looneymom

Tyler says to be home with Dad and the cats. He also wants to move the Children's OU hospital within 10 miles of our home.

Here is an article that explains Hyperpots. High elevated norepinephrine levels will cause this subtype of POTS. http://circ.ahajournals.org/content/117/21/2814.full

This medication is used to treat CRPS, and allydonia. I found a few articles on treatment for this type of neuropathy pain. Tyler started taking the Namenda today. Studies look promising.Tyler is also being checked for NMDAR antibodies. Testing should be back in 14 days. He is maintaining on the plasmapharisis but his headache, scalp pain and tremors are not any less. However, he is staying well, gaining strength, and no hoarse voice. http://paindr.com/wp-content/uploads/2012/06/Opioid-Nerve-Pain_Fudin-ZORN.pdf http://www.rsds.org/pdfsall/Sinis_Birbaumer_Gustin.pdf http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762361/

Here is an article on viruses and depression. http://medind.nic.in/daa/t12/i1/daat12i1p188.pdf I found this article while doing a search on what effects high glutamate levels. Maybe you are dealing with a virus of some sort.

Here is an interesting article about neurotransmitters and disorders that can be associated with them. http://www.merckmanuals.com/professional/neurologic_disorders/neurotransmission/neurotransmission.html

Welcome to the forum and hope you get some answers for your health condition. Keep us posted.

It's not easy trying to figure out this mess. Our doctor does think some other antibodies are in Tyler's system. I am wondering about the Anti-NMDAR antibodies. I will be asking for some testing to check for these. I wish that when I had taken Tyler to the hospital back in 2011 that I had read this article on Anti-NMDAR ecephalities. It is a progressive form and you can have relaspes with it. The symptoms matchTylers and the treatment is the same unless you move up to the second line of treatment because the first treatment does not get it. I sent this article to our doctor last night. Have a good day gjensen. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2826225/pdf/nihms-173684.pdf

I have been doing some reseach and I understand that is used to treat Alzheimer's Disease. It helps with memory, brain fog and other issues. It is a NMDA receptor antagonist, so it will block the brains NMDA glutamate pathways. I have been reading the benefits and side effects. My son has high glutamate brain levels. High Glutamate levels can cause some of my son's severe symptoms. Our doctor is definately thinking out of the box with the use of this medication. I was just wondering if anyone on the forum has tried this medication and how your body responded to it. Tyler will be seeing the doctor on Friday and we will be discussing this medication. Tyler seems to be maintaining and staying well on the plasmapharisis but not seeing any major symptom improvements.However, the small changes are wonderful to see and do make a big difference. However if he has other antibodies mixed up in his condition like our doctor suspects then recovery time will longer. I found an article that explains more about D1 and D2 antibodies and treatment. I think our biggest fear is to add another medication and it makes things worse for Tyler. Our doctor is waiting on our insurance to approve some testing to check for other antibodies. We are bother wondering if Tyler could have the NMDAR antibodies. These are also mentioned in this article. Hope everyone is have a good day and staying warm. The cold air has arrived in Oklahoma. http://svenwiklund.se/onewebmedia/Brain%202012%20anti%20DA2r.pdf

The doctor that wrote the first article on using LDN is a pain mangement doctor. I found a power point presentaion that he did at a conference last year. He does mention other medications that are used to treat CRPS. I have emailed this on to Tylers doctor but I thought some of you might want to see this power point as well. http://crpspartnersinpain.com/wp-content/uploads/2013/12/CRPS-update-on-treatment-2013-Philly-06-Compatibility-Mode.pdf

Hi Katie Would your IgE levels need to be low or extremely high with this medical condition. These are very interesting articles. I just skimmed through a couple of them but it made me think about Tyler's past test results.

I have been reading up on this medication and have been reading about the clinical trials. It has been used with fibrmyalgia patients and it has also been used as an anti-inflammatory treatment for chronic pain. I was just wondering if anyone has used this medication and if it helped. I understand that it has to be compounded and that most insurances will not pay for it. My son is still doing plasmapharisis 3 times a week but still not seeing any major symptoms (headache, scalp pain and tremors) go away. The treatment is not making any symptom worse and he is staying well. He has had a few viruses but it never last more than a few days. So I do think the treatment is helping in some ways. There are a few small symptoms that have stopped all together. He has a doctor's appointment next week . My guess is that another medication may be added to surpress his immune system but I plan on asking about this medication because it also helps with so many autoimmune diseases. Here are few articles and a home website that gives more information about LDN. If anyone has used this medication, I would really like to know if it helped your condition. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/ http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for http://www.ldnscience.org/low-dose-naltrexone/published-research-about-ldn/clinical-trials

If you are on florinef, your doctor needs to be monitoring your potassium levels. If my memory serves me right it can mess up those electrolyte levels. Some people need more potassium when taking this medication. Be sure to talk to your doctor about this and hopefully she will monitor those levels. You might do a search on Florinif on the forum. There were some post made about this medication and maybe some articles. My son is off this medication right now but may have to go back on it.

My son also has flu like symptoms but these symptoms have eased up since he started the plasmapharisis. BTW E Soskis you described the condition quit well. I have also noticed that my son seems to be recovering much quicker from the little viruses. Some POTS cases have an autoimmune cause and this is not also easy to identify. I would encourage you to keep looking for your cause.

YB Here is the article on MCAS. Hope this is helpful to the hospital staff.

Have you mentioned the possibility of MCAS to the hospital staff? Maybe someone there could be of assistance to get you in to see Dr. Afrin. I have no idea what test need to be run but I will bump up his long article on this condition. It's been posted several times. I'm pretty sure the testing he does is mentioned in it. Maybe it will help. I'll go find the article and bring it up for you.

I was doing some more research on Plasmapharisis and came across this resource. I had no idea what illnesses or medical condtions could be associated with neuropathy. I had to skim through it but found it was pretty interesting. I plan to go back through it. Lyme, immune problems, Autonomic neuropathy and so many others are mentioned along with treatments that can be helpful. Happy reading. http://www.us.elsevierhealth.com/media/us/samplechapters/9781560534334/Chapter_23_Acquired_Neuropathies.pdf

So happy for you Becia! Glad things are going better for you.

Hi Blue It's great to hear that you have a healthy heart but not so great that you are stuck with POTS. I wish research could it to the bottom of all of this strange illness. I suspect that POTS has more to do with a persons immune system but time will tell. At least you know what you are facing and know when to slow down to let your body recover.

Thanks Katie, I didn't think about the mycoplasma bacteria. I will check with the doctor. That's a good point to consider. Our doctor is more concerned about the strep but I wonder how it would affect if it were present. I'll have to start doing some more research. I sure hope the predisone has not let the dormant viruses or bacteria infections come out to visit again. Predisone does supress the immune system. So far Tyler has not had any sickness since he has started the pex which I'm hoping is a good sign that his immune system is getting stronger.

If anyone is taking predisone, please be careful. Usually only high dosages of predisone cause the problems but some of my son's symptoms started increasing, The first time I started him on the Predisone, he started at 10mg and I started seeing some small changes. So our doctor told me to drop him back down to 5mg and things started to get a little better. My son was also taken down to 2 pex treatments a week and then we started seeing him slid back more. So our doctor moved him back up to 3 treatments a week but still was not see the improvement that we had seen the weeks before. So he decided to bump the predisone back up to 10 mg and things got worse.So predisone seems to be causing more problems than it's worth. Our doctor was hoping that if we had the bad antibodies under control than maybe the predisone could help with headache and scalp pain. Live and Learn! Predisone is supposed to help inflammation in the body. However, since my son has high levels of dopmine and some other neurotransmiters/hormones out of balance, the predisone mostly likely made it worse. My son had a very hard time falling asleep at nigh and 3-4 charley horses a day. This last week, the doctor started lowering his pedisone dosage and since Thursday he has been off of it. Yesterday, my son only had one charley horse and he is finally falling asleep and staying asleep through the night. I also saw his tremors stop quicker after exercises yesterday. Yea! This mommy is so excited to see this happen. This what started happeing the first time before everything started going down hill again. During pex treatment on Friday, his lips do not go numb. Predisone will mess up calicum and D levels. His D levels did fall down some more but his doctor does think the Predisone is more responisble for this than pex treatments. Tyler is taking more vitamin D and his is taking it in 2 divided dosages. He is also getting 15 minutes of morning sun since the weather and temptures are cooperating. Improvements are small but seem to be coming. When Tyler had his last appointment, our doctor said the treatments would need to be done for least 2 more months. I was thinking 8 weeks and that would include the 2 weeks he had already done. I got his new treatment schedule on Friday. These treatments will last until Dec 5th and then the doctor will reevaluate to see if 3 a week treatments need to continue. Here are a couple articles on predisone and how it can affect the body. Thought they might be helpful to someone else. http://www.dianafoundation.com/articles/df_04_article_01_steroids_pg01.html http://thebrain.mcgill.ca/flash/a/a_08/a_08_m/a_08_m_dep/a_08_m_dep.html

Hi Gjensen, I bumped up a post for you. Dr. Afrin is an expert in this field. One of dinet members has taken their son to this doctor and I think there may be other members that have seen this doctor. It is a long paper but worth the reading time.

Bump up post.

Hi Becia Sounds like good things are happening. Hang in there! Speaking of compression, what about the biker's shorts? In a few weeks, I am going to try this with my son and see if he can tolerate it. I used to be a runner and had running tights for cold weather. Believe it or not I miss those things because they kept me warm. Thinking about getting some more because it's supposed to be a very cold winter this year in Oklahoma. BTW the Life alert sounds like a good thing for you. Enjoy your new freedoms and apartment life.

My son will drink 2 liters of water a day but since he has started back his 3 a week treatments it has affected his electrolytes. So he drinks 12 ounces of water with his midodrine before he gets out of bed in the mornings. Then when it is time for him to drink again, he starts sipping on 12 ounces of G2. This is lower in calories and sugar then regular gatorade. He drinks 2% milk with meals. Besides the milk, I alternate the water and g2 through out the rest of the day to help balance his electrolytes. With all his fluids, he drinks at least 2-3 liters a days. To remind him to drink, I set a timer every 30 minutes.

Yes. When my son's body was well enough to handle it. It got him back up on his feet. However, he could only do it on M-W-F and rest on the weekend. He had 15-30 minute sessions only. His physical therpist monitored his heart and blood pressures. One was taken at the beginning, middle, and end of the session. It was helpul to her and our cardiologist. She used our blood pressure cuff that saves all blood pressure and heart rate readings and then I would send them in to my son's cardiologist. Our cardiologist could also tell us if we needed to back off some or increase his pt time.