looneymom

The doctor came in again this morning and ask Tyler if he could try another treatment today. Tyler said he thought he could do it. They will be giving him the Zofran before they get it started. They are not giving him calcium through the IV but they are giving saline. His blood pressures did stay up through the procedure yesterday. Overall, our doctor was pleased and surprised that Tyler did so well. The plan for today is for Tyler to have another treatment and then take a break tomorrow.from treatments.

Our doctor wants to stop the IVIG treatments for a while. Tyler may have some later on after he finishes with the plasmapharisis. Our doctor is not certain about how many of these treatments may be needed.

Tyler had his tunnled central line put in yesterday. He is very sore from this procedure and is still in some pain. The doctor has allowed him to be given moltrin/alive, morphine and this seems to really help take the edge off that pain. This mornng, he had the plasmapherisis and did ok during it. He said he felt like he was taking a hot bath without the water. He was sick and nausate to his stomach and his tremors were more frequent about an hour after the treatment. He was given some zofram through his IV and that really helped with the nausa. He will not have another treatment until Thursday morning but I will be asking if they can give Zofram before they start the treatment. Our doctor has told us that it might take several treatments before we see any difference with any symptoms. Tyler will be in the hospital for the rest of this week and will be getting some more plasma treatments as the week goes on. The length of his hospital stay will depend on how well his body handles the treatments.

Hi Goschi, I have oftened wondered about this with my son. He had his walking pneumonia in December 2010 but no doctor caught recognized POTS until August the following year. However. between those months my son kept having bacterial and viral infections. As I think back on this time frame, the doctors were concentrating more on the infections and virus and not taking blood pressures. I'm thinking his POTS was maybe a gradual thing because his immune system just could not keep fighting the bacterial and viral infections. This kinda makes sense since the antineuroal antibodies were found in his body.

Hang in there! When Tyler was able to exercise, he was only able to do it M-W-F and rest on weekends. At least you are beginning to figure some things out with medication. Keep looking for your cause.

Hi Boomerang Welcome to the forum. My son is in daily pain and does not get relief from pain medications. My son is under the care of a cardiologist. He strongly suspects my son's pain is neuropathy related. My son has POTS and an underlying medical condition that has been caused by past strep and mycoplasma infections. These infections did not get cleared up and caused antineuroal antibodies to build up in his body. These antibodies can cause neuropathy problems. Normally this is a problem that only happens in children. However, from what research I have read, it looks as if this problem can go into adulthood with specific infection. Molecular Mimicry is know to cause these problems. My son antineural antibodies were found through a specific test. Here are some articles that might help answer some questions. Hope you feel better soon. http://www.japi.org/march_2010/Article_05.pdf http://www.actaneurologica.be/acta/download/2009-2/04-Finsterer.pdf

Happy for you Sara but I understand the sadness also. Hopefully this will not be forever.

Just wanted to give an update. The cardiologist called last night and Tyler is set to have the procedure done this coming Monday. Our doctor will be starting plasmapherises a few days later. I have been reading about this procedure and Plama exchange but I am still a little confused about the differences between them. Can anyone explain the difference? The good thing is that our doctor will not be giving Tyler any blood products from other doners. He is plannng on taking out the Tyler's plasma and putting back in his blood. The goal is for Tyler's body to make good clean antibodies itself so it will bring up his immune system to functioning better and fighting off strep, mycoplasma, and other viruses. When Tyler is able to tolerate the treatments in the hospital, he will be released. The rest of his treatments can be done outpatient. The bad deal is a three hour drive to the treatment center.

My son had walking pneumonia 9 months before he was diagnosied with POTS. However he also had many ear infections and strep infections when he was younger that may have also contributed to his POTS diagnosis. In research, viral and bacteria infections have been known to happen before POTS appears in teenagers and adults.

This is a good list to show your doctor. Wish this had been available when I started hunting down my son's underlying condition. Here is another article about the role of infections that play into the immune system. Most all of these infections affect the heart or nervous system. Maybe it will be helpful to someone else. Let's keep this post going. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/

Hi Foggy, I think that viruses and bacteria can cause so many problems with the immune system. Here is a research article that you might find interesting. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/

I really do not have a good answer for you about the vitamin D. My son POTS is mixed up with autoimmune condition. He is taking 5,000 a day because his Vitamin D levels were down in his December testing. My son is getting ready to have plasma exchange this next week and the doctor will be closely monitoring those levels again. Plasma exchange can mess up calcium and D levels. When my son gets through this next treatment, I may be able to give you some more answers then. Before my son had POTS, he had walking pneumonia. His POTS condition was brought on by more than one type of virus. Strep and Mycoplasma P have both been found in testing. My son has been sick for a long time and I've been trying to make sure that his body is getting enough vitamins/supplements to keep his body functioning at it's current level. The antineuroal antibodies that have been found in my son's body are caused by the viruses that have been found. Right now, I am really not able to tell what vitamins and supplements are helping because of his current medical condition but his doctor does not want anything taken away until we get the autoimmune condition under control.

Good luck ith your appointment and hope you get some answers. Post when you can.

Hi and welcome to the forum. When my son went to MAYO for his testing, they also tested for Vitamin D and iron. My son was deficient in both. His iron levels stay up but his D levels have been a struggle to keep up. My son does not hardly go outside due to his medical condition. So I have been told to continue to supplement with vitamin D3. His levels are checked every 6 months. My son also takes a methyl B-12 shot twice a week and it does help with fatigue issues.

Tyler will be having this procedure done August 11th and will start plasma exchange treatments a couple days later. He will have 3 treatments in the hospital while there. If he does ok with plasma exchange, he will be doing the next 8 treatments at an outpatient facility. The antineural autoimmune antibodies have caused his POTS to be worse. If not caused his POTS totally.. This is the one piece of my son's illness that I am not sure about. His doctor and I really do not know which problem truely happened first. But what counts is that he gets some treatment that should help him get better. BTW my son has tried haloperidol but he is allergic to it. This medication and 2 others are used to help control the Sydenham's Chorea. They are neuropsych medications and I am hoping we can avoid using them. In one of the studies Tyler was in, the heart antibodies were found. I was not given the name of them but was told they were present. These antibodies are caused by a strep infection and are found in Rhumatic fever and Sydenham's Chorea. According to research, Sydenham's Chorea can be caused by an autoimmune component and IVIG and Plasma Exchange are being used to help the kids get over this part. Heart problems that are associated with Rhuematic fever can happen 5-30 years later. Tyler will be having echocardiograms every year to check on his heart. Here is some new research on Sydenham's Chorea that was released in June. Many of the references at the end of this article can be found online. I never realized the damge that strep can do if it does not get cleared up. There is testing to check for antibodies that would also indicated a strep infection has happened within the past year. Tyler would never test positive for strep on rapid test when he was younger. Sometimes our doctor would treat or just send us on our way saying it was a virus. My best advice to anyone is if you have a fever (even low grade) and sore throat get a strep culture done. Strep is nothing to play around with. http://www.bioline.org.br/request?pe14052 http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone_

I understand your frustration. The last neurologist my son went to see said that none of his problems were related to neurology since he had low blood pressure and a high heart rate. Some doctors are just not comfortable treating a condition in their field when something else major is involved. If you are under the care of a cardiologist, see if he knows of a doctor that could help treat the problem. You do need a second opinion.

If you have been disagnoised with an autoimmune condition and want to know if IVIG, or Plasma Exchange could be considered, then you might want to check this manuel out. The treatment suggestions are based on research and studies. I really don't know to what degree this society is known by doctors or health insurance companies. This manuel does list several diseases and their suggested treatments. It might be worth showing your doctor. http://www.aferesi.it/download/Linee-Guida-ASFA-2010.pdf

Welcome aboard and sorry to hear about being bedbound. That's no fun. I don't know what state you live in but there are state agencies that should be able to help you get medical care. Not sure but I think the Department of Human Services is one of those agencies. It sounds like you need to gain some core strength. My son was bedbound for about 4 months. He would sit up for a minute everyday on a bench and then increase it a minute every week. To keep him going and distracted, he would watch tv, play on playstation, or listen to music if he could tolerate it. It was a slow haul but my son can sit up in a kitchen chair for about 20 minutes before it becomes unbearable. Crawling is also a good way to strengthen core muscles. Keep doing as much exercise as you can tolerate but go slow and don't increase it everyday. Keep yourself hydrated and eat salty foods.

I would encourage you to try again. It's important to be with family and friends. The motel idea sounds like a good suggestion. Try and find a package deal with a room. It may be a better deal for you. Take your wheelchair with you and traveling with a friend might also be a help.

My son also complains about the pain in his legs. It starts about 10 minutes after having his legs down in a regular sitting position.

How did the testing go? Do you know results?

Hope you feel better soon. POTS seems to have a mind of its own when your body is trying to get over anything major or minor. Hang in there and stay hydrated and rest as needed.

Ana Go to the doctor and ask for a strep culture not a rapid strep test. Strep can be bad news and it should not be happening in adults. Have someone take you to the doctor if you cannot take yourself. If if you did not spike a fever, you still need to be checked. My son would not spike fevers and never tested positive on rapids. Last year my son had a test ran to check for past strep infections and it showed that he had indeed had past strep infections. I never knew that he had the infections because the rapid strep cultures would always show negative. Edit: Does this happen often to you or did it happen often in childhood? The reason I ask is because Strep is part of my son's underlying cause for POTS. Just don't want your doctors to miss a key puzzle of your POTS. Feel free to pm if you have more questions.

I am so sorry Blue. I know this must be frustrating. Is there anything that could have caused this? Try and think back to the last time it happened. Could it be increased stress, change in exerise, meds, or diet? Trying to figure out what causes a set back can be very frustrating. Hang in there and it will get better eventually. Family members will have to adjust and understand. You cannot prevent set backs but you can set limits if you know what your body can handle. Rest and listen to your body.

Very low vitamin D levels can cause this symptom. Have you had these levels checked lately?