Christy_D Posted October 9, 2011 Report Share Posted October 9, 2011 We got back from the Mayo late Friday night for my son seeing Dr Fischer. My son was diagnosed with POTS 2 years ago in Cleveland, after looking for a diagnosis for over 2 years. This has been a roller coaster. He has felt good, then bedridden, up and down. But Dr Fischer thinks he is in recovery, but things are hindering this. This was great news.His autonomic tests showed his nerves were working fine, sweating, etc. His TTT showed some orthostatic intolerance, but not POTS(hopefully it wasn't just a good day). He is extremely deconditioned. Over time he has had many symtpoms, but the only ones he is left with is nausea and tiredness. This also indicates recovery, most symptoms gone. His iron reserves were depleted, which can cause nausea and tiredness. Hopefully iron pills will take care of this problem.Dr Fischer also said that when someone is so sick for a long period of time, your brain continues to think it is managing a sick body, even if you aren't sick. This also happened to my mother in law. So, we have to break the cycle and not let him lay in bed all day every day like he has been for the last couple of months.This isn't to say he is completely healed or cured, but we can get him more functional by getting him out of bed and exercising. My son is completely motivated, he wants his life back and would love to go back to school. Every time we travel, he has a good week, so it shows when we get out of his home routine of laying in bed he can be more functional. It amazed me, too, that while in Minnesota we had a lot of free time one day so we went to the Mall of America. My son walked from top to bottom, the whole mall and didn't have a hard time.We are going back to the Mayo for a 3 week Pain rehab program specifically designed for teens with POTS. This might just be the jump start he needs physically to get back on track and to recovery.We are so excited about these results, and crossing our fingers that things continue in this direction.Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 9, 2011 Report Share Posted October 9, 2011 I'm excited too!!! Very encouraging, Christy. I will be curious to see if the iron helps. A rehab program is a great idea. Mack goes though waves of exercising (skateboarding, cycling), then not for weeks.months. He is WORSE when he neglects exercise. I think he's finally grown to realize it's a necessity for him. When do you go back for rehab? Is this something he can do at home?Hugs-Julie Quote Link to comment Share on other sites More sharing options...
abnel Posted October 9, 2011 Report Share Posted October 9, 2011 That's fantastic news Christy. If he's in recovery, can they wean him off his meds (listed in your signature), or is it still too early to say? I've always wondered what people do when they're in remission/recovery - whether they have to keep being diligent with meds or whether they can be medication free until the next relapse. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 10, 2011 Author Report Share Posted October 10, 2011 Julie,We go back for PT/OT/counseling Oct 17th for 3 weeks. They definitely want him exercising at home. They have him start the day with 25 squats and 25 curls with 10 pound weights. Then they want him doing aerobics starting off at 10 minutes a day and gradually increasing to 30 minutes. They don't want him overdoing it and crashing.Lotusflower,We are stopping some medications/supplements. We are stopping midodrine/fludrocortisone/CoQ10 and L Carnitine and starting iron supplement. The doctor wants him to stay on the Cymbalta and Doxepin for now while he is still deconditioned. The doctor said he will still need those for now. So that is good news. I don't like giving my 16 year old so many drugs.Christy Quote Link to comment Share on other sites More sharing options...
lieze Posted October 10, 2011 Report Share Posted October 10, 2011 Awesome news! Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 10, 2011 Report Share Posted October 10, 2011 Wow, i will be very curious to see how this goes. Makes me nervous to see him stopping meds cold turkey (maybe titrating down?) BUT very encouraged also. I hate that Mack is taking so many.....with no end in sight. You are being supervised by the best. I will keep your son in my prayers that all goes well. Keep us posted. Julie Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 10, 2011 Report Share Posted October 10, 2011 Hi,That's very encouraging to see that your son is progressing. Quote Link to comment Share on other sites More sharing options...
paona Posted October 10, 2011 Report Share Posted October 10, 2011 We also saw Dr. Fischer back in May of this year. We also had a positive experience. We stayed at the Ronald McDonald house as we needed access to kitchen facilities and a fridge. While there my 16 year old daughter met several adolescents that were part of the rehab program. I think for her just meeting and talking to others helped her understand the importance of following through on the program set-up for her. She heard their stories and how limited they were before starting this program. I think one young man had been hospitalized for a few months and arrived in a wheelchair. The first day of rehab they had him up and playing basketball. We met these kids after they were about 2 weeks in the program and they felt very positive about the progress they had made. Since I already suspected my daughter had POTS I had already started some of the suggestions before we had the diagnosis at the Mayo. We also had been trying to help support our daughter through numerous symptoms since she was around 7 years old. Looking back we now believe this was all part of POTS for her. Like your son my daughter was also iron deficient even though she has a diet rich in iron. Some test also indicated that she was very out of condition for a girl her age. My daughter already was on fludrocort to try and bring her low blood pressure up. Dr. Fischer added metoprolol tartrate (beta blocker) and my daughter immediately lost the nausea and gained an appetite for the first time in 2 years, Additionally other symptoms for her left or lessened. She was instructed to have water at her bedside and take the metoprolol with 8 ounces of water and stay in bed 10 more minutes. Then she also was instructed to do the exercises that your son has. She has pretty much worked up to 30 minutes of aerobic type activity, 6 days a week, and usually gets her 12 cups of water, and measured salt each day. Since parts of the program were already in place for her, they just bumped up some expectations for her, and they didn't suggest the rehab program. We hope to come down on her fludrocort but for now it was agreed it gave her some relief, and would be left as is. She has taken numerous vitamins for many years and she remains on those as well as a laxative, but that dose is lessening. She remains on a special way of eating due to her unusual allergies. She still has several triggers that make some days worse than others but has just sort of adapted since she has had much of this since very young. We are still working on the concept of owning more of this without us (parents) managing it. The Mayo suggested weekly meetings talking about what goal she could take on for the week. Basically she does well with short term goals. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 10, 2011 Author Report Share Posted October 10, 2011 Paona,It is great to hear the kids were doing well in the program. I was told several stories of kids worse off than my son going back to school after completing the program. We are also now starting to push him to 'own' more of this. He has always relied on me to give him meds, try to get him out of bed, get up for the homebound teacher, make sure he drank enough(which he wasn't/wouldn't),etc. He has really never taken an interest in knowing all the details of the illness, wouldn't join the dynakids site, etc...After this trip to the Mayo and the doctor telling him directly he can get better, it has finally motivated him to take charge (somewhat anyway).Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 10, 2011 Report Share Posted October 10, 2011 Yay!!!That's what all of our kids need- hope. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 10, 2011 Report Share Posted October 10, 2011 Hmmm. I just posted an article of Dr. Julian Stewart's where he did a study showing that more than half(?) of his study orthostatically intolerant adolescents had low ferritin levels. And, here we have two in this thread.Anyway, that is great news! Definitely keep us posted as his iron levels come up. Curious to see if restoring the levels has a big impact on his symptoms. Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 11, 2011 Report Share Posted October 11, 2011 Sue, where is the study, I couldn't find it. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 11, 2011 Report Share Posted October 11, 2011 KcMom, here is a link:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2475592/?tool=pubmedI posted it in a thread talking about "Are our CBCs normal..." or something like that. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 11, 2011 Author Report Share Posted October 11, 2011 Sue,I read the article and this gives me more hope that the iron supplement is also going to help with my son's recovery! This forum is as always so informational.Christy Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 11, 2011 Report Share Posted October 11, 2011 Yay for good, hopeful news! I managed to have a (sadly short!) period of recovery after going through a 4 week pain management and physical therapy program. It was tremendously helpful, and I still use some of the strategies. I have other syndromes and disease gumming up the works these days, but I can't complain. After all, I was even able to go back to work for a few months, which is where I met the man that will be my husband 10/12/2012! (And I can not imagine how I would manage anything without him!) As others have mentioned, I am a bit worried about stopping all his meds, but also as others have said, he could not be under better care. I know a lot of the kids rebound far better than us adults do! I am quite sure as a parent it must be a HUGE relief to get such good news, so congrats!Sandy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.