Tuesday, March 18, 2008

Follow Up

As a follow up to the last post on Dear Son’s choking, I e-mailed the ENT. She is the one who performed Dear Son’s botox injections on January 22, 2008. She called me this morning however unfortunately, there aren’t any other meds to try and most likely the next step will be removal of his saliva glands and a Nissen. If that doesn’t work, a trach may be necessary however I hope that is not the case. We see her in clinic next month.

On a different note, one of the students from Big Academic Medical Center contacted me a few weeks back about conducting an interview for the college newspaper. She is a senior and has been reading the blog for over a year now. She states that she guessed it was the Big Academic Medical Center she attended based on the clues in the blog. She was doing a story on the Air Transport Team and since we have used there services several times over the last few years, she was interested in interviewing me. The story was supposed to print a week or so ago and she was going to send me a copy however I haven’t received it yet.

On another publishing note, my blog was published in a Big City newspaper. As you may recall, I was invited into the Blogburst Network in November of 2006. BlogBurst is the world’s largest blog syndication network.* Once you sign a contract, any of their publishers can view your blog and print your content. Recently, a Big City Newspaper published my blog in their on-line edition. You can see about it here. Ironically, it was the same post that I submitted to Newsweek’s “Your Turn” a few weeks ago.

But most of all, I’d like to thank you. It is your support that is always a pleasure to us. The comments are always so beautiful.

*Note: Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. In 2006, Reuters formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others.


Daisy said...

Congratulations on being accepted/invited into BlogBurst. I tried to join, but they did not want me.

I'll bet sharing your information is helping lots of others who are going through the same things as you are with your sweet son. Sharing your knowledge and experience is a powerful thing.

Baby Island said...

Of course you've been accepted and published you fabulous mom and also a great writer!

Take care! :)

Shannon said...

can i ask what you thought about the botox on the salivary glands??
we just met with an ent last week to discuss that for our son. he has major choking problems and misses alot of school because of it. i am very unsure of it.

Dream Mom said...

Shannon-I thought it was worth a try. It is my understanding for some children, it works quite well.

Dear Son had his done on January 22nd. Prior to the botox, his choking was so severe, that it was like someone pouring a bucket of water down his throat. The botox stopped the choking immediately and for three weeks it worked well. Slowly, the choking resumed however it took a while. It never resumed to the previous level until we increased the Klonopin dose because Dear Son was having seizures. (Klonpin increases drooling.) Perhaps if we had not increased the Klonopin, it may have been an o.k. solution.

I should mention that botox was supposed to decrease drooling however I can't say that I ever noticed any difference after the botox with that. The choking impact was significant though, at least initially.

Typically, they would need the botox every six months or so. Because his wore off at the 8 week point, we know it is not effective enough for a long term strategy.

Another advantage to the botox is that it's less invasive than removing the saliva glands.

You can read more about the botox on Pub Med. We started out with a higher than normal initial dose since his choking was so severe and due to his Klonopin use. As an FYI, Dear Son is on several seizure meds and a fairly high dose of Klonopin.

In summary, I think it's worth a shot. Also, removing the saliva glands is a big step. I'd rather know that the botox wasn't an option before I would consider something more invasive.

The only tip on the botox is to make certain they have a radiologist present to guide the injections.

Poppy Q said...

Dear Dream Mom,
I has really been thinking very very hard about the question you asked me. Please come and visit to see my answer.

Have a lovely Easter, I am sure the bunny will come and visit you.

Professor Poppy Q

Jaime said...

Hello Dream Mom,

I truly felt honored and a bit ashamed of myself when I saw you'd visited my blog (I had a rant about my Mother and have since edited it, I wrote it in anger and am embarrassed to admit just pressed publish).

I visit your blog often. Hearing about your relationship with your precious dear son humbles me and reminds me of what is truly important.

Thank you for visiting me to remind me of just that. Congrats of being published. Everyone should get the opportunity to read your writing.

Jaime ;)

P.S. I do have Ruby Slippers and you are right, it is a very beautiful color.

Dream Mom said...

Jaime-I think anyone who writes a blog has written a post that they regretted and deleted it. Myself included. No worries!

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