Okay,

The one thing this disorder has taught me is never, EVER get too relaxed. The minute you get comfortable, BOOM, something happens, but,

My son has had four of the best days we have seen in over a year.

He started the lowest dose of Concerta four days ago, and the change has been like someone turning on a switch. Between the CPAP and melatonin at night and the Concerta during the day, we have seen him get up and dressed by 6:30 am!! Yesterday, he took his bike and rode the equivalent of three blocks to a friend's house! He was exhausted and very hot and flushed when he got back, but he did it! He is back to eating sitting up!

I am trying to calm down, but I can't help but celebrate just a little. It has been so hard. It is not perfect - brain fog has not changed (we think his memory is permanently damaged), he still has very painful and weak legs; needs a wheelchair sometimes, his body temp is still fluctuating and the hurting, beet-red feet continue to show up. BUT he has more energy without pre-syncope than we have seen in one whole year(Dr. just diagnosed him with atypical CFS and Fibro). He can do the 3.5 hours in school w/o collapsing.

Can anyone give me any ideas about this drug? I know some of the warnings about ADHD meds, but I just want a heads up. I know by reading here that sometimes a drug will work for awhile and then start to fade. Just trying to stay realistic.

Thanks for getting me this far.

Judi

Hi Judi,
I'm so happy to hear your good news! Take it a day at a time and enjoy each good day thoroughly! Isn't it great seeing your kid act like a kid again? My son has had some pretty good days lately too.

I'm wondering why your doctor prescribed Concerta. Is that a med often used by POTS patients? What does it do to the body to help? It sounds like your son has lots more energy. Is that how it mainly helps?

I hope to hear more good news from you.

Lenna

Hi, Lenna,

I have been looking into this since he started taking it. This is what my research has taught me so far.

Concerta is a time-released central nervous system stimulant that is thought to block the reuptake of norepinephrine and dopamine and to also increase its release in the neuronal synapses.

In a paper written in 2006 by Dr. Satish Raj, called The Postural Tachycardia Syndrome(POTS): Pathophysiology, Diagnosis and Management, there is a paragraph on a form of POTS called Neuropathic POTS.

In that paragraph, neuropathy is discussed as the underlining process. Even though the discussed patients had a high circulating plasma norepinephrine concentrations, they seem to have a lower concentration in their legs. Less norepinephrine meant lower sympathetic activation.

Also this drug is a vasoconstrictor. According to a paper by Johns Hopkins written in 2003, Concerta is on the list of stimulants used in the treatment of POTS and NMH for its contstriction of the blood vessels in the peripheral circulation.

Between the two, I believe it can help some patients with POTS. I say some because POTS and NMH have many different mechanisms and not all respond to the same med or even the same combo of meds. My son did horribly on salt tabs.

We still give him plenty to fluids to counteract dehydration (he continues to run low grade fevers) and let him have all the salt he can stand. I test his bp and hr and they seem to be holding steady around low 100s/high 60s and heart rates of 90-100s.

There are side effects from Concerta. Insomnia (which he is on 2mg of melatonin to counteract sleeplessness already from other sleep disorders), loss of appetite (he is heavy, so that is not a big deal, though we watch for good nutrition), moodiness (haven't noted any more than usual) and abdominal pain (haven't noted that either, though he is on Miralax for his constipation, which causes abdominal pain). Some people can experience additional lightheadedness, and agitation, but we are on day 5 and counting with no negatives.

I know I have written a lot, but I am practically in disbelief. I am enjoying it while it lasts. He had some muscle weakness yesterday and needed the wheelchair briefly. He still needs frequent rests, but it is almost unreal after all we have been through.

If it stops or fades later, we will deal with that, but I am just so happy to see him have some strength, energy and joy in his life, even if it is for a little while.

I will continue to update here.

Keep us in your thoughts,

Judi

Judi,
Thanks for sharing your excitement - that is wonderful news. I understand you not wanting to get too excited though...but, let's keep our fingers crossed that this will at least stay this way and he can continue to improve.

I had thought that Concerta was just for memory issues...but I'm certainly going to ask my doctor about it now!

I understand you not wanting to get too excited, but remember that it's always OK (and good!) to celebrate the good days for what they are, even if a bad day follows! I'm very happy for your son, and hope that you continue on this path!

Thanks, everyone for the support! I need it so much.

All I can say is that without our wonderful developmental ped. dr. I don't know where we would be. She is behind every piece of our treatment plan; from the doctors on the team, which medicine to start and supplying supportive medical letters (just received in the mail) for insurance, general doctor and school. Of course, I wouldn't know where to start without this board.

I am looking into his pool physical therapy (also her recommendation) this week. I have to email her our updates and see what we can do for the fevers, continued leg muscle pain and body weakness/fatigue.

Rosie, I have seen these in my travels, too! I keep it on the list (along with cooling vests) of helpful items for the future. As a kid, I don't know if he wants to wear anything else that draws attention to himself. He is wearing pressure socks that seem to help, but when he takes them off, he can't stand on his throbbing, hurting legs. However, he says he does not mind paying that price at the end of the day for all the things he is able to do.

I believe we are turning a corner in treatment now. This is such a balancing act, keeping his ANS stable enough for him to have a relatively "normal" childhood. Like I said, I hope these good effects will continue for a long while. I too hope for the day without all the attention (will it ever just become habit?), but for now, this is our routine--

Early morning:

Breakfast shake/smoothie and 1 Concerta pill.
He ususally has no appetite in the morning, but will tolerate this.

All day:

Extra fluids and salted foods all day. Small meals and Miralax in mid-day. Pressure socks and light colored/weighted clothes. Test for fevers. Will add anything for fevers when I hear from doc, but for now I use ibuprophen for fever and pains (ibuprophen has salt and can raise bp)

Evening and night:

1-2 mg of melatonin right before laying down and CPAP (his setting is 5)therapy.

We keep a seat cane, wheelchair, crutches and cane in the car/house for when/if he needs them. We have rest periods (down time) throughout the day and try to schedule no more than 1-2 errands out to give him time to rest and recharge.

I think that is it. Now that he is in school 3.5 hours a day, we will see how it works. Again, I will post updates here.

Take care,

Judi

I don't know whether to laugh or cry. Such is life. Here I wanted to post some continuing good news and nope...add our regimen to the list of thing tried but no real success.

He did had five good days. I will treasure those. Seeing him ride his bike will never leave from my mind.

But on day 6, he couldn't stand on his legs. He went to school in the wheelchair. Day 7 saw him have weakness, some brain fog and fatigue throughout the day, but he made it. Today, day 8, this morning, he fainted.

Everyone, I am tired. I don't even want to vent. I just hate chronic illness.

Talk to you all later when I stop being so pissed off.

Judi

Hi Judi,

I don't want to sound weird, but my son has been having some awesome days also, and I'm holding my breath. He asked me why all of a sudden he's feeling so good?

I know my son is highly sensitive to the air-pressure (barometric pressure) and we've been having sunny days, 65-70 degree weather, with no rain, no humidity, this past week.

He's been outside playing basketball for a few minutes here and there. He comes in tired, but no abdominal pain. I am cherishing these days, like you.

So here come the comments: "he doesn't look sick" "so, is he better now?" "why doesn't he get a job, instead of being home all the time"? arrrggghhh

Judi, we are all here for you. I wish I could send you hugs ((((Judi)))

Judi, I am so sorry it didn't last. However, it seems this is so typical with dysautonomia. We have had a couple of "starts" like that with new medication - total elation, looks like it is the miracle cure, etc. and then crash! My son had a similar reaction to Provigil at one point which lasted all of two days. After that it had absolutely no effect. It would be very interesting to understand why this happens - like the body accepts and then rejects it. There's far too much about all of this that is not understood. It's also why, like you said, you enjoy every good moment while you have it and try not to worry about the next moment. Our thoughts are with you.

Melanie, So happy to hear about the good days with your son. It was interesting to hear your comments about others reactions when he is feeling better. We can so relate to that! I have found that it is actually an even more difficult situation in dealing with others when the kids are doing better because like you said everyone then assumes they're totally recovered. People will say, "Oh she (or he) is doing great, she (or he) must be completely recovered!" That is always tough for me to respond to because I don't want to downplay the fact that they're having a good day or days as I absolutely rejoice in that, but on the other hand, if I don't indicate that they are still having a lot of issues and that this is a good day for which we're always thankful, then we start all over again with trying to educate. I feel like it makes me look like someone who is trying to hold on to an illness (though I have not a clue why I would want to do such a thing! ) by not just agreeing that yes things are so much better and painting the rosey picture that those in question want to see (and so do we!).

Thanks, Cherra and Melanie,

I have calmed down some, and I can see a little clearer now. Yes, we had a honeymoon and it is over, but he and I will be okay. He is up and moving this afternoon after losing the whole morning to dizziness, no appetite and weakness.

I can relate to the questions. The kids at school just come out and fuss: "One day in a wheelchair, the next day you're walking! Just make up your mind!" I told my son to tell them that he would make up his mind when his autonomic nervous system made up its mind.

I am no longer naive about this disorder anymore. Through reading here and our own experience, I know we are in for a long haul. It is just hard because you want the good time to last.

Thanks for the hugs.

Judi

Judi -

I am very happy that you had several wonderful days with your son and sorry that he had a setback. But, it's the wonderful days that give us hope. I've read many of your posts and your son (and the others mentioned on this post)is an inspiration to me. I don't know his age but it seems like he's quite young and I can't imagine what he's going through. When I feel like I'm at the end of my rope, I think of people like your son who are going through this and it gives me the strength to keep going. How much harder it must be for a young person with his whole future ahead of him to face this illness. He is so fortunate to have a mom like you who is his advocate. I will pray that he will have many more good days and that the fainting spell he had was just a temporary setback. I know with me when I do have a good day I tend to do too much too soon and then I usually will take a few steps back. Maybe he just did too much too soon........my best to you both.

Newest update:

Doctors want to add a fast-acting stimulant to the mix. I am so afraid of all these stimulants!! But he does seem to respond.

The feeling is that after sleeping all night, when my son wakes up, he needs something in his system first thing in the morning. He will not eat that early, so I usually whip up a smoothie and give him a pill with it. Now he will add this fast-acting pill along with the slow release one, which kicks in later.

Also he is having hypoglycemic events, so now we add sweet snacks with the salty ones and fluid throughout the day. We got through school today with that. He began to be fatigued, but once he ate, he bounced back a little. It is like a yo-yo, trying to keep him up and going without tipping into fainting and crashing. Plus once he feels well, he wants to just go, and doc's orders are "NO OVERDOING IT!" It doesn't matter how well he feels. But just try telling that to a 12-year old when the weather is nice and everyone is outside!

So, next week, we start P/T in the pool, we get the wheelchair, and the school has opted for Intermittent Home and Hospital, so he will have days in school and a home tutor on those days he can't make it. This is a godsend!! I won't have to push so hard to get him to go everyday. If he really is not up to it, it is not like a day lost.

And, finally, Chronic Fatigue Syndrome has been officially added to his diagnosis, due the extreme fatigue, fevers, weight gain, etc.

Thanks, trebleclef for your reply. I think I am over the "miracle cure/treatment" dream and am ready to just have the best time in this life that we can have. Good days, setbacks and all.

Take care,

Judi

Judi,
Sorry to hear that your honeymoon ended. David has been having about 5 days of "normal". You are in my thoughts and prayers. God Bless