looneymom

Sorry you are having a bad day. Some doctors just don't get it and its very frustrating. In your case its important to keep track of all your sensitivies to medicines. I think the bracelet might be a good way to deal with this problem. Hopefully tomorrow will be better.

Katybug, I wondered about the pooling. My son has been working on trying to sit up longer in a regular chair instead of sitting in a recliner with his feet up. He finally is able to sit up 2 hours in the morning and 2 in the afternoon. However after he sits up like this, he always hurts more and many times his legs are purple and blotchy. I wonder if this is what's happening in his hands because he is sitting up right more. Thanks for your reply.

He just had his iron tested and his ferritin was at 74.This is not out of range ( test range 10-105) but his iron has never been this high before. However his iron binding compacity had dropped 80 points. It wasn't out of range but it is something the doctor is going to be keeping an eye on. He has been on iron supplements for over a year because he was very anemic.

At first I thought this was a circulation problem when it first started. However, after supper last night, my son's hands turned bright red. A rash appeared on his arms and just kept creeping toward his neck. His face was also flushed. This has been happening off and on since he has had the flu. Last night, it appeared more suddenly and came on really quickly. His fingers were puffy but no more than usual. Just wondering if this could be a reaction from too much iron in his body. His iron levels are on the high side. He also takes Deplin. Has anyone experience this type of symptom? If so what caused yours? I have contacted his doctor about this symptom but have not heard back.

Keep drinking your fluids and stay warm. Hopefully your doctor will have some answers soon. Be thankful it's not the flu.

Be sure to take it easy. I have experienced this myself and so has my son. This can be very painful. Glad you were able to get to a doctor that recognized what was going on. Take care and drink your fluids.

My son just had a sleep study this last Friday. My husband and I are glad that it was done. Our son was able to get through the test but because of some problems noticed, he was hooked up with the mask. The technician told us he was borderline but could not give us details. She was monitoring him for several things and his legs were jerking during the test. We are hopeful that this test will give us more answers about his POTS condition.

Hi Abby,

I would suggest that you start slowly. MAYO told my son to exercise 3-5 times a week. However, my son was really exercise intolerant. He started by riding a recumbuant stationary bike. He started with a minute and rode Monday, Wednesday, and Friday only. He upped his time by one minute every week. He also goes to physcial therapy twice a week. They work on core and leg exercises. Since he had the flu, he lost a lot of his upper body strength. He struggles to lift his hands straight up. So once again, he is trying to get this strengh built back up. Before he had POTS, he was a very active boy. A physical therapist has been very helpful with my son's condition.

When it get worse, you just have to hang in there and keep on keeping on. Hopefully you have found a doctor who knows something about POTS and is willing to help you find out if you have any underlying causes for the POTS. Try to be consistant with fluids, salt, and diet. Exercise even if it means sitting down. My son had the flu in January and is still not able to walk because he shakes from waist down. POTS can be a rollarcoaster. Enjoy the good days and when the bad days come, try to slow down if you can. Keep track of your symptoms and let your doctor know what's happening. He should eventually be able to tell you what type of POTS you have.

Hi Pink,

After my son was first diagnoised, he was also told the same. However, he found he was in the bathroom after drinking more than 3 liters. So he drinks between 2-3 liters a day. It really probably depends on what your body and you can tolerate. As for salt, he does salt his food at meals. He likes using sea salt. He also uses thermotabs because these are buffered. He takes these with his midodrine 3 times a day. He just started with the lowest dose and I took his bloodpressure at different times during the day. Our cardiologist wants his top number to be aleast 110. Its handy to have bloodpressue kit. It allows me to send his readings through internet to his cardiologist. Hopefully, you have found a good doctor to help monitor your condtion. I also keep a spare bottle of thermotabs in my purse in case my son needs more due to his activity level. Start slow with salt if you decide to use salt pills (Thermotabs). Hope this helps.

Welcome Aboard,

Besides your D levels, you might want to get iron level checked. Drink 2-3 liters of water or gatoraide. My son is in the bathroom constantly if he drinks more than this. He also seems to do better if we alternate it. Thermotabs are great for sensitive stomachs and I always have an extra bottle in my purse for emergency situations. Try to do some exercise, even if you have to sit down to do it. Using a physical therapist is a great way to get started. Hope this helps.

Is this part of POTS? Many times my son will wake up in the morning sweaty. He just had a sleep study last night and the nurse put a fan on him because the sticky things on his head kept coming off. He's glad the test is over. The nurse asked if this was happening everynight and I told her 3-4 nights a week. I have mentioned this to his doctor before but it is happening more often. What causes this?

I would really like to know what kind of exercises your PT has you doing for core. I took my son to MAYO back in December of 2011. I live in OKlahoma and our insurance would not allow my son to go back to MAYO to recieve PT from them. My son struggles to maintain chest, shoulder and other core muscles.

Hi Katybug,

Our cardiologist ordered this blood test to check for serotonin and dopamine levels. It checks for dopamine plasam and serotonin serum. You have to fast for this test. It is a lab test that has to be sent to California. It takes about 10 days to get back but it seems to be very reliable. Test name is Dopamine Plasma and Serotonin Serum.

Hope this post will help someone. About 6 months ago, my son's headache went away. Before that he suffered with a daily headache that he woke up with and went to bed with. So when his headache went away, he was hoping it was gone for good. He had blood test to check for iron, D levels, and serotonin levels. All of these levels had come up from the last test. He has these levels checked every 4 months.

In January, he caught the flu and his headache came back. So the end of Feburary, the blood test were ran again. His D and Iron levels were fine and had not dropped. However, his serotonin levels are unreportable. My guess is the flu wiped these levels out. When you get sick with the flu or pneumonia, do you have troubles getting your levels to come back up?

My son also has a daily headache that does not stop. About 6 months ago, it went away. He had blood test and his levels in d, iron, and seratoin levels were coming up. In January he caught the flu and his headache came back. He just had another set of blood test ran, everything was the same except for seratoin. The blood test showed that seratoin could not be measured in blood test. If mangnesium and B2 does not help, might want to check into seratoin levels.

I agree with boymommy3 also. See your GP and let him know how you are feeling. My son has the burning sensation from time to time. Might try a warm bath in epson salt, if you can tolerate it. If it helps, you might need to get magnesium levels checked. Hope you feel better soon. This burning sensation can be caused by many different things.

My son takes 40 mg of midodrine 3 times a day. He also takes 2 grams of salt with this. I tried to keep his fluid intake of water and gatoraide very high 4-5 liters in the beginning but he had to go to the bathroom constantly. Currently he drinks 2-3 liters of water/gatoraide per day. This works much better for him. I also monitor his blood pressure daily. I have made some changes in his diatery needs and his blood pressure is staying up . He is 12 and has been homebound this school year due to his POTS condition.

Yes it can. I wish that doctors could explain why. My personal theory is that it has something to do with weak nerve signals. The signals are just not getting to the brain and you can't get your body to do what it needs to do. It's very frustrating to my son at this time. He is still working with a physcial therapist and still cannot walk since he had the flu in January. He can stand up but he shakes from waist down. His leg muscles are strong and he can ride a stationary bike. He also complains on cold days that his legs and arms hurt more. So I guess you can't rule the weather out either for this weakness to show up.

I also have a Nutrti-Bullet. I make green drinks with it everyday. It's very easy to use and cleaning it is a breeze.

Do you have this before you started the other medication? For my son it took about 2-3 weeks to get it adjusted but I was also having to get his sodium adjusted too. He also takes midodrine. In the beginning, it was rough trying to get it regulated. Just wondering if the other medication might be causing the problem. Be sure to stay in touch with your doctor and send him your blood pressure readings.

So glad you posted this. My son is having the same problems and our neurologist is in the process with our insurance to get a sleep study done. My son has also been on transodone and has also been put amitriptyline for pain issues. He is able to fall asleep but does not stay asleep. He is in a differnt position in bed everytime I check up on him at night. By noon he has circles around his eyes. It is my understanding that insurance will normally pay for this procedure. I have been told that my son will be staying overnight and that more than one type of sleep study can be done to rule out other things.

Yes, my son was taken off his meds. for 24-48 hours when he was tested at MAYO. Hang in there. The testing will be worth it.

How true! Thanks for sharing.

I have no ideal. I did find a study that indicates this is can be an indication of inflammation in the body. I can't wait to hear from the cardiologist after he sees the results. Our cardiologist is already talking to a hemotologist about MCAS. Just wondering if its all connected. I posted a question on the forum. Maybe somebody else has this problem and can share. Hope MAYO trip is good and you get some answers.