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Sham7rock

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  1. My 13-year-old son is very close to having his first IVIG infusions. I'm very nervous about doing IVIG as I have had it for my autoimmune condition and I had a bad reaction. I am very IgA deficient and even though I got Gammard SD washed of IgA there were still trace amounts and I had a serious reaction. Needless to say, my personal IVIG reaction is making me very nervous for my son. His IgA levels are only slightly low so hopefully the IgA aspect of reactions is a non-issue for him. I'm looking for your feedback on your experience with IVIG. How did your child do during the infusions? After the infusions? What side effects? Did your infusion people pre-medicate with hydrocortisone, analgesics or antihistamines to try to preempt side effects? Were you at home, outpatient or in- patient?How many days in a row did you go and how many hours each day? (Our Dr. Wants us to do 4 days in a row and I'm not sure how many hours each day yet.) Are there any questions you wish you would have asked before you proceeded? Are there other treatments you would have tried before doing IVIG? How many infusions did you have to do before results? How did it go getting your insurance to approve and pay for IVIG? We are Medicaid. When you give feedback it would be great if you could say the age of your child and what city and state you are from. You can read below if you would like more information about our experience these last 4 months with PANDAS . . . . I posted a while ago (Feb.) on this forum and then got so overwhelmed with all that was happening I had to take a break from this forum. Things have been crazy with trying to figure out how to get my son the treatment he needs and keep him occupied now that he has been out of school for 4+ months. (All he wants to do is watch TV and play XBox because he feels so rotten. He used to be a huge reader and now says he can't concentrate and doesnt have the energy to read.) I'm also a single mom with autoimmune issues of my own and we have to move to a new home in 2 months. PANDAS sucks beyond belief and it blows my mind there are not more providers who are willing to step up and help - especially here in Seattle WA. I so appreciate the nice responses I got to my questions when I posted back in Feb. I also got a little overwhelmed reading the forum and had to take a break and just focus on what was in front of me. I never did end up seeing Dr. Vlcek (a Seattle neurologist with a bad rep) - I read enough reviews to know it was not a good idea. And as a few of you suggested (knowing it is so hard to get a PANDAS kid out of the house) I decided to cancel. Thank goodness for Dr. Gbedawo - she is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait. My son got overwhelmed at the first apt with Dr. G so I suggest you bring someone with and when you get to the technical parts of how to treat etc. you have your child leave the room. Bring 3 adults total if you can so 2 can listen and take notes with Dr. Gbedawo and the other can take your kid off to hang out elsewhere. Its just too much info for a kid and it really freaked my son out. He is doing somewhat better on prednisone, antibiotics and lots of supplements. Working toward getting IVIG soon. He's had severe anxiety, emotional lability, sleep issues, low frustration tolerance leading to rages, regression and temper tantrums, fear at night, not feeling well but can't explain what doesn't feel good, extreme skin picking till fingers bleed, food issues - wont eat (says food is bad/rotten) or super hungry now that he is on prednisone. Hard to say on handwriting deterioration at he was previously diagnosed with dysgraphia & dyslexia. (I now wonder and speculate that we may have been dealing with simmering PANDAS since 1st grade and "fell off the cliff" so to speak in 7th grade.) Worst part are the evening rages - which thankfully have stopped on 30-40 mg prednisone. He has not had any tics. OCD issues just seem to pop out briefly surrounding cell phone and picking. Cunningham showed high Anti-Dopamine 1:4000 and high Anti-Tubulin 1:2,000. CaM Kinase was 113 which is considered normal but still above mean. Streptozyme 1:400, ASO 1290, Anti-DNASE B Titer 815 (after 2 rounds antibiotics.)
  2. I'm so sorry I disappeared on the forum! Things have been crazy with trying to figure out how to get my son the treatment he needs, keep him occupied now that he has been out of school for 4+ months and we have to move in 2 months so trying to get ready for that. I'm also a single mom with autoimmune issues of my own. PANDAS sucks beyond belief and it blows my mind there are not more providers who are willing to step up and help. I really appreciate each of your responses to my questions. I also got a little overwhelmed reading the forum and had to take a break and just focus on what was in front of me. I never did end up seeing Dr. Vlcek - I read enough reviews to know it was not a good idea. And as a few of you suggested (knowing it is so hard to get a PANDAS kid out of the house) I decided to cancel. Thank goodness for Dr. Gbedawo - she is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait. My son got overwhelmed at the first apt with Dr. G so I suggest you bring someone with and when you get to the technical parts of how to treat etc. you have your child leave the room. Bring 3 adults total if you can so 2 can listen and take notes with Dr. Gbedawo and the other can take your kid off to hang out elsewhere. Its just too much info for a kid and it really freaked my son out. He is doing somewhat better on prednisone, antibiotics and lots of supplements. Working toward getting IVIG soon. He's had severe anxiety, emotional lability, sleep issues, low frustration tolerance leading to rages, regression and temper tantrums, fear at night, not feeling well but can't explain what doesn't feel good, extreme skin picking till fingers bleed, food issues - wont eat (says food is bad/rotten) or super hungry now that he is on prednisone. Hard to say on handwriting deterioration at he was previously diagnosed with dysgraphia & dyslexia. (I now wonder and speculate that we may have been dealing with simmering PANDAS since 1st grade and "fell off the cliff" so to speak in 7th grade.) Worst part are the evening rages - which thankfully have stopped on 30-40 mg prednisone. He has not had any tics. OCD issues just seem to pop out briefly surrounding cell phone and picking. Cunningham showed high Anti-Dopamine 1:4000 and high Anti-Tubulin 1:2,000. CaM Kinase was 113 which is considered normal but still above mean. Streptozyme 1:400, ASO 1290, Anti-DNASE B Titer 815 (after 2 rounds antibiotics.)
  3. Dr. Gbedawo is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait.
  4. Is there any sort of PANDAS support group in WA State? I've posted a few times looking for resources and have only heard from two people in my area - surprised there are not more . . . I may have to branch out to OR & CA! Desperately seeking resources and would love to connect with another family who has gone through this. My son is 12 - (13 tomorrow) and I would love for him to have a chance to talk and hang out with another kid who has been through this. I know he is super confused and scared about all this, but he continues to have a brave face and even says, "Don't worry Mom - its all going to be okay - I'm going to be okay!" Please reach out if you are in the Seattle area. I'm specifically looking for PANDAS friendly neurologists associated with Seattle Childen's Hospital.
  5. Hi MissionMamma - I'm still figuring out how this forum works and didnt realize you had replied. Yes I am referring to Seattle Children's Hospital. We have seen Dr. French in Psychiatry and Dr. Skoda-Smith in Immunology. Both were clear they are not PANDAS specialists. We were supposed to see Dr. Ming in neurology, but they called today and switched us to Dr.Vlcek. - no idea if he is PANDAS friendly or not. Good advice about just not mentioning PANDAS! Wow I'm blown away when there is clear literature and a PANDAS/PANS clinic at Stanford that there are not more resources at Seattle Children's. I did hear about Lauren Plawner and will explore that further ... was trying to find someone at children's because we dont have the best insurance so Children's works best for us. It appears my son may not have had a good response to his Prevnar 7 vaccination as an infant so the immunologist we saw is recommending we do a Pneumovax 23 shot to really test his immune systems ability to respond. I plan to wait till after I see Dr. Gbedawo to do this vaccination. All of what you said in your post makes so much sense from kissing frogs to falling off cliffs!! This has been a nightmare! Hoping Dr. Gbedawo will be able to help us. So far 2 months of missed school. I would love to talk with you more and will PM you my contact info. Thank you - Erin
  6. Thank you so much makeitfromscratchmom. Helpful to have options. Still would really like to track down a neurologist in Seattle who is PANDAS friendly. I'm blown away Seattle CHMC doesn't have more options of physicians who specialize in PANDAS!
  7. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the Seattle area? 2. PANDAS families or a support group in the Seattle area? 3. Insights into getting into the PANDAS/PANS clinic at Stanford or any other place with leading experts? 4. Any tips on schooling & dealing with Seattle Public Schools to get services for children who are medically fragile such as in-home tutoring since he is unable to attend school? 5. Does it seem possible my son may have had PANDAS since age 6 - first grade - and we didnt have the MAJOR outburst of symptoms unitl age 12 - 7th grade? Just curious if others had a similar situation as in each time the child got strep things got worse and worse over the years - but in between things were mostly okay? We will be seeing Dr. Hatha Gbedawo who is an ND and listed as a PANDAS specialist on PANDAS.org. We will also be seeing a neurologist Dr. Ming at CHMC. We already saw an immunologist and psychiatrist at CHMC, but both physicians made it clear they were NOT PANDAS experts. I reallly want to find an MD - neurologist or pediatrician in the Seattle area who is PANDAS knowledgeable so I will have the option to explore both western medicine treatments such as steroids & IVIG as well as looking at the eastern medicine side working with ND Dr. Gbedawo. So far I am not having much luck finding someone who can prescribe and treat with IVIG - (hoping Dr. Ming is a possibility.) The very first time my son showed major separation anxiety and started having difficulties in school was first grade. I thought the problems were solely due to ADHD & dysgraphia/dyslexia. I now realize this may have been PANDAS and/or PANDAS causing an exacerbation of co-morbid ADHD & dysgraphia. My son has had two rounds of antibiotics since December and has had some symptom relief, but he is still having extreme anxiety and is unable to attend school. He has now been out of school with the exception of a few days here and there since Nov. 28, 2016. It is agonizing watching him be in so much distress (mostly anxiety) and not feel like we are directly treating possible inflammation on his brain with continued antibiotics and/or anti-inflammatories. We have started regular vitamins and fish oil to try to help with the inflammation, but that is not cutting it and we need a PANDAS specialist to move on with treatment. Thankfully we are not seeing tics or obvious OCD - (although I fear there may be some hidden OCD issues.) We are seeing: restricted food intake; extreme anxiety; separation anxiety; emotional lability & depression; irritability, aggression and oppositional behaviors; regression; deterioration in school performance; increased sensory & motor skill issues; somatic issues including nighttime fears and inability to sleep in his own bed. He was picking at his thumbs until they bled, but thankfully that has stopped. Not sure where this fits in other than an "escape" from this nightmare, but he has become obsessed with his cell phone and will not be away from it for any length of time. Huge fits and rages if we try to limit it or take it away. Any thoughts you have would be greatly appreciated! Thank you in advance for reading our story and taking the time to share your thoughts.
  8. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he was a-symptomatic, but tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the Seattle area? 2. PANDAS families or a support group in the Seattle area? 3. Insights into getting into the PANDAS/PANS clinic at Stanford or any other place with leading experts? 4. Any tips on schooling & dealing with Seattle Public Schools to get services for children who are medically fragile such as in-home tutoring since he is unable to attend school? 5. Does it seem possible my son may have had PANDAS since age 6 - first grade - and we didnt have the MAJOR outburst of symptoms unitl age 12 - 7th grade? Just curious if others had a similar situation as in each time the child got strep things got worse and worse over the years - but in between things were mostly okay? We will be seeing Dr. Hatha Gbedawo who is an ND and listed as a PANDAS specialist on PANDAS.org. We will also be seeing a neurologist Dr. Ming at CHMC. We already saw am immunologist and psychiatrist at CHMC, but both physicians made it clear they were NOT PANDAS experts. I reallly want to find an MD - neurologist or pediatrician in the Seattle area who is PANDAS knowledgeable so I will have the option to explore both western medicine treatments such as steroids & IVIG as well as looking at the eastern medicine side working with ND Dr. Gbedawo. So far I am not having much luck finding someone who can prescribe and treat with IVIG - (hoping Dr. Ming is a possibility.) The very first time my son showed major separation anxiety and started having difficulties in school was first grade. I thought the problems were solely due to ADHD & dysgraphia/dyslexia. I now realize this may have been PANDAS and/or PANDAS causing an exacerbation of co-morbid ADHD & dysgraphia. My son has had two rounds of antibiotics since December and has had some symptom relief, but he is still having extreme anxiety and is unable to attend school. He has now been out of school with the exception of a few days here and there since Nov. 28, 2016. It is agonizing watching him be in so much distress (mostly anxiety) and not feel like we are directly treating possible inflammation on his brain with continued antibiotics and/or anti-inflammatories. We have started regular vitamins and fish oil to try to help with the inflammation, but that is not cutting it and we need a PANDAS specialist to move on with treatment. Thankfully we are not seeing tics or obvious OCD - (although I fear there may be some hidden OCD issues.) We are seeing: restricted food intake; extreme anxiety; separation anxiety; emotional lability & depression; irritability, aggression and oppositional behaviors; regression; deterioration in school performance; increased sensory & motor skill issues; somatic issues including nighttime fears and inability to sleep in his own bed. He was picking at his thumbs until they bled, but thankfully that has stopped. Not sure where this fits in other than an "escape" from this nightmare, but he has become obsessed with his cell phone and will not be away from it for any length of time. Huge fits and rages if we try to limit it or take it away. Any thoughts you have would be greatly appreciated!
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