Dedee Posted February 15, 2011 Author Report Share Posted February 15, 2011 Just an update. We went to our pediatrician yesterday and she believes it is a sort of panic attack. She said in children predisposed to anxiety (such as PANDAS kids), when something in the body starts to feel out of sorts, even something simple like an increased heart rate from playing, they don't process that as a normal reaction and it can cause an increase in catacholamine release, which only makes things worse, and then they feel tight and cant breathe and becomes a vicious cycle. She said it's important to try to do something to try to break the cycle and promote relaxation. She did say if we wanted to persue it and move to pediatric cardiology she would do that but was worried about more stress on my daughter since she gets so freaked out by any medical attention at all. It's a huge ordeal just to take her blood pressure. So I think we will watch things and hopefully when we get some treatment for this things will get under control. Still waiting for the rest of our lab work. Think I will call the other doctor's office today (they were closed yesterday), and see if anything is back yet. Thanks for everyone's help. I get so much reassurance here. God bless you all. Dedee Link to comment Share on other sites More sharing options...
lynn Posted February 15, 2011 Report Share Posted February 15, 2011 What is this somatic therapist? Where could I find one? This sounds promising. Link to comment Share on other sites More sharing options...
sf_mom Posted February 15, 2011 Report Share Posted February 15, 2011 WD: Not to get off topic but definitely discuss these symptoms with your LLMD. As our son's PANDAS symptoms faded with treatment (TICS and OCD) the more typical 'physical' symptoms of Lyme/co-infections took predominance. They have the ability to test for two strains of Babesia currently and there are 17 known strains. There are other easy to pinpoint symptoms that your LLMD should be familiar with to make clinical diagnoses if necessary. The gasping of air is very specific to babesia and physically fatigue is another indication because its working on the red blood cells. He 'might' have a decrease in RBC or be anemic if present. -Wendy Link to comment Share on other sites More sharing options...
Worried_Dad Posted February 16, 2011 Report Share Posted February 16, 2011 WD: Not to get off topic but definitely discuss these symptoms with your LLMD. As our son's PANDAS symptoms faded with treatment (TICS and OCD) the more typical 'physical' symptoms of Lyme/co-infections took predominance. They have the ability to test for two strains of Babesia currently and there are 17 known strains. There are other easy to pinpoint symptoms that your LLMD should be familiar with to make clinical diagnoses if necessary. The gasping of air is very specific to babesia and physically fatigue is another indication because its working on the red blood cells. He 'might' have a decrease in RBC or be anemic if present. -Wendy Absolutely, we discussed this with our LLMD. But - since this just recurred after discovering that our youngest has a rapidly rising ASO titer again - he wants to wait and see if the clindamycin for our youngest has any effect on our PANDAS ds's symptoms. Will keep everybody posted! (FYI - our ds tested negative for babesia on the IGeneX co-infection panel.) Link to comment Share on other sites More sharing options...
sf_mom Posted February 16, 2011 Report Share Posted February 16, 2011 WD: Interesting that this was in response to younger son. I am also negative for Babesia via Igenex.... Positive for Lyme, mycoplasma and 3 viruses and they are more worried about Babesia then any of my positive results. Most recently they've added Enula from Nutrametrix, building up to 30 drops x 2 day to see if symptoms flair. All kinds of symptoms are remerging and its only been 11 days and I'm at 26 drops x 2 a day. We'll be starting the same protocol for my daughter in one week and working up to 15 drops x 2 a day and retesting for Babesia. Her prior results via Igenex were also negative. Anyway, the Enula is a much stronger herb for Babesia than I even imagined and it might be worth a try to see if the 'air hunger' or any other symptom reemerges over an isolated period (with no other change in protocol). Looking forward to hearing further progress. -Wendy Link to comment Share on other sites More sharing options...
Worried_Dad Posted February 16, 2011 Report Share Posted February 16, 2011 Ah... yeah, I should have added that our LLMD did recommend some new supplements (cat's claw, allicidin (garlic extract) ) for our PANDAS ds. These are supposed to have general anti-microbial / immune support benefits, I believe. Maybe those are stirring something up? WD: Interesting that this was in response to younger son. I am also negative for Babesia via Igenex.... Positive for Lyme, mycoplasma and 3 viruses and they are more worried about Babesia then any of my positive results. Most recently they've added Enula from Nutrametrix, building up to 30 drops x 2 day to see if symptoms flair. All kinds of symptoms are remerging and its only been 11 days and I'm at 26 drops x 2 a day. We'll be starting the same protocol for my daughter in one week and working up to 15 drops x 2 a day and retesting for Babesia. Her prior results via Igenex were also negative. Anyway, the Enula is a much stronger herb for Babesia than I even imagined and it might be worth a try to see if the 'air hunger' or any other symptom reemerges over an isolated period (with no other change in protocol). Looking forward to hearing further progress. -Wendy Link to comment Share on other sites More sharing options...
amyjoy Posted February 16, 2011 Report Share Posted February 16, 2011 What is this somatic therapist? Where could I find one? This sounds promising. I'm sure there is someone near you who does this kind of work. I can give you the website of the person we see out here in northern ca, maybe there are some links or you can email him for a referral? i know that the person we see does train other providers to do this. anyway here is his website http://www.cimba-usa.com/ There is no doubt that DS's symptoms had an anxiety component, whether that's what started them or simply made them worse i'm not sure. but this kind of therapy has not only stopped these particular symptoms but is giving him some kind of tools to deal with his body anxiety and worries. we are going to see the therapist today and DS is really looking forward to it. Link to comment Share on other sites More sharing options...
sf_mom Posted February 16, 2011 Report Share Posted February 16, 2011 I would say absolutely a response. Having done both A-Bart (a mix of herbs for bartonella) and Enula (Babesia)..... I see a similar increase in symptoms like I would with an antibiotic rotation. They are much more powerful than anything I ever imagined. Our PANDAs/Lyme son reacted 'herx' to Olive Leaf Extract. We are using the OLE for anti-viral, anti-microbial / immune support benefits too. -Wendy Link to comment Share on other sites More sharing options...
matis_mom Posted February 17, 2011 Report Share Posted February 17, 2011 Just an update. We went to our pediatrician yesterday and she believes it is a sort of panic attack. She said in children predisposed to anxiety (such as PANDAS kids), when something in the body starts to feel out of sorts, even something simple like an increased heart rate from playing, they don't process that as a normal reaction and it can cause an increase in catacholamine release, which only makes things worse, and then they feel tight and cant breathe and becomes a vicious cycle. She said it's important to try to do something to try to break the cycle and promote relaxation. She did say if we wanted to persue it and move to pediatric cardiology she would do that but was worried about more stress on my daughter since she gets so freaked out by any medical attention at all. It's a huge ordeal just to take her blood pressure. So I think we will watch things and hopefully when we get some treatment for this things will get under control. Still waiting for the rest of our lab work. Think I will call the other doctor's office today (they were closed yesterday), and see if anything is back yet. Thanks for everyone's help. I get so much reassurance here. God bless you all. Dedee Glad to hear the pediatrician sounds pretty reasonable "breathing counts" work wonders for my son (breath in, hold it, count 1, breath out slowly, all the way out, almost till you choke, breath in, etc, to 10) It seems simplistic but it really helps him, and whenever we get into a situation (not very often these days, praise God), we can always just say, "breath in..." Link to comment Share on other sites More sharing options...
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