Jump to content
ACN Latitudes Forums

GatsMom

Members
  • Posts

    220
  • Joined

  • Last visited

Posts posted by GatsMom

  1. This may just be the physical conern du jour for my ds16 but for the second day in a row he's complaining of a "weird" feeling behind his nose and encompassing his throat. No pain, not a tickle. Says it feels dry, "like someone threw baby powder down there". Interestingly, stomach pain (normally a daily complaint) has not been present. The sinus/throat stuff is making him nervous and spinning up his anx/separation anx. We're on day 4 of azith 500mg (our first time ever on properly prescribed doses) and are seeing some really nice gains. Is it completely unrealistic to think this might be a herx reaction as his immune system steps in to finally get a strep under control that Azith is slowing the progression of? In support of the last sentence, his main anxiety triggers have been less active since starting abx, it seems odd that he'd develop a new one at this point. We're hours away from nighttime supps so I'm giving dose of activated charcoal in case there's a die off mess to mop up but I'm interested if anyone else has seen anything similar.

     

    Many thanks to all,

    Gayle

    Gayle,

    Just make sure you do not give the charcoal too close to the abxs as it may bind them up and render them useless. I think you need to keep it four hours away on either end. I do give it from time to time to my son, but it's hard to find a time to give it when it's away from everything else the poor child has to take! Usually I give it to him at noon (since he takes the abxs with breakfast and dinner) and just move the lunch supps to late afternoon. Between that and trying to give the probiotics away from the antibiotics, it's hard to find enough time in the day... There was an article of biofilm that covered what the best way to time this would be...

    Also, a simple thing to try is to keep the vaporizer on :) It really helps around here when the weather is cold and the heat is running non-stop.

     

    Mati's Mom and Vickie,

     

    Thanks very much! I've had the vaporizer on in his room for the past couple days. I am very cautious with use of charcoal though I've always been told 2 hours away from all meds/supps. Dr. Usman's biofilm protocol actually says 1 hour (but I always do at least 2). I agree, the kids takes so much that it's hard to space it all out and in this case, really hard when he sleeps as much as he does during an exacerbation. I didn't know about giving probiotics away from antibiotics but will certainly do that from this point out. Last night I finally gave him Loratidine 10mg which is what he takes as needed for allergies (cat and ragweed). That really helped! His mood lightened within 30 mins and I have to wonder if Loratidine doesn't have an anti-inflammatory quality about it as well as antihistimine. Saline spray has been in the house all along, if this happens again, I'm going to push him toward that. He's so tired of taking pills and not feeling back to normal. I appreciate, so much, your input!

     

    Gayle

  2. On the same topic of changing diets for our children, I ran across this today as I was looking to see if I could see anything that showed a strep/gluten connection. This does reference frequent strep infections as one of the reasons to test for gluren sensitivity as well as neurological issues and OCD. There does seem to be some cross over with Celiac and PANDAS I think somehow, maybe the autoimmune connection.

     

    http://glutenfreeeasily.com/wp-content/upl...N-ISSUES_v3.pdf

     

    Susan

     

    A local herbalist who has been watching the journey of my son has been pushing me toward GF stating that if there is permeability in the BBB, it will be made far worse if there is a gluten sensitivity.

     

    Gat's mom.

  3. This may just be the physical conern du jour for my ds16 but for the second day in a row he's complaining of a "weird" feeling behind his nose and encompassing his throat. No pain, not a tickle. Says it feels dry, "like someone threw baby powder down there". Interestingly, stomach pain (normally a daily complaint) has not been present. The sinus/throat stuff is making him nervous and spinning up his anx/separation anx. We're on day 4 of azith 500mg (our first time ever on properly prescribed doses) and are seeing some really nice gains. Is it completely unrealistic to think this might be a herx reaction as his immune system steps in to finally get a strep under control that Azith is slowing the progression of? In support of the last sentence, his main anxiety triggers have been less active since starting abx, it seems odd that he'd develop a new one at this point. We're hours away from nighttime supps so I'm giving dose of activated charcoal in case there's a die off mess to mop up but I'm interested if anyone else has seen anything similar.

     

    Many thanks to all,

    Gayle

  4. Hello

     

    Our dd also ramped up during her 1st abx and for us it was just that we were already ramping and had to wait for abx to kick in BUT...

     

    Dr T asked if we had been Lyme tested 'cos when kids with Lyme's (which can present similarly to PANDAS) start on abx they often get a die off reaction called herxheimer. This actually makes symptoms worse until the die off levels again.. dunno.. just a thought.

     

    I was just thinking the same thing while reading the thread, could it be a herx reaction? Treating candida with antifungals, as well as abx for Lyme, can cause that "healing regression" or herx.

  5. Hi Gayle,

     

    DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks.

     

    Ellie

     

    Hi Ellie,

     

    Thank you so much for the steroid dosing! Such a help to me. My ds16 is 150lbs but sadly, losing weight again during this exacerbation. Do you use abx as well? How does she respond to abx as compared to abx with steroids? We are on day 4 of zith 500mg for the first time in 6 years of PANDAS and seeing some very nice changes! Did she ever struggle with separation anxiety? That is still one of the primary issues of my son, despite his age, when exacerbated. I'm sorry for so many questions, but to talk to another PANDAS mom of a teen is such a blessing to me. I'd be so appreciative of any personal advice or resources designed for teens wrt PANDAS.

     

    Many thanks!

    Gayle

  6. Danny had a great day today

     

    Do the kids usually do well so soon?

     

    Very little talking to himself very little

    Very good mood

    litttle tics

     

    He didnt go to school but he did go to work and did his school work without any problems at all

     

    he doesnt want to go to school tomorrow he thinks he will "flip out" so I think he will go to work again.

     

    Melanie

     

    Melanie and Ellie,

     

    May I ask the dose of steroids you're using so successfully for your kids. I have an appt with a new doc (here we go again) on 2/3 and I'm trying to have all available ducks in a row prior. Printing off Dr. T's latest post was a huge help.

     

    Many thanks,

    Gayle

  7. Hi - I think stomach pain & PANDAS are closely related in many cases. We had sudden onset OCD at the same time as stomach pain each time. Everyone dismissed this as anxiety, but I could not believe it could arrive so quickly. So in desperation, we did an intensive therapy program to help sort out real pain from anxiety with the support of her therapist. Once we could really track it, it was clear that she was "tasting throw-up" in her mouth (acid) and having stomach pain when she was hungry, full, or needed to use the restroom. We got a GI doc interested after testing positive for Celiac (falsely) and he knew about PANDAS. In the end, we did an endoscope & discovered that she had multiple Peptic Ulcers. She was negative for H. Pylori, and we were not using advil or another NSAID. After treatment with Prevacid, we were able to get this under control in about 10 days.

     

    Recently, she had an 8 day episode that we got under control quickly with abx. However, during the episode, she again had breakthrough stomach pain, despite the Prevacid. Gone at the end of the 8th day, along with the OCD.

     

    I hear about so many kids with stomach pain, but it is usually undiagnosed. Dr. K also talks about this on his site when he discussed Teen Onset of PANDAS.

     

    All so interesting, again while I wouldn't wish it on another soul, it brings me so much peace to know it's not just us. I watched him closely tonight, the lighter his mood became the better his stomach was and further, the better his color became. Our DAN! doc is all about gut health and we have several practices in place to ensure this but when (and only when) he is in a PANDAS backslide, that child has the worst acid reflux I could imagine. This is complete with waking occasionally with a coated brown tongue and the worst breath possible. We have great success using activated charcoal with the reflux is really bad in combination with omeprazole 20mg. The charcoal soaks up anything its near, including meds/supps to always give it 2 hours away from everything. Those on the DAN! protocol use it to soak up the die off effects of using antifungals, antivirals, chelators and abx. Our DAN! was convinced (and I agree) that Gat had a horrid yeast overgrowth as well as strep. Treating with the above mentioned supp/med helped. I also elevated the head of his mattress by just an inch or so. All tools in our reflux toolbox. There is a link, no doubt. He has a cast iron stomach and eats like a horse when he's not in a backslide.

     

    Could I please have Dr. K's web addy? We are now on Bradstreet's waiting list but just made an appt with a (another) local allergy/immunology doc for early Feb. Does anyone know where I might find any of the experts protocols or guidelines so I have something to use as a reference beyond my own personal experience?

     

    Many thanks to all!

    Gat's mom.

  8. Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board.

     

    He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite.

     

    Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours.

    Gat's mom.

    Gat's mom,

    Stomach pain can be a symptom of strep. My son had stomach aches, lose of apetite, fatigue, just feeling awful altogether. Once we got him on antibiotics, things improved, but it wasn't in a couple of days, it took a while. His strep was in his gut. Is your son on probiotics at the moment? If not, that's definitely something you will need to add. Also, some kids develop food sensitivities as a result of strep. My son never had issues before but now is testing allergic to dairy. So you might want to look into that. Or, is there any chance he has an ulcer? Not our case but I've heard of that.

    So basically, it could be related or not, but I would definitely look or a physical reason for the aches rather than just attribute it to the anxiety.

     

    Isabel

     

    Isabel,

    He is on a high test probiotic without strep strains, Klaire's Therabiotic Detox Support. I'm not having much luck getting kefir into him at present but I may have to put the hammer down on a couple ounces per day. Emotional lability has already improved after three doses. He has horrible reflux issues particularly when he's stressed. I give activated charcoal for that hours away from any other supps/meds. He's also back to taking omeprazole 20mg at night, which typically helps some. Here's the thing that keeps me coming back to stress hormones. When he has stomach pain, if he gets distracted the pain nearly immediately goes away and his mood rises again. Thanks so much for your feedback!

    Gayle

  9. Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board.

     

    He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite.

     

    Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours.

    Gat's mom.

  10. The Jan/Feb 2010 issue has an article entitled From Throat to Mind by Erica Westily.

     

     

    The opening sentence of the article is "The case for strep throat-induced mental illness grows stronger."

     

     

    There isn't a free online copy of the article. I am going to buy it today or tomrrow.

     

    I have access to the teaching hospital's medical library where I have an office. There hasn't been much that my contact there hasn't been able to obtain quickly for me. If she can, she'll likely email the article to me and if so, I'll be happy to circulate it. I have a message in to her now.

     

    Gat's mom.

  11. I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

     

    I have had the misfortune of having my son say, "I quit!". It is terrifying and exhausting. I am so sorry for what your family is going through but you are not alone. Have you tried epsom salts (magnesium sulfate) baths or oral magnesium supplementation? We use both around here, a little trick I picked up in the DAN! protocol. 2-3 cups of epsom salts in a bath (he listens to music, talks on the phone, sometimes just chills out) for about 25 minutes. In our most challenging days, he was taking 2-3 baths per day. Our DAN! likes Magnesium Glycinate for oral supplementation, they can tolerate higher doses. Comes in powder form and I mix half a teaspoon into a couple ounces of 100% grade juice. He can't taste it. Magnesium is a very important supp during times of increased stress. It's a relaxant, sleep aid and antidepressant. Cheap and not contraindicated with anything. And yeah, I take it, too. If he won't do the bath, you can buy mag sulfate cream. Kirkman labs make both. Just a thought. Hoping for a better day for you tomorrow.

     

    Gat's mom.

  12. Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

     

     

    Faith,

     

    This is an integrative MD who is not an immunologist but knows a lot more about immunology than most MD's. His wife apparently is also an MD with quite a bit of immunology knowledge. He did quite a work-up, almost felt like an AIDS panel (to me, in terms of lots of things I've heard of), cytomeglavirus, epstein barr, mycoplasm, herpes, pylori, and so on. Given my health situation, he and I were both surprised how they were all negative.

     

    Michael

     

     

    mati'smom,

    would this be evident to the doctor, re the immune system not competent? or something that would have to be deduced, looked into further? if that were the case, wouldn't one have symptoms of these things, something to show for it? could there be those infections present, but not necessarily have symptoms, however vague?

     

    Faith

     

    If I understand correctly what some of the autism researchers and parents believe correctly, viruses like cytomegalovirus, epstein barr and the entire cascade of HHV's can, like the heavy metals those kids have problems with, hide in tissue. During that period the patient will sometimes test negative but if successful attempts are made to release those toxins from their binding sites, the patient will test positive and this is considered a good thing. It also brings us back to the biofilm theory which I'd be willing to bet my next paycheck will become a key in treating not only autism spectrum disorders and other autoimmune diseases but PANDAS as well. I've said for four years that PANDAS is like an episodic placement on the autism spectrum.

     

    Gat's mom.

  13. My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through.

     

    I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful.

     

    I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

     

    Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh.....

     

     

    We have a 504 for my son, have since the 6th grade flare. We, too, are under "otherwise health impaired". We have a mtg set for 1/21 to make changes to the 504 to accommodate what's going on right now if we can get him in the building. I've begun the first steps of obtaining homebound services again. Last time this was a massive stumbling block. I'm more educated now, though, and feel pretty confident I will get the services he needs. Regarding the term "hypervigilent mom"...thank God we are. After 23 years of full time parenting, I'm ready to retire more than I can say but much like wornoutmom when he's sobbing, his life a fraction of what it was just a few weeks before, saying he'd rather be dead than live like this the rest of his life I know that giving up is simply not an option. I am thankful everyday for the intelligence and tenacity the push me forward. He deserves nothing less than a parent who is dedicated to finding the answer that I KNOW is out there.

  14. School is out of the question for my ds16 right now. Can you chime in and let me know if your child is in or out, particularly if it's a middle school or older child.

     

    If out, how aggressive did you need to be with the school to arrange homebound services?

     

    How do you handle schools, docs, family and casual onlookers who think you've just got a rotten kid or are chasing a quick fix regardless of the amount of research effort you've expended?

     

    Hearing how others handle it will help me to maintain my foothold and stability.

     

    Many thanks,

    Gat's mom.

  15. Mom2pandas- Please, "brag" all you can. It gives us all hope for our kids. It also helps put school in perspective- the main thing is that they are healthy, when they are healthy- they will catch up and live up to their potential. This is easier to see from the outside, than when you are in the midst of an episode. I would like weekly reminders from you about how bad you were, and how great everything turned out in the end :)

     

    Agreed...it is life giving to me at this point. I told him about you this morning when he tried and failed to get to school again. I have searched back through three years of medical journals on him and we have never tried Azith at 500mg, only 250mg and then only in short doses and even that was when he was very deep in an episode. No steroids have ever been tried.

     

    Dermatologist, if necessary.

    My dentist who is a good friend and has watched me go through this with him for years, you bet.

    My ex-bf who is a doc in another state, absolutely.

     

    Whatever it takes. I've done the homework. I knew the answer three years ago and let others pull me away. I'm very thankful for what I've learned on the DAN! it has served us well. I strongly suspect a biofilm but even so we still need a robust trial of abx.

     

    You've all been wonderful, a Godsend for certain.

    Gat's mom

  16. Hi Gat's Mom,

     

    So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

     

    Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

     

    If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

     

    Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

     

    Let me know if there is anything at all that I can do.

     

     

    Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

     

    It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

     

    momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

     

    I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

     

    Many thanks,

    Gat's mom

     

    Further...that's brilliant about the dermatologist for abx. Yes, he does have acne, enough to warrant the abx. I am not opposed to sliding in a back door to have his needs met. I gave up conformity when it was clear how many times he was misdiagnosed. You rock!

  17. Others will chime in about the dosing. I know the 250 twice week isn't enough though.

     

    Do get everyone in the house tested. you can have strep w/o symptoms. That's the case for all 3 of my kid. if I did have the mentality to "rule it out" when my PANDAS son was +, I would have never know they had strep as well. Get the adults tested too.

     

    If he can take Ibuprofen, give him that and see if it helps with his PANDAS symptoms. Some see some relief with it.

     

    Vickie,

     

    I will have testing ordered on his sister and I. She just finished nursing school and will be living at home for a few months before moving out on her own. All the more reason to get that boy on some sort of aggressive protocol stat! I have noticed that things get a big better when he takes Ibuprofen.

     

    He's on a good deal of supplements now as part of the DAN! protocol. We will be keeping those on board as they all support a healthy, but moderated immune system and address some of the focus and ocd symptoms from a natural standpoint.

     

    Thank you so, so much for your response. I feel 100X more understood and less isolated than I did this morning.

     

    Gat's mom

  18. Hi Gat's Mom,

     

    So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

     

    Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

     

    If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

     

    Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

     

    Let me know if there is anything at all that I can do.

     

     

    Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

     

    It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

     

    momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

     

    I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

     

    Many thanks,

    Gat's mom

     

    momto2pandas,

     

    You have done more for me than you realize. He doesn't think his life will get better, he is beginning to believe he's been singled out for a "horrible life". He doesn't want to fall behind at school and the anxiety of going is wearing him down to a shell. He beats himself up for being weak and feels the pain of it all so intensely (who wouldn't?). I can understand where he gets this thinking, particularly since he's feeling his emotions sooo powerfully during this backslide. At 8 and 11, he was only thinking about the now. At 16, he's wanting some assurances that he gets a good life like everyone else. I can now, honestly, tell him that I know of someone who had it and has grown up, on and away from it.

     

    You're correct about the talents though. His the most intuitive human I know with a deep streak of understanding and compassion, neither of which have been returned to him in great depth by our school system. I will review the book but think it sounds fabulous.

     

    These are the hardest days we've ever experienced (in all 3 episodes). I wondered today how in the world I'd get through it again and be optimistic, calm and focused for him. You were right on time, such a benefit to me. Thank you so very much.

     

    Gat's mom

  19. Here's a link to her most recent post. You can send her a personal message (to ensure she reads it) and perhaps she can direct you to a doctor.

     

    http://www.latitudes.org/forums/index.php?showtopic=6509

     

    Vickie, thanks so much for responding. He started tonight the only abx I could get his DAN! to prescribe. 3 days of Azith 500mg bid, followed by 250mg twice a week for a month. I would be highly surprised if that was enough to bring about significant change in him. We need significant change asap. He wants to be in school but the anxiety about being there is more than he can do. This is worse than at age 11 where he didn't want to be in school at all.

     

    I've been reading everything I can find on biofilms as well and we're actually following (since thursday) Dr. Usman's protocol. Very interesting information that I believe may help us get the most out of abx treatment. He's had titers drawn that were wildly high. The rest of the house has never been tested, though I have a long, ugly pediatric history of urethral strictures which an herbalist we know says is almost always strep.

     

    I believe I have a kid with multiple layers including some heavy metals from an MMR at 15 mos that went way wrong. Strep is just the one that grinds his world to an immediate half. I'm looking up TracyRee now. Thanks, again, so much for the lead.

     

    Gayle

  20. Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

     

    It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

     

    momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

     

    I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

     

    Many thanks,

    Gat's mom

×
×
  • Create New...