crowebirds

Thank you, Julie, for sharing. I am so glad for Mack. I fully understand and relate to this experience, our journey is just beginning. This has been a really tough year for TLC. This was her first year in middle school, 7th grade. She started the year in a wheel chair, though it was wonderful and provided a lot of freedom, it was also the only outward sign of being different. That is a big no-no in middle school. She also started the year with a new symptom, migraines, every day. She ended up missing 41 days of school and had to be pulled out of school mid-day at least 30 days out of the year. All her classes were pre-AP as she does not deal with brain fog while on her antihistamines. By mid year we were ready to pull her out of school and have the school come to the house. We didn't, the school was surprisingly flexible. Amazingly she finished the year with a 3.9 GPA and was inducted into the Junior National Honor Society. We worked hard and we worried hard. I would have been happy with just barely passing. The tears flowed. Now, five more years to go before worrying about college. Again, congratulations to you and Mack both.

p.s. TLC was able to participate in the Miracle League this spring playing baseball for the first time. She couldn't have done it without her wheelchair and her buddy.

Read information on the following website. Also read beyond the NVD diagnosis through the Dys info. It sounds like it is all classified as a psychiatric disorder. Also, google just the first word (neurovegetative), you will find more hits.

http://www.greekmedicine.net/physiology/Brain_and_Nervous_System.html

It sounds like NVD is the "old" way of thinking for doctors that just don't know better. Shame on doctors that don't do better research before making a diagnosis.

What type of aerobic exercise do you use?

I have come to the same conclusion with my daughter's condition that it is related to a connective tissue disorder, most likely EDS III and/or IV. She has all the classic signs of III and some mild vascular involvement. My family's history reads like a road map for Type IV and my husband's side of the family includes Marfanoid symptoms. There was never a diagnosis on either side. No problems were realized until each person's death, so it is really too late to go back and ask any one about their health. My father in law was really tall, had long arms and fingers and had Kyphosis. He also had a lot of heart problems which he succumbed to in 2007. My side of the family has really flexible joints, soft silky skin, dislocating joints (me only on this one) and the rupturing organs (abdominal aorta and intestines).

In my research to see how my daughter's bendy joints could be involved with Urticaria and Dysautonomia, I have found very little information. However, I did find that Mast Cells are made up of connective tissue cells. There is a college in our area that has a junior/senior level biology class on TV each week. One week they taught on the connective tissues and had a great visual aid that showed how all the tissues work. They explained how the cells could spontaneously rupture when they are overly excited in someone with a connective tissue disorder. I have not found a good site that explains the issues in someone with Type III EDS all on one sight. However, based on the information from several reputable sights that I have drawn together and one sight that specifically lists "Cold urticaria" as a connected condition, I truly believe that EDS is the source condition. I am still looking for more definitive information all on one site, but until then, I believe that EDS is her problem.

I have been visiting a discussion board for those with EDS III and many of them have POTS, it has been confirmed that EDS is one cause of POTS. Dr. Grubbs has confirmed this in several of his patients. I am currently waiting on an appointment with a Rheumatologist to get a confirmation. As part of my daughter's symptoms, she has several different types of Urticaria, but the cold variety most specifically, very flexible joints that dislocate and sublux easily, stretch marks that she has had long before puberty, easy bleeding, POTS and other Autonomic Dysfunction symptoms.

I don't know if anyone has made a connection yet with antihistamines helping not just the mast cell conditions, but it seems to me that it makes a big difference in my daughter's health with the EDS and POTS as well. Any time we have to take her off her meds, everything goes down hill significantly, especially the Dysautonomia. It seems as though their is an overall effect on the connective tissues in the body. The only thing is, you have to find the right antihistamines, and the right combination if one does not work alone.

Just some of my research and thoughts,

Robin

I wanted to add to my previous post. While my husband was at the point of death three separate times this year, I trusted God and chose to trust the outcome. I chose to not worry. My husband came home from his infection doing well, and it was like great, I can go back to being the normal me and everything being wonderful; he was alive, a changed man. I kept working through most of it, kept my daughter in school and in private lessons all to keep the normalcy of life.

I never realized that I would go through a depression over it all. My body and mind were totally drained. I still had to deal with emotions that I did not realize were hiding in the dark just waiting to come out. My husband was out of work for two months going through all this. I missed a couple weeks of work. There was very little money during this time. Despite this, I had to take some personal time, just to myself to de-stress. I came back healthier, stronger, energized.

Not only do you have a debilitating condition, but now you are dealing with all the overload of having to work, care for your spouse, dealing with the in laws and their emotions and taking care of the rest of your family.

Allow yourself to go through these emotions, the draining, the grief. Allow yourself a time a rest so that you can get as much of your energy and strength back as possible.

Ask for help from your church, your friends, get some people to help out that live close by. Trust God, he will protect your finances and your during this time of recovery for both you and your husband.

I know your husband may not be ready to say it, but I will say it for him. THANK YOU! for being such a great, loving person. You have been a trooper through it all. My prayers are with you, your husband and his family for reconciliation.

I want to encourage you about your husband. There is hope for him. My husband was the same way for the last six or so years. He became very abusive verbally and very controlling. On three occassions he had to stop himself from hitting me during an argument. I prayed desperately for God to change him. Keep in mind that God gives us the prompts to change, but it is up to us to change. There were so many times that I was ready to walk out and leave him, but with my daughter's health problems it was not a good idea. His mother hated me too. She too was verbally abusive.

During one prayer for change in my husband I asked God to make the action personal to my husband, in a way that there was no way he could blame me. My husband would have to know that God was getting his attention. Within three days his truck was stolen while he and my daughter were out shopping for Christmas. He loved this truck more than me. It hit him hard. I gave God time to work on him. I kept praying. I stayed with my husband while his Dad was sick in 2006. I planned on leaving when He got better.

God really had to do a lot to get his attention. His dad died in 2007, two weeks later my husband had his first heart attack. His heart cath and stinting went without complication. A follow up heart cath with stinting nearly took his life. He had to be resuscitated continuously for hours. His brain was deprived of oxygen for a period of time. He had another heart attack in the hospital. Every since he has had heart rhythm problems. His mother died in 2009 and in 2010 he had to have a pacemaker put in. The rhythm problem never improved. This year he had open heart for double bypass. The widow maker vein was 100% blocked. No problems during the surgery, but complications afterward led to a bilateral fatal blood clot in both lungs. One lung was completely blocked and the other 90% blocked, most are dead with much smaller blockages. He was allowed to be alive only by God's grace. The doctors fixed this and then he had a urinary tract infection. This led to an infection of the heart. The Doctors could not have fixed this without God's grace.

Okay, that is it, God got his attention. He is now a totally different man. He will always have heart problems, but so far, everything is much better. He asked for forgiveness for the way he had treated me. He couldn't believe that held in as long as I did. As it turned out, it was the heart blockages and rhythm problems that initially changed him to be so aggressive and ugly towards me. Let me share one thing though, God didn't just change him, he changed me too. It is a long hard road, but keep praying, trusting, and be ready for the change when it comes.

My prayers are with you.

{{{Hugs}}} I am so sorry you have to deal with such bad doctors.

Cordelia -

I am so glad that you are sharing your experiences with us as it happens. I am so nervously anticipating my daughter's trip to Mayo. We still don't have a date, but have been on the waiting list for eight months so far. While waiting for the call, my daughter has started the home exercise program. We have started with some very basic exercises. After the third trip decided that the second stage was just too much and started back in the first stage again. Basically it is just ankle and calf exercises at this point, but it has made a difference for her. She does have to exercise daily to maintain though. I never thought that it would help, but was willing to try.

Please keep sharing, it helps this nervous mom.

Robin

Unlike facebook, we don't have a like button that we can hit. But, I am happy for you. You have a perspective on your daughter's condition that I don't have. You have lived it. This will make her journey much easier. God bless on your journey!

{{{hugs}}} Welcome to your new home away from home. These forums have become a lifeline for me. My daughter is the one with DYS. We have figured out so much and have been able to talk to her doctor intelligently based on information we have found here and through medical research noted through the site and googling some of the terms we have come across. BTW, we are neighbors in Alabama. May you be blessed with great connections and wisdom because of these forums.

Robin

Thank you, everyone. I am a planner and like to have things laid out in advance, especially when looking at multiple high dollar events.

TLC needs braces, but she needs Mayo clinic even more, but it sounds like we may be able to handle both. I will contact BC/BS ahead of time

based on your responses. I never realized that they could give an estimate of cost.

Again, Thank you all so much.

Robin

Decreased Complement Levels( C-4) may be seen with:

Recurrent microbial infections (usually bacterial)

Autoimmune diseases, including SLE and vasculitis

Hereditary angioedema

Acquired angioedema

Various types of kidney disease, including glomerulonephritis, lupus nephritis, membranous nephritis, IgA nephropathy

Malnutrition

Septicemia

Serum sickness (immune complex disease)

Increased Neutropils:

Neutrophils can increase in response to bacterial infection or inflammatory disease. Severe elevations in neutrophils may be caused by various bone marrow disorders, such as chronic myelogenous leukemia.

Sorry, I never heard of an "absolute pathway." Is there another name for this test?

Julie

Thank you, Julie for posting this, TLC does have angioedema as one of her many skin reactions. I never could find a good description of why TLC's C4 was non existent.

I did find this information to help explain the abs pathway.

"Complement, Total (CH50)

This test is used to measure the levels of all Total Complement. CH50 can be used to assess the integrity of the classical pathway of the immune system. A normal CH50 level indicates that all the components of the C1 through C9 are present; however, even in the presence of a normal CH50, the absolute levels of some complement components (eg, C3 or C4) can be significantly (50% to 80%) lower than normal without affecting CH50 activity. This is because normal serum contains C3 and C4 in substantial excess of that required to yield a normal result for CH50. ... For this reason, it may be necessary to measure individual complement components [the absolute pathway]. ... The CH50 assay mainly evaluates the classical pathway."

My first visit was $80,000 + that was for 3 weeks. Just the Mayo bill not the hotel, food etc. I did have good insurance so all I had to pay was my out of pocket total and the doctor visit co-pay. That was with Blue Cross. There were a few bills and doctors that were not covered by insurance and I appealed the decisions. After about 3 appeals and staying in touch with Mayo about the situation - it was adjusted by Mayo - AZ. My second visit was over 30,000. This is not a cheap place to go - but it is a very through place to go. I'm really impressed with the way they do things. I had only one really awful doctor - the rest of the experience was wonderful. I don't know how MN works, but AZ was very good. When I went the good POTS doc wasn't there and I hit a wall here. They were good at test and diagnosising but not treatment - at that time. Many docs there, were not informed about POTS either. If I'd had the tilt test first, probably all the other test wouldn't have been done. In my case, it was the very last test that was done. It took a LONG time, because so many directions were taken before the final conclusion with the very LAST test. It is a rare disorder and not many docs have knowledge of it - even at Mayo. Hoping things go well for you and yours.

Did you pay a copay for each doctor that you saw? And, do you remember approximately how many doctors you had to see? TLC's entire autonomic system is affected so I am expecting one doctor per each system.

Uh, not to scare you, but I guess it depends on how good your insurance is. I had what I thought was decent insurance (state employee insurance, can't remember if it was Blue Cross at the time or not, we have had to switch every year for 5 years because of the state budget cuts)we pre-authorized everything and still the insurance came back and tried to fight us on everything we had done. We paid hundreds of dollars of copays up front only to turn around months later (after our insurance had changed for the year) and receive highly inflated bills the insurance refused to pay. We fought them for months about it, but two years post-Mayo I am still paying off my balance. On the good side, the Mayo has a really reasonable payment plan where you can pay as little as 50 bucks a month toward your balance.

I am so sorry you have had to go through that. I have dealt with insurance companies before that have done the same thing. This is also what I am afraid of now. But, I am glad to hear that Mayo will work with us. Thank you!

TLC has been on the MAYO waiting list for six months now. One of the biggest questions that we really can't grasp a good idea for is how much it will cost us. I do know that the Mayo clinic in Minnesota is covered as an in-network provider for Blue Cross Blue Shield of Alabama. So I am really not expecting to spend a whole lot in regards to medical other than deductibles, copays, DME and the usual stuff.

However, we are currently looking at putting braces on TLC which will definitely cost us an arm and a leg. But before we do it, want to know if there are any surprise charges that insurance may not cover.

Can anyone give me a ball park idea of how much it would cost for a couple weeks at the Mayo Clinic in Minnesota? Would it be in the area of a few hundred, thousand or more than I would really want to know? If not looking at it in dollars, would you be able to tell, what types of things you had to spin money on, both medically and based on lodging and travel?

Thanks!

Robin

My daughter has the same labwork results. I was told by her immunologist that she does not match any of the known autoimmune disorders. He said that there are thousands of autoimmune disorders that are not identifiable just because not enough people have the same one. In other words if it doesn't become a squeaky wheel then they can't get funding to research it. Some of the more common AI disorders include Multiple Sclerosis, Sjogrens,SLE (Lupus). Do a google for "List of AutoImmune Disorders," this should help you find what you are looking for.

Good Luck with your search,

Robin

I don't know if this helps or not, but my daughter's blood pooling starts in her feet and hands and moves up the longer she stands. It has gone as high as her waist and the entirety of her arms. I believe it can happen any where in the body. Also look up the term acrocyanosis.

Dr. is writing a script for a PET scan of the brain. I have had severe cognitive impairment suspected of poor blood flow or a metabolic problem (worse then brain fog. Does anyone know the specifics, like does this show how much blood flow you are getting to your brain? Does it show how poorly or well you are thinking?

My husband had one several years ago. It does not trace your blood flow and it cannot tell anything about what your thinking. Basically it looks for high concentrations of sugars in the body "hot spots." This is a test for metabolic issues.

Everyone needs a good laugh like that. Thank you for sharing, we have had a rough year so far and this has been perfect to lighten the mood.

Hi and welcome to the boards. You will find friends here. I have a daughter, now 12, who was born with DYS. Her symptoms are completely different from your children. First of all I want to thank for fostering and adopting medically fragile children. You and your spouse are a blessing to these two children. My daughter was not diagnosed until last year. The symptoms that you describe fit the Familial Dysautonomia diagnosis very well, and you may want to have the children tested genetically for this condition. Most people with this condition are of Jewish Ashkenazi decent. However, there have been some recent diagnoses of family members that have this condition that are not descendants. Lack of overflow tears is not one of the key symptoms. However, of the symptoms you describe, drooling, floppy baby, growth issues, reduced ability to feel pain and lack of taste buds are some of the key symptoms of this condition. Google "Familial Dysautonomia" and you will find a really good description as well as some discussion forums.

I hope you can find the answers that you need quickly.

Blessings,

Robin

I was researching "excessive sympathetic activity" and came across this article.

I wanted to see what everyone else thought about this article on the Sympathetic and Para Sympathetic Nerve System.

http://www.drlwilson.com/articles/NERVOUS%20SYSTEM.htm

It makes a lot of sense from the aspect of individuals that are very active, perfectionistic and self stressed.

I agree, don't cut your salt out. Salt helps you to retain fluid. Don't know if you use a heated blanket, but it can also cause a lot of the same symptoms, you end up sweating all your moisture out at night. If you have a mast cell disorder, you could be losing a lot of fluid because of it. Definitely increase your fluids.

First of all, I want to give you a big cyber {{{Hug}}}. The journey you have in life is definitely a difficult one. You have two large responsibilities on your shoulders that could make the strongest person crumble, taking care of your self with an invisible condition and taking care of an elderly parent. I pray that you can be blessed with strength and wisdom in your situation. Secondly, know that you have a family here in the Dinet forum that is happy to listen and offer you encouragement. I would like to offer a couple of recommendations to help you out. To start with, see if your "other" brother can take on the responsibility of caring for your mother. I know you love her very much and need her for companionship, but right now you need time to recover and regain your strength. Though this would give you time apart for healing, she will always be within reach when you do need that contact the most. Caring for a parent creates a lot of emotional and physical stress which as you know is no help to your condition. This will also give your mother a time to recover from her depression. It may give her what she needs to regain her desire for life and it can help build a bridge for a new relationship with your brother. Then see if you can find a church, community center, or hospital that offers free group therapy where you live. These groups will not shut you out and you can miss as many meetings as you are sick and still be able to return. You can also visit www.delivermeministries.org. They offer a great community of companionship with other chronically ill members.

Take good care!

Sarah

It is from research I have done on the medical research sites. My daughter was born with her condition; however, a lot of research reports and personal reports from sites such as this give report of people who get this condition from infections. I have seen in research that this aspect improves into adulthood where you don't get so many infections.

Blessings along your journey,

Robin

Oh, yes, almost forgot, ask that your daughter's allergies be tested through blood work, not the skin. My daughter's skin test showed her as being allergic to nearly everything. When they did the blood test, it showed that she was not allergic to any of the same allergens. We knew that she was not allergic to any of the items listed, especially the foods, because it was the ones that she consumed all the time. Also, removing them from her diet did not change her reactions.