kclynn

Nothing to add to the hormone theory but Dana your post caught my eye. Imagine you and your husband both have pots. 2 of my son's first cousins (boys) have pots, and of course my son.

I don't take his BP anymore because he has a hypersensitive pain reaction to BP cuff. I will take it if I truly think some symptom would require that I know. His arm turns bright red and the pain and tingling are intense. Anyway, he did complain of pressure in his chest when he tried to lay down after he started taking it a couple weeks ago. Otherwise, I don't know if it is problem for him.

We have actually had NO problem with assignments. Teachers just give them to the homebound teacher and accept them whenever. The only issue is this extended school year which we know we were told but will not happen, at least with a teacher. We will have to see if we can negotiate extended time on our own with a tutor or something. His homebound teacher really is PO'd that we are even considering pushing him through and thinks he should just repeat the year. His grades have not been good and would probalby benefit from repeating. Will it set him back in his recovery, though?? The stress of not keeping up? I have discovered that he is farther behind than I thought. The teacher has been doing what she can but he has been so symptomatic this winter that I guess we have been just working to keep his head above water and I think he will be ok in most of his other classes but the math is awful. He is so upset to repeat it, and be in a class a year behind him. I know logically it is the best but for a 15 yr old dealing with this and school and missing out on everything it is just one more thing the D... Pots is taking from him. Looking back at this a couple years I know it will look a whole lot different and maybe not so bad but getting through the NOW stinks!

My son is on Midodrine for a couple weeks now. It is helping some (not as much as I wish but that is another post). Sure can tell when it is almost time for another dose. Dose the Midodrine have an cumulative effect or is it strickly dose to dose. And if you can't get out of bed in time for your first dose do you just adjust your doses that day? I know he shouldn't take it later than 6 and is supposed to take 4 doses. Would it hurt if he got up late to only take 3 that day. This morning he is in bed with nausea from pushing too hard the lat couple days. I know he shouldn't lay down when taking the medicine so what to do?

Julie, The 504 just states extended time for assignments and modifying and shortening assignments. It isn't too specific which I suppose could be a good thing, depending. We have to be careful. I have been really happy with the efforts that have been made up till now by everyone and don't want to negatively impact that, we have to work with these people going forward for the next 3 years (or so). I don't think this is because of people not working hard enough for us. The problem I think is with the higher district rules. Our school district is large and they are very adamant on not making exceptions or perseved exceptions (even if it is a bad rule). I think at best we will end up with an extended time but no teacher support. If I have to live with that, I will, and hire a tutor or what ever. The added stress on him of repeating a 9th grade class could result in him doing worse. Logically, he would get the concepts better if he repeated. What to do... This homebound stuff hasn't been very good. There is such a lack of instruction. We get a teacher one hour a day for 5 days a week, but impossible to teach everything. The teacher says he has to work more independently, but with brain fog, that isn't happening and he barely gets through the time she is here, after which he has been exhausted. Things are "a little better". He started Midodrine a couple weeks ago and that has helped clear some of the brain fog and a little more ability to stay upright. Don't know how long that will last and I even hate to say anything about that to the school because it is far from a miracle cure, just a little better some days. Maybe they will have some good answers for me tomorrow and I will have worried for nothing.

Just wondering. Our advisor has said multible times that they would extend his school year to complete work but now the special ed coordinator is saying that isn't possible. We have a 504 and there isn't much on it except extended time to complete work and modified assignments which they have been doing. Math is the issue. We need more time to complete everything and they are saying repeat the whole year? I am so mad. All that work down the drain and repeat a whole years worth of work. Stinks. Just wondering what other schools do. We are in MO.

A while ago I was listening to a podcast about low carb dieting. They were saying that when you cut out the carbs your body is used to and there is inflammation in your body from those carbs your body will react negatively for awhile (couple weeks, not that long). THEN, you will start to feel really good. It does sound as if that is what you may be experiencing. I will see if I can find that info.

You might try looking at the Paleo Diet. I do not follow it but have a good friend who has her whole family on it. The thing is, no grains. They eat free range meat, so not corn or grain fed at all. Other than that I don't know that much about it and not saying you should follow this diet BUT it could give you some really good ideas and recipies. This must be incredibly hard for you.

I am curious because it seems like my son's youth minister has no time to make personal visits. My son has a strong faith, but has a hard time getting to youth meetings because of the stimulation and noise. He absolutely can't go to regular services for the same reason, only they are louder! I have asked my son's youth minister to visit and call. Well, he did call once, very short. None of this surpises me because even before this the youth minister seemed to have difficulty with one on one conversation. I have sat in on the youth meetings and he is great there, approaches those hard teen subjects, kids are excited, they pray, they sing... But when my son needs personal ministering and support, nothing for him. The kids are great, he loves his youth group and forces himself to go occasionally, which is good for him. We wouldn't dream of changing. They did do a skype once and that was good. I have a hard time complaining but what I can do is maybe submit ideas for improvement, if anyone has any or experiences?

Yes, my son's senses have changed also. There are some sounds he can not stand! He can play his stereo loudly, but the TV has to be very soft. The sound of a can top being popped can make him writhe in pain. He smells peanut butter cookies or dill pickles from time to time, both of which he likes and just makes him want to eat some. But if I burn something it makes him pysically ill and symptomatic. He was telling his sister she stinks (don't you love teenagers!) but she didn't. His taste as been off from time to time, also.

My son was put on Midodrine 4X a day and Florinef at night last week. He has been having a little chest discomfort. I know it can take a little while but wondering how long it should take to start feeling better if it is going to help? Thanks!

Corina, I apologize if I offended you. I saw the article and it rang so true for me, yet made me smile that someone out there "gets it". Do I have dysautonomia? No. But my 15 yr. old son does so I hang out here because I have found some other parents here with teens who struggle with this. My son has POTS and NMH. We have been to a GP, several neurologist, an endocrinlogist, couple cardiologists, numerous ER visits where we were ignored, couple ambulance rides (they were very nice and professional), Mayo twice and saw the recently discussed Dr. S (didn't go well for us as she doesn't treat teens and was dismissive, as someone else said here). Recently traveled across the country and found a wonderful, wonderful Dr. who I have high hopes will finally be able to help us. I do suffer from Fibromyalgia, and other health issues, aside from the intense pain of watching my boy watching his carefree teen years crumble to dust. You could look up my past posts and verify all of this. Guess that is all I'll say. Seems a lot of people enjoyed it.

http://home.bluecrab.org/~health/hm.html Came across this article. I know it will ring true for so many of us.

What does this mean? If this is not based on clinical evidence isn't it just "opinion"?

Serena, My SIL's family lives in a town of 3500 and weren't connecting with their church. They drive every week 30 miles to a larger town where they found a wonderful church family and they kids have now all grown up in this church and active in the youth ministry still as college kids and graduates. It will work out

Thinking of you, hope things went OK today. Has your daughter been able to be in school most of the time? My son does homebound. He has an elevated hr but I haven't seen it go above 148. That must have been so scary!

Serena, My heart breaks to hear your son was treated so badly by a church youth group. There are many supportive churches, just reach out and I believe you will find one. My son (15) had participated in youth group weekly for 2 years when he got really sick this fall and stopped going. It really hurt him to not go because he loves it. It wasn't long before they stopped texting and never really asked about him. I had talked to the youth minister but he never contacted my son either. After about 2 months I went and talked to another mom and the youth minister again and then everyone was contacting and encouraging him. The youth minister did not however. Last month I literally told him he needed to call my son and he did - once. Sigh... I hope your son is able to connect with a new youth group. Does he have friends from school he can ask where they go? Christy, So sorry to hear Cody is still not doing well. J has been having horrible trouble with his stomach. He has improved a lot these last couple weeks. We started making him move, literally supporting his entire weight to walk to the front door and back several times a day. Earlier this week he went to a birthday party for a couple hours. Yay! The last few days he is crashed and not so good.

Does anyones heartrate stay pretty normal during exercise, but is tachy, around 100 when resting or moving a bit, and jumps when just standing? I think this is because my son's muscles are doing their job in helping to circulate the blood when he is exercising. Just checking...

Dani, I would think the impacted wisdom teeth could definately be part of the problem. I also second the neti pot or saline cleanse systems. Honestly, when you are done you will be able to breathe better! For Potsy people it could also help reduce viruses.

We have always liked my son's current Dr. but I feel like we have worn her out. She doesn't get back to me and answer my questions always (when I email). I can force some answers by phone but I think she hasn't really interested in spending much more time on us. She is really busy. I am wondering just how you go about it. I really, really hate the idea of dragging my son to more Dr. who may not be a good fit for us (or be down right rude or have attitude about his condition). I know that happens for a lot of people and that makes you feel bad but it is the worst for a 15 year old. Should I ask for their nurses and quiz them on the Dr. being interested in a patient with POTS?

Hi Christy, It would just be so great to not have to drive 8 hours. It is hard on him and hard on all of us. With my daughter we have to decide if she will stay home with friends (no relatives here) or come with us. My husband has to take off work and of course the expense.... Don't get me wrong, all worth it if we get the right direction but I am not nessasarily happy with where he was diagnosed. Some say we should go to Ohio but that is a 2 day drive or expensive flights, and not at all sure he could even handle flying.

I know a lot of people travel for diagnosis but then try to work with thier local physician because it can be difficult to manage symptoms long distance. Does this work for you? Do you see a GP or some other specialist? My son's pediatrition doesn't always respond and he as he is almost 16 I am thinking of making a change. My friends daughter (she has juvenile arthritis) sees a Dr. who is an internist and a reumatologist, and has an interest in, lupus, pain mgmt and fibromyalgia. Would you think a Dr. like this might do well with autonomic disorders?

I am really envious of people who have Dr. locally they feel they get good care from. I hear this a lot about it being hard to communicate with the really good Dr. (and it is understandable that they have so many patients). We are not really happy with our current situation but he has been diagnosed and now we need support to manage it. Not sure we gain a lot having to travel 2 days to see one of these Dr. and all the hardship of travel on my son. Anyone know a good Dr. in Western Missouri?

My son's Dr. took him off. Said it was counterproductive for him. That said it seems to help some people so I think maybe try it at a low dose. You have to give it time to see how it works, though, takes a few weeks. She also wrote a script for nortriptyline which she thought has fewer side effects and might accomplish the same as they amitriptyline, but we just decided not to use it for now.

He has had liver enzyme levels. He has not had a lot of medicine. Small amt of amimtriptyline which he is off of and he started mestinon but very low levels, taking b2 and magnesium. He has been a bit better. I thing this is connected to the other jerks and "convulsion" activity because they have all just snowballed at the same time.