Jump to content
ACN Latitudes Forums

beeskneesmommy

Members
  • Content Count

    794
  • Joined

  • Last visited

  • Days Won

    5

Reputation Activity

  1. Like
    beeskneesmommy got a reaction from MaureenL in Request for success stories please!   
    My son was very, very ill. It was a long journey from his 1st dx at age 2.5 to now at age 7.5. The very worst was at his 4th b'day right after a T&A. We lost him. He could barely manage to communicate at one point and rocked and rocked. However, we pushed on, 2 steps forward, 1 step back. Ages 4-5.5 were very hard, although I saw a more solid kiddo as time progressed. Big gun abx, 2 IVigs and GF diet later, he is doing great! He is solid, happy, very social in school and doing very well academically. He is a typical 7 year old kid. We occasionally see flares that are mild and infrequent. He recently had what I believe to have been Strep and the "fallout" was quite mild and short lived. He also started allergy shots and strangely, I think that they are immodulating his immune system. I expected them to cause flare but it seems the opposite. Anyway, it took blood, sweat and tears and I bet I have shaved of several years of my life, but he is on track an has been for quite a while now. I believe that recovery is a matter of several factors, not just one. I also believe that recovery (yes, i said the "R" word again) is entirely possible. warm thoughts to you and yours. Hang in there and DON'T GIVE UP!
    -Kath
  2. Like
    beeskneesmommy got a reaction from Draga in can fever/virus bring tics back so soon after improvement with steroi   
    Yes. they do not have to be infected to have a PANDAS/PANS response. They just have to be exposed if they are very sensitive. My son hardly ever gets sick and is on Augmentin and Azith, daily. He does not react as much now that he has had 1 IVig. However, it used to be that I could tell when another kid was about to get sick if DS reacted after playing with him/her. Sure enough, the parent would tell me the next day that the kiddo was sick. Not much you can do except vitamins, eat right and beef up that immune system. Has your kiddo had IVig?
  3. Like
    beeskneesmommy got a reaction from philamom in Been a long time...   
    Hi Guys:
     
    It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades.
     
    I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy.
     
    I am here to tell you that your kids can get better. Don't give up!
     
    Don't lose hope, my friends! Warm thoughts and healing prayers to you all.
     
    Kath
  4. Like
    beeskneesmommy got a reaction from MomWithOCDSon in Been a long time...   
    Hi Guys:
     
    It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades.
     
    I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy.
     
    I am here to tell you that your kids can get better. Don't give up!
     
    Don't lose hope, my friends! Warm thoughts and healing prayers to you all.
     
    Kath
  5. Like
    beeskneesmommy got a reaction from bigmighty in Interesting hotel north of Dr. B's office   
    Well, that takes care of both Dr.'s L and B!
  6. Like
    beeskneesmommy reacted to Mayzoo in 23 and me - do ppl use their names?   
    I used a fake name for my child, I had a relative use their credit card to pay for it, and had it shipped to a friends address.
     
    I have no idea what they will be doing with this information in the future. I know it is fairly "safe" now, but I have no idea what the laws will be during my child's entire life, so I wanted to be extra safe if possible.
  7. Like
    beeskneesmommy got a reaction from Mommy2MCL in Am I foolish to think that my daughter is going to get better?   
    My son was dx at age 2.5. In retrospect I know that the onset was around 18 months and that he was getting Strep as an infant! We battled this beast hard. I cannot tell you how many nights I crept into his room in tears and whispered for him to "come back". Those days were very, very dark. I went thru some pretty devastating depression, but kept going because I had to. I would not be satisfied with less than getting him back. Fully. There were times when I felt the way that you are now...many times. I remember hope waning away and crying myself to sleep for the "loss" of my sweet boy, so many nights. Here we are, at age 7. It's been hard work, lots of research and the help of some wonderful specialists and PANDAS friends. However, he is well. He has been well consistently for almost a year. There have been some minor, and I mean minor concerns since last August, but nothing that has affected his daily life. This is the first allergy season that he has managed without significant flare. He is bright, articulate, getting great scores at school, happy, and fully engaged in sports, friendships and life. he is NORMAL!
     
    The biggest pieces of advice that I can give: Get with a specialist, or 2 ASAP. Test for infection so you can target with the appropriate abx. Do not look upon this as 1 cause, 1 cure. rather, consider several angles and pieces of the puzzle. Ask for help, anywhere you can get it. We have all been there and we are willing to help in the areas that we know how!
     
    Hang in there and know that you are NOT alone!
     
    May love and warmth and comfort come to you tonight.
     
    Kath
  8. Like
    beeskneesmommy got a reaction from SSS in Am I foolish to think that my daughter is going to get better?   
    My son was dx at age 2.5. In retrospect I know that the onset was around 18 months and that he was getting Strep as an infant! We battled this beast hard. I cannot tell you how many nights I crept into his room in tears and whispered for him to "come back". Those days were very, very dark. I went thru some pretty devastating depression, but kept going because I had to. I would not be satisfied with less than getting him back. Fully. There were times when I felt the way that you are now...many times. I remember hope waning away and crying myself to sleep for the "loss" of my sweet boy, so many nights. Here we are, at age 7. It's been hard work, lots of research and the help of some wonderful specialists and PANDAS friends. However, he is well. He has been well consistently for almost a year. There have been some minor, and I mean minor concerns since last August, but nothing that has affected his daily life. This is the first allergy season that he has managed without significant flare. He is bright, articulate, getting great scores at school, happy, and fully engaged in sports, friendships and life. he is NORMAL!
     
    The biggest pieces of advice that I can give: Get with a specialist, or 2 ASAP. Test for infection so you can target with the appropriate abx. Do not look upon this as 1 cause, 1 cure. rather, consider several angles and pieces of the puzzle. Ask for help, anywhere you can get it. We have all been there and we are willing to help in the areas that we know how!
     
    Hang in there and know that you are NOT alone!
     
    May love and warmth and comfort come to you tonight.
     
    Kath
  9. Like
    beeskneesmommy got a reaction from nicklemama in Chicken Pox Vaccine   
    I do not think that there is enough data regarding one vs the other with our PANDAS/PANS kids. However, I would opt to skip the vax. I would rather my son actually catch the chick pox and gets it over with. There is not enough data regarding the longevity of the vax efficacy. If an adult male catches it, it is serious and can render him sterile. In healthy kids, it is an uncomfortable and unpleasant illness most of the time and once it is done, it is done. I was born in '64 and Chick pox was a right of passage, in a way. I am not advocating that you send your kiddo out to catch it, and the likelihood is less due to so many kids being vaxed for it now, but I feel that even offering this vax to the general population may be a bad idea in the long run.
  10. Like
    beeskneesmommy got a reaction from cobygurl in Chicken Pox Vaccine   
    I do not think that there is enough data regarding one vs the other with our PANDAS/PANS kids. However, I would opt to skip the vax. I would rather my son actually catch the chick pox and gets it over with. There is not enough data regarding the longevity of the vax efficacy. If an adult male catches it, it is serious and can render him sterile. In healthy kids, it is an uncomfortable and unpleasant illness most of the time and once it is done, it is done. I was born in '64 and Chick pox was a right of passage, in a way. I am not advocating that you send your kiddo out to catch it, and the likelihood is less due to so many kids being vaxed for it now, but I feel that even offering this vax to the general population may be a bad idea in the long run.
  11. Like
    beeskneesmommy reacted to colleenrn in Chicken Pox Vaccine   
    I have four children. My oldest received the chickenpox vaccine at 18 months and within a week had a high fever and head to toe rash. Not sure if it was related to the vaccine, but I have always thought so. When she turned 10 she had a severe case of shingles. It was awful.
    My three other children did not receive the chickenpox vaccine and all three of them came down with chickenpox at the same time. They were two, five, and seven years old at the time. I did not notice any increase in their PANS symptoms while they had chickenpox. If I had it to do over again, I would not get the vaccine. I feel that we were lucky that all three of them got chickenpox at a younger age.
    I also feel that my husband and I and my daughter who was 12 at the time got a booster just from being around them.
  12. Like
    beeskneesmommy got a reaction from SSS in Some Hope and Encouragement   
    It has been a many year journey for us, but DS7, who was first dx at age 2.5, is consistently doing great as well. We do not foresee the need for any further IVig's in the future at this point and Dr. B agrees that he is likely on his way. There have been multiple treatment interventions over the years and it is my belief that coming from multiple angle is an excellent approach. Happy that yours is so much better!
  13. Like
    beeskneesmommy reacted to ibcdbwc in Request for success stories please!   
    Also to the success storytellers - please don't leave the forum! For those of us still in the woods, we desperately need your wisdom!
  14. Like
    beeskneesmommy reacted to LNN in Request for success stories please!   
    Yay Kath!! So happy to hear!
     
    We too seem to be out of the woods. It took a long, long time and a lot of money. It was more than strep. It was more than lyme. It was a half dozen things that all intertwined. But both kids came out on the other side and seem to be holding on to the good place they've been in for quite some time. I actually seem to have achieved a long time goal and weaned myself from this forum - a place that was once more essential to me than air. I know it feels like it may never happen, but if you keep digging, keep believing in your child and in yourself, recovery does happen. Hang in there!
  15. Like
    beeskneesmommy got a reaction from Missmom in Request for success stories please!   
    My son was very, very ill. It was a long journey from his 1st dx at age 2.5 to now at age 7.5. The very worst was at his 4th b'day right after a T&A. We lost him. He could barely manage to communicate at one point and rocked and rocked. However, we pushed on, 2 steps forward, 1 step back. Ages 4-5.5 were very hard, although I saw a more solid kiddo as time progressed. Big gun abx, 2 IVigs and GF diet later, he is doing great! He is solid, happy, very social in school and doing very well academically. He is a typical 7 year old kid. We occasionally see flares that are mild and infrequent. He recently had what I believe to have been Strep and the "fallout" was quite mild and short lived. He also started allergy shots and strangely, I think that they are immodulating his immune system. I expected them to cause flare but it seems the opposite. Anyway, it took blood, sweat and tears and I bet I have shaved of several years of my life, but he is on track an has been for quite a while now. I believe that recovery is a matter of several factors, not just one. I also believe that recovery (yes, i said the "R" word again) is entirely possible. warm thoughts to you and yours. Hang in there and DON'T GIVE UP!
    -Kath
  16. Like
    beeskneesmommy got a reaction from amyjoy in Request for success stories please!   
    My son was very, very ill. It was a long journey from his 1st dx at age 2.5 to now at age 7.5. The very worst was at his 4th b'day right after a T&A. We lost him. He could barely manage to communicate at one point and rocked and rocked. However, we pushed on, 2 steps forward, 1 step back. Ages 4-5.5 were very hard, although I saw a more solid kiddo as time progressed. Big gun abx, 2 IVigs and GF diet later, he is doing great! He is solid, happy, very social in school and doing very well academically. He is a typical 7 year old kid. We occasionally see flares that are mild and infrequent. He recently had what I believe to have been Strep and the "fallout" was quite mild and short lived. He also started allergy shots and strangely, I think that they are immodulating his immune system. I expected them to cause flare but it seems the opposite. Anyway, it took blood, sweat and tears and I bet I have shaved of several years of my life, but he is on track an has been for quite a while now. I believe that recovery is a matter of several factors, not just one. I also believe that recovery (yes, i said the "R" word again) is entirely possible. warm thoughts to you and yours. Hang in there and DON'T GIVE UP!
    -Kath
  17. Like
    beeskneesmommy got a reaction from fapsuppomyday in Terbutaline for contractions anyone?   
    Question: has anyone had to take Terbutaline , either injection or pills during pregnancy to repress early contractions during their PANDAS/PANS child's term? If so, is the child dual diagnosed with PANDAS/PANS and ASD or only PANDAS/PANS?
  18. Like
    beeskneesmommy got a reaction from ashley in GFCFSF vegetarian suggestions?   
    We started GF last August. I saw a big change in my son within 6 days! We are true believers, where were had not been so much before. There is no doubt that he has significant G intolerance. We have since been to an allergist for scratch testing and discovered that he has a multitude of allergies to environmental things as well as food. We have done abx, 2 IVigs and GF. All have contributed significantly, but the GF is the cheapest intervention and available to all! Good luck and so happy to hear it is going well!!! -Kath
  19. Like
    beeskneesmommy got a reaction from T_Mom in Saw Dr. B on Friday & hopeful...   
    We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday
     
    Keep having hope. Keep the faith. Warm healing wishes to your son and your family.
     
    Kath
  20. Like
    beeskneesmommy got a reaction from philamom in Saw Dr. B on Friday & hopeful...   
    We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday
     
    Keep having hope. Keep the faith. Warm healing wishes to your son and your family.
     
    Kath
  21. Like
    beeskneesmommy got a reaction from Teri in Saw Dr. B on Friday & hopeful...   
    We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday
     
    Keep having hope. Keep the faith. Warm healing wishes to your son and your family.
     
    Kath
  22. Like
    beeskneesmommy got a reaction from SSS in Saw Dr. B on Friday & hopeful...   
    We have been dealing with PANDAS for 5 years. There were some horrifyingly, gut wrenching times during which I feared that I would lose my son to this illness...and perhaps lose myself along with him. In July 2011, we sought the help of Dr. B. This was the start of our journey home. We see other specialists as well. I believe that a team approach is best as each doc brings something different to the table. Dr. B's understanding of immunology and his choice of antibiotic treatment has been right on. DS had IVig Sept. 2012 with Dr. B's recommendation, although with another specialist. My only regret is that we did not do it a year earlier. DS had 1 more IVig last May, 2013. IVig, antibiotics, and gluten free diet have brought our son fully back to us. He is 7 now, happy, healthy, socially involved, playing sports and recently had a stellar report card at school. He still has mild bumps..very occasional flares that others don't notice. These are infrequent and very manageable. He is, aside from being a little hyper and silly at times, well, normal now. I will remain hypervigilant, perhaps until I die! But i am here to tell you that our kids can get better. I credit Dr. B for his role in helping to bring our beautiful boy to us. In fact, I have my monthly teleconference with Dr. B this Friday
     
    Keep having hope. Keep the faith. Warm healing wishes to your son and your family.
     
    Kath
  23. Like
    beeskneesmommy got a reaction from T_Mom in IVIG made symptoms worse…will PEX help?   
    I do not have any advice regarding treatment, but I wanted to let you know that Dr. Josephine Elia at Dupont Nemours Children's in DE is one of the pioneers of PEX for PANS. Given that she is in a hospital setting, you may have luck with insurance. Perhaps you could ask Dr. L to communicate with her on your behalf. It is worth a shot. Good luck!
  24. Like
    beeskneesmommy reacted to rowingmom in Bumps on arms?   
    I have heard that it's cause by omega 3 deficiency.
     
    http://www.omegavia.com/deficiency-symptoms/
     
    1. Skin related signs
    Dry skin and hair and soft or brittle nails Rough patches of skin Small bumps (like chicken skin) on the back
    of upper arms and legs Atopic allergies like eczema Dandruff Dry eyes
  25. Like
    beeskneesmommy got a reaction from Gweny in DS with severe motor tics   
    Start with Augmentin, which is an Amox and Clavulanate combo. Sometimes it takes the whole 10 day run to see a decrease in symptoms. 30 days would be better. Blood draw for both Strep and Mycoplasma as well as Lyme to start. More sensitive tests should come later and for goodness sake, get an appt. set today with a specialist. They have very long wait lists. It is tempting, when the issue resolves, to move away from it and cancel the plan to get hooked up with a specialist. Don't do it! Having the people you need in your back pocket for the future is a beautiful thing if you find yourself in an emergent situation down the road. Where are you located? Most of us travel for docs but here is a list of physicians who treat:
     
    http://pandasnetwork.org/resources/providers/provider-list/
     
    This site also has an international list and other resources and info. It is one that I recommend often.
×
×
  • Create New...