looneymom

Hi Becia Sounds like you have a lot going on. I don't know anything about the Mestion but Tyler's doctor would not try him on this medication because it would make his condition worse. It had something to do with what was found in his blood work at the time. Just wish I could remember what the reasoning was. Are you close to home? Can your friends check in on you? Hope everything goes well and keep us posted on your treatment.

Thought this article might be of interest to someone. I plan on asking Tyler's doctor about some of the supplements that are recommended. Tyler is already taking several of them but not at a high dosage. Does anyone take Alpha-Lipoic Acid and how does it affect your blood pressure? http://www.newyorkbuyersclub.org/resources/recommended-reading-files/24-NEUROPATHY.pdf

Give it a few weeks. I saw gradually improvement with my son. Not for sure but I think it took about a month before I saw some good things.

Does it help if you sleep in a recliner? I have done this a few times with my son. This does not happen very often with him. He seems to have more trouble with this when is really wore out physically.

Tyler has been taking 5000 iu of D3 every day. So I was surprised that his D had fallen this low. It will be rechecked in a few weeks. My son uses Double strenghth Omega 3 fish oil that has 600 mg of active omega 3. I get this supplement through Puritian Pride. The have really good sales on vitamins and supplements. The small improvements should become bigger improvements. I recently found some research that a doctor did with 30 children with plasmapharisis. The kids recovered within 1-7 months after this treatment. However they recovered quicker when certain medications were given along with plasmapharisis. This is the reason why Tyler is taking predinsone. However, the doctor and I are concerned if this still may be AGG or PAF. Tyler tested negative for AGG but most kids do. It is hard to get a positive test. Tyler's symptoms also match other autoimmune diseases and plasmapharisis is lso used to treat them. So it is still possible that there is more than just one condition going on but I'm really hoping this is it. Having POTS mixed in with something else is a nightmare. On a positive note the plamapharisis is removing the bad antibody (Cam Kinese II) from his system. His body should be making clean and good antibodies. If Tyler gets sick again and his symptoms do not increase. It is a good sign that his body is recognising the bad and has stopped producing the bad antibodies itself. If he gets worse then his immune system will have to be suppressed. I don't even want to think about this situation. The antibody that was so high will be rechecked eventually. This treatment has not made any of Tyler's other symptoms worse or added new symptoms. So I'm thinking this is a positive sign also. We just take it day by day and watch for any small changes of improvement.

Hi Potluck, I don't know if this would help but have you tried Zoloft? I know this medication is used with POTS patients. The other thing that might help is some morning sun about 10-15 minutes with a kitten to pet. I know this sounds crazy but it helps me and my son on really really bad days. I'm sorry to hear you are having such a rough go. A chronic illnesses can bring this on in the patient and care giver. My son has tried a few other medications but the side effects are bad. The other thing you might have your doctor check is iron, D, and B vitamin levels. These influenence the hormone levels and a defiencey in any of these can make depression worse. Hope you feel better soon.

Hi Sara Sound like you are in good hands. Tyler just had some blood work and his looks good except for his vitamin D. He was taking fish oil with it and our doctor said not to take it with his D vitamin. So he takes fish oil another time. Tyler also has trouble with dopamine levels. His were not measurable either. Hang in there and keep us posted.

My son had his 12th plamapharisis treatment yesterday. I am not seeing major changes in symptoms but small changes. Our cardiologist wanted him to start back with some physical therapy exercise and video tape it. He can do a few arm raises without tremors. When he does a leg raise, he does need help with this exercise. Instead of having the hard tremors for 20 minutes it's only last about 3 minutes. His goal is to do a leg raise without having tremors afterwards. He was started on a low dosage of Prednisone this last week and so far it has not affected his eating habits. He is much more alert and happier. He also seems to be transferring much better in and out of his wheelchair. Tyler has some blood work this last week and every thing looks good so far. However his vitamin D is low again 17.2. Has anyone heard that fish oil will compete with this in the body. I was giving this with the vitamin D and our doctor said to give the fish oil another time. His vitamin D levels will be checked again in another couple of weeks. Be protective of your kidos. Tyler wore a mask yesterday at the hopsital because of the respitory virus that's going around.

Hi Jerry, My son has tremors. At first he was only having them off and on. The doctor and I thought they were an orthostaic tremor. They would happen when he was sitting, standing, or walking. Back in 2013 my son got a very bad case of the flu. The tremors have been very severe and disabling. Since this time he has not been able to stand up or walk. He is wheelchair bound. A workup from and endo or immunologist would be a good thing. My son's tremors are being caused by an immune problem. He has very high levels of Cam Kinese II in his body. This antibody can cause heart failure and neurological problems. The antibody is found in patients that have had Rheumatic fever. It is caused by strep infections that do not get cleared up by antibiotics. With every strep infection, these antibodies keep multiplying and the body just accepts them. In return these bad antibodies just keep doing more damage to the body. My son was having strep infections without spiking a fever and rapid strep test would show negative. An immunologist and our cardiologist figure this out after some testing was done to check for past strep infections. My son has an autoimuune condition that has been caused by strep infections. It has made his POTS condtion much worse. He does have low heart rates when he is sitting down and sometimes his tremors do get worse. Hopefully you can find some doctors to work with your cardiologist. Our cardiologist collaborates with other neurologist because they are not comfortable with trying to deal with my son's low blood pressure and heart rate problems.

Hi Jerry My son takes Zoloft. It had a positive effect on him. It helped with brain fog and concentration. My son also has a vocal tic and tremors. He had these before he started the Zoloft and it has not made this condition worse.

Hi Becia, I have another suggestion that might help. My son's cardiologist wanted him to start back with some exercises. So he is trying to do some every other day. He is doing these exercises in his recliner chair or on the floor due to safety issues. When you exercise, I would suggest you do them on the floor or on the bed if you do not have someone that can provide you assistance. My son cannot do some exercises without assistance. So I help him with the exercises. If your insurance will pay for PT or OT to come to the home, that would be handy. My oldest son is also video tapping these sessions so our doctor can see what is going on.

Hi Bella, My son had a tunnel central port put in 3 weeks ago. So far so good. He is not having any trouble. I wish you the best with your new port.

He will be doing 2 out patient treatments for the next 12 weeks. So far his heart is ok. Our doctor did an echocardiogram during his last visit. His vitamin D levels were also checked.

I found a study that might be of interest to some. It was to me because my son has very high Cam Kinese II levels. This antibody can do alot of damage to the body. So far I am not seeing any major changes in Tyler's symptoms but seeing some small ones. Our doctor has told me that small is ok for right now. My son has been sick for a very long time and his body may not know how to make the good antibodies yet. Most people start seeing some major changes within 1-7 months of treatment. Tyler is getting ready to start a low dosage of Prednisone to see if it will help with inflammation. We are hoping that his vocal tic will not start back full blast. The first article is about heart failure and the second article is about children with SC. The second article is a treatment plan that is very close to Tylers. He will be doing out patient treatments 2 times a week for the next 12 weeks and eventually go down to once a week if all goes well. http://circres.ahajournals.org/content/110/12/1661.full http://www.bioline.org.br/request?pe14052

There are different forms of of B-12 and folate. You are right about not mixing a large amount of regular folate with methylfolate. It can cause problems. My son uses a methyl B12 supplement and shot that is on the methyl B-12 only. My son has done the 23 and me testing. I had to do alot of research to figure out many things. I have a document that does pretty good job of explaining why methylB-12 should be used with methylfolate. I will find it and post again. The Deplin really helped with brain fog and fatigue issues when my son started uses it. My son also takes Zoloft about 2 hours before going to bed. I have not seen any side effects with using both of these prescriptions.

My son takes Deplin. He has been on it for awhile and also needs methyl-B 12. I did the 23 and me testing with him this last year and found out that he needs the methyl B 12 and its doners. If you are not getting the right form of B 12 this form of methylfolate may not be able to be absorbed by your body. My son also takes a methyl B-12 shot twice a week.

Tyler had another treatment this afternoon. He tolerated well it but it has not affected his headache. I hope this is the first symptom to go.

Tyler made it through the treatment on Saturday. The doctor was able to get the nausa under control. He was released on Saturday and started out patient treatments again this week. So far we have not seen any improvement with symptoms but have been told we should notice some type of change after 4 weeks. His headache does get a little worse during treatments but it does not stay at that level for more than a day.

My son takes the extended release clonidine at night. It helps him sleep through the night. My son used to wake up drenched in sweat and it stopped this symptom. It is suppose to lower blood pressure but for my son it does not affect him that way at night. However, he cannot take it during the daytime or it will lower his blood pressures. My son is a teenager and his doctor thinks that his hormones are probably running wide open during the night time. My son also has high nophrinphine levels and this medication will help lower this. Clonidine might be worth a try if you are having trouble with hormones. The non extended release clonidine did not help son at all but this form is also available.

Tyler made it through another treatment but his headache pain level went up again and he was sick to his stomach about 3 hours after the treatment. His headache spiked up during the middle of the treatment. BTW Can they give saline during this treatment? Or will that make it worse on Tyler? He was drinking gatorade througout the procedure. This procedure takes 3 hours to finish. His doctor is going to give him a break tomorrow and do another treatment on Saturday. He will try some different medications on Saturday before starting treatment to see if they will make a difference. Tyler told me tonight he could not make it through another treatment if his headache pain level does not go down. So glad we have the day off tomorrow but I'm dreading Saturday.

Like Bellgirl said, you have to research, research, and find a doctor that believes there is an underlying cause. When my son was first diagnosised with POTS, our cardiologist told us it would take about a year to figure out what would keep Tyler going. Tyler had lots of ups and downs that first year. He was even up walking and standing the last 3 months of that first year. I thought we had figured out what would keep Tyler up and going. However, his POTS condition kept getting worse and our cardilogist finally realized that infections and virus were part of the problem. If you have an illness or problem that keeps repeating itself over and over again. That's a key thing to start researching to see if it is related to any of your POTS symptoms. Goschi Tyler had high Dopamine 1 and 2, Tublin and Cam kinese. These have been found in patients that have had Rhuematic fever, Syndahams Chorea, and autoimmune movement disorders.

I'm sorry you over did it but you have bragging rights. Way to Go! I was told by many pts that walking was the best exercise for Tyler to do. When he was able to walk, he was able to do it M-W-F. He rested on the weekend. He could only walk for about 10 minutes before his leg tremors would start. The tremors would just get worse the more he tried walk past that 10 minute mark.

Well, Tyler got a break today from treatment. However, he is scheduled for tomorrow morning and Friday morning for treatment. According to some guidelines in this hospital, he cannot have another treatment until 24 hours after the first treatment.

I would not be ignoring those results either. This test indicates something autoimmune is going on. Have you been checked for lyme or coinfections?

Hang in there. My dad has had this test done. It's not too bad of a deal. He would rather do it than the walking or biking test. If my memory serves me right, you are laying down and they give the medication through an IV. It's good thing they did the EKG. Sounds like your doctors are trying to take care of you and figure out what's going on.