Doc said..your 18 yr old son has MMN or ALS

[11bravo]

Valya, You sound like your really strong and starting to take this in stride and I commend you for that. I am sorry for the reality that you are facing.
Does anyone know how I can view some of these pictures?

Thanks

[Valya]

Hello Tom.

I appreciate your concerns and they are very valid. At this point, if he takes the ceftrixone, he will not be participating in a trial. Dr. Rothstein said that when it was tested, the results were shown more effective than Lithium and that's why he prefers it over Lithium.

There is a risk of infection with the semi permanent IV point, but, unless I'm not aware, it's no more of a risk that the diabetic pump they want my type 1 diabetic son to use. I had not heard about the potential for blood clogs though. I'll certainly look into that.

Agreed, agreed, agreed...Johnny's best interests over any testing trial. After reading Sharonca's posting, I'm wondering if it might not be best to try him on lithium first, since there's no IV to mess with. Clinical trials are not the absolute here, as her results show. Dr. Rothstein spent a lot of time talking about the process of clinical trials, citing some which actually harmed the recipents. There is an over see board, which stopped that particular trial.

In any case, we have the same concerns you mentioned. They are thinking, he's so young, why not try an aggressive approach which makes sense but I don't want to just pile drugs down him either.

I woke up crying at 3am this morning, another dream I suppose, don't remember. I don't know how to watch him go through this.

We are newbies to all this, and still in emotional shock and disbelief this is really happening. I honestly appreciate your thoughts and concerns and I'll keep them in mind.

Valya

[Valya]

Thank you 11bravo. I don't feel very strong but I'm trying. I think you need a certain number of posts to view profiles. Twelve if I'm not mistaken.

[DeeMichelle]

Valya
On a different topic...Re: Diabetes my niece has just started using the diabetic pump and really likes it. I hope you get some good luck for both boys. These are such hard choices to have to make and I'm sorry that you all have to.
Wishing you all the best
Deex

[Valya]

Johnny has an appt the Friday, the 17th at UC Davis. At that time, we will discuss the medications as recommended by Dr. Rothstein at Johns Hopkins. Hopefully, he will have the results of the genetic testing also.

Tom, I will definately keep your concerns in mind. Thanks again. If he takes the ceftriaxone, he also has to take a gall bladder prevention medication. That's another thing which concerns me, the secondary effects of any medication and how much does he have to pile down with the primary medication to counter the potentially serious side effects? I don't mean nausea but gall stones, for instance.

I'm wondering...maybe it might be best to just wait a bit before starting anything other than the Rilutek. Let our emotions, Johnny's included, settle out before pouring drugs in him... the more I think about that idea, the better I like it.

Thanks everyone. I'm so glad I found this site.

[Valya]

Tom, guess what? Immediately after our postings on cautions for clinical trials, I got a call from the clinical trial coordinator at Johns Hopkins. Johnny is eligible for the trial on talampanel (the one I couldn't spell earlier). I told the girl it was an amazing coincidence that she called right then .

'Cautious' does not mean 'run from'. I asked her to send all the information available on the trial, that we would look it all over and get back to them soon, making no commitments. I also told her we weren't going to just throw him in without at least some evidence of effectiveness from prior trials. It is one of the few in which Johnny could participate at age 18. The dead line for participation is the end of February.

We have time to research this one specifically and gather our thoughts and emotions before making a decision. You can't mix ceftriaxone and talampanel so that must be thought out also.

[Valya]

Dee,

We've tried to get our son to agree to a pump but he refuses. At this point in his life, he's probably right. He's extremely active, skateboarding hours daily. Naturally, he does fall and he's concerned that the pump will be damaged, in addition to not wanting it hanging on him. I told him he could possibly remove it for an hour so so, if he were skating right outside the house but he says no. Maybe when he stops skating would be time to bring it up again.

Btw.. I just read an article on yahoo news or somewhere, about the increasing number of teenage deaths attributed to use of the diabetic pump. Many aren't managing it properly, unfortunately.

Thanks Dee.

[Valya]

Sorry to make too many posts...

I tried to add all the friends requests but computer won't let me. I have to reformat the computer hard drive, probably this Friday. Hopefully, it will let me then.

Just know, that I'm not ignoring the requests

[tmasters]

Valya,

That's exciting to have some options to choose from! I don't know much about either of them so I'm not going to try to steer you in any particular direction. But at least you can make some choices. Choices give us hope, and hope is so crucial.

BTW: I've been on Lithium since March. Can't say whether it's helped or not, but I'm a slow progressor, so maybe I wouldn't have been without it. Who knows? No side effects and it's cheap, so I continue...

-Tom

[brendapals]

Valya,
Just wanted to jump in and let you know I'm another one on Lithium. I started on 7/4/08, after being dx on 6/3/08.
I don't know if it's doing anything or not, I seem to be a slow progressor, it's cheap, and I have had no side effects. So I'm taking it every day with the Rilutek.
I'll be keeping you in my prayers,
brenda

[Al]

Thought I'd add my 2 cents worth. My neuro says they are not getting the results they had hoped for with Lithium. Five of us at my clinic have quit Lithium because we felt it was speeding up progression. These are people I talk to regularly. There are probably another 60 that started taking it and I have no input from them. I'd try the other drugs myself.

AL.

[hopingforcure]

I have a pump, it was an outpatient procedure, and it does not affect life at all. You can do everything you would normally do.. It is under the skin, it is round circle underneath the colar-bone. It is completely non limiting... any questions just pm me. I have the worst veins and it makes anything to do with a stick, and breeze.....I am going to try Cextraphine SP.. it is Rocepherin (SP) also, on my own.. A clinical trial is starting as you said, but I am going to do it on my own... Hope I see some improvement and and Johnny and I can share maybe two good future outcomes..

[DeeMichelle]

Originally Posted by Valya

Dee,

We've tried to get our son to agree to a pump but he refuses. At this point in his life, he's probably right. He's extremely active, skateboarding hours daily. Naturally, he does fall and he's concerned that the pump will be damaged, in addition to not wanting it hanging on him. I told him he could possibly remove it for an hour so so, if he were skating right outside the house but he says no. Maybe when he stops skating would be time to bring it up again.

Btw.. I just read an article on yahoo news or somewhere, about the increasing number of teenage deaths attributed to use of the diabetic pump. Many aren't managing it properly, unfortunately.

Thanks Dee.

Valya, My niece tried it at 17 and for all the reasons you mentioned stopped it, but now in her 20s and a nurse she loves it. I think they all know what's best for them
Dx

[Valya]

Al: Thanks for the information on those also quit Lithium and their reasons for doing so, and your neuro echoed Dr. Rothstein's opinion.

Tom and Brenda: Hurrah for slow progression and no side effects on the Lithium. I'm very happy to hear that.

At this point, I believe we're leaning towards the ceftriaxone. Keeping in mind, the patient is an 18 year old who can't always remember to take his morning Rilutek pill, the IV is an issue. We've looked at vids on the procedure on youtube, I think it's doable.

Johnny saw a local neuro (acutally in town, not hours away ) who will be invaluable for OT when necessary, someone to monitor things, etc. Friday, we meet with the UC Davis neuro to discuss/finalize any additional meds and HOPEFULLY get the results for the genetic testing.

The local neuro told Johnny today that he was in good shape, who knows what his progression will be and to ENJOY HIS LIFE. Good for Johnny to hear that.

We all know of families who have lost their children due to sudden accident, illness, etc. I think frequently of a local family in town. Their two sons and were hit by a drunk driver and killed on the highway while returning videos. Their only children, gone in an instant. As Rose said in one of her posts, there are no guarantees. No matter what his medical condition, I'm so grateful Johnny's still here.

[Valya]

Hopingforcure: Pls keep us informed on your experiences with the ceftriaxone. Johnny will be doing this on his own also, not connected with any trial. Good luck. Thanks for sharing that.
__________________

After reformatting my computer hard drive, I can now send pms/accept friend request...Wahaaaa Whooo