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Thread: CN Central: September Updates

  1. #11
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    Unhappy Fire, Fever, and Constipation

    ((((((HUGS TO ALL)))))) ~

    A bit of excitement around here today. About 4 p.m., we heard helicopters flying over us about every 15 minutes. We walked out to the front yard, and we could clearly see plumes of brown smoke, as well as some flames, seemingly at the end of our street. Actually, this brush fire is about 2 miles from us. The fire has covered at least 15 acres at last report.

    Helicopters were scooping water from the lakes at the Golf Course near this development as well as from the lakes at the Golf Course behind us. I watched one of the copters leaving the golf course, when I was standing on our driveway.

    Two Super Scoopers, manufactured in Quebec, on loan to the LA Fire Dept., were on the scene, with drops of 1600 gallons of water per visit. They were picking up their water from a lake in Pomona.

    At around 6:30 this evening, the news reported that the fire was under control. The copters have stopped flying over us, as it is sunset, so their operations are over.

    Oh ~ it was 100 degrees here today. As it will be tomorrow.

    This fire added to our existing excitement with Jon ~ he hasnít had a good day today.

    He is quite constipated, thanks to increased seizure meds doses. Iíve been giving small amounts of MOM daily, but today, he got the full dose.

    We think his symptoms correlate to his constipation: SATS are lower, heart rate is in the hundreds, and he had a temp, which rose to 101.7 this afternoon. It has come down to 100 with a cool bath and running the a/c. His belly is firm, and heís retaining some fluid. He needs to poop Big Time!

    We were concerned about his lung again, since his mucous was thick and light green today. He is coughing on his own, although we did suction him once this morning. We also gave him a breathing treatment.

    For a week, he was doing so well, and now, only a month after this all started, here we are.

    Jon's nurse will visit Friday morning to change his catheter, draw blood for med levels, and take a UA to ensure that his UTI is cleared up.

    Thinking Jon might need O2 again, I called Apria today, which provides the O2 concentrator and tanks. We want to try to use his trache masks rather than the nasal cannula. It took me an hour, and talking to 3 different people, the last of whom was a Respiratory Therapist, before I was told that one trache mask with adapter and 25 ft of tubing will be sent out to Jon tomorrow. I have no idea whether this will be the right thing.

    Apria specializes in O2, yet no one knew what to send Jon to use a trache mask. Iím incredulous. And, they only have ONE in stock! I imagine that most people, who have a trache, are on a vent. Nonetheless Ö Jon canít be the only patient with a trache, who isnít on a vent! And an RT should know exactly what he needs. I sure hope they send something we can use! Most of all, I pray that we donít need to use it at all.

    Itís been quite a day!

    Please pray for Jonís bowels to move significantly and that he isnít brewing pneumonia again.

    PRAY FOR POOP!

    Thank you all so much for your love, prayers, and support. It helps us tremendously to know that we are not alone.

    I hope I have better news to report soon!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Prayers for all of you Rose. I know the heat has to be a problem. Tyler is miserable in it and we are on the coast, with no air conditioning! Praying for poop, healthy lungs, restful sleep and a cooling trend.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Rose, wow! Reminds me of the fires I smelled after Hurricane Sandy. The fires were due to wiring problems that were brought about by the storm. The smell was utterly terrible. Any time I smell smoke like from a cigarette I think of it. I'm so sorry Jon is constipated. Have you tried massaging his bum by going in little circles with the ball of your hand? The last time I had poop problems, tons of water plus bum massage did the trick! I may have mentioned that before. I kind of know how you feel with trache. Today I went to 2 appointments in a big building and one was cancelled without me being notified and the other appointment was suddenly moved to the other side of the building without me being notified and I'm like "Does anybody have respect for the fact that my stamina is limited?" You would think these people would have the decency to email or call me. What is wrong with people? In your situation with the trache though anything that involves 02 mixed with a trache must be default for "vent" in most people's mind. I always thought people with traches are just hooked up to vents myself. My understanding of ventilators is limited to movies and TV however, aside from your posts. Praying for poop!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Rose that sounds so scary! I've been wondering about the fires and where they were in relation to you. Praying you all stay safe and of course praying for POOP!
    Funnylegs, I'm so sorry for the "runaround" you got. It is rude.
    Mary Grace

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    ((((((HUGS TO ALL)))))) ~

    Thank you for the Poop Prayers! Along with 4 T of MOM, they worked, and Jon produced copious amounts. Almost immediately, his SATS came up, and his temp and heart rate returned to normal. His urine output has been terrific, and his urine is so clear, it's almost sparkling.

    His nurse visited this morning to change his catheter and draw blood levels. She noted how well he looks, and that his vitals matched his clinical presentation. No UA, because we all decided there was no need. Jon was great and cooperative. He also smiled a lot and told his nurse "thank you" and "I love you," which made her day. She didn't want to leave us, especially since she had far too many patients awaiting her. In the hour that she was here, she was called at least 4 times on her cell.

    We received the trache mask and tubing today, and we finally understood the problem. The trache masks we have were from the hospital, and the ones we need are for a home concentrator, which have a special adapter for home use. Problem solved. And thankfully, we don't need it.

    FIRE UPDATE

    About 1:30, we heard helicopters overhead, one after another. I walked out to our front, and there parked in front of our home, was a power company truck. My first thought: Uh OH! When I finally caught the worker's attention as he was sorting equipment in the back of the truck, I asked, "Are we about to have a power outage?" He said no, he was just getting his equipment in order.

    Then a helicopter flew over us, and I asked, "Is there a fire?" He replied, "Looks like it."

    The copters were flying in the same direction as Tuesday's fire, but I couldn't see or smell smoke. Another worker appeared and said that they had been called out to the site of Tuesday's fire to restore electricity to the homes. He also said that he'd just watched a scooper copter take off from the golf course next to us.

    The copters continued flying over our home until 2:30, and every time they fly over, everything in the house rattles. It was unnerving, of course, because the fire is fairly close to us, and if a strong wind picks up embers and comes in our direction, we have an abundance of trees, particularly untrimmed palms, which would go up like torches. Plus all of our yards are dry from the water restrictions. And what if we would have to evacuate?!

    This fire was reported as a small brush fire, contained to a little over a half acre, but they had to get a handle on it fast, because it was another HOT day ~ 97 degrees and rising.

    The fire on Tuesday was intentionally set, according to fire investigators. So, now, they're looking for an arsonist. I'm sure that you can imagine how infuriated we are, and what we'd like to say to the arsonist, when he or she is found.

    ((((((Tamie)))))) ~

    I know most folks who live on the coast don't have a/c, because you don't need it. Or didn't, until this spate of heat waves started for us. Maybe a room air conditioner might help you on these unusually hot days? Or invest in a Dyson fan. They are ridiculously expensive, but they work wonderfully. Deduct it from your taxes as a medical expense. Yes, I'm serious.

    How is Tyler? I've been keeping the prayers going that he doesn't have a UTI and that his seizures are abating. Have you tried another MMJ alternative? I know you said Charlotte's Web didn't work for him. How I pray for his seizures to stop ~ I'm so sorry for Tyler and for you and your husband. I know how it is when seizures are unrelenting.

    How did your husband's sleep study go? Any help there for him to get more sleep? Have you thought about sleeping in shifts, like Jim and I do? You might find that you can both get a little more quality sleep (if not quantity) if you try the shift idea.

    And how are you, Tamie? How is your health? We need an update from you, Sister Friend!

    ((((((funnylegs4)))))) ~

    I'm so sorry that you were given the run around with your appointments. How frustrating and exhausting! It's so difficult anymore, it seems, for people to do their jobs ~ like notify you of changes in your appointment time or locale.

    "What is wrong with people?" you asked. "I don't know!" is my reply.

    I'm an old(er) person, so I remember when service was common, and people worked diligently to be adept at their professions. To me, it feels like people have become inert, lazy, or just getting by with the minimum requirement of effort to keep their jobs. Where once good service was expected, I'm now surprised when people actually do their job and then some. If you put me, or any one of my senior friends, into any of these positions, I guarantee you that we would run circles around those who currently hold them. I guarantee you that if I was running the office or appointment desk for your appointments, you would have been called and emailed notifying you of the changes.

    I hope that things are improving in your relationship with your friend, and that things have settled down with the other individual, who has caused a ruckus. Be sure that you don't own any of that individual's negative behavior. Focus on your positive, affirming relationships, and let that one slide for awhile, if possible.

    Thank you for your suggestion of massaging Jon's bum. Since Jon has a colostomy, his bowels don't move in that direction, if you get my drift. So a massage on his bum wouldn't correlate to his exit strategy, which is on his belly. We do massage his belly, and we do the lymphedema massage, both of which are helpful. In this case, he just needed a lot more MOM to break the levee.

    ((((((Mary Grace)))))) ~

    Thank you for your Poop Prayers! Praying for Kathleen and you, as surgery approaches.

    TO ALL ~

    Here are your Smoothies ~



    Put your feet up, feel the ocean breeze, and relax ...

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((((HUGS TO ALL)))))) ~

    So, we had a couple of days of bowel movements, which have now stopped. And Jon is again beginning to retain fluid in his torso. His temp is 99.2. His SATS are iffy ~ and we've been removing his plug to cough out his mucous, successfully bringing up his SATS. No suctioning. No O2, although we do have the proper supplies for using the trache mask now.

    We don't have his lab results yet.

    I called the doctor's office yesterday to request a new prescription for Dilantin, since we increased his dose, and we're going to run out before we can refill the current script (we can have it 2 days prior to the 30 day cutoff per Medi-Cal). The gal at the desk, who took my message, either mis-conveyed it or it was misconstrued by the doctor's assistant, who called to tell me that Jon had refills on his Dilantin. So I had to re-explain that Jon needs a new script to reflect his current dosage, so that we don't run out every month before we can refill! We finally got a new script today.

    UPDATE ON FIRE ~

    A 56 year old homeless man was arrested for setting the fire near our neighborhood. He and his wife were living in a homeless encampment on the preserve in a tent. She said that it was her fault, since she lit the fire, boiled the water and started the BBQ, as he was disabled by a medical procedure he'd had the previous day. How a homeless person in our community gets medical care is beyond me, since they are shunned and discarded as worthless by most in authority and many residents.

    We have a large homeless population in our area, because we have a giant bus depot and train station here. Proposals for homeless shelters and housing have been rejected by our citizens. These folks are forced to live in their cars, in encampments on the banks of freeways and underpasses (Jim saw one on his way home from the grocery the other day), in parks, on the street ...

    This couple didn't intentionally set this fire. They were trying to survive, and they were in the middle of a dry brush preserve when it was 101 degrees. He is now in jail. And she has no idea what to do next, I'm sure.

    Instead of doing something to help this couple, he will be punished with possibly 3 years in jail, and she will flounder trying to find a way to make it through each day.

    There is abundant wealth in our county. A disgusting amount of wealth. The homes threatened by this fire were very expensive, which is why all of the big scoopers were brought out to quell the fire. Yet, we can't find a way to help those in the greatest need. We allow them to suffer in the raging heat, starve, scrap, and lose their dignity just to live through another humiliating day.

    The dynamics of Life are complicated. Here am I worrying about having to evacuate Jon, if a fire encroaches upon our home. And this couple, responsible for the fire, has no home.

    It's all about perspective.

    And the search for solutions ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #17
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    Hi Rose. Thanks for thinking of us with all you have going on. Tyler has been pretty miserable during this heat wave. Seizures are relentless. We keep him in front of three fans in the hopes of keeping him cool (completely stripped down). Has a nasty heat rash on his flanks that isn't helping any. Looking forward to cooler days. He does have another UTI, only this one was so drug resistant that they couldn't put him on antibiotics. So far, so good. He hasn't become super symptomatic so we just wait and watch, hope and pray.

    My husband has mild sleep apnea and is waiting until the 28th to get a Cpap machine (why they are making him wait so long is a mystery) Good old Kaiser. In the meantime, he is getting around 3 hours of sleep nightly. I sleep with Tyler cause I am able to get at least 4 1/2 to 5 broken hours of sleep and handle little sleep better than Jerry. Hoping the Cpap will make things easier. My health is finally doing much better. It has taken 4 years to get to this point and I praise the Lord for every morning I wake up. See the cardiologist in November for my yearly checkup. We'll see what he has to say.

    Charlottes Web was a total wash for Tyler. Every increase in dose increased his already constant seizures. Also tried Jayden's Juice which is higher in THC with the same result. Tried a few other MMJ products, but higher THC just made things worse. Finally decided to stop torturing Tyler and just let him be. He has seized his entire life and nothing is going to stop a brain that has patterned itself to seize. We have just accepted that this is our life and make the most of it. We are slowing weaning down his Dilantin (as suggested by his neuro) and not seeing any drastic change on lower doses (he has been getting 300mg a day for 20 years). We are reducing the dose by 25mg every two months. He is such a complicated young man.

    Hope things get much better for Jon in the days to come. Take care of yourselves.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Tamie)))))) ~

    Not a day goes by that I don't think about and pray for all of you. I always want to know how you are. And I can relate so well to the daily crisis of Tyler's non-stop seizures and infections. Michael didn't have UTIs. He had pneumonia frequently, as a result of aspirating from seizures.

    I'm so sorry that Tyler has another UTI, which is untreatable with antibiotics. I feel your concern there too, as we are now facing something similar with Jon, since Bactrim caused him to have seizures and tanked his meds. Even Jon's nurse asked us what we would do if Jon got another UTI, since the options are limited. We don't know.

    Jon uses a silver tipped catheter, which is, of course, indwelling. The silver combats a common bacteria with catheter users, pseudomonas. If silver tipped intermittent catheters are available, then you could ask Tyler's doctor for a script for that specific catheter. It can't hurt, and it might help.

    Might it help to empty his bladder more frequently, or add another catheterization to his schedule? I have no idea ~ just tossing it out there.

    Do you irrigate his bladder? Inject sterile saline with a needle-less syringe into a catheter once it's inserted? I'm not sure whether that is possible with intermittent catheters. We irrigate Jon periodically, when he has a lot of gunk, or when his pee slows down too much, in case there is an obstruction. But I don't know whether that would apply or even be helpful for Tyler. Just another idea ...

    I know that cranberries balance the pH in the bladder, which reduces bacteria and UTIs. Pineapple juice is a natural diuretic, which helps to drain the bladder and reduce inflammation. There are probably other foods, herbs or spices that are beneficial to bladder health, which you could add to Tyler's blenderized diet. It might be worth trying.

    I'm so sorry that Tyler didn't respond well to any of the MMJ alternatives. You have certainly done and tried everything possible to control Tyler's seizures. And you are so right about the brain being programmed to seize. Itís the Kindling Effect, where seizures beget seizures. One neuro offered to me an analogy of a needle stuck on a record. Once the needle wears out the groove itís on, it jumps to the next groove, and then the next.

    If Tyler isnít showing any changes with the reduction of Dilantin, then thatís a clue that it isnít working for him. Itís a gnarly drug, interacts with everything, has short and long term adverse side effects, so if it isnít helping him, he would probably feel better not taking it. Is Tyler taking any other AEDs?

    Why does Jerry have to wait so long for a CPap? Is there a shortage of them?! Heís diagnosed with sleep apnea, and he clearly needs CPap, so why not just set him up with it now? Probably some protracted authorization process. I pray that the CPap really benefits Jerry, and that once he is able to sleep properly, that he will feel more rested, alert, and healthier.

    Iím glad that Jerry is willing to use a CPap. Jim has sleep apnea, but he will not even think about using a CPap. Then, he wonders why heís always tired, falling asleep every time he sits down and relaxes, but canít sleep during his shift. He knows what he should do, so I only nag him periodically, when heís just super dragged out. He says, ďI know.Ē I might as well talk to the fence.

    How grateful I am to hear that you are healthy and feeling stronger! May this continue for you!

    I hope that you will drop by CN more often to keep us updated.

    Healing prayers always on their way ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose, I hope to see a good update on Jon. What a sad story about the homeless couple. We have so many things to fix in our country. We never seem to find the reason and fix that, just put a "band aid" on things.
    Tamie, I'm so sorry for the complications that Tyler is still experiencing. Praying as always for good a turnaround and for goo health.
    Mary Grace

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    Thumbs up It's All Good!

    ((((((HUGS TO ALL)))))) ~

    ((((((Mary Grace)))))) ~ I didn't realize that I hadn't updated on Jon! So here ya go ~

    I gave him 4 T of M.O.M., and he produced through his colostomy a fairly good amount. Everything returned to normal for him, SATS, heart rate, temperature. He's been in a great mood, chipper and chatty. Sleeping well. No seizures! We just keep giving abundant thanks and pray it continues.

    Unfortunately, he is not continuing to poop, so it looks like I'll have to give him regular doses of MOM to keep him going. I'm not keen on doing that, as I don't want him to become dependent upon a laxative, but constipation is a worse issue for him in every regard. I think his constipation stems from the increase in his seizure meds, which we aren't planning to reduce just yet.

    His blood levels are Dilantin: 14.3 (his therapeutic range is 11-13) Depakote: 36.3 (his therapeutic range is 32-36) So, he has definitely improved on his levels, and his seizures are being controlled, so unless he starts exhibiting symptoms of over-dosage (lethargy, weakness, sleeping too much), we will stick with his current doses. We'll likely have his blood levels drawn again next month, when he has his catheter change.

    He does have a rash on assorted portions of his body (his limbs actually), which he's had for some time, and which are increasing and not fading. We apply Body Shop Hemp creme, which we've found works better than anything else on rashes. Relieves itching and promotes healing. Jim had eczema many years ago on his hands, and cortisone ointment didn't work. So we tried the Hemp creme, and it worked. Our neighbor, a diabetic, had a rash and itchy skin from renal failure. Nothing worked to soothe the itching, pain, and rash, until we gave him a tube of the Hemp creme. Unfortunately, it isn't conquering Jon's rash.

    Jon's nurse doesn't know what the rash is, but to me it looks like psoriasis, which I have. When I was 18, my entire body, head to toe, was covered in psoriasis rashes. I took medication, used special soaps/shampoos, and had UV light treatments. Nothing cured it. I was in a car accident, and after that trauma, my rash suddenly disappeared. The doctor said at that time that stress brought it on, and stress took it away. Of course, that was the covered wagon days. I'm nervous about standard treatments for psoriasis for Jon. So, we'll just have to keep an eye on him to make sure it doesn't spread.

    Last night, I gave Jon the spa treatment to get him all spiffy for his visit with the Mother-Daughter Toenail Gals, who visited today. Jon was excited to see them, because they are both very pretty, blond, and love him dearly. He talked about them non-stop, until they arrived, and then he became "all shy." I finally figured out that this is his way of flirting. If he's shy, the pretty lady will try to coax him to smile and speak to her, and she will hold his hand and tell him how handsome he is and how much she loves seeing him. Dude is a Player! And it works. Every time.

    Our family friend and Jon's best bud stopped by this afternoon for a visit, and to lift the 3 gallon bottle of water onto our cooler, since we can't do that anymore. Jon was chuffed! Girlfriends and best bud visits in one day!

    So, for now, Jon is healthy, happy, and knows that he is very much loved. And ... the Dodgers are winning ... so it's all good!

    Now, Mary Grace, please remind me when Kathleen's surgery is scheduled. I want to make sure that I focus my prayers that day on her, you and your husband. Of course, you're in my prayers daily, but that day, I'll be sure to step up my prayers and send energy your way.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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