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GatsMom

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Everything posted by GatsMom

  1. Very true. We've actually come to learn that the panic attack is a direct response to a thought that enters his mind that scares him. Those thoughts sometimes come through an obvious trigger (a friend telling him that she's been sick and throwing up) and sometimes a not-so-obvious trigger. He is so easily overloaded right now and his ability to filter incoming information is out of commission. The hellish middle school exacerbation also carried 12 hour sleep cycles. As soon as he was well, he went right back to normal sleep patterns. Like you, I believe he is healing at his best at that point, unencumbered by intrusive thoughts. We all heal more effectively when relaxed. Thanks, Vickie!
  2. Wow! I'd call that a turning point! Good for you and your family! Wishing you all the luck, strength and faith needed and hoping this leads to giant step on your kiddos path to recovery. Safe travels to you.
  3. Thanks Vickie, I have adopted Buster's rating system though I still have a running journal by day that denote meds/meals/times/meltdowns. Kind of a day at a glance. He's out of school presently, there is no possible way that could happen. He pushed himself to go for weeks and everyday would end in failure (and he was keeping count of those failures which wasn't helping). Now we're home, he sleeps 12 hours at a time (very out of character) and progresses through days that are very stress contained. Once or twice a day, with little or no warning, there will be an episode of anxiety that normally spins to panic but sometimes he can contain to nervousness. The simplest things, like errands have to be done in the span of about an hour (if that). My musclebound 16 yr old boy is as fragile, in every sense of the word, as can be. Thank you for your great insights, Vickie!
  4. I would absolutely consider a steroid burst because he responds well to Advil all provided his lyme tests come back negative. We just had a bundle of labs done a few days ago. I would sever a limb to get to 90% improvement right now. Thanks so much for the support, I can't tell you how much easier it makes the "wait and see" period. Everytime I read that a child improves on abx I feel relief in my own gut. This kid has recovered himself through the last two exacerbations, I just can't help but think that with some pharmacological intervention, he could be a recovery success story. Thanks again, dcmom, so much!
  5. ds16 is on day 6 of augmentin 2000mg XR and azith 750mg. He's tolerating the abx along with other supps and probiotics well. The first two days I saw some improvement and lessening in severity of symptoms but I've seen no more improvement since then. In my desperate quest to maintain some hope, are my expectations for a big turn around in just a few days unrealistic. This is our 3rd major exacerbation in 7 years but the first one that's being treated correctly. Subsequent episodes took about a year to resolve on their own. His separation anxiety is at an all time high and now he doesn't even shut the door when in the bathroom (180 degrees his normal). I have't left the house in days, haven't worked in 1.5 wks. Like all of us, I spend every spare moment praying for a miracle for him (and I) but in doing so am I simply overlooking the fact that he's been sick for many weeks and unwinding takes time? Sorry for the needy plea but I really need some legitimate, realistic expectations to pin my most intelligent hopes to while I continue to pray for a miracle for us all. Many thanks, Gat's mom
  6. Your history is a recurring theme but you've found a great group and there is strength is numbers. Hanging around (virtually) with seasoned, bright parents and aligning with one of the big gun docs is the best thing you can do for your son...and I'll bet you end up tackling that reactive arthritis once and for all in the same step.
  7. Is Azith the best treatment for mycoplasma? Given the way your PANDAS son could react to mycoplasma, won't your ped see fit to treat him with a prophylactic abx?
  8. Hang in there and know that answers are making their way to you. I'm from E. TN and have spent the past 4 years of my life trying to explain PANDAS to the local medical community. Now we're working with Dr. T. There is a night and day difference when you are aligned with a physician who truly understands the underlying mechanisms that are at play in our kids. I cannot recommend highly enough seeking help from one of the experts. Find the success stories, print them and read them multiple times each day until the belief that recovery happens is firm in you. Vickie: I'm looking for the inositol schedule we used for my son during the last exacerbation. At the time, it didn't make a noticeable dent in anything for him BUT we were not treating with abx at that time. I absolutely would not rule it out as a valuable adjunct in combination with any other therapy. Gat's mom
  9. We're on day 4 of the Saving Sammy dose. I couldn't ask to have read anything better than your post! Congratulations to you and your family and thanks for updating, and thereby encouraging, the group! Gat's mom.
  10. Perhaps sawtoothed will be our word for today. After another good morning, took him for bloodwork which over the years has never been an issue for him but recently has become one. No go! It was horrible but I suspect it was because he was so far from his comfort zone and with the last 2 days of healing notwithstanding, he's been a very sick kid for a couple weeks. After a failed attempt at getting him in the chair, he was furious at himself & life (again). However, once we got back home he recovered quicker than I've ever seen from a panic to that degree. It was a really horrific afternoon BUT there is clearly a change in how he's rebounding after a bout of anxiety (mild or, as in today, severe). I credit 2.5 days of Augmentin and we'll soldier on and try to put this afternoon behind us. Thanks SO much everyone for your input!
  11. Thank you! I was hoping I wasn't just looking at everything through rose colored glasses. We are only "on it" this quickly because of this group and leads to docs like Dr. T. The previous episodes went improperly treated even when they were properly diagnosed...ugh! Those days are gone. We're smarter and stronger now. You really nailed it with the "turned into stuff that could be dealt with" truth. Thanks so much for taking a minute to respond!
  12. ds16 has had 2 full days of Augmentin 1000 mg XR twice daily (he's also on day 12 of azith). He's still having a couple episodes of anxiety when one of his triggers is present but it has not spun into a full panic attack. This is unusual for him. Typically once the wheels get set into motion, he's unable to wrestle the anxiety down until we go through the full spectrum including the panic attack. There appears to be a lessening in the severity of the anxiety. I'm hopeful that this is indicative of augmentin doing its job. Can an abx switch (to augmentin) produce a result that quickly in a child who was 5 wks into an exacerbation before starting treatment? Many thanks, Gat's mom.
  13. It is very comforting though I hate the thought of another family going through this. I've been through it twice before without this board. I'm so thankful, even in the worst moments, for this group. It makes so much difference in my day to day life. Thank you! I am sorry I don't have any ideas of what is happening with the panic attacks, but I wanted to let you know that my daughter is 19 with high anxiety and one of her biggest fears also that presented when this all began was the fear of throwing up. She has a lot of separationg anxiety. She has been treated wtih augmentin for the past 28 days and is feeling better but I will say that she did experience some panic during that time where she became somewhat dizzy and then just didn't feel well and the panic set in, it happend about 3 times while she was being treated with the augmentin and were short lived episodes. We are seeing how she is feeling off the augmentin now, she feels better but it is hard to tell stomach wise since the augmentin seemed to bother her stomach some, she wants to see how she feels without taking anything for a bit and see where her level of anixety is at this point. sorry I didn't have anything helpful for you here but thought maybe knowing about the throwing up and anxiety at an older age might be a bit comforting knowing you are not alone. I cried too, lots of time when I got out of the house on my own, it's a release.
  14. Mine's 16 and can really put away some food. That's just a teen boy in many ways. I love to see a healthy appetite on him since when he's really struggling, he'll limit the amount of food he allows himself to eat. Since boys at that age tend to pack away a lot of food, I'm kind of careful about what's in the house. Soda only comes in 2 liter bottles and even then its only on a night when we have pizza. I always have iced tea and 2 types of juice in the house. Water at all meals. No snack cakes but I do make cupcakes (for portion control)and cookies occasionally. I'm more apt to make an apple crisp using fresh apples and oatmeal or rice krispie treats to cut wheat. I put Yoplait Whips yogurt cups in the freezer for a cold snack. Always have grapes and will move heaven and earth to get my hands on fresh blueberries regardless of the season (and often price). I've found that if I slowly narrow his options, he manages to find a string of suitable substitutes. Gat's mom.
  15. Thank you! I will try this today with XR dosing. I have now come to believe that what he had yesterday might have been some legitimate stomach pain due to a stomach bug that is going around and half our county has presently. Last night at 11:30 he started complaining of stomach pain again. I jumped quickly to Klonopin and Phenergen to stave off a panic attack. He was nervous but it never evolved to something horrible. I sat with him in his bed watching tv til 1a afterwhich he went to sleep. He saw his little girlfriend on Tuesday and sure enough, Wednesday she came down with it. He's been fretting about that fact all week and I think we might have been seeing a little of that bug here yesterday. Regardless, I have a new plan for XR dosing. I have been waking him up early in the morning to get probiotics into him on an empty stomach. He rolls right over and goes back to sleep. Tonight I'll be getting up in the middle of the night for a probiotics dose, then again early morning. I know I have a kid with a propensity toward yeast so I really need high dose probiotics that aren't interfering with our long awaited abx dosing. I'll put the advil in the dosing right after the meal. Thank again, so much for chiming in! Gat's mom.
  16. We are all but gluten free around here now, an easier transition than I thought it would be happily. He doesn't do a lot of dairy by choice, yogurt is what he likes and I'm happy for the probiotic content. He's boycotted cereal with milk in the morning again and I guess that's probably for the best right now. I know when he's not in an episode, no foods bring him down. He eats like a horse and has no negative backlash to anything. Thanks for your input!
  17. He had the abx today 30 mins after a good hot lunch. Tonight's will be after some ice cream, just to make sure. Yeah, it was a little tough to hear out of him today, "You're not doing anything to help me!!" ugh. I do know, though, that he is sick. There's never been a question in my mind about that. No typical teen behavior can hold a candle to a PANDAS episode!
  18. There were no allergens in more abundance than normal today, or any of the last three days. I have noticed, though, that he is more sensitive to his usual allergens when he's in an exacerbation. Everything is harder for him when he's in a backslide! Today's event came while he was trying to do some math homework. Should have been material he could breeze through but he had been at it for 45 mins and completed 5 problems. Maybe that's what got him frustrated. I do KNOW that frustration, regardless of where it comes from in him, is a direct line to panic. Tomorrow, in an attempt to break the 2:45 curse. We'll be doing a dose of magnesium in some grape juice after lunch and aiming for a happy, content place. We'll see how that goes. He's taking an epsom salt soak tonight for sure then later when the water heater recovers itself, it's my turn! I appreciate your help!
  19. Yes! I've just always attributed that to a little post adrenaline/cortisol release, almost like an IBS. He, otherwise, has very healthy bowel habits. BM's do not normally produce anxiety in him. Is that always an issue for your daughter? How old is she? Thanks! My daughter is 15. No, this is not always an issue for her- just that the post ragey BMs are extraordinarily large. It never occurred to me that the adrenaline/cortisol could be causing the BM. I always thought it was the physical discomfort of intestinal pressure triggering the episode...hmmm, chicken or the egg? No kidding, if I say "chicken or the egg" once per day, I say it a dozen times regarding his behaviors and what is either the cause or the effect! I wouldn't wish this on a soul, but it is so comforting to remember that we are the not the only ones.
  20. Yes! I've just always attributed that to a little post adrenaline/cortisol release, almost like an IBS. He, otherwise, has very healthy bowel habits. BM's do not normally produce anxiety in him. Is that always an issue for your daughter? How old is she? Thanks!
  21. We give the antibiotics together and as long as my dd eats food with them, she is fine. Yes, separation issues are huge here, not sure if they are the catalyst to the anxiety though, rather one symptom of many. No advice really, other than to remind yourself that he is NOT DOING THIS TO YOU. He is sick and he can't help it. I cried all fall and it didn't help but I couldn't help it. Try giving him some Advil and see if it helps. It may reduce inflammation in the basal ganglie and reduce his symptoms. I give it at the same time as the antibiotics with no problem. (with food) It helps my dd a LOT. I give the probiotics mid day usually. In between the two doses of antibiotics. Sometiems I give them as early as two hours after antibiotics and so far we've mostly kept the yeast at bay. Hope that help. Hugs to you. Sorry you are going through this. Glad you found this forum though. Angela I'm so thankful for this forum. I assess blessings every night before sleep, this forum has been at the top of the list for weeks. He's been doing well with Advil independent of abx. I will see if I can get advil in with abx. I always make sure there is food to minimize stomach issues. I hit his first dose of probiotics while he's asleep, wake him up enough to take it and he rolls over and goes back to sleep. I'll add it again mid day. He is a yeasty kid so I'm pushing kefir and yogurt too. We're also pretty darn close to gluten free around here. Vickie, AFTER the meltdown, he's fine, nearly perfect. Today he was a little tired because this one went of forever. He goes from telling me he's ready to die to telling me a movie he'd like to see...all within the span of an hour or two. He recovers, then I sit on the edge of the tub and tall apart. If he sees me cry when he's in a rage it only makes him more angry. I'm with you, Angela, it does no good but I just cannot hold it back. Thanks so much for your response, ladies! Gayle
  22. No constants. Yesterday we were in the car. Today he was working on some math. We're still settling into a routine with meds now that he's not in school. The last meds before todays events were 1.75 hrs before and it was the Azith AND Augmentin together. My pharmacist said he could take them both together but I wondered if that wasn't too much to hit his gut all at once. Yesterday's we were out running week overdue errands and I thought I just kept him away from home too long. The day before that, I was trying to leave and head to my office for just 2 hrs so I assumed it was acute separation anxiety. May all those are accurate and today it was the meds. Any idea what the space between abx and probiotics needs to be? I will say I'm more than a little apprehensive about 2:45p tomorrow and I'm going to split the 3 dosings of abx just to be sure. Thanks much!
  23. My ds16 is 5 wks into this episode, his third major one since age 8. first, 8 days of azith 500, 2 days ago that was up'd to 750mg. Began Augmentin 1000mg XR today at 1p. For the past 3 days at 2:45p (umm, exactly) he has had a huge panic attack, today's lasted nearly 2 hrs despite Klonopin .5mg which normally helps him immensely. During the panic he has stiff jerky movements, rage, and utter panic because his stomach hurts and his biggest fear in life is throwing up. He hasn't been engaged in the same activity for any of the past 3 days at 2:45 and is actually quite unaware of the time of day, so I'm completely confused as to what might be happening, seems an awfully big coincidence. This is our first big abx trial and I've never prayed harder or more diligently for anything in my life. A huge profile of bloodwork is being drawn on Monday including the Cunningham tests. Does anyone else with an older kid have separation anxiety and contamination fears as their catalyst to overwhelmiing anxiety? If so, can you offer any advice or guidance? I haven't been to work in a week, I can't keep this up for long financially and I can't seem to stop crying which isn't helping anything. Many thanks, Gat's mom.
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