kclynn

My son started Florinef and Midodrine end of March. He had had SEVERE brain fog and cognitive issues and everything is so much better now. Also, my son was DX with mild ADD several yrs ago and had migraines, dizziness, momentary black outs and progressive pots symptoms in 09 following several viruses and a bronchial infection. Prior to that he had episodic fatigue and flushing and exhaustion none of which would last very long then he would recover. When he was a baby he had lots of croup which is supposed to subside when they are about 4 but he had them till 7 after which they said he had viral induced asthma.... You wonder where the beginning was sometimes?

Petunias mom, I wonder how your daughter is doing? We started Midodrine at 10 mg 4x a day. Seemed to be working, then a couple bad weeks, then steady improvement to where my son is doing better. Long way to go, but he is up everyday and functional for a little to a lot of the day, much more than he was. The on call Cardiologist we called the first week said he should have had a more immediate response but I think that was not right. It took time for him and our experience is good. I would say stay with the midodrine. We did also start florinef at the same time. Our experience is that effectiveness of everything with POTS is judged over time, not day to day (unless there was some truly serious side effect). Also, for my son, everthing is delayed. So if my son got up grumpy and irratible then maybe it was because he over did the day before. This is getting clearer for us to decipher though since his symptoms are much more stable over all. During the winter when he couldn't even stand up or think and had constant seizures there was never any time we could say we did X and it resulted in Y.

Noreen, In general his primary likes Zyrtek as first line recommendation. With my son's irritability and adrenaline issues she thought we should switch to Clariton OR Allegra. Couldn't find the allegra in generic so went with the generic Clariton. I had the same question about timing. I guess it would be good to know how long Zantac stays in the system. Maybe it would be good to give a half dose AM and PM. I know the Clariton is supposed to be 24 hours.

Ram, not at all. I said two Dr. had said my son probably has some mast cell involvement - we are working on stabilizing the POTS symptoms. They don't want to add too much too soon, as it should be otherwise you don't know what is working or making things worse. His Dr. suggested starting with the Clariton and Zantac. No harm in asking many others who have taken the meds WHEN they take them. I see the purpose of the forum to exchange information and then discuss that with your Dr. How many people learned about pots symptoms, then went to their Dr. and were finally diagnosed? Also important to weigh who the information is coming from. Certainly if I started advising people on Mast Cell issues based on things I have read, you all should move on pretty quickly But is those who have seen Drs. who are known specialists would certainly have a bit more knowledge to share. The whole point is to discover what to ask your Dr. about, isn't it? That is what I always thought. Oh, and Jared's post talked strongly about seeing a specialist and getting diagnosed and never encouraged us to change or add anything (in fact she said don't change) and neither did Julie's and I thank them both for what they did share. Jared suggested some non invasive testing he might have. Where did you read and diagnosis by internet? I think your post was a bit inflammatory.

Still working on trying to get my son's pots symptoms stabilized, and that is going pretty good. I am believe he has a mast cell component to this and both his GP and pots Dr. agree. He flushes, massive sweating episodes, rashes that come and go and big red welts when you lightly scratch his skin, digestive issues which I know could be pots or mast cell. We will get it all addressed but the Drs. want to go slowly in adding meds. Right now as I said his symptoms are steadily improving and even his sweating and other symptoms have become less frequent. He has been taking zyrtek but GP felt clariton or allegra was better for him. Zyrtek apparently can make some people irritable and with my son's adrenaline and other stuff we don't need that. She also said to add Zantac. I see some people alternating and was wondering if there was a prefered time to take these. He has been taking Clariton in the morning and Zantac at night for the last few days. Also, I used the brand names but we take the generic. Are they just as effective if he doesn't have any reactions to them?

I thought the urine tests for MCAD were supposed to be for 4 hours following an episode?

His BP dropped later into the tilt table test, but he also has had major, major memory issues (seriously his homebound teacher compared him to an alzhiemer patient) and those are so much better also. When he gets tired or super stressed, now it is more like can't find words, or has trouble with recall, but it is all better than it was. The kid could not get off the couch a few months ago. We really couldn't catch low BP very often, though, so I am wondering does it drop low then raise itself but cause the cascade of symptoms? His normal BP would be a low normal 98/105 over 55/60. BUT a few times I caught it at 88/39 during some of his sweating/flushing/so fatigued he couldn't move his big toe episodes, which I reported but no one paid attention to

My son takes .01 Florinef, and 10 mg midodrine 4 times a day (sometimes 5 but usually doesn't get up early enough to get in the 5th dose). He is better, does more, has bigger windows of cognitive functioning, lasts longer and doesn't crash as long. What I though was curious was that last time we went to the Dr. they did a poor mans tilt for 5 minutes to check his progress and the numbers weren't really any different. But in addition to the above, in the evening we can tell when the meds wear off so it is obvious it makes a difference.

My son has this also except his are usually evenings! Sometimes he can spend so long in the bathroom, an hour or more. He is miserable. He will often have a flushing, sweating, tachycardia episode while in there, too. This has actually been one of his longest symptoms and started when he was about 10, though they were infrequent and the Doctors just shrugged their shoulders and didn't pay any attention, but they didn't see him when he would come out He is often very red when he is done. I tried adding miralax (moderate dose) but it doesn't seem to have any effect.

Thought I would update since this happened today. My son went to a youth group picnic. It was around 50 so didn't worry about overheating. He apparantly was super active, catching football, playing frisbee, and just felt great. Well, he also forgot to take his last dose of Midodrine (don't know if that had anything to do with anything). His pots has always affected him alot after activity but if he is going he will be able to push himself for quite awhile. Anyway, his feet HURT bad tonight. He had trouble walking... FYI..

I am not sure I have a lot to add and others may have more helpful advise but my son (15) has a heightened sensitivity to pain and really always has. Since the fullfledged POTS reared its ugly head we have noticed it even more. He will have a painful thumb or wrist joint, or his knees hurt or his back hurts or all the muscles across his back hurt. For him the pain is transitory, and may last a week or two then gone, then come back. OTC meds don't help (I have fibromyalgia and OTC or any pain meds never helped me either.) On the other hand, he runs! That is great! Maybe he needs to look into shoes that have more cushion or if he can be careful of the surfaces he runs on. Something that might help is ice frozen in a water bottle and have him roll it around.

We had a storm last night and my son had terrible adrenaline rushes everytime he saw the lightning or heard/felt the thunder. I could tell he was really suffering. Anyone have suggestions? We try to distract, breathe, but that is so hard when the thunder shakes the house. We had a bad storm with damage a couple weeks ago and his reaction is worse since then.

There are other meds besides Midodrine, too. If you are that affected with side effects, maybe there are other meds you can try.

I say it is totally worth it. It really is only a couple of steps. I think we get so used to instant results that we forget the value of things that we have to wait for. Debbie who runs the website works really, really hard to make the site a safe place for the kids and a place where the kids will be supportive of each other. There are more girls just as there are more girls with POTS/dys but there are more boys now. He doesn't have to be chatty to learn about how to deal and manage his condition. It was invaluable to my son to know that there were actual other real kids out there with the same thing and feeling the same way about things as he does. In this day of cyberstalkers I feel better knowing that the list is so well monitored. I think you would be doing a great service to your son to give him this opportunity and if it isn't for him then that is his decision, but it can be a really great thing. You can tell them when the best time to call is so don't worry about if your son isn't there and they are really nice so you will enjoy talking to them also They also have a parents forum.

We ran into this as well, and I think I may have it a little figured out. You didn't say how old your daughter is but I will assume she is a teen. There is a difference in prognosis between teens who get POTS and adults who get POTS. It could be that your doctor was simply trying to verbalize this. The Dr. (from Mayo) did not want to call my son's POTS a dysautonomia but didn't explain why though she was not good to us in communicating in general but that is another long story. Some Dr. with less understanding may be thinking of Dysautonomia in the sticter sense of sysem failure. It is true at some point your daughter is likely to improve greatly, even recover completely. That may be what your Dr. was trying to verbalize. While it is true that many kids (without dys. conditions) do have a big jump in heart rate the difference is the cascade of autonomic symptoms that result, the ones that make life miserable and difficult to function. My son's symptoms are 2 pages long and include the GI issues which we are working on now. He is feeling better so it is actually easier to see when something more specific is bothering him vs. a few months ago he was so sick all the time with every symptom. I noticed right now all his symptoms can become worse following stomach nausea. Give your Dr. a little time, provide him with information. There is a paper that Dr. Grubb wrote on the web that is seems to be more directed to other physicians. It is long. I gave it to my son's neuro and it was well recieved. Dynakids will also send your Dr. information if you ask them. You are doing a great job to keep looking for the right Dr. and the right treatment. Just know your daughter will feel a lot better when you do. The hardest part is finding the right Dr. then waiting because it is a process of baby steps. We are now flying half way across the country to see a Dr. in VA and my son is finally getting the right meds and starting to feel better. Last winter he could not get off the couch and yesterday rode his bike a mile to Sonic and back with a friend. Someone mentioned Dynakids.org. We joined that also. I would so recommend anyone on here with teens/young adults join. The information and support for the pediatric population there is amazing. The one thing that was stressed that you can do now is to do what ever your you can to get your kid moving. We started with my son by both of us supporting him (170 lbs!) and walking/dragging him to the front door and back several times a day. There were frequent stops and sometimes we didn't make it but we kept at it. He is 15 so we have a ways to go and I expect there will be ups and downs and bike rides to sonic will lead to a day on the couch for some time, but just keep at it - you don't have any choice. PM me if you want! Lynn

My son has many spots on his back. They look like acne at first glance but it is wide spread and in the light you can see wide spread light brown irregular patches. Looks like some photos I have seen. I want to get it checked out. His skin also gets red and raised when lightly scratched.

I would be interested to also know what other benefit (if any) the B2 (riboflavin) has other than migraine control. Last fall before he was diagnosed a very smart Dr. in an ER told my son to take 400 mg of Magnesium Citrate for his migraine. This ER Dr. had previously been a head ache and pain specialist so we took his advise seriously. I don't believe he has had headaches since (other than short head pain resulting from loud noise). A Mayo Dr. also told him to add the Riboflavin so he has been also taking 400 mg. riboflavin since January. We recently cut out the Magnesium because my son has been having so much GI trouble that can sometimes contribute. It hasn't made any difference so it apparently wasn't bothering him. Anyone who reads this and wants to take magnesium should know the Magnesium should be one of the "ate" types, citrate or glucanate, not the common oxide, and should not be combined with calcium as that can interefer with absorbtion. This is what we were told. It is hard to find. We order it from the big A and also did find it at the chain store called Vitamin World.

My son has had very scary episodes of memory loss. You could tell him we are going to the store, then a minute later he would ask where are we going. Or mention someone he knows very well and he would have no idea who that person was, or ask about a paper he spent an hour working on and he wouldn't remember it. But he always would recall/know things later. He also had some absense like episodes. He said it was like he was paralyze, couldn't move or respond but could hear us asking him things. They were about 10 seconds or so. It was happening when all his POTS symptoms were really really bad. When we figured out it was temporary, it was still scary, but not so much. The phase seems to have passed now.

Chrissy, keep us updated. Really interested in what your wellness Dr. opinion is.

My son has been having major adrenaline surges. He also leans a little to the anxious and worry type personality before pots, not at all what you would consider any medical or emotional issue, just a sensitive kid, a bit ADD. I believe it is the adrenaline surges are making everything really worse for him. He does do relaxation exercises but it is hard. Anyone recommend relaxation CD's that would be particularily good for a teen?

Do you take it AM or PM or does it matter? My son takes .1 mg and has for 3 weeks. His heart rate is def. lower but his anxiety is worse but I do not know if that is the medicine changes or just POTS/teen stuff.

The meeting went well. We did feel they were very concerned for his well being. He has always struggled with math. We found out he is actually only a little past the first semester and his grade is probably not even passing, close. It is hard to tell because he isn't on the same path as all the other students. What it comes down to is that he has a tremendous amount of work that needs done, plus a lot of work for the the other 3 core classes. If he only did math I am not sure he could get it done. The teacher has not cut his assignments in that class, though he would allow us to cut them if we felt he had mastered a concept and can move on. That really hasn't even been a consideration. Considering he has to get through 2 more years of math to graduate, if he doesn't get it then the following two years will be extremely hard, especially if he is struggling physically and still has the brain fog. Don't get me wrong. At this point we have given up worrying about the actual grade and mostly focusing on getting the credit. He will still graduate with his class. It will be emotionally difficult. There is no really great option here. I do know he will do much better in his other classes with out the math to worry about. I know a lot of other kids with POTS have had to repeat math or other classes. AND I do think he will do better in math if he repeats it. He got sick the middle of October, had no school, homebound, tutoring or anything for six weeks then the homebound since the beginning of December. He has had extreme brain fog, memory loss and cognitive thinking issues making math literally impossible for much of the time. He has been improving some. They will give him a couple extra weeks to finish up past the end of school, if needed. I have to give up fighting for how I "Wish it was" and just try to make the best decisions I can with the information I have.

I just talked to someone yesterday who just called Mayo and is getting in in a month. She has a history of NCS and had sent the most recent tests to them. I believe she is going through Cardiology. Call them and get started. A month or two is not too long and since you live so close you could easily pick up a cancellation.

Chrissy, Not a lot to add. My son has terrible trouble with the jerks and tremors (did I already tell you that?) His is also worse with stimulation or being upright too much. Last week he was near two horses that spooked (he was holding one) and the Adreneline was so bad from that his episodes have been worse all week than they have been. I agree go to Mayo or one of the large centers. You have a lot going on and need someone to look at the big picture. One thing, you might challenge your insurance company on the allergy drops, since you absolutely can not take what they will pay for, but you need to get a letter from a Dr. validating this. Sometimes it works.

Chrissy, We had a similiar experience. We had sworn off ERs as not helpful but a couple months ago my son was having major jerking that was stronger than before (he was laying on the ground and though we put him on a pillow his head came off and was slamming the ground). We panicked and took him in. Actually called the ambulance because we couldn't see getting him in a car. By they time they got to the hospital the worst was over and they released him 7 hours later with Myoclonic Jerks. No help at all. This has come up recently on another thread. Do you have a POTS Dr? If not you need one and if you do then you need to ask them what to do in that situation. You say the Dr. want you to video tape and that is good. Have you shown them and what did they say?