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Thread: November Roll Call! :)

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default November Roll Call! :)

    Hi!

    Just thought I would start up a generic "what's up" :)

    Caitlin is still doing well on the felbatol. There have been a few days here and there where she is pale, drooly, and ornery~not quite herself. With having the weekly blood draws, it is obvious that those have been occuring when the depakote is lower. Weird. Don't know why the levels are fluctuating so. She will be 12 in Jan, no periods yet though (or any puberty signs), but I guess I would not totally rule out hormones. We see her neurologist the end of November so I will be asking about it then. I worry a little that she is having the honeymoon effect with the felbatol, except for the bad days matching up with low depakote levels. Hopefully she just needs an increase in that. I have been really happy with how well the felbatol has been working for her! It is nice to just enjoy her happy personality and to see long lost skills returning! She also has her annual neurosurgeon visit and also her "every 6 mo" CP clinic visit! Lots of trips to Milwaukee!! But basically easy checkup appointments so I am not too stressed. I think she has had a small growth spurt...seeing some ankles when she sits in her chair which is always the first way I notice, lol! Her right hamstring has seemed a bit tight so I will be asking about botox for that. It would be great if she could get that done in November as then the insurance would have to pay for twice weekly PT for stretching for 8 weeks....standard protocol! If not, she will be back to once/wk PT in December. I stretched out what our private insurance will pay for over the year as they allow 60 visits/yr (yes generous I know!). December we have scheduled visits number 58, 59 & 60 that the private ins will pay for so if she gets botox she will get some bonus visits. The only bummer is our local physiatrist that used to do botox for C moved out of state last yr so she has to get it done in milwaukee now and I don't know how fast they would be able to schedule it for. Rest assured I will be loud and vocal for getting an appointment sooner than later!! :)

    Other kids are doing well too! Tyler is having his tonsils/adnoids removed tomorrow morning, so prayer for him that it goes well and for a speedy recovery!! 2 of my kids have had them out before and felt better after about a week so I am hoping for the same for T. I went to the library today and checked out lots of books and 'boy' movies to keep him busy while he recovers...and stocked up on popsicles, ice cream and yogurt! I make good fruit smoothies too!

    The only bad thing right now really is that while I was gone away on a scrapbooking retreat this weekend....our wall oven died! Not the kind of phone call that is fun to get while I was away!! Brian took it apart and it was the control circuit board that was charred. He is an electrical engineer and said that should NOT have happened! It should have tripped the circuit before blowing up like that. Good thing he was right there (was making pizza for kids for lunch on saturday) and had turned it off right away when he heard the sizzle happen. I do often use the time bake feature so it is a bit scary to think about the house starting on fire or something! Anyway, new oven is on order and I am hoping it comes in this week though it is scheduled for next week. Going to be grilling out and using the crock pot for the next week!!! We'll manage! :) Hope everyone else is doing well!!

    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!!

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Only have a moment and will respond to the rest of your post later. Wanted to share this information about Felbatol and Depakote:

    http://www.drugs.com/drug-interactio...-1068-608.html

    http://professionals.epilepsy.com/me...teraction.html

    Looks like Felbatol should increase Depakote levels (I'd suspected the opposite, given what you've said here about Caitlin's Depakote levels).

    Definitely something to discuss with the neuro.

    I'll return later ...

    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.

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Hi Rose!

    Yes, when we first started felbatol, they cut her depakote in half, but it dropped way low (in the 60's and her typical is 80) so we went up a pill to 1 pill AM/ 2pills PM. Before felbatol she was at 2pills/2pills per day. They said the felbatol increases the valproic acid but weird that it didn't really in her, but we all know everyone is different! :) Even the 'bad' days are still way better than how she was before the felbatol so I haven't worried too much. If they want to go back to 2/2 pills daily I would be fine with that. She goes every other week now for blood draws for the next 3 months so we will still be able to have good monitoring of levels. Tyler's surgery went great! He was a trooper! Didn't cry at all, even when they wheeled him off (thanks to chloral hydrate!) and when we woke up. Ate his way thru a whole box of popsicles already. Hopefully he continues to do so well. I am keeping ahead of the pain, meds every few hrs like they said...especially since I now know from experience! I had my tonsils out in 2009 so I have a lot more sympathy! LOL! :)

    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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    Haven't updated in a while, so here goes. Hard to believe Tyler will be 18 a month from today. Where did the time go? We have to transition to adult services once he turns 18, so that will mean a whole new team of doctors. I am not looking forward to filling in a new group about the intricacies of Ohtahara Syndrome. Tyler has had another UTI for the past few weeks. The doc ordered Keflex, switched to Cipro, then Septra Bactrim, all of which were useless on this bacteria. He is now on Nitrofurentonin which is giving him pain problems. We pretty much kissed sleep goodbye when it started. Tyler will moan, groan, chatter, seize and shriek until about 3:00 am. Hopefully the latest drug will cure the problem. Other than that, Tyler has been doing pretty well and staying pretty healthy. He is such a trooper and has taught all of us what it is to endure no matter what.
    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."

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    If Caitlin is having a growth spurt, that might be a reason for the lower levels of Depakote, indicating that she needs to increase her dose. She also may be utilizing all of it better now systemically to ward off seizures, which would mean increasing her dose. Another thing to consider, if it's at all feasible is splitting her doses into three rather than two doses. AM, afternoon, and PM. 8 hours apart rather than 12 hours apart. Some years ago, we had to do this for Jon. It provides better coverage, so that trough levels shouldn't be too low. They are sometimes, and we adjust the dosages, but in general that's the goal ~ to keep a steady state of the drugs in his system.

    Hope you can get additional PT. It's just ridiculous that you have to negotiate for that, as it's something she clearly needs and benefits from receiving. It should also be part of her IEP.

    So glad that Tyler is okay after his surgery. Hope those are sugar free popsicles or he may be bouncing off the walls soon! Hope that he recovers quickly.

    Well, all I can say about your oven exploding is: how fortunate that your house didn't burn down, and your husband is an electrical engineer. That would be quite frightening to hear the oven sizzling and popping. Better that it happened while he was using it than you!

    ((((((Tamie))))))

    Yes, it is a marvel that your young man is turning 18. He has defied the odds, thanks to the love and care he receives from you and your husband.

    The adult world is a startling experience, I will vouch for that. Not as many protections as our guys had as minors. However, Tyler should receive an increase in his SSI, and he should be eligible for IHSS without question, since he's an adult. Regional Center should become more involved in meeting Tyler's needs.

    Also, no matter what anyone tells you, Tyler does not have to register for the selective service. I was coerced into signing up Jon, but when it was Michael's turn, I refused. Selective Service sent threatening letters to Michael that he was required by law to register, so I sent them a scathing letter, explaining Michael's disabilities, and I told them that if they were prepared to take care of all of his needs, then I would sign him up for the service. Never heard from them again!

    I did register Jon to vote, but I was concerned that his ability to understand what he was voting for might be questioned, as well as my assistance in filling out his ballot. The fact is that Jon understands politics better than I do in many ways. Most of his life, he has watched, by his choice, both presidential conventions, and all debates and speeches by the candidates. He is very smart and intuitive. But it would be difficult to explain that to a stranger.

    I hope that you will find good docs to care for Tyler as an adult. You might find some docs, who scratch their heads, because they don't have a plethora of patients with disabilities. Is it possible for Tyler's current docs to make referrals to "adult" docs, and to forward all of Tyler's records to the doctor of your choice? That would be helpful.

    I'm really really glad you didn't pay that attorney $10k! I'm still steaming over that shyster! To put you through that stress!!! Oh man!!! She should be reported to the bar for that underhanded move.

    I'm so sorry to hear that Tyler has another UTI. I think that it comes with the territory, unfortunately. The docs don't even bother to do a UA on Jon, unless he has overt symptoms, because an indwelling (and I'd assume also an intermittent) catheter will always show bacteria.

    Jon has taken Bactrim twice, and it interacts with Dilantin, so it makes me nervous. Macrobid (which is what Tyler is taking now) was also suggested for Jon, but we managed to dodge that one. He can't take Cipro or Keflex. The other problem is that the more frequently an antibiotic is taken, the less effective it becomes, so another one has to be tried. Jon is colonized for MRSA, so we try to avoid antibiotics, unless he absolutely needs one. His choices are limited, because of Dilantin and Depakote interactions.

    Jon uses a silver tipped catheter, which is supposed to suppress bacteria, specifically pseudomonas. Yet, it still occurs in the occasional UA. But he's symptom free, knock on wood as I say that. If you decide to go with an indwelling catheter, a silver tip is worth considering. There might even be silver tipped intermittent catheters. Worth checking into.

    Jon had bladder spasms. Is it possible that Tyler is having those? Would he possibly benefit from continuous draining from an indwelling catheter? I know it's not the best alternative for several reasons, but it's working for Jon, because it is his only option.

    Both urologists told us that catheters affect the prostate, and that is likely the cause of Jon's enlarged prostate, in that he's had a catheter numerous times throughout the years, when he's been hospitalized or hasn't peed for 24 hours. Every time he's cathed, the catheter has to go over the prostate. It's irritating. And every time he's cathed, or we open up the system (detach the drainage bag tube from the catheter), we risk infection.

    Personally, I would rather manage an indwelling catheter, which is changed once a month, than cath Jon intermittently every day.

    I know that you have a ton on your mind and lots to consider. I just wanted to share with you my/our experience.

    And, how are you, Tamie? How is your health? How are you feeling?

    Prayers going up for all ~

    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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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS)))))) To All ~

    Jonathan's update is all good news, which I'm thrilled to report after his tumultuous month with the catheter, which caused him so many problems and discomfort. All vitals are stupendous, and he's flowing and going.

    As he approaches his 43rd birthday tomorrow, we are delighted that he is well and able to celebrate it, albeit without cake. He will have candles and singing though.

    When we consider that Jon has been hospitalized, near death, 6 times in the last 8 years, it's nothing short of a miracle that Jon is here, healthy and welcoming his 43rd year. And, we just give thanks for this blessing and pray that his health will continue to be stable.

    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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    Distinguished Community Member andromeda31's Avatar
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    Happy birthday Jon! :) Wow 43 yrs old!! I hope you all have a great day and prayers going up for an easy, hospital free year!!!

    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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