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GatsMom

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Everything posted by GatsMom

  1. Hi Karen, Like the others, I know exactly how you feel. My cousin holds her PhD in psychology and she's well aware of what goes on in my world. She says that without fail I would qualify for a diagnosis of PTSD. Tomorrow is our first day of school. He wants desperately to go but I know this is just not going to fly. We've had to discontinue all abx months ago because of the train wreck that his gut was. We're trying something new but only 17 days into it and seeing good results but not enough yet to take on the ultimate challenge...school. Anyway, know that you're not alone and I maintain that, given what this group of parents has lived through, your reactions are completely reasonable. I know from our middle school experience that ONLY time brought me to a point of not jumping at the slightest symptom. It took a few years and oddly, this backslide began a few months after I finally let my guard down. I do know, however, that he was going to have this episode whether I stressed about it and kept his life under the microscope or not. You cannot imagine how much I look back on the 6 months before he got sick and am so thankful for the life I had then and the enjoyment I was getting from it at that time. I'm sorry for what you're going through, I live there myself these days. Gayle
  2. We've had success using Revitapops (revitapop.com) an MB12 supplement developed by Stan Kurtz. They give ds16 a calm, clean focus. We've tried MB12 nose spray a few times but it didn't produce a result, even at higher doses. I've learned in the last few weeks that folks with type A blood have a difficult time maintaining B12 levels particularly when under stress/illness. Also, clostridia infections in the gut which can come from extended abx use can really screw up the methylation cycle. I wouldn't do long term abx without some form of Methyl B12 supplementation. We've seen no negative backlash from this supplement.
  3. Toe walking, hand flapping (both especially in moments of high stress). Rashes around the mouth and nose that come and go within a couple hours. Stomach aches...the very intense, doubled over kind that come on suddenly. Laughing out of normal context including laughing during sleep.
  4. We've had two intense weeks but the past couple days have been more ramped up than ever. I've hear parasites during a full moon.
  5. How much sleep my ds16 requires is a pretty good barometer of where he is in a PANDAS backslide. 10 wks ago he was sleeping a consistent 12-14 hours per day (all at one time, no naps). Now we are consistently at 10-11 hours. Today was 8. I agree with the fight or flight reference. You can't possibly be in fight or flight most of the day and not be exhausted. Our bodies were not built for that and it's going to take a huge toll. I personally believe that it also accounts for some of his weight loss. His eating wasn't disrupted long enough to account for 20+lbs in 4 wks. I believe he's burning calories in fight or flight, too but I don't know if there is any science to back that up.
  6. I'm very interested as we have fungal issues to make abx therapy a true challenge. We have a homeopathic consult this afternoon which about which I've heard very good things. We had a negative lyme via labcorp but I'd bet the farm there's something lyme going on in my kid. What's your new doc trying? How old is your son? Gat's mom
  7. A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm. Momto2pandas, I KNEW you would have something insightful to say on this subject. You definitely bring an element of experience to this that most of us lack. I am so thankful everyday that my ds16 talks about his future in casual ways that show me he doesn't live in the fear of recurrence that I do. Everytime he says something like, "I want to live in NYC someday" or "When I have kids, I'm going to have them involved in sports right from the start." He says them with ease and without dissecting to make sure they are legitimate and able to be achieved by him. What was life like for your parents and I've been wanting to ask you for so long, did they recover and go on to live happy lives? Thanks for all you contribute! Gayle
  8. Right on time, Vickie! Please repost it around Mother's Day when we all need to be reminded again. Thanks so much for a moment of clarity!
  9. A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.
  10. In recent weeks, I've come to the conclusion that I have to limit my search/research time which is why I check the updates to the board quickly once or twice per day but don't spend all day on it. It is, at best, an oppressive disease. We have been homebound with immovable separation anx for almost 3 months. There are very few moments of mental escape as the evidence of a crashing kid, crashing career and crashing finances are everywhere. Three weeks ago, I resolved to make no move from a place of fear. My days are spent exploring options only when they truly resonate in my gut and head. I busy myself around the house and spend copious amounts of time daily in meditation and prayer. I use inspirational books, cds, websites, etc. I remind myself that he has recovered from this before with far less knowledge than we currently have. In an effort to contain the costs of spring planting (which brings me so much joy), my older daughter and I planted seeds into homemade seed trays last week. (total cost, practically zero) Since it's still cold outside they have been left to sprout in my bedroom by a window. I look at them daily to remind myself that despite my inability to see progress, progress is taking place. Sure enough, yesterday the first green bean, morning glory and black eyed susan plants became visible, proving that point. That said, there are moments (sometimes hours) in almost every day when I cannot imagine how we'll overcome this, when the reality of it is simply smothering. I am but human and when this happens, I do my level best to know the moment will pass and direct myself to a book, cd or website until I can direct my own thoughts in a more healthy way.
  11. Been there and done that, too. During both the 9 yr old episode and the 11 yr old episode he regressed back to interests and play that he had previously outgrown. It actually seemed to bring him some peace at the time. When the episode ended, he went right back to age appropriate interests. I haven't had that regressed interest in him this episode and I'm not sure what to make of it but it was definitely present in earlier years and he popped right back to "normal" once his body recovered.
  12. How about that band 41? How are you feeling these days? Are you still on biaxin? Gayle Not sure what the answer to how I'm feeling is. I am seeing some relief from the fluorescent lights and wireless symptoms, nowhere near enough to go back to work, but seeing it headed in the right direction is nice. Those sensitivities have slowly gotten worse over the last 25 years, but with peaks and valleys for overall health and strength. So, maybe the reduced sensitivities is just that I am overall much healthier, with all the treatments, or maybe and hopefully something more, maybe really treating the problem somehow. No idea which it is. I finished the 1 month of biaxin, then took 10 days off antibiotics, and started augmentin last week. The intent of the break was to improve the fungus problem, and really it ended up flaring up for some reason during that time, with now problems with acid reflux during sleeptime, and this fur on my tongue and bad breath to go with it. With the augmentin added to the fungus issue, I am waking up pretty exhausted in the morning. This month of augmentin looks to be quite another grind coming up, so basically just trying to hang in there and appreciate at least I don't have much in the way of responsibility during this time anyway. Michael Yeah, we can attest to how brutal the augmentin/biaxin blast can be when there's a background of yeast. I'm sure glad to hear there's a lessening in some of the sensitivities and I would take that as nothing but a sign that things are stabilizing to a degree. Hopefully it's the beginning of a core stabilization for you. It'll be interesting to see what becomes of the band 41 situation.
  13. How about that band 41? How are you feeling these days? Are you still on biaxin? Gayle
  14. Throw us into the mix. My ds16's first experience with PANDAS was in fall of 2002, he was 8. It happened again in fall of 2006 when he was 11. This one started this fall at age 15. Looking at his symptoms in each exacerbation and the labs that Dr. T. drew, it would certainly be reasonable to suspect mycoplasma was an issue, if not the key contributor, in each backslide. He was positive this time for IgG and IgM.
  15. Very important observation! Many kids with PITANDS have unexplained low ferritin levels! Low ferritin levels usually serve as a red flag to doctors for iron deficiency. In that case --- iron deficiency >> low ferritin levels. But, these kids are not iron deficient! - there are many markers of iron deficiency - low MCV, low hematocrit, high total iron binding capacity ... these kids are not iron deficient I have another idea -- what if the low ferritin is not a consequence of iron deficiency, but the primary problem? In that case low ferritin >> relative iron overload --- i.e. iron toxicity Where does iron toxicity manifest in the brain ---- surprise, surprise - the basal ganglia So giving iron here may be the wrong thing to do - patients may get worse! Another clue Low ferritin levels, whatever the cause, are invariably related to RESTLESS LEGS SYNDROME. The incidence of RLS, the most common movement disorder in adults (and maybe children too) is much higher in children with tics/Tourette's Read about restless legs syndrome here http://en.wikipedia.org/wiki/Restless_legs_syndrome Does this fit at all with your child .... Wow! This is every bit the puzzle that autism represents. Dr. T, I hope you know everyday how appreciated you are by parents like me! Gat's mom
  16. I agree! In our case, the melatonin got him to sleep . . . it just didn't keep him there. We should buy stock, too! Ever since putting DS on it and seeing what a change it made in getting him knocked out quicker every night, DH and I have been taking it, too. IMHO, works better than Benedryl! Boy, I thought it was just us. When will I learn that it is rarely "just us" experiencing anything. A good hour of flipping and turning in his bed despite melatonin and ocd behaviors (checking dates and other contamination fears) highly increased today. There is a baseline of anxiety present in him that simply has not been so pronounced for a couple weeks. I spread his omegabrite caps out throughout the day and he's just about to have his second one...number 3's coming up asap! Btw, we've been using melatonin for years with success but wow, do the lozenges act quicker than the pills. We use KAL brand, 5mg lozenge. This is actually a mg less than the pills we were taking and work quicker!
  17. Much as I hate the thought of my child being on a benzodiazipine, we would have never survived this long without Clonazepam .5mg. Benzo's are fast acting anti-anxiety medications, not SSRI's. The effects are felt within a half hour or less. My son is only given it when he's really anxious over something. He started taking this during his last exacerbation 3 years ago and I took a lot of heat about it stating that I was giving him something that could be addictive. I'm here to tell you that when his symptoms remit and the anxiety abates, Clonazepam is the last thing he wants. We would be lost without the option of this medication and I thank God daily for the science that created it and the help it brings him in a crisis. Try everything, but don't let anyone beat you up about using this class of medication if needed. Best wishes, Gat's mom
  18. Elizabeth and Wendy, Are there specific probiotics that Donna really likes? Do you spread this massive dose out throughout the day? With or without food? The Mercola probiotics I just received (but don't start until Sunday) say to take with food. The Klaire's product we currently use doesn't say but our DAN! long ago told me they were best on an empty stomach. Thanks a bunch! Gayle
  19. Hi Faith, The Klaire's Therabiotic Detox Support is 50bil per cap and we currently take 2 caps. This is was what our DAN! suggested 4 yrs ago. Wendy: I'm really interested in this. Mine is so sensitive that if we miss his probiotics we see a backlash within a day. We do methylcobalamin B12 lollipops...Revitapops..have you heard of these gems! Methyl B12 is easier absorbed than cyancobalamin B12 which is the standard found in stores. I will say this about my son, the healthier his gut, the better his ability to adapt to change. Thanks for posting! Gayle
  20. Maybe it depends on the age/weight of your child. My ds16 takes about 100 bill per day of Klaire's Therabiotic Detox Support. We're about to rotate to a Mercola probiotic that will bump him to about 120 bill per day. After that, we'll be back to Klaire's again. I think it might be one of those cases where you get what you pay for, too. Our DAN! really pushed the Klaire's product. If we miss even a couple days, his old yeast symptoms return. Gayle
  21. You have stumbled onto a great resource with this group. The compassion and education that is often lacking in the general population is abundant here. It will serve you and your family well. Get a really good doc asap and don't waste much time with those who have to be convinced of the validity of this condition. You can worry about going back and educating the nonbelievers once your child is well. Best wishes, Gat's mom
  22. Hi Kari, My ds16 has had the symptom of eye pain with all 3 of his exacerbations since age 8. No one has ever put their finger on why he has it but after Dr. T tested him for mycoplasma (which he was positive both IgM & IgG) I did more digging into its symptoms and found eye pain to be among them. My son's eye pain always remits with advil. He also has an eye rolling (one side to the other) tic. During his middle school exacerbation (before we ever knew to look for mycoplasma) both the eye tic and the eye pain were far more prevalent. Just something for you to keep in mind. Best wishes, Gayle
  23. Oh DUH... How many times do I have to look at the website before I see the "buy now" link? Apparently abouyt 5 Susan LOL! Listen, nobody can be as brain fried as I am. I say all the time with 23 years of parenting under my belt, I am far too old for this! I opted for Enhansa because of Lee Silsby's reputation in the very fragile autism crowd. I like the fact that they put effort into making it more bioavailable. It came with a dosing schedule and I've even ratcheted that back to start. This is only day 2. No negative backlash so far. This is another tool in our personal war on inflammatory cytokines which I believe are causing much of the day to day nightmare that we are living. Keep in touch on this, Susan. I'd love to hear how you are doing with it. Gayle
  24. Agreed, she really got me rethinking my omega combination for my son!
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