abx. -
Dr.s still not believing Abx have done something
ptcgirl replied to LindaMW's topic in PANS / PANDAS (Lyme included)
We all know and can relate to how frustrating it is. Sounds like u r on the right track getting to a PANDAS/PANS dr ASAP. Good luck and remember you r not alone. -
Different abx work for various infections. If Augmentin doesn't work try a different one. We've had to do this too and it is worth the trial and error.
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Thanks for telling us about this webinar. I didn't watch it live but was able to still view it afterwards and it was very informative. My hubby and I both enjoyed it. Thanks!
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Good luck on your appt! Safe travels home too.
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So sad to hear the news. At least you already know what he is dealing with and have a llmd. Hang in there. All is not lost. Big hugs to you and yours.
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You know when you're on the right track when.....
ptcgirl replied to MashedTaters's topic in PANS / PANDAS (Lyme included)
Great news!!! -
After a couple of weeks of ERP, my daughter is doing so well. I cannot tell you how much finding the right therapist has helped my DD. She still has a lot of work to do, but I am just so glad we found her. Wish it was five years ago, but better now than never. Again, if you know of anyone looking for help in the Atlanta Georgia area, Dr. Keeley is the fantastic. Finally, between the IVIG taking the edge off and ERP my daughter really is getting better. Thank GOD! I am actually afraid of stopping the daily sessions. Does anyone have advice on how often to continue check ins?
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Need suggestions for treating post lVlG headache
ptcgirl replied to minimaxwell's topic in PANS / PANDAS (Lyme included)
Really pushing fluids and keeping the Ibuprofen/benadryl going every 6 hours seemed to help my DD. She's only had one IVIG so far, but the headaches weren't too much to handle. The Zofran helped with the nausea on day 3. Kept her from vomiting on the plane ride home! Strangely, keeping food in her seemed to help with the nausea too. When my DD had Lyme she had a bad reaction to predinsone (not like Drew's, but severe depression). Now that the Lyme is gone she was able to take it without any problems. Weird. Sounds like Dr T has the right idea on how to handle all of this. Good luck! -
Sounds like the right plan for us too.
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I really like westchester too. Small and easy to navigate. About 20 min from Dr b. delta and air tran fly there for sure.
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Ah ha! Found something new! There is a difference in the Culturelle stuff! They use Lactobacillus GG YAY! http://www.ncbi.nlm.nih.gov/pubmed/7552958 Effect of Lactobacillus rhamnosus strain GG (ATCC 53103) on the growth of Streptococcus sobrinus in vitro. Abstract Lactobacillus GG, a recently characterized L. rhamnosus GG strain (ATCC 53103), has been shown to exert inhibitory activity against a variety of bacterial species, including streptococci. We isolated and studied the effect of the inhibitory substance of Lactobacillus GG on some oral streptococci. The inhibitory activity of the isolated substance was weak, but some growth inhibition was observed in Streptococcus sobrinus pretreated with the substance in comparison with untreated controls. Zones of growth inhibition on agar plates were apparent only at pH values below 5, indicating that the inhibitory activity was restricted to a low pH range. Growth curve experiments showed a statistically significant inhibition between series with and without the isolated substance (P < 0.05). The ultrastructure of S. sobrinus was not affected when treated with the inhibitory substance. The Lactobacillus GG itself did not ferment sucrose. The results offer interesting perspectives for future research focusing on the protective function of normal flora and in the attempt to replace harmful bacterial species in oral microflora with less harmful ones.
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so this is the confusing part to me. They ARE different, but the ingredient listings on probiotics doesn't differentiate between them from what I can tell. Both strep thermophilus and lactococcus latis are from the same "Order, Lactobacillales," for the bacteria (although they are different strains from what I can tell. On the Culturelle it states that the probiotic is Lactobacillus GG. (Not sure what the GG stands for.)So, couldn't it be either strep thermophilus or lactococcus latis since they are part of that same order? I copied this from http://microbewiki.kenyon.edu/index.php/Streptococcus_thermophilus: Higher order taxa: Kingdom: Bacteria Phylum: Firmicutes Class: Bacilli Order: Lactobacillales Family: Streptococcaceae Genus: Streptococcus Species: Streptococcus thermophilus Still very confused about all of this. Wish I had a degree in biology so I could really understand all of this....
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I'm still pretty concerned about all of the strep being in these items. Can't believe I never knew it before. I'm going to eliminate yogurt and (uncooked)cheese from my DD's diet. We eliminated gluten before for her but it didn't seem to make any difference at all. Very interesting. I'll keep you posted on the results. I'm not sure what to do about the probiotic pills now. I'm looking for one that isn't Lactococcus lactis based and without Streptococcus. Just not sure if one is or isn't at this point. Any ideas?