Jump to content
ACN Latitudes Forums

mommakath

Members
  • Posts

    98
  • Joined

  • Last visited

Profile Information

  • Gender
    Female
  • Location
    Georgia

mommakath's Achievements

  1. To finish info above, the bendryl and /or zyrtec seem to make it worse. He said they feel dry and like there is something in them. We have seen eye doctor several times and she is perplexed. This also leads me to think tic. Any other meds that can cause this sort of thing?
  2. My PANS son started an eye rolling movement with a neck jerk after being on asthma inhaler for 3 months. He also gets weekly sub Q IG (did ivig monthly previously thru IV) and a host of other PANS meds, but the only change had been this inhaler. Stop inhsaler, eye rolling almost stops. Start a different inhaler two months later, starts back up within two days. Stop all inhalers. Would rather live with cough, shortness of breathe when exercising. Now, it is back. Have wondered in my mind ixf this isthe beginnings of a tic. He has said he wants to have his eyes removed. It feels like something is in them, hence the cock of the neck and the rolling of them. We have tried drops, the antihistime drops and then steroid drops made it worse. The benadryl and Dairy free and gluten free for 1.5 years. Just started back to school and enjoying life after a 2.5 year rough journey with PANS. My mind is thinking is germ load at school causing some sort of up tick? Or, are we on some sort of stimulating medication but really no med changes other than ones noted with onset and uptick. Any insights? Do you see a nuero for this? Thanks!
  3. We use MINI MINERALS 99.99% Pure Angstrom Element (liquid) produced and distributed by WHM Alpine, CA......www.worldhealthmall.com Also use Calcium and one drop of Lithium. Pure Elements so 98% absorption rate. They do not require digestion or enzyme activity and will not interfere with prescription meds. Told to take with Calcium and 30 minutes before or after anything else as pure elements.
  4. Our doc explained that GABA levels drop right before and during puberty. She uses it to get the moods regulated in the puberty years. We have noticed positive changes. But, had to find right dose. Different for each of my kids.
  5. It has really helped us and after 1.5 years of ivig and 2.5 years of lyme, bart, myco treatments, along with lots of gut healing, DD14 is finally getting a healthy immune system that is showing signs of working as it should. But, it's not been any one thing.....it's been the combo. I think I've read that low IgA means certain types on ivig only? May be wrong on this but was wondering if that may have been part of the bad reaction. I will say that we changed brands and went from every other month to monthly. Monthly made a huge difference in their reactions. Plus, we tweaked pre and post meds until we got them comfortable. So, a win for us. And, I have two kids getting it.
  6. We have been dealing with rising IgG and IgM titers for over 2 years. Just this last month, after 2 years of ivig and increasing biaxin dose have we seen response. It was explained to me that since her IgG is still rising but her IgM has started declining that the body i finally reacting as it should and we are seeing response. Google Garth Nicholson and he has written and researched MycoP extensively. And, with all exposures, symptoms can disappear after 10 days while the bacteria remains active. MycoP symptoms overlap with Pans and Lyme quite a bit. Best Wishes!
  7. Okay, DD14 been getting IVIG for almost 2 years. The last few months, she has been having issues with equilibrium afterwards, lasting about 10 days. Six months ago it would manifest as severe motion sickness only in the car. The last three months it has changed to being more of it appearing as though the floor is moving. It is worse in smaller rooms. Docs have been perplexed. Ears have been checked out by pediatrician. He is referring us to an ENT but mentioned us talking with IVIG doc about it and see if her body is being sensitive to the IVIG which would mean possible discontinuation, in his opinion. He is not a pandas doc but he is willing to read up on it all and remain open. He gave meclizine, told us to reduce benadryl, and get with IVIG doc. She takes 15 mg prednisone day before, solumedrol with infusions day 1 & 2, 25 mg bendryl and motrin every 6 hours starting day of infusion and going for 3 days post. She has had bad headaches and vomiting in past on day 5/6 after infusion so that's the reason we carry the motrin and benadryl out so far. Has helped with those symptoms. We did not have equilibrium issues until a month after we changed to Gammunex C and started monthly ivig from every other month. With the change to Gammunex C she is getting more fluids - 500 ml saline pre and post, 1000 ml D5W with IVIG. Wondering if increased fluids could be a part of it. Although, last infusion we cut post saline down to 250ml to see if it would help. No change. Any ideas? Ever experienced this? THANKS!
  8. Okay, DD14 been getting IVIG for almost 2 years. The last few months, she has been having issues with equilibrium afterwards, lasting about 10 days. Six months ago it would manifest as severe motion sickness only in the car. The last three months it has changed to being more of it appearing as though the floor is moving. It is worse in smaller rooms. Docs have been perplexed. Ears have been checked out by pediatrician. He is referring us to an ENT but mentioned us talking with IVIG doc about it and see if her body is being sensitive to the IVIG which would mean possible discontinuation, in his opinion. He is not a pandas doc but he is willing to read up on it all and remain open. He gave meclizine, told us to reduce benadryl, and get with IVIG doc. She takes 15 mg prednisone day before, solumedrol with infusions day 1 & 2, 25 mg bendryl and motrin every 6 hours starting day of infusion and going for 3 days post. She has had bad headaches and vomiting in past on day 5/6 after infusion so that's the reason we carry the motrin and benadryl out so far. Has helped with those symptoms. We did not have equilibrium issues until a month after we changed to Gammunex C and started monthly ivig from every other month. With the change to Gammunex C she is getting more fluids - 500 ml saline pre and post, 1000 ml D5W with IVIG. Wondering if increased fluids could be a part of it. Although, last infusion we cut post saline down to 250ml to see if it would help. No change. Any ideas? Ever experienced this? THANKS!
  9. Stand Firm! You are a great Mom and one thing I know about us PANS/Lyme Moms, we do not quit! Keep on, day by day, working through this. IT WILL GET BETTER! There isn't a single person on this board that has been stuck forever - some days up, some months down, but we are not stuck forever. She will get better! You will know when to do what. I have two kids and they both have done intensive CBT/ERP with Storch and group. One was very successful as her thoughts traveled with her. The other, was not as his thoughts didn't travel and they couldn't replicate them there. Both are PANS and Lyme. We do monthly IVIG. Some months it quiets us way down and other months it will stir it up. Tindamax was a big culprit in stirring things up but we stuck with it for 2.5 years in one kid and a year in the other. Stopping it doesn't necessarily return you to where you were. In my daughter, we had 8 GREAT months, stopped lyme meds to give gut a break, kept only Amox XR, and she has crashed back to pre-treatment stage. But, we got her back to 50% by increasing Amox XR. Before, to gain 50% would have taken months instead of days. Yes, the crashes are hard, but I know we will one day rebound. I have to hang onto that. So, it's a long slow healing - it is not quick! You are running marathons! She is so fortunate to have you as a Mom! Not to mention the blessing they are to us - don't they make us stronger and better than we ever thought we could be? dcmom, I'm SO glad to hear your daughter is healed! I have spoken with Dr. Storch, and he is a very nice man. He did say our situation is not ideal for Rothman, because she seems quite normal outside of our town. Other people do not notice much in the way of symptoms when they see her out and about, and indeed, she doesn't suffer them (very little anyway) when she is away - yes we have thought of moving! The tough thing is there is not way to bring our town and all of its contamination to Florida with us... We have decided to finish the second IVIG and then head there in November. In the meantime, Dr. Storch has given us a recommendation for a CBT practice 1 1/2 hours from our home, (we are in a remote area), and we hope to begin and finish the psychological process there. This is such a debilitating disease, for entire families. How long has your daughter been well now?
  10. Believe checking VEGF is part tof Shoemaker neurotoxin testing.
  11. Thanks ladies......I had read the infection induce trigger and actually found some posts on the pandas forum about crossover between the two. I am meeting with her today and my gut has been to tell her to rule out "infection induced pans" and lyme. Regardless of what it really is, I think she should have him try the treatments for each. So, I will send her to LLMD and PANS doc who also happens to be functional medicine as well. So sad to hear how it has affected their lives. Grateful for the input!!
  12. Have a dear friend with husband diagnosed with KLS about 7 years ago. After speaking with her today, I am wondering if it would be advisable for her to seek of LLMD and invastigate if this would be Lyme related or biotoxin pathway induced (thinking alonf the lines of Shoemaker)? Anyone have any experience with KLS and/or know if it is frequently misdiagnosed and is really lyme? Just curious......trying to help her as it is devastating illness. Very rare and very few "experts" to help navigate it.
  13. My son would tell me that it's not that he liked watching TV, it just kept his mind occupied so his thoughts were not so bad. With my daughter, she tries to always stay active and keep her hands busy to keep her mind quiet. It might just be coping mechanism.
  14. My son had such a bad flare once we started trating cyst form lyme that we were truly desperate. We went for IVIG and it was a miracle for settling the flare. We didn't do any steroids first treatment and had severe headache and nauseau for few days. He felt rotten. We then used the steroids, meldrol push, and benadryl and motrin. Our LLMD said this short term use of steroids was fine - just don't want long term, month long, steroid tapers. Know this is greatly debated but steroids made the IVIG tolerable. Having said that, we missed IVIG for 2 months and when we went back for it, still had bad reaction even with steroids and benadryl, motrin. Think it just shocks the system to some degree. But, worth it! We now have it monthly and it has been a real blessing to my kids. quote name='Kimflow' timestamp='1340537785' post='141771'] Hello, I posted this also on PANDAS board....need help to make decision by tomorrow. Our history in a nutshell: autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week. It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started. Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse. However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested). My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG. It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal. My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated. I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results. Bascially all the 4 months of various antibiotics have been treating lyme all along anyhow, right? Thanks.
  15. It's been suggested to us to run Shoemaker testing on son. Anyone run the C3, C4, and HLRA testing he proposes? Done the treatment? Just curious before we go down that trail.
×
×
  • Create New...