cynditk

Hi all, I posted on PANDAS forum, got no reply, thought I'd try here. 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? He is describing that he can't really feel if he is getting too hot, like his nerves aren't working right, also experiencing some numbness. Could this be MS? We are going to get him tested for lyme, but need to wait till it gets cooler so I can take him out w/o worrying his BP will drop. 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. Should I try taking him to a neuro to get an MRI? 0 + -

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.

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.

So doing a PET scan helps convince insurers that there is a reason to cover hd IVIG? I'd never heard this before. Is this something Dr.B recommends doing, or do you have to go through the research guy? How would one get considered for this? We live in Seattle and are flying in to see Dr.B end of August.

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?

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?

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.

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.

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!

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? 0 + -

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?

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!

Hi all, To rule out other family members having strep or being carriers, should they get a rapid strep and titers, or is the rapid strep enough to rule it out?

I mean one of those programs where the teen gets intensive counseling, CBT or ERT for 3-4 weeks daily.

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

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.

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.

We use GABA as well as melatonin, it helps with sleep for sure, I hadn't thought about the glutamate connection. We use a lot of supplements in addition to drugs that seem to help.

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?

Thanks, I only recently became aware of this, we are weaning him down now.

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.

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

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