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Thread: It's been a long time since I was here!

  1. #1
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    Default It's been a long time since I was here!

    Hello everyone! It has been years since I have been in here, and it has been updated since my last visit! It looks great! I notice some of my 'old' friends still around, not sure if you remember me, but A HUGE hello and hug! I am Paula, Mom to Teigan who has Dravets Syndrome ( a rare and catastrophic epilepsy syndrome). Teigan is almost 14 now, and still struggles with almost daily seizures. Despite this, she is a happy little teen who makes my heart glow! We have had our ups and downs, medication struggles, gtube placement for refusing to eat, new school, new neuro, ect. I think the last time I was around, her father had just walked out on me and our 3 kids, I am well healed from that traumatic experience now! Hope to reconnect with some of you, and meet some new friends too! Hope you are all well, and I look forward to hearing some updates!

    Paula

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    Welcome back Paula.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

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    Hey Paula,


    Great to see you again and ABOUT TIME :)

    Teigan is certainly doing well at the big 14. Wow a geenager plus one. Way to go Teigan.

    Please hang around and visit and post to keep us informed of the latest goss both good and bad.

    Best wishes and seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Paula & Teigan))))))

    Welcome Back! So happy that you found us again! :)

    It's wonderful to hear that Teigan is doing well, despite her frequent seizures. The Gtube is a godsend in many ways, as I'm sure that you know. Is Teigan on a canned formula or a blenderized diet of real food?

    I look forward to reconnecting with you, Paula.

    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.

  5. #5

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    Hi Paula,

    I'm still here, but don't post all that often.
    Glad to hear Teigan is doing well
    Love yvonne xx

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    Thanks for the warm welcome!

    I don't think I have met you Carrie, but I look forward to getting to know you!

    Glad to see you still around Paul! I watched some of your videos of the Champ! What beautiful memories you have in those. Hope you are both doing great!

    Rose! I hadn't noticed you were still around! I can't believe Jon is 42 now. Time sure does fly by. Teigan is getting canned formula, but only as a 'top up' when she refuses to eat. It was an agonizing decision to get the tube, but I am grateful that we finally got it. I fought with her for years to try and keep her eating orally, and the tube takes so much of the pressure off now. I wish I had done it earlier.

    Yvonne! So glad to see you! I don't see you around the other sites very often, and they have gotten a tad overwhelming with trying to keep everyone straight! I miss our old group....How is Travis doing these days? What is he taking now? Teigan is currently on Stiripentol, Clonazapam, Phenobarb, and we are weening Zarontin. We will be adding felbamate as soon as it comes in (probably in about a month.) I am so defeated with the frequent seizures, but the neuro has scared me into starting a new med by telling me that if we don't do something, it wont be long until I can't care for her at home anymore and she has no quality of life from constant seizing. Hope you guys are in a better place!

    Anyhow, take care everyone, and I look forward to reconnecting!

    Paula

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Paula))))))

    Actually, I'm here fairly regularly. Working my way up to 100 posts! I remember when I reached a 100 posts on CN1, in 2000, and posted a celebration thread. Of course that was nothing, as many of us reached posts in the hundreds (thousands?) through the years.

    I can't believe that Jon is 42 either. And that he has survived all that he has, against the odds.

    I'm sorry that Teigan's neuro scared you into trying Felbamate for Teigan. That's quite a cocktail she's taking, and it is a very delicate balance finding the right combination of the right AED's.

    May I just offer my own experience for your contemplation?

    Michael seized every day for 22 years. His condition was undiagnosed, so no precedents were cited for his protocol. The more AED's we tried, the worse he became. Sometimes these drugs can have the opposite effect of their purpose in that they can promote seizures.

    Despite the seizures, Michael was able to attend his educational program, as well as enjoy a life filled with extracurricular activities. He traveled, went to concerts, ball games, Disneyland, county fairs, many school functions, even had a sweet girlfriend from school, and he enjoyed much of his life. He had an excellent quality of life, beyond his seizures.

    When he was 29, his health began declining. Eventually, his seizures were completely uncontrollable and contributed to his final illness.

    I was able to care for Michael and Jon (still care for Jon, of course) through those years.

    So, I offer that Teigan has lived with her seizures and is happy, as you say. And you are already providing her with excellent care and supervision for 14 years. I wonder whether Teigan's neurologist has considered these things. Why does the neuro believe that you will be unable to care for Teigan if she is seizing, when you are doing that now?

    If someone had told me years ago that I'd be changing colostomy bags, feeding through a Gtube, emptying and irrigating an indwelling catheter, and cleaning a tracheostomy, I would have thought that would be more than I could handle. But it turns out that it isn't more than I can handle, and I 'm doing all of those things every day.

    I'm not Super Woman. I'm a mom, just like you, who learned the hard way, just like you. Please don't let Teigan's neuro sell you short with regard to what you can or cannot handle. Only you can determine that, and typically, what we think we can't handle, we actually can and do.

    Donna Thompson has posted here recently about a 3 year girl named Amelia, where we've been discussing Quality of Life, the term that doctors seem to toss around casually and without comprehension of how varied and subjective that term is to every individual.

    I encourage you to read Donna's posts and the comments.

    Again, only you can determine through Teigan the quality of her life and how to best maintain that quality. Teigan's neuro doesn't have a crystal ball to see into her future, nor a right to decide what constitutes a quality of life for Teigan.

    Two things to remember: 1. You know your daughter better than anyone else. 2. Go with your gut.

    The reason that I asked about formula vs. real food is that formula often contains ingredients that are less than beneficial to the system overall: sugar, corn, soy. And these three things can also aggravate seizures. Real food, as Teigan eats orally, processed through a powerful blender to liquify it for Gtube feeding, might be helpful to Teigan.

    Paul has been extremely successful with feeding a blenderized diet to Grant. I tried with Jon, but his digestive system couldn't handle it, and we ended up with motility issues, which really disappoints me. But if Teigan is also eating orally, that shouldn't be a problem for her.

    Just something else for you to consider. Here's a site about the Blenderized Gtube Diet, as well as a forum:

    http://www.blenderizeddiet.net/

    Stay strong and keep the faith. You can go the distance. And we're here to support you the entire 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.

  8. #8

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    Hi Paula,

    I agree that Facebook is not the same. POKWE is still going, but very sporadically.

    Travis is doing well. He turned 16 in December, so he is growing out of all of his clothes both upwards and sideways lol. He is on Epilim, Topamax, Diamox and Clonazepam, along with Lactulose am and Melatonin pm. His VNS has been in for five years and has great for him.

    We weaned him off Diamox late in 2010, but he was having regular seizures again, so we have re-introduced it. Currently he has tonic clonics only in sleep and they are short, gentle and quiet. When awake he still has myoclonics, head-drops, and some absences. Thankfully the dreadful pattern sensitivity and photosensitity he had when he was younger has also abated, although he still needs sunglasses all round and is sensitive to bright sunlight and glare.

    His behaviour is very challenging, but thankfully he loves going to the respite house and goes there regularly.

    Paula, can I ask why Phenobarb and not Epilim? Travis tried Zarontin at one stage and it was pretty horrible for him. He also tried Stiripentol with Ingrid Scheffer's trial but it had no benefit at all. Have you tried the Stiripentol, Clonaz, Epilim regime? I realise it is probably a silly question as with most Dravet kids, you have probably tried everthing.....

    I haven't heard much about Felbamate, but these days I think anything is worth a try, and what suits one child may not suit another, and you won't know unless you try it. Easier said than done I know!!

    Hope the rest of your family are well and that Teigan settles down soon,
    Love Yvonne xx

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