tag:blogger.com,1999:blog-4863417462909147257.post1887197702469956543..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: Infantile SpasmsElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-4863417462909147257.post-77715061103075642272009-10-27T15:00:21.319-07:002009-10-27T15:00:21.319-07:00i am in the same boat as you my son is 16 months o...i am in the same boat as you my son is 16 months old and he is still taking different medications. i will tell you more if you can contact me. i would like to speak to you about more since your daughter is 24 now. i would like to learn more.Jessica Goycohttps://www.blogger.com/profile/17759965775896028792noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-1370607156491664322009-10-02T21:50:51.157-07:002009-10-02T21:50:51.157-07:00Hi elizabeth! thanks for stopping by connor's...Hi elizabeth! thanks for stopping by connor's blog! I look forward to checking yours out more. Your daughter is just a beautiful young woman. I would love to chat sometime about our similar journey that we are on & see if there is any advice that you would like to share. I haven't met anybody w/ a teen that had IS so I guess i'm kind of curious to "pick your brain"??? I guess right now I'm just kind of curious about how she is doing now developmentally & how her seizures are...what have the IS turned into? Sounds like our stories are fairly similar. My e-mail is mmcguirern@yahoo.com Thanks MonicaMonica~ James~ Connorhttps://www.blogger.com/profile/02401218928219589164noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-65050043982019523432009-09-28T09:48:59.032-07:002009-09-28T09:48:59.032-07:00Elizabeth, you may feel as if you are ranting (and...Elizabeth, you may feel as if you are ranting (and you certainly deserve to rant) but this post is very informative. You are an invaluable resource to parents of other special needs kids and an advocate for change and truth and beauty and good--which is good for all of us.Denise Emanuel Clemenhttps://www.blogger.com/profile/10982725113569943337noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-82932500947774267012009-09-26T08:26:07.814-07:002009-09-26T08:26:07.814-07:00Stay strong.Stay strong.jeneva22https://www.blogger.com/profile/14796890614666454443noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36561546360371691812009-09-25T20:09:59.895-07:002009-09-25T20:09:59.895-07:00Our dear local coffee importers/roasters have a so...Our dear local coffee importers/roasters have a son who has infantile spasms. I had never heard of them until he was born. I'm so thankful that you - and they (http://owenkeithmarshall.blogspot.com) - have blogs so you can write, share your experiences and give/receive support. Knowing that you're not alone can be a powerful comfort. You're not alone!Gbergerhttps://www.blogger.com/profile/08895779471612397202noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-83366497831505753592009-09-25T18:39:36.700-07:002009-09-25T18:39:36.700-07:00Elizabeth - I don't even remember how I came a...Elizabeth - I don't even remember how I came across your blog, but I've been reading it ever day for some time now. You have such a beautiful way of writing, and your posts always touch my heart (and sometimes my funny bone). Thanks for that.Whitneyhttps://www.blogger.com/profile/08014002053096866277noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-54207589155053530692009-09-25T13:39:43.048-07:002009-09-25T13:39:43.048-07:00keep treading...you're awesomekeep treading...you're awesomeLaurahttps://www.blogger.com/profile/15985522830610197074noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-27246947413009218462009-09-25T10:45:00.469-07:002009-09-25T10:45:00.469-07:00Any time you are ready to go out into the streets ...Any time you are ready to go out into the streets against the pharmaceutical greedy, irresponsible and I don't hesitate calling them murderous bastards all you have to do is call me. My reason to despise them the way I do? I used to work at the then Columbia-Presbyterian Medical Center at the Pediatric Seizure Clinic in the late 60s. <br /><br />Enough said.A.Smithhttps://www.blogger.com/profile/06947308878002639964noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-39188577793418906392009-09-25T07:30:11.782-07:002009-09-25T07:30:11.782-07:00It is a pretty sick joke, the ACTH connection.
Th...It is a pretty sick joke, the ACTH connection.<br /><br />Thanks for stopping by, too. I appreciate it.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-4799051719470428272009-09-25T07:24:02.550-07:002009-09-25T07:24:02.550-07:00The possible connection with vaccines is alarming ...The possible connection with vaccines is alarming - and real.<br />Our chiropractor has warned us against the h1n1 vaccine because of a rare but very real neurological side effect that changed the lives and possibly even killed many people in the first swine flu "outbreak" in the late 70's.<br />Hindsight is 20/20 and it really sucks - esp when govt and big pharm prefers blindnessAnonymoushttps://www.blogger.com/profile/10818795902981871173noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-44254724207092805802009-09-25T05:48:31.358-07:002009-09-25T05:48:31.358-07:00I am brand-new to your site as of this morning. Th...I am brand-new to your site as of this morning. The timing is ironic, as we have shared your nightmarish journey with infantile spasms, and I am just now on my feet well enough now to begin my formal crusade against them. Four years ago these God-forsaken seizures stole our firstborn infant son away from us before our very eyes, while we fought with everything we had against them. ACTH, the "gold standard" (HA!) was hell on earth, and he failed it anyway. We are thankful that a cocktail of vigabatrin (an excellent drug for IS which was just FDA-approved, Hallelujah) plus several other AEDs PLUS the ketogenic diet finally worked to make our boy seizure-free about eighteen months ago. But the complete devastation of his little mind and body had already run its course. It even stole away his ability to smile for over a year. Our biggest miracle has been the return of those smiles and some laughs, slowly over time, once we got him seizure-free. Nonetheless, our beautiful boy (who also has Down syndrome) is profoundly disabled, both intellectually and physically. Our sadness as his parents is as strong as ever; it just has gone largely underground now. In many ways, our son died in his first year of life, but his body continues on and we have no closure as people normally do with a physical death.<br /><br />I am just about to start my own blog on this very topic. Our mutual friend "Single Dad" kindly set me up at www.killinfantilespasms.com. Just give me a few days and there should be some actual content!<br /><br />We have a lot in common. I would very much like to talk with you more about your experiences, both online and off. <br /><br />Thanks for posting.<br /><br />For now, I am,<br />KILLinfantilespasmsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-10235940740751100972009-09-25T05:46:03.860-07:002009-09-25T05:46:03.860-07:00I really commend you for posting about this. My so...I really commend you for posting about this. My son was on ACTH when he was a baby too. It was hell. I felt like a monster giving him those shots, even though it was what was perscribed. A nightmare. These are the kinds of things only another parent can understand who has been there. Thank-you so much. Maybe I can go back to those memories and know I wasn't alone. At the time I didn't know anyone going through the same thing. Blessings on you and your beautiful girl.Mystic Thistlehttps://www.blogger.com/profile/06174458059451015463noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-57307547251588876702009-09-25T01:14:05.755-07:002009-09-25T01:14:05.755-07:00Hi!
I'm brand new to your blog and just want...Hi! <br /><br />I'm brand new to your blog and just wanted to say hi and thank you for this post. One of the characteristics of my baby's syndrome is epilepsy, and I'm fearfully awaiting the onset of the seizures. It helps to hear from parents who have been down that road. <br /><br />After 14 years of seizures, you must be painfully exhausted. It sucks and I'm sorry for your struggles. But your blog is great and it's helpful for people like me who are new to this not-so-volunteer journey.<br /><br />Wishing all the best to you.<br />Erikaerikahttps://www.blogger.com/profile/03048369118376287016noreply@blogger.com