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  1. #11
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Just a quick update, had our doctor appointment today. All went well, Brian came along which I was glad since they had more things to ask him with regards to Marfan's and stuff. Pretty much just talking and giving history. The doctor did examine Brandon for connective tissue signs...many of them were negative so that was great! We are going to do the blood draw (genetic test) to rule out for certain. Of course, we first need to acquire prior authorization from the insurance. I am not too worried, they approved my BRCA tests last year. We are almost to the max out of pocket family deductible so it will all be 100% covered if approved! That is also why we are choosing to do it now and not wait. We did have the option to wait until after the repeat echo in 2 years. I like having all the info now though, just the way I am! :) Especially since it is only a blood draw, not some kind of painful or big invasive test.

    Next on my plate, getting an IUD put in on Monday (TMI?)...that goes back to my period issues. I mulled it over all year and decided to give it a try....hope that goes as easy as our appointment today! I will love not having a period. The progesterone cream has been working well for me but it doesn't help with everything. It sure has been a doctor filled fall for me...just glad not for urgent or emergency things!

    Glad to read everyone's updates here and wishing Donna & her family a Happy Thanksgiving!! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  3. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile Thank You All For Checking In!

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

    I'm so sorry to hear that you have family and friend issues, and I pray that all is soon resolved. Here's my advice to you, my friend ~ make your own well being a priority. Don't neglect yourself. You need strength and energy to do all that you want and need to do. That means taking care of you.

    I'm sorry that I haven't had a chance to visit your link for your film or respond to your blog. But I am excited about this film, and I'm looking forward to it. I promise I will catch up with your efforts soon. You have talent and insight. Stay the course, while you also take good care of yourself.

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

    Hey! Fellow Denzel fan! You probably aren't old enough to remember Denzel from his TV days on St. Elsewhere. And because I am a fan of his work (have you seen Unstoppable?) when I hear him say, "Make it Rain," I just grin. I know it's not the kind of film that I want to watch or that Jon should watch, but that phrase stuck with us. And if it makes Kathleen chuckle, then definitely use it with her!

    Kathleen's descriptions of feeling "itchy and burning" make me think of nerve endings firing off signals. And I wonder whether it is all related to her neck. The spinal cord? Just thinking out loud, with no experience or real medical background to support my postulation. Hope the orthopedic doc has some insight. Keep us posted.

    ((((((Donna)))))) ~

    I think I gained 10 lbs just reading your dinner menu! Natalie has put in her requests for her fav foods, eh? I'll bet your home smells delicious! Looking forward to hearing about your Thanksgiving celebration!

    ((((((Lisa)))))) ~

    Great news that clinical examination of Brandon resulted in negative findings. Hope the same is true of the blood results. Absolutely strike while the iron is hot, and get this stuff covered by insurance. In your shoes, I would want the information now too.

    An IUD stops your periods? I didn't realize or remember that ... but then, I had an IUD in the early 1970s. So my experience is really antiquated. I ended up having a tubal ligation. It was very clear to me that I wasn't going to be having any more children, and I was not keen on any of the potential birth control methods. But that choice then wasn't wonderful either. I had severe bleeding for years, with lots of D & C's, and ovarian cysts, which were excruciatingly painful when they burst. Of course, those were medieval times! And while menopause was no picnic, I sure didn't miss any of the past.

    Prayers that the IUD placement goes smoothly and works effectively for you.

    **** U P D A T E ****

    Jon's nurse visited yesterday to change Jon's catheter. All went well. As always, she irrigated Jon's catheter first, and he returned 400 cc of urine. She was shocked! I told her, "This is what he does!" She remains baffled by this change in Jon's urination. Of course, she was pleased to see the improvement in Jon's feet, legs and torso, and Jon was more alert and responsive to her than he has been in recent months. Vitals were top notch.

    Yesterday, Jon's total output was nearly 2,500 cc!! Just amazing. I think the therapy is working now.

    I will be sending a text to PT to request a visit next week. Jim and I feel that he needs to assess Jon and guide us into the next phase. It's been a month, and it makes sense to touch base now.

    The following week, Jon's stand by nurse will visit to change Jon's trache and re-certify him to continue with the nursing agency for another 2 months. Jon's primary nurse is taking a much needed and well deserved vacation. And Jon has a crush on his stand by nurse (he looks at her like she's a goddess ~ she took his blood one time, and he never flinched or moved ~ his eyes were just glued on her ~ and she is about his age). We love her like family too, so it will be great to see her again. She also taught our primary nurse how to change Jon's trache, so she is an expert there. Really, she could probably do surgery on Jon without an anesthetic, and he wouldn't feel a thing. He is gobsmacked by her.

    Also, Jon's stand by nurse specializes in wound care (primary nurse specializes in IV). She can have a look at Jon's coccyx, comparing it to how it looked last year. She might change our current protocol of Optifoam.

    Thanks for checking in! Now, where are you, Tamie? Need an update on you and Tyler!

    Now, please, everyone join me for a tropical smoothie, with an umbrella in it, dates, figs, macadamia nuts, and other luscious snacks, warm sunshine, cool ocean breezes, cabana boys to fan you with large palm leaves, and the peaceful sound of waves kissing the shore ~





    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.

  4. #13
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    That is great to hear the therapy is working so well for Jon! Hope the PT can give additional tips to make things even better! I am having the Mirena IUD put in....it has hormones (progesterone, so I already know that that works good for me) and that is what reduces the periods. The older style copper ones don't stop them from what I have read. The Mirena is plastic. I figure if it doesn't work well for me, it is easy enough to have removed. I posted on a fb group for peri-menopause ladies and got tons of horror stories, but also many good stories so we'll see! I sure hope I have a good story!

    I did speak with the wheelchair vendor and they are waiting for a quote from the manufacturer, then it will get reviewed by insurance. So I am still guessing that maybe by Christmastime she will have a new chair. At least it was nice to hear things are in motion, not like before where it was just not even in the computer system.

    I really would sure love a tropical smoothie right now! It is drizzling rain and COLD here today. Brian put the chimney pipe on (we cap and remove it for the summer) for the pellet stove. I wouldn't let him start it up last night though, I said it was too early yet! I think I am going to reconsider that though! I am refusing to turn the heat on still....I always try not to do that until November. I am enjoying the beautiful fall colors everywhere...it is fun to walk the dog and explore all the different streets that I never go down otherwise in my neighborhood. Here is a question....in California (or other warm all the time places), do the trees turn colors in the fall and lose leaves or do they just stay green all year round? My kids were asking me and I was like, y'know, I have no idea! :) I have only ever lived here in Wisconsin!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  6. #14
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    Sorry to be absent, but my computer crashed twice in the past six weeks. Lost everything the first time and had problems downloading the backup the second time (which, by the way, does not include sites like this one). Just got my computer back this morning and trying to reinstall everything once again. What a pain.

    Tyler is back on antibiotics on another UTI. This is getting old. Just got off antibiotics on the 25th for the last one. He did not pee on his own on the 26th. We had to cath him all day long and got any wheres from 400cc to 800cc's every time. Also could not have a BM on his own. Took two days of enema's to clear that out. Keep in mind, we were at our cabin and didn't have any extra cathing supplies with us and none could be found in Big Bear Valley. Luckily our daughter came up on Friday and was able to at least bring extra caths. My husband went to the local fire department and asked for any lubricant packets they might have. Good thing they had a few. I was able to buy a bottle of Betadine at the pharmacy, but that's all they had. Spent the weekend watching Tyler gag, retch and seize. I was really glad to come home. Had to cancel Monday's trip to Los Angeles and the Keto Diet until the 13th. I'm ready for a very quiet vacation.
    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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  8. #15
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    ((((((Lisa)))))) ~

    Our neighborhood and city have an abundance of trees of many varieties, including deciduous ones. As you can see from the photos, right now, the sycamore on the green belt behind us is dropping golden leaves into our backyard. Our particular community is noted for its variety of trees ~ pine, cedar, cypress, oleander, many types of palms and other tropical trees, olive, eucalyptus, and some I canít identify.

    Residents also have trees, and many residents have fruit trees ~ lemons, oranges, persimmons, pomegranates (now dropping off the trees, because it is their season). The fruit feeds our hearty population of squirrels. We live on a hillside, so the main entrance to our community is a fairly steep, winding road, lined with beautiful trees, and they are turning red, yellow, and orange now.

    Although it has been 100 degrees here for 3 days, the trees tell us that it is Autumn. It isnít at all uncommon for us to have a heat wave in October, often referred to as an Indian Summer. It is just hotter now than it was in my youth ~ thanks, Global Warming.

    When we lived in the midwest, I was introduced to seasons changing. Our first winter there was the coldest on record. That was a shock to our warm weather systems! I grew to enjoy the seasons changing, but I do not miss it. I cannot fathom caring for my boys in the hard winters.

    I will pray that your IUD works perfectly for you, and that your story is a good one. I will be thinking of and praying for you on Monday.

    With our drought, and of course the extreme heat, weíre advised not to use our fireplaces. So, I say, go for it with the pellet stove and get toasty! Why wait?!

    I will pray that Caitlin has a new chair by Christmas. But all of this rigamarole about quotes and authorization ~ well, theyíve had plenty of time to accomplish those things. We arenít talking about a luxury item. Weíre talking about a very necessary, vitally important piece of medical equipment, which serves as transportation for Caitlin.

    What you are going through is reminiscent of all of my years of obtaining chairs for my boys, beginning in the late 1970s. FORTY YEARS later, you are jumping through the same hoops, begging, and pressing to get your daughterís wheelchair. Itís just wrong! Why is this nonsense still happening?! You shouldnít have to be hassling with these people, and Caitlin should be in a chair, which provides her with proper support and seating. It just frustrates me that nothing has improved, or even changed, in 40 years for parents attempting to get new w/cís for their children. I wanted that to be corrected by now, so that you and Caitlin wouldnít be going through this annoyance.

    Your smoothie awaits you, mídear. Join us on the






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

    Computer problems! Acckkk! Glad you found your way back to us, before tossing the computer out of the window.

    Oh no, my dear friend ~ Iím so very sorry that Tyler has another UTI and is seizing. What a challenge for you all to be in the mountains and low on supplies. Is Tyler taking a different antibiotic? I remember vaguely that Jon seized, while he was taking Bactrim several years ago. It interacted with his Dilantin. Just wondering out loud whether the antibiotic is interacting with any of Tylerís meds.

    I just had a thought ~ I doubt that Tyler has lymphedema, but I wonder whether Tyler might benefit from the kind of therapy we are doing with Jon. Jonís bowel movements are regular via his colostomy, and his urination, although not continuous, is a very good amount every 24 hours.

    The next question is: How do you find a PT, who can assist you with this? Ask for a referral from one of Tylerís doctors?

    I never dreamed that a PT would teach us how to reduce Jonís massive fluid overload, but he did. Jonís SATS were 97 today, and for the first time in years, Jonís heart rate was 68. He has never gone below the 70s. So something good is happening.

    And, maybe, a PT could discern something about Tyler to help him. Hey! I will ask our PT for a referral to a PT in your area! We are expecting a visit next week from Jonís PT, so I will let you know what he says.

    And you certainly do not have to go this route of having a PT for Tyler. Iím just offering the suggestion, because of the remarkable results weíve seen in Jon, after years of his suffering. We were only hoping to get Jonís legs unswept, but this PT explained Jonís real problem to us, and that was lymphedema.

    Something else for you to ponder Ö

    And weíre having a quiet vacation together right here:



    There is a smoothie and a chair with your name on it, so come on over!



    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.

  9. #16
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    Sounds good to me Rose. Hubby heading to another funeral this morning. A lot of the guys he retired with are passing away on a regular basis. The average lifespan for a fireman upon retirement is 5 years. Not a great thought. Have no idea what I would do if anything happens to my guy. Tyler and I are on our own for several hours. Good thing I like my house and good books. Read to Tyler a lot. Get so tired of the boob tube.

    We are seeing a new Primary Care Doc for Tyler tomorrow. Hope this one is better than the last. Named Dr. Kringle. Go figure. Will address several issues and see how he does.

    Headed for church yesterday and went right on by when Tyler started gagging and retching in the car. I am sure no one wants a kid sitting behind them sounding like they are going to hurl down the back of their necks at any minute. Have no idea why Tyler is still doing that. He finishes this latest round of antibiotics (Keflex, which we always keep on hand) on Thursday. He shouldn't still be symptomatic. Starts in with the breathing problems at around 4:00 am every day now (at least we get a few hours of sleep before it hits) and is very vocal during the day (which is unusual for him).

    Tyler hasn't had PT in years. He was reduced to "consult only" basis years ago due to "lack of progression" with CCS. We have Kaiser, so I don't know how they deal with PT for someone like Tyler. Everyone always wants the ultimate "bottom line". Once they realize they can't "fix" Tyler's problem they move him along to someone else to deal with it.

    Got an email this week telling us how to proceed to the next level of the waiting list for CBD. Hopefully we will finally get to try this therapy later this month or early next month. Have no idea how that will work with the Keto Diet, but will ask next Monday. Should be an interesting conversation.

    Enjoying that smoothie. Thanks Rose.
    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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  11. #17
    Distinguished Community Member andromeda31's Avatar
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    (((Rose)))

    Beautiful mature tree pictures! Ours are all 'baby' trees yet, if we ever move from here, I would like something with big trees already. :) Winter used to be my favorite season, until I had to be out in it, lol! With the wheelchair, I am out in the nasty loading/unloading, not just running from my warm vehicle to warm building. I am a fan of no bugs though. There are nearby streets that have more mature trees though. Ranger likes walking around there since there are squirrels to chase.

    My IUD appointment went great! I was up late reading bad reviews and horror stories which only made me nervous. It hurt when they clamp the cervix, but not the end of the world. I was worried I would be crampy all day and we have a lot of kid things this afternoon but I feel fine. Yay! Now I just hope I am one of the lucky ones that totally do not get periods anymore. It takes a few months to settle out I guess but it can't be any worse than what I have been dealing with.

    Hope everyone else here has some good luck coming their way too!

    I treated myself to a grande salted caramel hot chocolate after my appointment! :) Still windy and cold....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  13. #18
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    Hi!

    Just a quick laugh for y'all....Brandon had a cross country meet today at 'home - Kaukauna' which is Grignon Park, down by the river, very scenic! Also home of the mansion (http://grignonmansion.org) There were 14 teams so parking was pretty much non-existent so I drove back up the hill and parked by the main road and we walked to the top of the hill thinking I would just go down the hill and get by everyone. Ha ha on me! I have actually never been to the top of the hill, which is nicknamed 'Mt Misery'. My kids have, but they love it, go up and roll down it. We have been at this park for other things over the years (flag football and football fundamentals when the boys were little- which we don't do football anymore though). 20141006_19.jpg

    Doesn't look so bad, eh? We usually hang out by that concession building down at the bottom. 20141006_16.jpg

    I started trying to push Caitlin's chair down this hill....I thought well maybe if I go sideways back and forth, like roads do in mountain areas that we could do it. It was all fine and well until we got to the 45 degree angled drop! Not such a good plan!! 2 ladies came over and asked me if I needed help and I let them help me and then my Dad came up and helped too. He had seen me up at the top of the hill, he was at the bottom....thank God! We got her pushed back up to the top where there is a parking lot and just decided to stay up there since the runners had to run up the hill, around at the top for a bit, then circle back down again to the finish line. Brandon is in the black tank & shorts with bare arms and blue shoes. 20141006_11.jpg

    One of the ladies that helped me turned out to be the grandma of one of Brandon's friends and she has a disabled (adult) son who still lives with her so we chatted for a bit. The boys went down with my Dad to watch the end of the race and Brian met them down there and came up the hill after. Next year I will have to go early to get a good parking spot for this race! We had Tyler's piano lesson after school so that didn't allow for that this year. Here is what it looks like from the bottom: 20140928_5.jpg

    I guess the wheelchair can't go everywhere!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  15. #19
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    Hi Rose, Thanks for the support and advice. You are right. At the end of the day I have to do what is right for me and my body whether they like it or not. I could definitely use the prayers. It is hard because they are all making mountains out of molehills so to speak i.e all things that can be easily fixed that they are blowing out of proportion and half of it isn't even my business anyway. I am trying to stay out of it, let everything blow over and get back to normal. Thanks a million for your support on my film. We had a snafu with the musical score but everything else is a go which is a relief to me. Yes IUDs can stop periods now if used properly but if you get pregnant you won't know it and that can be dangerous because of the hormones used in IUD. It is rare that you get pregnant on an IUD but it does happen. Glad Jon's therapy is going well. Ah, Jon knows what he likes in the ladies! Good for him! I have had crushes on PTs when I was young LOL. Nice trees!

    Lisa, I know the dangers of hills and wheelchairs LOL very familiar. Nice hill though. Sorry don't mean to freak you out about the IUD!! I'm sure you will be fine with it.

    I am going out of town for a few days so I won't be on here but good luck to you all.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  17. #20
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie)))))) ~

    That is an alarming statistic about firefighters! Has this been studied? Why is the average 5 years? What are the causes? Heart? Lungs? Hoping your Hubby is taking advantage of all preventive health care screening/tests/etc. He is so far above average in so many ways. I pray that this is one of them.

    Gagging and Retching

    Tyler's gagging and retching makes me think of Jon, when he is filled with fluid and/or gas. When the peeing slowed down, or the bowels weren't moving ... My guess is that could be the source of Tyler's gagging and retching. Is he constipated? (We have success with M.O.M.) And, if he's holding a large amount of urine (as you said you were draining 400-800 ccs), that could be backing up on him.

    Have you tried cathing him more frequently, or more times a day in a 24 hour period? I know that cathing is irritating and probably not something one wants to do too frequently, but (I'm thinking out loud again), if he was able to void more often, it would reduce the build up of urine in his bladder/kidneys. That might reduce the gagging/retching, and also give the bowels a chance to have some of that fluid to lubricate them to move. We've learned that if the bowels are competing for water, they will slow way down. It's tough to achieve a balance!

    Is constipation a side effect of Keflex? And could the Keflex be upsetting Tyler's stomach? Nausea?

    Could he have gas? It can be very painful, as we all know. That can also cause gagging and retching.

    If the issue is that Tyler isn't voiding enough per day, or is holding his urine too long between cathing, then, you might want to consider an indwelling catheter (I know what you're thinking ~ here she goes again! ). I promise I'm not pushing this on you! I just thought that perhaps you could give it a trial run for a month to see if it makes a difference. See whether it helps with the gagging and retching, with the bowel movements. If not, then return to intermittent cathing. It's easy to wean off of an indwelling after a month, by retraining the bladder.

    Prostate Check?

    Another thought that just ran through my head ~ Maybe ask for a prostate blood test just to check. I know Tyler is too young to have a problem with his prostate. But it is worth ruling out right now, because intermittent and indwelling catheters do affect the prostate. This is Jon's core problem and why he now has an indwelling catheter, and likely, why he is holding his urine for hours now. Of course, Jon is at the age where the prostate can become problematic. But his case was definitely connected to having intermittent caths for UAs and having indwelling caths in hospital for 45 days, 40 days, 3 weeks, etc. throughout his entire life.

    In 2010, I asked Jon's intensivist in the hospital what Jon's ridiculously high PSA level meant, and he said, flatly: "Cancer." Then he sighed, "but I don't think Jon has cancer." What, then, caused that horrendous PSA level? Two top urologists weighed in with the answer, "catheterization." Over time, this causes an enlargement of the prostate, which impedes urine flow.

    So, this is just another thing for you to keep an eye on with Tyler. And a baseline PSA level right now will be available for comparison in the future. It's a blood draw. Nothing complicated. Information gathering.

    Physical Therapy

    I asked Jonís PT today for a referral to a PT in your area. He didnít know of anyone, but he recommended that you search for a PT, who has a background in neurologic conditions and/or orthopedics.

    I remember CCS denying both of my boys PT, and threatening fair hearings until I got them a 3 month consult weekly. After 3 months, the fight began again. Obscene! Name one of our kids, who wouldn't benefit from PT?! Seriously, we ALL could benefit from PT, you, me, everyone here at BT.

    The changes in Jon in just one month of our simple PT routine are remarkable! We are thrilled with Jon's improvements, but I remain disappointed that I had to convince the PT supervisor that Jon was not a lost cause, bed bound, and hopeless.

    It's the people in charge of making these decisions about granting services, like PT, who don't care about their patients, and see them as a drain on the system/insurance. But the folks, who work with patients, like our nurses and our PT, are committed to their discipline and to patient care.

    So, don't give up pursuing this option for Tyler. You have many reasons to justify requesting a consult with a PT.

    That might be a question to ask of Dr. Kringle (and if this man has a white beard and twinkling eyes, I think he'll say "of course!").

    So happy to hear that Tyler is in line with the CBD treatment. May that come through and work for him! With the CBD and the Keto diet, I pray that Tyler will find relief from his seizures.

    Do you have a pulse oximeter? I highly recommend having one to check SATS and Heart Rate, particularly during seizures, and gagging/retching, or when you are concerned about his breathing.

    Sorry this is SO long! I just wanted to make sure that I covered everything.

    Letís have another smoothie!



    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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