kclynn

Brye and K's mom, So glad to hear K is improving. You are such a wonderful Mom! I think my son was unique in that Dr. A stuck him on large dose of Midodrine and Florinef and he has done well without making any adjustments. He does have nausea still, though overall it is way better, but still resorts to the Zofran occasionally. Brye, My son had horrible itchy scalp but chose to stick it out to see if the Midodrine would help. He is so glad he did. He is not one to talk a lot about symptoms but the progression was awful itchy scalp for 2 to 3 weeks, then it was still itchy but more tolerable and now it is gone and has been for awhile. That is about 3 months. Last winter he couldn't stand up, practically had to carry him to the bathroom (my husband would go in with him), spent many nights sleeping on the couch because we couldn't get him upstairs, missed his entire freshman year. Today I am waiting for him to get home from Church camp and I have heard from him a couple times that he has just had an amazing time and was able to keep up and swim and go tubing and boating! I wouldn't have believed it possible so hang in there! Doing my best to live for today and not worry about tomorrow.

I wish we would have been able to get into Dr. Fischer. We were stuck with an adult autonomic specialist who in the end wouldn't treat my son and It may have saved us a lot of heartache. We asked Dr. Renaud to refer us to him and she poopooed that saying he wasn't even a neurologist. Sigh. Like I care, just want good care from someone who knows. I don't know, we didn't push it, maybe we should have, but we were pretty disillusioned with Mayo at that point, so now we fly to the Dr. instead of drive

Christy has a good point. You should also go for the IEP if you only have 504 (do you have one?) Even if you have had good luck with your current school, everything changes next year, and then it would already be in place. And it doesn't sound like things were going so well. Maybe try one on line class. They really do have a lot of interesting ones. You could try an elective.

Hi Mason's Dad, So good to hear of forward steps, no matter how small. Once you get the right combo of meds it can make a huge difference but can take awhile to get there. It took my son a couple of months to really feel better. Christy and I compare notes on our boys quite a bit as they are about the same age, though they have been fighting the pots longer and dealing with the school system longer, also. Our school has discouraged us from the moVip and since I don't yet know what this school year will bring, I agree. My son also got way behind but I blame it on the fact that the school let him miss 6 weeks before getting the homebound started so we were behind at that point and fought it all year. He has to repeat algebra and one semester of english (there was no way he could have comprehended Romeo and Juliet). But our homebound teacher was generally good. She worked hard with him. We rarely cancelled and it kept the expectation of completing at least a little work daily alive. Somedays they just talked about the dog Anyway, that was our choice and everyone is different and you know what is best for your son also. If he had done the on line classes last year it probably wouldn't have worked for him. I have to meet with the special ed people yet this year so I am not sure how we will handle things coming up, but I think he will attempt full time. If he crashes really bad I will go for the IEP so there is a chance of him continuing into summer. That would have helped him this year and is the only way we can get assistance in the summer. What ever you do, try to keep him involved, get him to school for lunch if you can. Request a different tutor if you can. The school can offer you lots of services, you may need to look into getting an advocate.

We didn't have to pay anything up front. They accepted our insurance (and it was a high deductible plan) I just got done paying them off from our visits in the winter. We saw a main Dr. (pediatric neurologist). She decided who to send us to, then we followed up with her. We were seen at Rochester so maybe other locations do it differently. If you have these concerns call them to get your answers and also if you think of something else, I would call them again. I talked to the appt. person who was super nice a number of times.

I know how difficult this is, my son has had acute phases of nausea where he ate almost nothing for days and yelled at me if I tried to get him to eat. As Christy said, milkshakes or something. Can she choose and they have calorie guides? If so as others have said, maybe outside food could be brought in as long as they can note it. Yes, the celiac testing might be a good idea, also.

Do they not have records of her growth patterns over time from her family Dr. Can they give you specific numbers that point to their diagnosis? Has she always been on the very slim curve? Could the hair loss be from the stress of the situation? Did the Dr. from Baptist plant this seed? What does Dr. Kantner say about this? I looked back at your first post. What was her weight at that time and had she been losing any weight prior to that? The only other thing I can think is that is could help her to gain a little, so that in itself is not a bad thing. If you can get her a little stronger then other options will be open to you. She is in a good place and she should be getting great care from the nursing staff as well as dealing with any potential crises. Take a deep breath. A lot of people are rooting for you. My son started at Mayo which is supposed to be such a great place - not for us. After two visits we changed and have had much better success upon doing so, though we have to travel halfway across the country to do so.

Hi Christy, One of my boys more consistent issues. Comes and goes, can last for weeks. I have found I can usually force him to dring the Kelloggs Chocolate Protien shakes and nibble on protien bars. Have him make a list of what he thinks he might be able to eat a little of and make it available. He used to get mad at me for always trying to bring him food. Mostly I give up and just let it go. Eventually he is able to eat something.

Glad to hear you are there. I know you are relieved.

All the Drs. push salt, salt, salt., water, water, water. My son doesn't seem to be able to tell the difference of when he has lots of salt or when he doesn't. He does drink lots and lots of water, has for the last few years because of intense thirst. I am pretty sure that water just went throught him and he started to really improve on the florinef and Midodrine. But the salt? He can do some days hardly eating and feel pretty good, other days he eats more and gets a lot of salt and even salt tabs, but feels bad. On days when he eats hardly anything and feels bad I try to supplement his sodium in his water, salt tabs (after he at least drinks milk or eats a little yogurt not empty stomach) but he never feels any better as a direct result of salt. Anyone else wondering about the salt thing? Not sure quite what to think of it and been wanting to ask here for awhile.

What was her starting rate? And others have be diagnosed even it the increase wasn't 30/40 based on ALL symptoms (syndrome) Regardless, the important thing is to get her the proper treatment whatever it is. Did the Dr. at Duke tell you she has POTS?

Sounds like that borders on malpractice

Thanks for all the replies. Autumn - That is how Everything is for him which I think makes it even harder for a teen to "pace" themselves. Most teens want to go flat out, sleep late, do over again.

yeah, I suspect it has more to do with exceeding his available energy level, increased temps, and pots ups and downs that happen no matter what you do

I know it has to be tapered. He takes .1 so I think that is not a real high dose?

My son missed his Florinef yesterday. He has been doing really good, quite active and pushing himself a bit. Today I couldn't get him up and now that he is up he is really lethargic, but I did make sure he took his florinef on time about 9 AM today and I was wondering how much effect missing that 1 dose could have or if it us just the "normal" ups and downs of POTS.

I just tried to find the post that he isn't accepting new patients. I didn't see anything back to april, I did see though that he doesn't accept pediactric patients. So maybe that was it. He just moved his practice to scottsdale mayo this year, so I think he would still be seeing patients. I'm seeing docs out there right now for CVID and gastro problems. I already see a neuro in phoenix, but was thinking I should see goodman too. I'll let you know if I have a problem getting an appointment. It might be a bit though I'm waiting for lab results and f/up appointments. Thanks for clearing this up. My son is 15 so that is probably why it stuck in my mind.

Is it the movement or the mental change in activity. My son always had symptoms like jerks last winter for example when he was watching TV then he would look up to talk to you. It is always worth it to see if you make things even a little better. Good Luck!

YES! Hope great idea, that is what you should do! THEY may say bring her or call your Dr at that hospital. They will obviously understand your daughters condition after all those recent tests.

I'm with Lieze, can they not talk to the Dr. at Duke? Sometimes some Dr. are so full of themselves they don't do right for the patient? Can you life flight? I know that is extreme, but... Is there a closer children's hospital? Prayers going out to you and K!

We saw Dr. Renaud with my son. I can't speak to how she might help you but this is our experience. We liked her, she is focused, listens, answers questions. She took quite a bit of time. I had a list of questions and was able to get through them. She is not real warm but she does seem to care and her staff was great. She immediately scheduled my son for autonomic tests after looking through all his records and seeing that just about everything else had been eliminated. That is what I wanted because for various reasons I just knew this was what he had. So I would say our experience with Dr. Renaud was good. My son also has issues with jerks and convulsions which she nor the Autonomic Dr. (Sandroni) do not recognize as pots symptoms and we kind of hit a brick wall with them. Sandroni refuses to prescribe meds for pediatrics (he is 15 so not a little kid). So our experience was mixed, and while Dr. Renaud was ok, with out the guidance of an autonomic Dr. the effort was wasted. I believe Mayo has some good Autonomic Dr. but would not recommend anyone take their kid to see Sandroni. There would be so much more I could say on that one but won't here. I will also say I think some on here have see Sandroni and thought she was fine. As soon as we went to Dr. Abdallah in Reston who actually started a treatment plan, my son started to improve. Why did you choose Dr. Renaud? Someone wrote recently Dr. Goodman was not accepting new patients.

Yes, it is like Libby said. They also look at the constellation of other symptoms when the increase occurs. People can have larger increases in HR but not have any other symptoms.

Brynne, Good for you to stand up for yourself! You will get better in time and I think the attitude you have will get you there! I understand you get down, everyone does, but you have to fight and pick yourself back up and do what ever it takes, including making changes to your medical team if that is what it takes. Can you get to Reston? Dr. Abdallah has helped so many kids and has an understanding of this condition a lot of so-called "pots doctors" don't. Go see him, if only for 1 appt. and then decide. He was able to get my son back on his feet. He didn't get back to school but he was able to finish most of his classes which wasn't going to happen and this summer is out doing things with friends and looking forward to camp. He is 15. PM me if you want.

We see Dr. Abdallah in Reston and it only took us a month to get in to see him in March. He was able to fine tune my son's diagnosis, and prescribe the appropriate medicine. His office is also not that great to work with. I actually hear this over and over about the Drs. being good but their offices are difficult to work with. Can anyone answer why? Is it just inherent to the situation of trying to work with a Dr. long distance? Luckily for us we have had limited need to consult them as my son has steadily improved since he saw Dr. A who is a very kind and caring man. Hopefully you can find someone who you can work with and then who can work with your local Dr. if that is possible.

The info on side effects does list blurry vision. Stay calm. I hope they do call soon. If she is having pain and/or redness, dialating of her pupils, then that is appparently more concern. I would ask if the body adjusts to the side effects after awhile. My son takes Midodrine. He had terrible side effects in the beginning but wanted to give the medicine a chance. He now has no side effects and enjoys the benefits because he stuck it out.