Aquadiva

Florinef is a corticosteroid, so it doesn't suprise me that it may cause weight gain. Does anyone know if it is as bad as prednisone and if it can cause the cushing syndrome, body hair, acne or stretch marks? I have thought of this medication for my daughter, but she has been on prednisone and suffered all the side effects and SWEARS she will NEVER take it again. I also see that it mentions that some medical conditions will interact with florinef such as UC, so it may be out for her anyway. It may be worth talking to her dr. about it, though.

I agree. My RLS doc says nothing less than 50. It is such a wide normal range, it is hard to know what one person's "normal" should be. I am currently exploring other avenues to find answers to her fatigue. Kind of grasping at straws, maybe, but hopefully we can come up with the long one! It was the POTS dr. that actually suggested testing the ferritin. I should ask him what he thinks about a 22 in a person with pots.

You asked how is her "iron", do you mean her hemoglobin? If so, that is fine.

I believe you mean "Emo". Emu is a bird! I can see people dressed in all black now rushing out to buy Pepto to get the black tongue! Never thought of that! Not that I am Goth or EMO!

My daughter had her ferritin checked. Her pediatrician said it was in the "normal" range, but it was only 22. I think the bottom of the range was 18? I know from having RLS that anything under 50 really isn't that good. I took iron supplements and got it up to 89 in a few months. I just wonder if this could be a part of the puzzle for her? She is still feeling terrible. Any thoughts?

Thanks Julie!! I haven't looked at it, but it sounds like it is EXACTLY what I am looking for, and I can't wait to read it. I just wanted to thank you first. My daughter is 17 also. She can fight the fatigue to a point, but the brain fog and dizziness are another story. She had a really good year or so of relatively no symptoms, but now it is back and we just don't want to go back to the point of not being able to function at all like 2 years ago. Oh, and by the way, DEFINITELY the synchronized swimmer--but don't forget the nice swim cap!!

My daughter still is having such a difficult time concentrating and is falling behind in school. Nothing too bad yet, but it is starting to pile up which adds a lot of stress for her. We called her dr. (pediatrician) and we have an appointment tomorrow to discuss Ritalin again. It sounds like she will be willing to prescribe it, but wants to find out more information before then about starting dose, etc. Any specific information regarding Ritalin or anything else anyone has found helpful for concentration would be much appreciated! It is really hard for me to convey to her dr. how this is affecting her. Yes, she is still able to go to school, but only because she is so determined. I don't want her to be penalized for being so strong through all of this as it would be much easier for her to just stay home and not go to school.

So far, all the college instructors have been great. Howeer, we met with the disabilities counselor at the college, and he said there really wasn't anything he could do as far as assignments, it would be up to the individual teachers. She had a note from her dr as well as a copy of her IEP, and the counselor did do one accomodation and that is that she gets to sign up for classes before they open to the general student population. That way, she can avoid early morning classes and get first pick of the options. There is also the option of withdrawing from a class for a medical reason. Hopefully we won't need to use that option as it then doesn't get any credit and she needs these college credits to count toward her high school graduation. Also, it is not allowed that a parent communicate with the college, it has to be either the student or the high school counselor contacting the college PSEO counselor. My daughter has just emailed the instructors explaining her situation, offering to get a dr.'s note, mentioning working with the disabilities counselor at the college, and it has been no problem what-so-ever. As most of her college tests are online right now, there hasn't been any issues with test taking. She did take the ACT last month, and did fine, but that was before the POTS crash. You can get accomodations for that, but it looked quite involved, so I opted to just take our chances, and it was okay.

Actually, school hasn't been the issue, we fought that battle and won. She has an IEP because of her 2 health conditions. She is a straight A student, so I had to fight REALLY hard to get it, but we did. And, each year I have to fight again. I'm not so sure I will fight for it next year as I don't even know if she will be going to the high school more than 1 hour a day. In the past, when she isn't well enough to go to school, she isn't well enough to do anything, so homebound hasn't worked for us. The teachers have been great. She got reduced assignments with extended due dates. Even her college instructors have been very accomodating. The school also let her take one semester of math and a whole year of history online so that she could make up her math she missed (she was out a whole semester) as well as have a later start time for the year. The classes she did and made up online were meant for students who didn't pass a course to get a passing grade and credit. It was very easy and quick, and we didn't feel her missing out on a year of history was going to make or break her education. And besides, she still got the "condensed" version. Also, when she missed so much school, they let her do a P/F grade so it wouldn't affect her GPA. Now she is doing college classes and only goes to the high school for 3 classes from 12:30-3. It has been SO helpful for her to not have to get going so early every morning. She goes to the community college 2 days a week from 10-11 and takes 2 college courses online. It is a fantastic opportunity for her as she gets both high school and college credit. She wants to go to med school, so the little jump start will definitely help! (not to mention it is FREE) The dr. says that the only excuse to miss school is a fever, vomiting or diarrhea. Guess it doesn't matter if you can't walk between classes, hold you head up or focus on anything. I understand the push to be as "normal" as you can be, but sometimes you just can't. She is a real fighter, she hasn't missed any days of school yet this year because of her medical issues. However, she was so bad one day this weekend, that she could not have made it out of the house to go to school. She loves school and hates to miss it. That maybe is the hardest part, I don't think that the dr.'s always believe that they really WANT to go to school, just CAN'T. I will continue to fight for her, but it is getting interesting with her age. They want her to become more independent and involved in her health care, and I honestly think you lose credibility as a parent. The good news is that she wants me to be involved with her care, so at least I'm not fighting her! Only 6 more months to a year before she can see Dr. Grubb!!! (she currently goes to a very large medical center that is known for POTS treatment, but I just think the dr.'s are too reluctant to prescribe medications to teens and push to just work through it all without it--which is great, if you can, but we would rather try medications to help instead of living life miserably)

Aquadiva, I hear you loud and clear... I have a child who is ill, but worse of than we are. It is heartbreaking to have anything happen to our children. I pray that your child will get better soon. Pots is not easy, and we all get angry at times. but most angry is fear based. Learn as much as you can. Let knowledge be your foundation and take it from there. If something isn't working tell the doctor and have the doc switch it. Your the mom use your mom intuition and help speak for your child. The only normal I feel is "abbynormal" and I know that is not even funny. I'm almost allergic to everything they put me on. So how old is your daughter because my doctor told me that most of his patients do feel better. That I'm his worst or most complicated and I think most of us her are the ones who are having the hardest times or we would be outsides enjoying the beautiful weather, at least I would. Also a few other things besides the meds, is she drinking lots of fluids, Gatorade, taking in salt the recommended amount your doc suggested for her a day. I wish you the best. I don't know if you are new or not but the "changes" DVD is very good source of learning information for sale here. Also when in doubt check it out. Make another appointment to see the doc and tell him or her what is going on. I will say a prayer right now for you and your child. May you let go of the anger and take charge of the situation and I hope she feels better soon. xxx's bellamia~ Thanks. My daughter is 17. She had it 2 years ago, and the only drug she was on was metoprolol. In a few months, she was doing really well. She would have minor ups and downs over tha past 2 years but nothing like this. I think you are right, it is fear. I fear that she will NOT outgrow this like we had hoped. But, the dr.'s are even more frustrating than the disease I think. And, she does listen to what they say and does what they say, so it isn't that. I just think that they are too quick to just say, "bum deal, this is your life, get used to it." Well, not really, but you know what I mean. Yes, I think she is getting enough sodium. We counted for lunch and lunch alone was 2000 mg. Dinner will be at least 1300 mg. She is getting plenty of fluid. She had popcorn, pretzels, and I will try to get her to have a 600 mg bagel before bed. We are very good at reading labels and making sure everything is high in sodium that can be. Boy, people look at us weird when we go to a restaurant and ask what would have the MOST sodium! lol She was also exercising almost every day, but not today, she is feeling so badly she can barely walk. I'm still working on getting her to take a short walk with me. I don't know what triggered it this time, but the first time it was a medical procedure under anesthesia, we think. I am fortunate that she is generally a very positive and compliant person. If she was negative and non-compliant, I don't know what I would do! Guess we have to be thankful for what we can be thankful for!

I am just wondering how many people can feel like themselves again with the right drug or combination of drugs. I am having a hard time watching my daughter be miserable when I think there HAS to be something out there that can help her. We thought the metoprolol was helping, but not really sure and certainly not very well. It has only been 10 days, so maybe we just have to be more patient! It bothers me when the dr.'s say that no matter HOW bad you feel, you still need to go to school and function like normal. Sure wish any doctor that gave advice on a disorder could experience the disorder personally!! And, that you should just learn to deal with the fatigue, dizziness, and brain fog! I think I am at the angry phase!

I called back today to ask a couple questions. Got a MUCH more pleasant lady this time. Maybe it was just a bad Monday, I don't know. Anyway, they said that they only have their schedule one month out and it may be 6 months to a year for an appointment. They are now just seeing patients that had their records sent about a year ago. YIKES!! Guess I should have made that appointment 2 years ago! Also, if your phone number isn't on the records, they have no way to reach you. I will call back later next week and see if they got them and make sure they have our contact information and then wait for THEM to call US for an appointment I guess.

The lady (who was less than delightful) on the phone said that payment was required up front and if insurance covered it they would reimburse you. I asked about our network and she just stated I would have to call MY insurance and ask them, that he participates in too many networks (translation: I am too lazy to look for you or help you). I looked online, and he IS in network, but she was very clear that it didn't seem to matter, payment was still required up front. Not sure if you push it if they would just bill insurance or not, but I wasn't going to go there with her. How do you know when they get the records? Do you just have to call back? How long ago was it you went? I thought that his wife passed away? I'd love to be wrong on that.

In anticipation of the possibility of not getting good relief for my daughter, I thought I might as well call and make an appointment. We can always cancel if things are going really well. I'd LOVE to be able to say she is doing so well, no need to bother Dr. Grubb! I was SO close to doing it 2 years ago and then things started to improve. I expected it to be a ways out for an appointment, but what I didn't expect is that I need her records sent to them BEFORE she can even get an appointment. Also, you are apparently required to pay for the visit up front and then IF your insurance will cover it, they will reimburse you. I would pay for it and go hungry if need to, but I also am pretty sure our insurance will cover it. That is always a bonus! This has probably been covered before on the board, but I just thought I'd share. Thanks, you all are a wonderful help to us!

Thank you, you are all so helpful. It sounds like it is a normal POTS thing and that helps ease my mind. But, I will mention it to her dr. It is just kind of freaky for lack of a better word. It just goes to show how truly fatigued people witih POTS are. I just wish everyone could understand. I think I might start using that as an example of "how tired" she really is--that even focussing her eyes is very difficult. But, she is very determined and we went for a nice 25 minute brisk walk this evening. She knows it is what she needs to do even though she feels so terrible. She realizes if she doesn't follow dr.'s orders, they can't help her get better. She has become the best nutrition label reader and really does well with the extra sodium and fluid intake. For that, I am thankful I have a compliant teen. Another thing that we just joke about because otherwise we'd cry, is that she mixes up words. I know that is a normal POTS thing. For example, at dinner she said, "Pass the Hy-Vee". For those of you who aren't familiar with Hy-Vee, it is a grocery store. She meant to say the Heinz 57. Although it is very frustrating for her, her friends are very supportive and we try to keep a sense of humor about the whole thing. Like I said, it is either laugh or cry, and we choose to laugh.

Very intersting, thanks for the tip. I think we will probably invest in a bp/hr monitor. Thanks again, I appreciate it!

Thanks, I figured we'd have to give it at least a week to know for sure. In the meantime, I am going to send some of Dr. Grubbs information on POTS and different treatments to her ped. She saw a really good POTS dr, but he is pediatric and doesn't use ritalin, I sent him an email and he responded. But her ped now (talked to her yesterday) seems intrigued by the idea and hopefully will give it a try if the metoprolol doesn't work. If not, I think I will pursue a different dr. Maybe even see about getting her into Dr. Grubb. She felt much worse on Propanolol, but the metoprolol seemed to help some before. Time will tell, I guess. I just hate wasting time! In the meantime, we will just keep up the fluids, salt and exercise. I think that is about all we can do at this point!

Oh, how I can relate with you both! My daughter, being diagnosed with UC and all the medications and tests was hard. Then, to be diagnosed with POTS on top of it all was unbearable. We all have dreams for our child. We HAVE to have dreams. It just hurts so badly when you feel they can never come true. But, hold on to them, you never know what the future holds. Don't give up! High school is SO hard with chronic illnesses. Our school has been great. They let my daughter start school 4th hour. I don't think she would have made it through otherwise. She also takes college classes, one at the college and 2 online which she gets both high school and college credit for. But, right now she is at the point where she cannot read/comprehend and has 2 papers due for her college classes. She has emailed her teacher and I hope that he is accomodating. Her dream is to go to college, med school and become a radiologist. Although, I often have my fears she won't be able to handle it, I don't dare take her dream away. Don't give up fighting for treatment or an education, and the hope for a brighter future. Perhaps our kids won't take the traditional path in life, but they can still make it a wonderful journey! It sounds like you both are wonderful parents, and that is priceless. Your kids are lucky to have you!

Does your daughter see Dr. Grubb? I agree about trying medications. If getting off a medication is our worst problem, I'll take it! I had a son on ritalin many years back, and he never got addicted or dependent. He was on it for ADD. In fact, we had a hard time getting him to take it! I think that dr.'s are sometimes too afraid to prescribe drugs because of them getting a bad rap by society. Well, as you stated, is it better to suffer or take a medication and risk dependence and at least have a quality of life? It has also been my experience that kid's pain and suffering isn't taken as seriously as an adults. Probably because a child isn't going to push the issue--guess that leaves us to do that for them! Oh, and they are SO quick to suspect depression!! That drives me crazy!! When my daughter was so sick for months on end and couldn't even get out of bed, she was being questioned by the nurse (to see if she was depressed), and one of the questions the nurse asked her was if she had one wish in the world, what would it be? She didn't say, to not have to go to school, no homework, to not have to do chores, to have all the money in the world or EVEN not to have a chronic disease. NO! She said, "to be able to go to school." I think that pretty much said it all. But, she HAS done counseling with a psychologist, and the psychologist thought she was doing great! Not to downplay the psychological impact these illnesses can have on a person, we may very well go back to the psychologist just to make sure she is still coping well.

Wow, that is a long time! What have you guys tried in hopes of some relief? My daughter was really dizzy when first diagnosed, but this round, it is more fatigue/concentration.

My daughter stares a lot when her POTS is not doing well. She will just sit there and stare at nothing. She says she is aware of what is going on around her, but it is too hard to even concentrate on anything. Like she is too fatigued to even focus her eyes. Is this typical? I am thinking it is, but also worry that it could be some type of seizure activity, and wonder if I should mention it to her dr. Thanks!

Thank you for your replies. So, do you think if they are going to help someone "feel better" they would notice in the first few days? My daughter took it a couple years ago, and then we thought it helped, but can't remember how long it took to tell. This time, she has only been on it 3 days, but feels no better, perhaps a little worse. She was in such a bad state 2 years ago, we are afraid to sit and watch it get worse and worse without doing "something". She is at the "barely functional" level right now, but isn't able to really do any homework. She takes Metoprolol 25 mg 2 times a day.

Perhaps I was too windy in my post. Can someone please tell me how long it takes for beta blockers to work if they are going to? Thank you!

I have read some posts of people who also have these disorders along with POTS. My daughter was diagnosed with UC about a year and a half before being diagnosed with POTS. I actually think that it was the anesthesia from one of her scopes that brought on the POTS. The same day she had a scope it all started. Anyway, she also has a LOT of aches and pains in her back and neck, and has had costochondritis that took forever to get rid of. I have felt all along that she has some connective tissue problem, but they just contribute it to her UC. I also wonder about fibromyalgia or CFS. There is no doubt she has POTS, as her tilt table test showed an increase of 50 bpm, and her UC has only been able to be controlled by IV medication every 8 weeks, but I think there are still missing pieces to the puzzle. Can any of you share with me your experiences with figuring it all out? I hate to keep putting her through appointments and tests, but am also tired of watching my teenager being sidelined from her medical conditions that I feel we may be able to treat. I get so tired of her ped. thinking maybe she is just over-doing it, or has a virus, or it is a gloomy time of year, or she doesn't want to go to school, etc. She is a 4.0 student, plays varsity and JO volleyball, is a junior in highschool and attends Community College, plans to go to a 4 year college, med school and become a radiologist. She LOVES going to school and just wants to be a normal kid. Although, she realizes she won't ever be "normal" again, she wants to be as normal as she can. One thing that is so frustrating is that even some dr.'s don't realize how disabling POTS is! Some just think it is something you need to put up with. I don't agree, if there is a treatment available, it is worth a try. Life is too short to be miserable if you can help it!! Thanks everyone!

My daughter, now 17, was diagnosed with POTS 2 years ago. After about 6 months, and using metoprolol, she was doing great with POTS. Had some times when she didn't feel well, but we pushed the fluids and salt, and things seemed to turn around pretty quickly. Now, she appears to be in a full-blown flare. Luckily, she is still able to go to school, but is SO exhausted and can't concentrate. She often just stares into space. This time, she isn't as "dizzy" as she was when first diagnosed, but the fatigue is terrible. I know you can all relate. She wanted to start the metoprolol again to see if it would help, but we can't remember if it took a while to help or if it was more immediate. Anyone have experience they could share as far as how long metoprolol took to start working? She has only been on it for a couple days, but so far no difference in symptoms. I am also very curious about her trying ritalin or another ADHD medication as fatigue and concentration are her main issues. It would make perfect sense to me that it would help her and I feel it is worth a try. But, I am worried to "ask" for such a drug as there has been recent events in the area of teenagers abusing prescription drugs--even to go as far as to some just getting caught at her school sharing sleeping pills with friends. But, I will still inquire. Her pediatrician about made me blow up, and had her with tears about to flow over. The dr. is pretty anti-med and didn't want to put her on "another" medication. Well, WHAT are our options? This seemed to work in the past. She did prescribe it for her, but when I asked if she heard of treating POTS with ritalin, wouldn't even think about doing ritalin without some documentation that it was prescribed for POTS. So, I did send her POTS dr. an email asking about it, and hopefully we get somewhere with him. Her ped thought maybe it was just "that time of year", she wasn't resting enough, maybe it is a virus, blah, blah, blah. I had to try very hard not to show my frustration. My daughter was very frustrated as well. With everything she has been through, she can tell the difference by now, and knows her own body! Sorry to vent, but we are at a frustrating point and do NOT want her to go as far down as she was 2 years ago when she couldn't even go to school!