looneymom
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Posts posted by looneymom
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Hope everything goes well for you. Tyler is doing great with his and has not had any problems.
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Thanks for sharing this information. I wish I had some of it now to try with Tyler. Has anyone in the USA ordered this product?
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Everyone in our family had the flu shot in October. The cardiologist did call yesterday and wanted me to start Tyler on all the new medications. Tyler is taking Tamaflu and another antibiotic. Tyler has not had anything solid since Monday evening. He is drinking water, gatorade, and Glaceau vitamin water (orange flavor). I found it at Walmart. It is a good source of C,B.A, E and electrolytes.I have also tried the very vanilla Boost drink but it makes him sick to his stomach. He is probably losing weight but can stand to lose a little. However, this is not the way to do it. His strep culture should be back by Friday. I hope it is negative. If not, then the antibiotic Tyler has been taking for 6 months is not strong enough. Our cardiologist will have to figure out what to do next. Tyler's cough sounds less today, so the urgent care doctor may have been right about the start of Bronchitis. I have to call the cardiologist and give an update tomorrow on Tyler's condition tomorrow. I doubt that he will be able to do pex on Friday. I am just wanting to avoid the hospital scene. Tyler and I don't care for the hospital food.
I did take an Epson salt bath last night and woke up feeling very rested. Eating lots of fruits and taking my vitamins. Try and stay well everyone. This is a tough season with the flu.
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I hope everyone is well and can stay away from the flu and all the viruses going around. Tyler started out with a stomach virus I thought last Thursday. He was not able to eat but could keep fluids down. Thank goodness. However, he started adding a sore throat and a cough yesterday. This morning he wakes up with 102 fever. My husband is not feeling well either. So he goes into urgent care bright and early this morning and his flu test is positive. My husband comes back home and helps me get Tyler into urgent care.. Tyler is negative for flu and negative for strep but the doctor says he must be positive for strep. So we have a strep culture done for sure. I have Tamiflu and another antibiotic to add to Tyler's list of medications. Tyler is being treated for flu, bronchitis, and strep. I am hoping I can keep him out of the hospital.
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As a care giver I have learned many things from this illness.
It takes away childhood. My son deserves better and so do all of you that are suffering with this chronic illness!
I have more patience but not enough. I'm still learning and become frustrated when things go sour.
When illness strikes, you must learn to expect some set backs. Tyler has a stomach bug right now and he cannot go to treatment today.
It helps to research and to share it with your doctor.
Be thankful for a doctor that has the patience to deal with your illness and will think out of the box!
This illness is not in your head and you cannot control it.
Be positive and listen to the patient's needs.
Small improvements are giant steps to healing.
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My son takes this and singular. I am thinking this may be part of my son's problem. I posted some articles on histamine that might be helpful to you. MCAS can be a problem for many patients because it affects the ans. Search for Dr. Fry and you should find his article on Mass Cell Activation Disease.
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I sent some articles about histamine to our cardiologist. Excess Histimine can cause so many problems in the body. I have started my son on DAO to see if it will make a difference. My son does have problems with seasonal allergies but I have always had to keep him on Zertic and singular. In the the past when I thought it might be safe to take him off of these, he would get sick with a sinus or ear infection. He has very few outdoor allergies. My son has been tested for food allergies but has none. However, He eats very healthy foods that are high in histamines or will help release for histamines into the body. Sometimes he will break out in rashes after he has ate about 30 minutes later. However, foods also contain sufites and there is a possibility this could be causing a problem because of his +/- CBS mutation. Sulfites can cause allergic reactions in the body. My son does have high levels of histamine and glutamate levels on his neurotransmitters test. Histamine is also associated with MCAS. Here are some articles about DAO and how histamine can affect the body.
http://fixyourdigestion.com/a-different-type-of-food-sensitivity/
http://ajcn.nutrition.org/content/85/5/1185.long
http://benthamopen.com/toij/articles/V002/9TOIJ.pdf
http://physrev.physiology.org/content/88/3/1183
http://www.thedailyheadache.com/2014/05/testing-if-your-dao-level-is-low.html
http://theceliacmd.com/2014/03/histamine-intolerance-causing-symptoms/
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Histamines can be a big problem for some people. I am asking Tyler's doctor to run the blood serum histamine test. I read a post on another forum about a motor tic situation. The parent said her child had no infections but was still having moter tics. She knew through testing that histamine levels were high and decided to give the child DAO. This inhibits histamines in foods. A month later the child was hardly having any motor tics. The parent said it was about 95% improvement. Histamine causes inflammation in the body but I never thought about it in this way. I found a touretts study that was looking into a connection with H3 receptor. Like Issie said this can be part of MCAS but most doctor don't know how to test for it.
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Tyler has high dopamine receptors 1 and 2. I have asked about this but the doctor said it could make cardiology problems worse.
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Have you tried Clonidine? My son has high noreprinphrine levels. He does not go outside much because heat bothers him but night time sweating is horrible. He takes the extended release form and this has stopped the sweating problems at night time. Don't know if this would help during the day time but might be worth asking your doctor about.
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Hey Arizona Girl,
Got a question. Is CIVD something you are born with or can your body progress into this situation with an autoimmune condition? The reason I am asking is I got back some more test results on Tyler the other day. His Lymp on the CBC was 2 points below the normal range but I am assuming that doing the PEX will affect this number. I can pose this question to his doctor tomorrow along with a few more questions. I can tell that things are better because Tyler had this test done 2 months ago and things that were out of range then are now in range.I see this as improvement but seeing the Lymp below range means that we are dealing with low B or T cells. This is a little scary because it means this momabear has to keep her son well.
Like you, I wish it would have stated how they fasted. There are many different types of fasting.
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Just wanted to share a blog on the MTHFR defect. If you have done the 23 and Me testing, you might find this blog post helpful. My son has the hetrozygous MTHFR snp. Recently, Tyler had a test that showed high Methionine levels. Our doctor is going to be checking his Homocysteine levels again. It's been a couple of years but this needs to be checked whenever you have a test that shows up with high Methionione levels.
Tyler is hanging tough but progress is slow. Mentally he is strong and doing well in school. He is on grade level but physically he is weak. He is unable to do PT because the tremors get worse with exercise. The tremors will go for an hour or more after one leg left. He is able to sit up by himself but unable to stand or walk.
He is taking Plaquenil to help keep the antibodies suppressed and so far this seems to be working. His headache pain level is less but not gone. So I think another part of the puzzle is still missing. I am wondering if this may have something to do with histamines.
High histamine levels can cause motor tics. I am wondering if his tremors are the same thing as motor tics I plan on asking about a histamine and DAO testing. Your body makes DAO to suppress histamines. So if the body does not make enough, your histamine levels are always too high.
Tyler will see his doctor tomorrow. I have already sent him an email with questions and testing . I will keep pressing for answers and hope this is not permanent damage to his nervous system. Hope everyone is having a good day.
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Here is an interesting article on fasting. If you think your POTS might have an immune connection this might be something to try. I think this would be hard to do but it seems to be helping people.
http://www.sciencedaily.com/releases/2014/06/140605141507.htm
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Check this out. About a month ago, a nurse was asking me if stem cell treatment would be a possibility for Tyler. He has an appointment to see his cardiologist next week. I will ask if the testing from the OU study has been approved and if it is covered by insurance. Our cardiologist wants to get this testing done on Tyler as soon as possible.
BTW Was anyone able to get into Dr. Ken's (POTS) OU study? Our doctor could not get Tyler in because of his age.
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I found another article on chronic pain that might be helpful to someone. It is research about how CamKinese can cause this form of pain. Camkinese is needed by the body but if it gets too high it affects other receptors. I sent this research to Tyler's cardiologist and he called the other day. The testing for the NR2 subunits for NMDA receptors is still in research and has not been released yet. Just our luck. I find the research that makes the connection with Tyler's headache/scalp pain and testing is not available. This article also mentions the connection of NMDA receptors to CamKinese levels. The testing to check for CamKinese levels is available. This article does mention the use of another medication that can be used to treat this condition.
I was finally able to get a prescription for the extended release Namenda. Namenda helps reduce the activity of NMDA receptors and dopamine receptors. Tyler has trouble with those receptors also.
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You might want to get some of your mineral levels checked. I know that low levels of iron, magnesium, and zinc can make restless leg syndrome worse. Tyler had RBC blood test for these 3 minerals done this last week. Tyler had bad leg pain and was turning and tossing uncontrollable at night. When I increased iron and magnesium supplements, all these night time symptoms stopped but his legs still shake and tremor during the day time.
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Hi Issie,
Glad to hear you are doing better. I have tried Zantac with my son but it makes his vocal tics much worse. The tramadol aslo makes his vocal tics worse. I thought I read somewhere that tramadol effects dopamine levels. I have to be careful when adding supplements or medication.
When my son had the Cunningham Panel test in Novemer 2013, it revealed he had high dopamine, CamKinese and GM1 ganglioside. There is a connection between dopamine and glutamate. High CamKinese causes major problems. Testing has also revealed high glutamate levels. My son's POTS condition has an autoimmune connection.
My son takes 3000 of MethyB12 and he has done the 23 and Me testing. This testing was very helpful. I keep researching and our cardiologist keeps looking at the article and consulting with other doctors. PEX seems to be the safest way to treat right now but we may have to suppress more if we cannot get some more of his other symptoms to stop. Our cardiologist does not want to make anything worse so it's going to be a long road to healing.
Diet is very important and I am glad those changes helped you. I have also made changes with diet. No foods out of the box or frozen food section. No products with MSG. Fresh fruits and vegetables. My son tried a gluten and dairy free diet for 6 weeks but he nor I could see or feel any major improvements. However, I still monitor his diet closely. Our doctor thinks his glutamate levels are being affected by the CamKinese and NMDA receptors. My son has also been checked for the gluten antibodies test and it was negative too.
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My son was diagnosed with POTS when he was 11 by a peds, cardiologist. Sounds like a possible gentic deal.
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When you said that oxygen seemed to make a difference in your symptoms, it made me think about iron. Iron carries oxygen to your cells. Could you have an iron defiencey problem?
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Could you get your doctor to check your neurotransmitters levels. My son has had this test done a couple of times. If you are see a neurologist, they should be able to do this test. My son takes Zoloft which helps recylce serotinon. He has low serotinon levels but high norephinphrine. He also takes clonidine at night and this helps lower the norephinphrine levels.
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If you are suffering from a daily persistant headache with allodynia, then this research may help you get some further testing. My son was checked for the NR1 receptor and it was negative. At the time he was tested, I did not have this information. Our doctor is going to go back and check for the NR2 subunit. The last time my son saw the doctor, he thought other antibodies were involved in his condition. I am beginning to wonder if we are dealing with some type of Encephalities because some forms have a relasping pattern. The reason why I say relasping is because Tyler had a 3 month period that he had no headache/scalp pain and was able to stand and walk for 3 months before he had the flu that took him down in January 2013. Encephalites can relaspe after the flu. NMDA Encephalities is one of those relasping types. So all of the information that is being given in the post is being past on to our doctor. Some of you know my son's story but I will recap just a little for the new ones on the forum.
The illness that we think that caused Tyler's POTS was walking pneumonia (12/2010). Two months later the titer for Mycoplasma Pneumonia was found out of range. NMDA Receptor Encephlites has been known to start after this type of infection. Tyler had a severe headache and the scalp allodynia all started about the same time. NMDA Encephalities is also known as a form of Autoimmune Encephalities. Here is an article that explains the different forms and a treatment plan.
The antibodies for Strep Encephalities have also been found in my son's blood work. The antibodies found in strep can cause heart problems. Currently my son is being treated with Plasma Exchange. However, this may not be enough for him to make a full recovery at this time. Due to heart and blood pressure issues, our doctor is sticking with the plasma exhange treatment plan. Other suppressing medications can make these issues worse.
Tyler has also been checked for glutamate levels. He has high levels. He was checked 7 months after he came down with the pneumonia. I was digging back through some old testing and realized it was the same lab that did his second testing back in January 2014. His glutamate levels were high. He has been checked for celiac antibodies and his testing is negative. I have discovered that NMDA regulates glutamate levels and depending on what it decides to bind with will determine the type of pain theat occurs. Tyler has never been diagnosised with CRPS but mets the criteria. NMDA receptors are involved with this. Here is the research:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113704/
Tyler was checked for the NR 1 back in November and he was negative. However, the NR 2 subunits bind with glutamate and can cause the allodynia. Here is the research:
Our doctor started Tyler on Namenda back in November 2014. His headache pain was at a level 8. However I was not sure how much it was helping. This last week his headache has dropped down to the pain level of 61/2 out of 10. So the Namenda may be affecting his headache pain levels. Tyler is also taking 800 mg of Magnesium with a foot soak before bed and 2400mg of NAC. Magnesium and NAC also help regulate NMDA receptors. Our pharmacy called yesterday evening to they were able to get a months supply of the 7 mg er tablets of Namenda. Tyler will be taking this 3 times a day. I am hoping the Namenda will take care of Tyler's pain issues. Tyler's POTS has been caused autoimmune antibodies. The research has just barely stayed ahead of us. Hope everyone is having a good day and maybe this information will help someone else.
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Hi Becia,
Glad to hear that you are getting some issues confirmed by your doctors. This makes it so much easier to get the right treatment.
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Welcome to the forum. You've had a long journey with your illness. Thanks for sharing your story.
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Here is a good article that explains what NAC is. There are studies on NAC and what is has been used for. I'll see if I can find some of the studies and post them.
http://www.lef.org/magazine/2010/5/n-acetyl-cysteine/page-01
Just Can't Seem To Get A Break From Illness
in Dysautonomia Discussion
Posted
I talked to the doctor's nurse yesterday afternoon. Tyler is no longer running fever but he is not able to eat solid foods or drink milk. His pain levels are up and I cannot understand him when he talks. He is so hoarse and says it hurts to swallow. Bomb pops, G2, jello, and orange vitamin water are his main diet. He will not be doing PEX today since he is not able to tolerate milk or solid foods. I am hoping to get the results of his strep culture today. If he has strep, he needs to be put on a different antibiotic. He still has his cough but it was much less yesterday. If anyone suspects they have strep, please go in and get tested. It can cause so many problems. Tyler's immune problems have been caused by the antibodies that came from step infections that did not get cleared up by antibiotics. Here is an article on strep about some of the other problems it can cause if it is not treated properly. If you suspect strep ask for the culture test not the rapid strep test. These test are not 100% accurate. Hope everyone is staying well and warm.
http://www.antimicrobe.org/b239.asp