looneymom

Our cardiologist wrote out on a prescription pad that our son needed a wheelchair due to these medial reasons. He listed several things. Due to the mobility issues that he was having, the physical therapist wrote up a letter of necessity that a power assist wheelchair was needed to meet my son's mobility needs. He has a Quickie 2 Wheelchair frame with e-motion power-assist wheels. The wheels come off and are recharged at night and he has a second pair of wheels that would just normally come with a regular wheelchair. So if he forgets to charge, he has an extra set of wheels. It's bright yellow and he named his chair Bumblebee. He is a transformers fan. The chair does not recline but he is very happy to have more mobility.

Diabeticgonewild

Thanks for posting the information about the testing. My son was seen by MAYO in December of 2011 but this panel was not run. My son will be seeing his cardiologist in June and I am forwarding this information on to him. He suspects an autoimmune problem and this panel sounds like a good place to start.

Hope you are able to get the wheelchair you need. Insurance companies want the proof that you really need one. My son has not been able to maintain much mobility since he was diagnosed with POTS. He has been working with a physical therapist since his POTS diagnosis.

Our cardiologist wrote the wheelchair prescription for my son. I took the prescription to the physical therapist that was working with my son. She had to write the letter of medical necessity to our insurance company and explain why he needed a powered wheelchair. This whole process took about 4 months but was worth it.

If anyone has a teenager that has recovered from POTS, I would love to hear their story. It's so hard watching my son go through all this.

Thanks Corina. I have to send in his bp readings tonight to the cardiologist. His rates were not as low today, but I will be calling the doctor tomorrow.

Wow! It will take a little while to digest this one. Thanks for posting.

I really enjoyed reading this. I see this in my son and its been hard to explain this to educators. I made myself a copy to have for future references.

Diabeticgonewild,

My son was diagnosed with POTS back in 2011 by MAYO. However, my son has not made much progress with medicines for treatment. His symptoms have progressed and am looking for more answers. Our cardiologist believes there is also more going on than just POTS. What test are used to make this diagnosis? Is it just the QSART test?

My son uses thermotabs (buffered salt tablets). I had to monitor his blood pressure in the beginning to figure out how much he needed. He is not big on salting his food, but is getting better. He can use the regular sodium chloride tablets after he has ate a meal. He does drink a liter of Gatoraide every day plus 1-2 liters of water everyday. Using the tablets only, he gets about 7-10 grams of salt a day. Because his current medications are being changed, I am have to monitor his blood pressure hourly.

Is there anyone on the forum who tested positive for this? I would like to know if they have recovered. This sounds like a form of POTS that gradually gets worse if not treated.

Badhbt,

Did your POTS come on during teenage years?

Follow up with whoever is treating you for your POTS. Maybe they can get it figured out by your test results. Hope it helps you figure out what might be causing your POTS. Hang in there and keep yourself hydrated.

The 3 month period of when my son was able to sit up and walk short distances, he still had symptoms of POTS. The longest he was able to stand and walk around was about 10 minutes before his legs would begin to give out. He would turn pale and start trembling. If I took him out for a shopping trip, the wheel chair had to be with us. When he went out in the morning hours for sunlight, he might be able to stay out 30 minutes if the morning temperature was not over 75. Fatigue was not as severe and he was able to get a good nights sleep. Hope to get back to this level of functioning soon but our cardiologist has told us it could be a long haul since the teenage years are ahead.

I was hoping this flare would be shorter for my son but I'm beginning to think this is dependent upon being able to stay well, medications, hormones, and age.

My son is now taking .2mg of clonidine. He started taking this dosage on Wednesday night. His blood pressures are fine but his heart rate is bouncing all over the place. The lowest heat rate I've seen is 54 during the daytime hours but eventually goes all the way up to 97. When he gets up in the morning it's in the 70's. Is it normal for the heart rate to be up and down when starting this medication. The cardiologist did say this could be a side effect but I forgot to ask "What is too low?" Has anybody else experienced a low heart rate with this medication. Just wondering if this is a normal reaction when getting started on this medication. His blood pressures are taken when he is sitting in a recliner.

So sorry you are bedridden. Since my son was diagnosed with POTS officially in December of 2011. He has had 3 major flares. The first kept him bedridden for 4 and 1/2 months. He could not sit up without support, stand, or walk. This last flare came in January with the flu. After he got over the flu, I took him to physical and occupational therapy twice a week. However, he is not able to stand up and walk due to tremors and shaking. He is still able to sit up and do exercises with legs, arms, and hands but he is very weak in the shoulder and chest area. I think if my son would have totally stopped doing exercises when he was sick with the flu, he would have been in worse shape. Doing what exercises you can do is better than doing nothing. I would encourage you to do any exercises in bed to help keep muscles strong. And I know this is truly easier said than done especially when you are hurting. My heart goes out to you and I hope this flare ends soon for you. At this time, I would definitely say the first flare was the worst.

I wish I had some answers for you. The neurologist has my son on 2mg of Lunesta and he is still not sleeping through the night. However, I understand with severe insomnia, this dose may not be enough for him yet. Things that use to work in the past for him like Dramamine or Benadryl no longer help. This problem has been going on for awhile.

Could your headache be caused by something you ate this week? Foods sometimes are a trigger. Sorry that you are suffering with it. The only thing that works for me is an ice pack, dark room, and extra sleep.

So sorry to hear this. Hope you are better by now. Crushed ice is my son's favorite. I have a Walmart snow cone maker that I use. Sometimes he wants gatoraide poured over it.

Gypsy, this might sound strange, but I wonder if this is connected to the Earthing concept. That spider crawls around all down on the ground. Could the bite have cause an increase in the earths electrons into your system? I know it sounds crazy but just wondering. Sorry about the bite. My husband was bit many years ago by one and had to be admitted to the hospital. And it does leave scar.

Janet

Thank you so much for your response. My son's cardiologist called last night. He has increased his dosage on the clonidine. Physical therapy session was much better this morning. Did clonidine help you sleep through the night? If it did, how long did it take to make this happen? My son has not been able to sleep through the night since he had the flu? Our neurologist also has him on Lunesta. Both of these doctors are good to work together and really want to see my son get his sleep cycle back.

This happens to my son when his blood pressure gets too low or when he has been outside too long in the warmer weather. He has not fainted but he looks pretty pale before it happens. Last summer, he could feel it coming on and was able to give me some type of warning before it happened.

Good reading. Thanks for posting.

I going to start the Earthing stuff with my son. I would also like to know how Adderall helps you. Our cardiologist has also mentioned this medication to try. He also know that my son is using coconut oil. My son's immune system seems to be a little better right now. He seems to be dealing better with the cold/hot weather cough. Instead of having to give cough syrup day and night, I'm only having to give it a night. Usually is has turned into croup by now. So far so good.

I think part of our answer is trying to figure out how to control the stress levels encounter by the body. This has to be the most uncontrollable part. My son has got that cough that comes when the weather is cold one day and then gets extremely warm the next day. Most of the time it goes into croup, however his body seems to be fighting it off. I'm not having to give him cough syrup during the day, just at night.

The POTS body just does not handle changes/stress very well. I noticed that for the 3 months last year when my son was able to walk, he had to stay in a routine. If he was off, it threw his whole day off. When he caught the flu in January, he's not been able to get back up to the level of functioning before. However, since he is in the teenage years and still having growth spurts. This does not help either.

One thing that might help all of us is to check and see if a urinary test is available to measure the levels. Not all medical labs do this test. I have read that functional and naturopath doctors are using this test to check for NE levels. They are having their patients retake the test every 6 to 8 weeks to see if the levels are high or low. I'm checking into this for my son. From what I understand, if the levels are low in the urine, then the levels are most likely low in the body.

This sounds great! I will get my list to you as soon as possible.