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cynditk

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Posts posted by cynditk

  1. Were you ill apart from your tics? Sounds great, I have considered it for my son, who's been dx'ed with Immune deficiency. Talked about helminth tx with his doctor who said she would be concerned with his immune deficiency. He has been ill for years already. I don't care about the yuck factor, living with a sick person for years on end is way worse than any worms, but I am concerned that it would make him worse because of the immune deficiency, which is different than autoimmune.

  2. Hi all,

     

    We had a bizarre thing happen the last several weeks. When we went to my son's PANDAS doc for a check-up, his BP readings were extremely low, they got down to 120/20. He also had a 100 degree fever. They packed him in ice, and his BP went up slowly, temp went down slowly. He seems to have lost the ability to regulate his temperature. He can't go out if it's over 70 degrees or he gets overheated. This seems to have started since he's been on prednisone. Anyone else have this experience?

     

    We are going tomorrow to get him tested for lyme, he has been so ill the last months he cannot attend school, there seems to be more going on here than just PANDAS I'm disappointed as we had an apt with Dr B in last August but we will have to cancel as he is not well enough to travel. So discouraged right now.

  3. Hi all,

     

     

    What are people doing for school for kids/teens who are severely ill? And if in school, how do they handle the cognitive challenges and fatigue that go along with treatment?

     

    My son has not done schooling since April, and before that was homeschooled. Homeschooling was good for the health issues, but he wasn't happy. He prefers to be in school but at this point doesn't feel like he could keep up with the demands.

     

    We are considering having him try and attend an LD school (school for kids who are learning delayed/disabled) , and I am thinking of trying to legally maintain homeschooling status so he doesn't have to meet their required seat hours.

     

    How are others coping with school?

  4. Hi all,

     

     

    Thanks for your feedback from last post. We have an apt to see Dr.B in late August. My son has been treated for immune deficiency by Dr.Gupta at UCI for 2 years, which for him consists of low dose SCIG weekly. Dr.Gupta is not up to speed on PANDAS or Lyme. IG therapy has helped him immensely, and after 2 years he developed what we thought was PANDAS but may be more complicated than that. Dr.Gupta did not do a typical assessment for immune deficiency because he does not like to vaccinate kids to test them who have previously had bad reactions to vaccines, which my son has. My son was diagnosed using his IgG subclass deficiencies and clinical presentation.

     

    So, we are considering the high dose IVIG protocol, but my son will not be able to go through the usual testing protocol because he is already on IG therapy. I am concerned that Dr.B will not know what to do with us since we can't go the "usual route" with testing, and also all the titre testing they like to do will not be accurate. We are in Seattle, is it worth it for us to go all the way to CE for a second opinion? I am nervous about dragging my son on this long trip and having it not be fruitful.

     

    Any thoughts, anyone been in a similar situation?

  5. Well...definitely sounds like my daughter then.

     

    I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.

     

    If you are interested in the Lab Panel #'s send me a PM.

     

     

     

    I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?

    BTW, he regresses in a major way whenever we take him off the zithromax.

     

    Also, Shae's Mom, who is your immunologist? My son has IgG Subclass deficiency. We never tested for antibody deficiency because Dr.Gupta did not want to immunize to test.

  6. Well...definitely sounds like my daughter then.

     

    I was able to get our local Doc to order some blood work for us before our appt with the LLMD. She wrote the order for us and then we took it to our local LabCorp for the blood draw. Took about a week for the results and insurance paid for everything. I went ahead and order the WB from IgeneX too.

     

    If you are interested in the Lab Panel #'s send me a PM.

     

     

     

    I have an apt with LLMD next week. My son is currently doing really well on Zithromax. Would it be OK to add in a trial of doxy to the zith and see how he responds?

    BTW, he regresses in a major way whenever we take him off the zithromax.

  7. immune deficiency. overnight onset of severe anxiety-stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. No real tics, no real rituals, compulsions. wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation.

     

    You've just pretty much described my dd9 with the exception of her daily headaches and her GI issues. She receives IVIG every 4 weeks for her immune issues.

     

    Has your son been dx'd with CVID or something else?

     

    We spent years trying to get someone to listen about the constipation, UTI's and fevers. No one did until the PANDAS symptoms kicked in around age 6. No one could ignore us then. Managing the PANDAS and IVIG helped for about 18 months and then she took a major backslide. We found out a few months ago she has congitial Lyme.

     

     

    Great advice from the other Mom's. Good luck finding answers.

     

     

    he also has daily headaches and GI issues!

     

  8. Hi all,

    Just want some feedback here to see if we are on the right track. According to DR.K's criteria we fit for PANDAS/PITAND, but I don't know, my son presents so atypically. He is 16, and also has an immune deficiency. Back in March he had overnight onset of severe anxiety- he withdrew to his room and wouldn't come out, and was so anxious he couldn't even talk to us at times. He stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. He did not go outside for several months except to go to DR's visits. We suspected PANDAS mainly because of overnight presentation. He has had some mild OCD like always wanting doors closed. No real tics, no real rituals, compulsions. We started him on Zithromax daily and gradually all his symptoms began to fade. We are 3 months out-up to 1000mg daily zithromax- and he is acting mostly normal again- he still gets anxious now but is not consumed by anxiety, and is slowly starting to venture out into the world again. Beth Maloney said she didn't think the Zith was actually treating pandas and suggested Augmentan. This week we tried IM penicillin and took him off zith- after three days he has begun to go downhill and experience anxiety again. He also suffers from a wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation. Unfortunately we cannot test accurately for a bunch of stuff because he's on IVIG for immune deficiency, but I am thinking maybe we are barking up the wrong tree and maybe he has mycoplasma and Lyme, and not PANDAS?

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  9. Hi all,

    Just want some feedback here to see if we are on the right track. According to DR.K's criteria we fit for PANDAS/PITAND, but I don't know, my son presents so atypically. He is 16, and also has an immune deficiency. Back in March he had overnight onset of severe anxiety- he withdrew to his room and wouldn't come out, and was so anxious he couldn't even talk to us at times. He stopped basic hygeine, cognitively he declined, he became like a different person overnight. When we could get him to come out of his room he wanted all windows shut, all doors closed, and all blinds drawn, he said because of light and noise sensitivity. He did not go outside for several months except to go to DR's visits. We suspected PANDAS mainly because of overnight presentation. He has had some mild OCD like always wanting doors closed. No real tics, no real rituals, compulsions. We started him on Zithromax daily and gradually all his symptoms began to fade. We are 3 months out-up to 1000mg daily zithromax- and he is acting mostly normal again- he still gets anxious now but is not consumed by anxiety, and is slowly starting to venture out into the world again. Beth Maloney said she didn't think the Zith was actually treating pandas and suggested Augmentan. This week we tried IM penicillin and took him off zith- after three days he has begun to go downhill and experience anxiety again. He also suffers from a wide range of physical symptoms-joint pain, sore throats, low fevers on and off, problems with urination, and constipation. Unfortunately we cannot test accurately for a bunch of stuff because he's on IVIG for immune deficiency, but I am thinking maybe we are barking up the wrong tree and maybe he has mycoplasma and Lyme, and not PANDAS?

  10. IVIG questions:

     

    Hi kimballot,

     

    I have some questions regarding IVIG and DR.B:

    What type of immune deficiency is your son dx'd with? Did you do vaccine testing?

    Are you doing high dose or typical dose IVIG? Why every 8 weeks? That is not typical for immune deficiency.

     

    Thanks!

  11. Hi all,

     

    I'm new here but am already getting so much out of reading the posts. Thank God for this forum.

     

    DS is 16 with a complicated medical history. Before aged 12, presented with HFA, sensory issues,some learning challenges/ ADD, mild OCD, severe food intolerances, poor growth/inability to gain weight. We did a whole lot of different kinds of therapies to treat all this, mostly natural and holistic ones. At 12, he began to have severe fatigue and frequent infections, and after being housebound for months, was diagnosed with a mild immune deficiency and was treated for 2 years with IVIG and SCIG. He regained his functionality, attended a homeschool co-op, and began to have a more normal life. Then, this past year in April, had a severe PANDAS episode-was diagnosed with PANDAS and started treatment-high dose antibiotics, steroid burst, and weekly immunoglobulin for his immune deficiency-not at high enough dose to treat PANDAS. He is doing much better but is still mostly housebound. He did not finish 9th grade last year, and even though he is improving at a steady pace, not sure he will be well enough to go back to school in the fall.

     

    When do you all think it would be appropriate to consider intensive treatment? My husband and I think that if he was not able to attend school in the fall then we would enroll him in an intensive program. But since he is showing steady signs of improvement, would this be a good idea? How fast should improvement with PANDAS be if it is being appropriately treated?

     

    Thanks for any advice!

     

    Cyndi, mom to Lucas

  12. Hi all,

     

    So I finally got to see Dr. Schulman. I was very impressed with her. She gave me one hour of her time and really listened to me. She says there is no doubt in her mind that this is Pandas, and is treating appropriately.

     

    Two very interesting things she told me:

     

    1) There is a genetic component to Pandas; the majority of Pandas patients are of Jewish or Irish descent.

    Do you find this to be true? I am Jewish.

     

    2) She gets IVIG paid for by insurance, without a fight, by doing it in a Cancer Outpatient Center, and billing it as "Post Infection Encephalitis" Works every time. If any of you don't have the 15 grand, this might be the route to go.

     

    Thanks for all your support!!

     

     

    Thanks, great news, where is she located?

  13. I have not been on here for months, and like an addict, I have checked in today and now can not step away. I have found a need to reply to every post.

     

    Today my DS11 handed me a birthday card that he has been working on for a few days...better late than never. :)

     

    It said: "Dear Mom, I want you to know that I will love you forever. I also want you to know that I'm glad that you had a great birthday, you so deserved it. You are one of the most special and best things that ever came into my life and you do so much for me and the family, like busting your butt doing research on P.A.N.D.A.S. & contacting doctors and doing all the chores and stuff like that! Bottom line, my love for you is infinity!" Love, Hunter

     

     

    Thought I would share why I will not give up on this beautiful young man. Our children will use their experiences to do great things in this world.

     

     

    also, love the way that I CAME INTO HIS LIFE...I'm pretty sure that I was here before him! ;)

     

     

    So beautiful...Thanks for sharing!!!

     

     

    Good Night

  14. I will be interested as well. My son had his exacerbation around the same time and is 16, missed school from March onward so did not complete 9th grade. Were hoping he'd be ready to go back in the fall, but not sure here either. If he does I think it will be a school for LD- private, small classes, used to different kids, ability to handle emotional issues. We'll see, but I am curious to hear about the clinic as well.

  15. I would do all the testing. Is DR.B suggesting IVIG at all? Why or why not? Did you try high dose prophylactic antibiotics?

     

    We will be getting tested for Lyme as well soon.

     

    Also what about mycoplasma?

     

    There are supplements you can use to help with decreasing anxiety and rages-they won't help immediately but do help over time. GABA, melatonin, things that reduce glutamate.

     

    We do everything-antibiotics, IVIG for immune deficiency, supplements, homeopathy.

  16. OK, my guess would be that they want him to try a course of prophylactic antibiotics-that would be daily antibiotics to prevent infections- have you guys done this yet? How does him immune deficiency manifest? My son has one too, so I get it, my son has been treated for immune deficiency before he got diagnosed with PANDAS. Do you know what markers for immune deficiency showed up-what his official diagnosis is? And what testing did DR.B do?

     

     

     

     

     

    Dr. B.'s office has been battling our BCBS of Texas for 6 weeks now - for Preapproval of IVIG. Our DS11 's tests have shown immune deficiencies and the codes the doctor listed are under the approved code list. However they are denying coverage anyway because they claim that we are not showing proof that other treatments have failed. WE DO NOT use PANDAS on any of the insurance requests because if you read their BCBS website, they literally have a section on PANDAS and why they do not cover it! We are getting an IVIG done anyway but with flight, car, hotel, and the fact that he is 11 years old so weighs 95 lbs (IVIG cost is by weight of the child) this trip on July 24-27 will be $12,000. and we are scheduled for one in Sept. and Nov. That means we will have paid $36,000. out of pocket in just a few short months! WOW-seriously

     

    Not to sound cheap, but we also have 2 other boys fighting this illness and pay for antibiotics for all 3 each month and $150. a week in therapy and we have a $10,000 deductable that has already been met!

     

     

    Help with suggestions please

  17. What we're dealing with is incredibly disregulated immune systems, and immune systems are incredibly complicated in and of themselves. The doctors are 1 step ahead of us, trying to figure this out as they go. There is no handbook, no map. We have been at this for 4 years now. Whole months go by in a blur of (for me) caregiving, putting one foot in front of the other, seeing another specialist, making endless arrangements and trying new therapies, new medications. In my job, I work with people who have MS and it feels very similar to what they go through-some of them maintain their functioning, some of them get worse. Every day is an unknown. My son is in an acute stage and housebound for the last 3 months- we have a handful of diagnoses that we are dealing with, PANDAS, possibly PITAND, Immune Deficiency, ADD, Learning disabled. The symptoms he has affect every bodily system-the behavioral stuff is a small part of his overall picture. He is suspect for Lyme or Mycoplasma. On and on it goes.

     

    I know he will live with this for the rest of his life. It would be nice if someday there's a cure for him and he can resume a "typical" life, but I don't count on it happening anymore. At this point we are still reaching for all the medical help we can get, but quietly planning a life that will include chronic illness and finding a way to create the best possible experience for him. He has been ill with various things for most of his life, and he is only 16. He has had months and even 2 years when he was relatively free from sickness, but those times have been the exception rather than the rule. Before antibiotics and immune modulating treatments he would have probably died, so I am grateful for him to be with us and share the life that he has with us.

     

    Sometimes I feel that he suffers too much, and that is the hardest part-helping him to see his life as worthwhile in the midst of all the suffering, helping him to see the bright spots and helping him feel loved and connected to life.

     

     

    If you know your son has PANDAS/PITAND, simply work on the infection and then follow it with immunomodulatory treatment. There's no reason to plan a life of chronic illness. It's very much possible to live a normal life with this disease. You just have to fight for it. Do you see a PANDAS specialist? Are they willing to help?

     

     

    Yes, that's what we've been doing. He has been sick for 4 years, maybe he will get better, and maybe he will continue to struggle with good days and bad. I believe we are missing pieces of his puzzle and will continue to aggressively seek treatment. I think he has multiple issues and infections-he has immune deficiency as well as PANDAS, and maybe Lyme as well. He has the OCD/Pandas stuff but he is dealing with a lot of other things as well, like Emerson and others on the list. If treatment were that easy wouldn't all the kids be better by now? Some respond quickly, and some don't.

  18. Hi,

     

    Who has had success, and with which doctors, in getting high dose IVIG covered by insurance? 1 gram of IVIG per kg weight is considered high dose. My son has a diagnosed immune deficiency and sees an immunologist for that but his immunologist doesn't know about PANDAS and won't recommend high dose IVIG for him at this time.

     

    Thanks,

    Cyndi

  19. Can anyone tell me how I could recognize this test if I have the lab work in hand? My immunologist ia currently in India so I've kind of just been sitting on this workup for the time being.

     

    Emerson you should have an immune workup if you have that many dx's. Sounds like a possible immune deficiency to me.

  20. What we're dealing with is incredibly disregulated immune systems, and immune systems are incredibly complicated in and of themselves. The doctors are 1 step ahead of us, trying to figure this out as they go. There is no handbook, no map. We have been at this for 4 years now. Whole months go by in a blur of (for me) caregiving, putting one foot in front of the other, seeing another specialist, making endless arrangements and trying new therapies, new medications. In my job, I work with people who have MS and it feels very similar to what they go through-some of them maintain their functioning, some of them get worse. Every day is an unknown. My son is in an acute stage and housebound for the last 3 months- we have a handful of diagnoses that we are dealing with, PANDAS, possibly PITAND, Immune Deficiency, ADD, Learning disabled. The symptoms he has affect every bodily system-the behavioral stuff is a small part of his overall picture. He is suspect for Lyme or Mycoplasma. On and on it goes.

     

    I know he will live with this for the rest of his life. It would be nice if someday there's a cure for him and he can resume a "typical" life, but I don't count on it happening anymore. At this point we are still reaching for all the medical help we can get, but quietly planning a life that will include chronic illness and finding a way to create the best possible experience for him. He has been ill with various things for most of his life, and he is only 16. He has had months and even 2 years when he was relatively free from sickness, but those times have been the exception rather than the rule. Before antibiotics and immune modulating treatments he would have probably died, so I am grateful for him to be with us and share the life that he has with us.

     

    Sometimes I feel that he suffers too much, and that is the hardest part-helping him to see his life as worthwhile in the midst of all the suffering, helping him to see the bright spots and helping him feel loved and connected to life.

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