Doc said..your 18 yr old son has MMN or ALS - Page 10

Valya · 01-03-2009, 05:03 PM

Hello everyone. Thanks for you concern and interest. Johns Hopkins is a huge facility and we were overwhelmed but everyone was very nice. We had to wait 2 hours past Johnny's appt time but that was ok, after all, we were squeezed in early and were happy to be there.

We liked Dr. Rothstein very much. He's personable, intelligent and kind. His mind seems to move at lightening speed! He examined Johnny and said he didn't need to do the EMG because his physical exam was conclusive. He officially diagnoised Johnny with ALS,

which the prior neuros wouldn't do and spent a long time talking to us. Most of the conversation is taped.

His suggestions: Double the Rilutek to 200mg per day. He said for patients who are tolerating the side effects well, which Johnny has been, tests have shown 200 mg to be slightly more effective than 100 mg per day. As he said, 'slightly' is better than nothing. He suggested lithium or Ceftriaxone, however he said the Ceftriaxon has shown to be more effective in clinical trials and is his perference. It's drawback is, it requires a fixed IV. Another one, which I can't spell or find on internet to spell correctly, he said has also shown promise in trial, something like Talgopimal and that's sooo far off from correct spelling, so if anyone knows what that might be, please let me know so I can look it up.

We discussed the pros and cons of clinical trials. Johnny is a good potential, but almost all of them require the patient to be age 20 miminum. We are calling their coordinator Monday to confirm this.

According to the lab, all his tests results are back but they went to UC Davis and they were gone all last week. If he tested positive for the SOD1, then there is a clinial trial he may be eligible for, depending on his age.

Johnny's now experiencing weakness in his legs. This is new.

There are a few other things I'd like to add, but we have company for dinner and I'm not nearly ready, but wanted to let everyone know a little about Johnny's appt. I'll get on tomorrow with the additional and will upload a few pic from the trip also.

FYI: Gettysburg at night is creepy

Valya · 01-03-2009, 05:05 PM

I would have posted earlier but we only got back yesterday and didn't bring a computer.

wright · 01-03-2009, 05:50 PM

I am deeply saddened by all of this and don't know really what to say. I too have a son (much younger) and I simply cannot imagine what you and your family are going through. Having said that, now it's time for your son and you and your family to fight (as I'm sure you know). We all hope that his progression is a slow one and we are most certainly here for you during this journey.

Please take care

rose · 01-03-2009, 06:40 PM

Valya,

I'm so sorry. I know you had to hope for something else. You're right that Hopkins is a huge facility, sometimes its a challenge even getting a space to ride in the elevators

.....I'm glad they treated you well there, and it sounds like you got to have some family vacation time too.

What is Dr Rothstein's recommendation as far as a clinic for Johnny to attend? Are there plans for him to continue at JHH or a clinic in California? The Packard Center is the leader in ALS research, and if financially its not out of the question to make the flight every few months, I know he couldn't ask for better and more compassionate care! (and most of the time there isn't a wait).

How did Johnny react? Is he talking about it at all? And your other son, is he ok with so much attention going to his brother? I hated reading that Johnny's having some leg weakness too. I just hope he's "the one" that medicine makes its breakthrough with.

I look forward to reading more when you're able to post.

Zaphoon · 01-03-2009, 06:48 PM

Valya,

Well, at last! You have finally come to a diagnosis from the best in the field. As Wright put it, now its time to fight. Keep the faith; a cure for this thing could be just around the corner. The medical community is making progress and a cure could come at any moment.

Coping with all of this will never come very easy.

I'm pulling for you!

Zaphoon

strikeout · 01-03-2009, 06:53 PM

Valya,
I have been waiting to hear how your visit at Hopkins went. I am truly saddened at the diagnosis. Hoping Johnny can get into the ceftriaxone trial and it is successful. Sounds like the doctor thinks it is more promising than the others. Please know that my thoughts and prayers are with Johnny and your whole family.

laurel · 01-03-2009, 06:56 PM

Valya,
I am saddened reading your posting about your visit to Dr. Rothstein. I was hoping and praying for better news. But I agree with all of the caring people who have already posted that it is important to fight and not give up hope. I also believe that the answer to a cure is right around the corner. I will continue praying for Johnny and for your family.
Laurel

crystalkk · 01-03-2009, 06:58 PM

Valya,

I am very sorry about the dx.....I'm pulling for a slow progression for Johnny. We are here for you and your family.

sdsyd · 01-03-2009, 07:31 PM

Valya-

I also am sad. Please tell Johnny he can come here,too if you feel it is appropriate or would be helpful and that we're all pulling for him. Our thoughts and prayers have been and will continue to be with you.

Love,
Cindy

Landau · 01-03-2009, 07:34 PM

I've been reading this thread + my heart goes out to your son. I can't even imagine. I sincerely wish the very best for him. Just fight it with all your might.

lovelily · 01-03-2009, 07:49 PM

Oh...I am so sorry for your son, you, and, your family!

Please know that I will keep him in my prayers, for a very slow progression!

planningguy · 01-03-2009, 07:55 PM

Most of what I would say has already been said. I have been following your thread, and you and your family will be in my thoughts.

Take care,

Robert

lydia · 01-03-2009, 08:10 PM

I am so sorry to hear this...all of you are in my prayers.

Lydia

CindyM · 01-03-2009, 08:17 PM

I am sorry to hear this as well, Val. This must be awful for all of you. My thoughts are with you tonight. Cordially, Cindy

suzannj · 01-03-2009, 09:48 PM

Hi Valya,
I hoped and prayed that this news would not come. I'm so, so, sad for you and your family. The pictures you posted are absolutely beautiful and your son is quite handsome. I have to say the one of him sleeping with is guitar was . . . .overwhelming to me to say the least. I cannot even fathom what you are going through and wish you strength, peace, and fortitude.

Take great care,
Suzann