Jump to content
ACN Latitudes Forums

seekingrelief

Members
  • Posts

    20
  • Joined

  • Last visited

seekingrelief's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. I am sorry you are going through all of this. I understand how frustrating this whole process is. We had to wait over 6 months to get an appointment with Dr B but I am glad we did as it was well worth the wait. Pay out of pocket and make the appointment now. You will be glad you did.
  2. I have wondered about this myself as well. DS10 has had 3 titers drawn since November. All show normal ASO but elevated DNASE (599+). He has been on short courses of antibiotics twice and is now on a month long course of Augmentin. He is definately in a PANDAS flare....And I am wondering how we can get those darn DNASE antibodies down!!! Whenever his DNASE is elevated, his PANDAS behaviors return. Does anyone have any thoughts on what will get the DNASE levels to go down? Sorry if I hijacked your thread....hopefully we can keep this conversation going and both get some answers
  3. Hello, We have our first appointment with Dr. B coming up and was wondering what I should expect from this appointment? Any insight would be great. Thanks in advance!
  4. Hello, My PANDAS son was just referred to Dr Dsa in Pawtucket by his Pedi. Dr Dsa is now in charge of Dr Keislings old department. Has anyone been to the Neurodevelopmental clinic in Pawtucket, RI? I am keeping my fingers crossed that he will be able to help us along the journey!
  5. I am so glad to hear people talking about this. My son also gets "the rash" before a PANDAS episode. IT took us a while to connect the dots (no pun intended lol) and realize this was PANDAS related. He has eczema, but this rash is different...pimply like a heat rash over large amounts of his body. It ALWAYS preceeds a PANDAS episode for us. I am just a little hesitant to try a bleach bath because his skin is so dry as it is. Is there anyone else who has used this as a treatment? What were your results?
  6. Hello, My son was diagnosed with PANDAS by his pedi in the Spring and we are still trying to work things through (ie come up with a treatment protocol etc). For the last few weeks my sons behavior has been getting worse...poor impulse control, constant state of brain fog etc. Tonight when I was applying his eczema cream I noticed a strange rash covering a lot of his body. This rash is not red, it is the same color as his skin and is tiny raised bumps. Almost like goose bumps but in a more inconsistent pattern. Could this be PANDAS related? Thanks for your input!!
  7. Wow....sounds like it is something worth giving a try. My PANDAS son also has allergies/asthma/eczema. How did it taste?
  8. Hello, It's been a while since I've posted on here. But......it's back!!! God, how I hate PANDAS. Anyhow, my DS9 has been doing well for the last 4 months and then over the last month has been having a definite PANDAS flare up. Pediatrician put him on ABX for 3 weeks and it seemed to clear up, but then his "behaviors" started coming back. To make matters worse my non PANDAS DD6 has strep now and is being treated with ABX. My PANDAS son is going to the pedi today since he was sent home from school with a sore throat and fever. Our pedi is working on getting us a long term plan for how to manage the PANDAS and has put some calls in to the Neuropsych dept at Memorial Hospital in Pawtucket. But we have been waiting weeks to hear back from them. Is there anyone else out here living in Rhode Island that has a reccommendation as to who we should go see? There has to be someone relatively nearby. I am starting to get really frustrated, annoyed, exhausted etc. HELP!!!
  9. Hello, It's been a while since I've posted on here. But......it's back!!! God, how I hate PANDAS. Anyhow, my DS9 has been doing well for the last 4 months and then over the last month has been having a definite PANDAS flare up. Pediatrician put him on ABX for 3 weeks and it seemed to clear up, but then his "behaviors" started coming back. To make matters worse my non PANDAS DD6 has strep now and is being treated with ABX. My PANDAS son is going to the pedi today since he was sent home from school with a sore throat and fever. Our pedi is working on getting us a long term plan for how to manage the PANDAS and has put some calls in to the Neuropsych dept at Memorial Hospital in Pawtucket. But we have been waiting weeks to hear back from them. Is there anyone else out here living in Rhode Island that has a reccommendation as to who we should go see? There has to be someone relatively nearby. I am starting to get really frustrated, annoyed, exhausted etc. HELP!!!
  10. Hello, It's been a while since I've posted on here. But......it's back!!! God, how I hate PANDAS. Anyhow, my DS9 has been doing well for the last 4 months and then over the last month has been having a definite PANDAS flare up. Pediatrician put him on ABX for 3 weeks and it seemed to clear up, but then his "behaviors" started coming back. To make matters worse my non PANDAS DD6 has strep now and is being treated with ABX. My PANDAS son is going to the pedi today since he was sent home from school with a sore throat and fever. Our pedi is working on getting us a long term plan for how to manage the PANDAS and has put some calls in to the Neuropsych dept at Memorial Hospital in Pawtucket. But we have been waiting weeks to hear back from them. Is there anyone else out here living in Rhode Island that has a reccommendation as to who we should go see? There has to be someone relatively nearby. I am starting to get really frustrated, annoyed, exhausted etc. HELP!!!
  11. Ever since discovering PANDAS and the role of DS's immune system in his behavioral symptomology, we've been on the lookout for various connections. DS has had some eczema since he was an infant, but when his OCD went off the charts back in 2009 (when we discovered the role of PANDAS in his life), his eczema became similarly uncontrollable for the first time, too. It had been virtually non-existant between the ages of 7 and 12, but then at 12, it suddenly bloomed in full force again. We tried every OTC and prescription cream on the market, but patches at his wrists and inside elbows, especially, became very inflamed. When he was at his worst -- hugely dialated pupils, very emotionally fragile, almost any trigger could set him into a near-panic attack -- the eczema bloomed for the first time on new places, like on his fingers, shoulders, his chest, etc. As he began to heal with abx for the PANDAS, his eczema began to ease off, too, and heal some as well. But after a couple of "flare episodes," we came to realize that the flaring of the eczema was a pretty reliable forewarning of a behavioral flare to come . . . increased general anxiety, higher fight/flight tendencies, lower emotional tolerances, etc. Those patterns held true for the next several months, so when we would see the red patches creep in again, we knew his anxiety was soon to increase, as well. And it did, over and over again. Then someone here on the forum suggested Pepcid for the histamine response that can drive conditions like eczema. Not only did it work like a charm on the skin condition, it also reduced the high-anxiety, fight/flight stuff that the eczema flairs portended. We knew that they were connected, but what we didn't know until the Pepcid was that calming one could also calm the other! Why? We think it's about the histamine. Given DS's overall allergic nature (pollen, mold, dust, cat dander, etc.), we know that he's high in histamine in general; the eczema seemed to be more of that histamenic (?) response. If you poke around, you'll find they're currently connecting many mental "conditions" to high brain histamine levels, also: bi-polar, schizophrenia, etc. So, maybe DS's increased anxiety was driven by increases in histamine in his brain and elsewhere, and the Pepcid helped correct that balance? So glad to hear someone else talk about the connection between eczema flares and PANDAS! When my son is on abx his eczema clears within a few days and then comes back a week or so after stopping the abx. My son also has a ton of allergies (pollen mold, dustmites, grass etc) as well as asthma and eczema. When his skin is good, his PANDAS symptoms are at a minimum. As soon as his skin errupts, his behavior, moodiness, lack of focus etc come on full force. I started using the quercitin last week and it seems to help his allergies though not his eczema. I will try adding the pecid this week and see if that does anything. I feel so bad for him. His arms and legs are covered and even a bit on his face now too.
  12. Wow. Only $5 or $10 a month in salt doesn't even compare to all the money I spend in chemicals. Maybe I will have to look more into this and see how long it would take for the conversion to salt to pay for itself. Thanks for pointing that out to me!
  13. Hello Everyone, I have a question for all those who have swimming pools...what do you use to sanitize it and have you noticed any PANDAS reactions in your kids with a certain kind of sanitizer? For years we used chlorine in our pool but switched over to Baquacil 3 years ago because the chlorine made my sons skin so dry and his eczema became almost uncontrollable. We found that the baquacil didn't really help his skin at all and was way more expensive and also difficult to keep the pool sparkling clear. Now that we will be getting ready to open our pool again I am wondering what we should use this year. Especially with our new PANDAS diagnosis. I would love to be able to switch over to salt water or uv light sanitizing but we simply don't have the money for that. Does anyone have any insight or advice?
  14. I looked at it briefly but to be honest I am still a bit uncomfortable about the idea of my son receiving blood products. Not that I would rule it out, i just don't know if I am ready for that just yet. This whole process is just so difficult and frustrating. I am still trying to find my bearings.
  15. Our Pedi is pretty conservative in general with treatments of anything but was very thorough in helping to diagnose what was going on with my son. He put him on a 2 week course of antibiotics that cleared up his tics, motor control, mood swings, impulsivity, and eczema immediately. All has been well for 2 months and then last week he started complaining about his stomach hurting, mild sore throat had a moderate fever for a few days. Now his mood swings, impulsivity, hyperactivity all came back. I am planning to call his pedi on Monday. @fightingmom I will send you a PM with the info
×
×
  • Create New...