crowebirds

Justin - My daughter and a niece were born with this condition. I can give you the persective as a family member. This condition is very difficult for the person that is dealing with it directly, but it is even harder for the family member. Most especially when the condition first starts, family members can't feel the pain, can't sense the surges of anxiety, can't understand the sense of falling apart. I would like to encourage you to communicate with your wife as much as possible about your condition. Try to keep communication during the times that you are feeling your best. Your wife has suddenly been thrust into a position of being a single mother, being caregiver, and being stressed about the job situation. Feeling like a single mother even though you are still married is manageable, but added with the other stressors makes it more difficult. Remember that this condition is not only yours, but hers too. You both have been consumed by a new reality that takes a lot of adjustments. I would encourage her in the same way. Encourage her to be involved in the research. Allow her time to process all that is occuring. Help her to find support from friends to help take care of your son. Most of all, take care of yourself the best you can. I will be praying for you and your wife and son. May you all find strength, compassion for each other, and healing. May God bless you all through this journey that you all are taking. May you find peace and joy along the way. Many blessings, Robin

I have never been diagnosed with anything though I do have or have had a lot of the same symptoms as my daughter who has DYS. She and I both have the sensation you are describing. I get it in the long bones and on occassion in the ankles and hips. I can get the pain after being exposed to the a/c too long. Even though I don't necessarily get cold, I usually tell people that my bones are cold. It was bad enough to keep me from going to sleep at night. Doctors always said that it was growing pains. Well, at 40, I think I am done growing. The best treatment I have found is sitting in a hot bath.

I have a coworker whose wife and daughter has DYS. The wife had used an acupuncturist she had a bad experience. My coworker told TLC all about it. It will be hard to convince her to try one now. I am going to get the ear plugs and try them. We have tried the sponge ear plugs but they just keep coming out. I can say no to the mito cocktail. Still curious enough to ask for more details though. I can tell you though, the migraine she had for three days now mysteriously went away late this morning. They don't usually go away instantly and this one did. Strange. I am just glad it is gone.

Since the first weekend in September, TLC has had migraines. We thought she was improving as she went a week (last week) without any migraines. We celebrated too soon, because now she has had a bad migraine three days straight with no relief from her preventitives, abortives, or sleep. She has now missed fourteen days of school. We believe that the migraines are caused by over stimulation (esp noise). School and church are the only two places that she goes where the noise is too loud. Does anyone whose children with DYS or young adults with DYS and migraines have any ideas of how to help her outside of the drug/vitamin realm. She is allergic to cold so we cannot apply any cold packs. All ideas are welcome.

Her Immunologist has tested her over the last 4 1/2 years for nearly everything, even genetic testing. Unfortunately, her symptoms don't match any existing condition. I am doing what I can to research the MCAD/S to see if she can fit into that picture, but unfortunately there just isn't enough research available on it as of yet. Of course every time there is a new "major" symptom, our focus is shifted away from the urticarial aspect of it all. For the last month her newest symptom has been migraines. She has woke up everyday this week with one. We are looking at going to another facility such as Vandy or Mayo in Jacksonville; however, we have asked her doctor to do more testing for Dysautonomia before we go anywhere. There are many tests that could be done closer to home before going out of state and paying out of pocket.

Sorry for the delayed response. Angioedema for my daughter consisted of wheals on her legs and arms that are inconsistent in size and shape. They do not hurt, burn or itch, they are just there. They remain for as long as two or three days. Afterwards, there is deep tissue scarring; what looks like water rings on the coffee table. These may last upto a week. I do not believe the angio is related to the cold as is her regular urticarial reactions. Most of TLC's urticarial and angioedema reactions are on her extremities and rarely are on her trunk.

Julie - MCAD/MCAS sounds like it fits. At my last doctor's visit, he told us that her symptoms of urticaria do not fit in any existing model. All he could tell me is that it is a Chronic Cold Urticaria. Ninety percent of her reactions occur while being exposed to cool/cold entities (air, water, metal, etc). The true form of Cold Urticaria actually happens when the area is rewarming. We know she reacted to being hot before she had to quit dancing. And, she has another trigger that we are not aware of. Add Angioedema to the list. I can find very little documentation on MCAD. I am definitely going to contact the doctor in Boston to see if I can get a response from her to see if she would be willing to evaluate my daughter. Thank you, Robin

Debra, My daughter is 12 and is the same way. She has had this condition all her life, but has worsened over the last couple of years. She has never been able to drink or eat much at any one time. She also has very low energy. One thing that is a problem for her is consuming cold drinks on an empty stomach. She has a type of urticaria that reacts to cold. To avoid the reactions, she has shyed away from consuming a lot of drinks. We started giving her drinks without ice and eventually she asked for drinks at room temp. I also found a a flavor of Gatorade that she likes most and she consumes a little bit every couple of hours. This is in addition to what she drinks at each of her meals. It is still not much, but better than nothing. We also found out that she was hypoglycemic, this took all her energy away. She began eating 5 grapes two hours before lunch and two hours after lunch. This made a big difference for her. I agree with all the previous posts. Definitely get her vitamin levels checked. Don't load up on vitamins though without talking to a doctor first. Some vitamins, especially Vit D, can be overdosed on. Also, talk to your daughter, encourage her every chance you get to describe to you what is happening to her body when she eats or drinks that causes it to be such a bad experience. It took my daughter a long time to figure out how to communicate these new sensations in her body to me. Each time we talked, she was able to provide a little more insight into what was wrong. Knowing what was wrong, we were able to adapt to other processes or methods to help her out. Also, remember that children are very resilient. When her body is ready, she will get involved again.

My daughter has started displaying symptoms of what I define as sensory overload, the medical definition is not the same. She started 7th grade this year. The day after the first pep rally, her body just shut down. She was like a zombie the whole weekend. She started having migraines that same weekend, began showing signs of severe anxiety and began acting like a child. After a week and a half she began showing a dramatic improvement. By the end of the second week, she was almost back to her usual self. Then another pep rally and it started all over again, but more ferocious. We stopped her participation in pep rally; however, she is very sensitive to any stimulation. This includes singing in church and being around the loud youth group. Every time she overloads she becomes a five y/o (she is really 12) and is really sensitive to everything. I am glad you posted your information. This is the first I have seen some one else with a similar issue.

My daughter had a nerve conduction test on her legs today. I am curious to find out from those that have had them done as to the outcome of the test and whether or not the results were beneficial in confirming a diagnosis of Dysautonomia or a related condition.

Julie - You are a wealth of information. Yes, she has had the Dysautonomia symptoms all her life. The urticaria first manifested itself when she was five or six. I will look into these links and the MCAD/MCAS over the next couple of days. I want to really look into them in detail. We ruled out Mastocytosis early on in the course of the reactions, but the doctor cannot find anything to match them to. At first glance, TLC has most of the symptoms. She is currently on several of the meds for MCAD; Singulair, Zyrtec, Zantac, Hydroxizine and Pro Air HFA. I do have to give thanks for a great visit with the Immunologist today. He has finally accepted within his own reasoning that her symptoms go beyond the basics of Urticaria. He has agreed to continue seeing her until we find a doctor that is able to work with the Dysautonomia and other symptoms. He was able to arrange a Nerve Conduction Study (NCV and EMG, I think) to be done this afternoon. The only two things they reacted to were her cold feet (the room was 86.5 degrees) and her lack of response to stimulation of the reflexes on the knees. We will get the results later in the week. He also did some more blood work for muscle damage, immunology, and lactic acid. He was also able to arrange an appointment with a neurologist that can deal with her issues. The Nerve tests were painful and I pray that they are able to detect any issues that she has. The doctor is also adding a med for the high heart rate, I will be looking into it as well. Can't think of the name right now.

I appreciate everyone?s responses. All comments have been very helpful. We live in Alabama. TLC was eventually diagnosed with Generalized Reflex Cold Urticaria, Cholinergic Urticaria and Angioedema. She has to stay warmer than 72 degrees farenheit. She has also been diagnosed with many other conditions which are only symptoms of a larger problem. After getting a diagnosis of possible Dysautonomia / Mitochondrial Disease and much research on both, I kept track of her vitals every morning. Her blood pressure remained normal, but her heart rate while resting would be in the 80?s, but upon standing would be anywhere between 130 and 190 beats per minute. Other diagnoses: Poor concentration, low blood sugar, low blood pressure, low body temperature, Hypohidrosis, blood pooling in arms and legs, salt wasting, anxiety, sensitive to taste, touch and sound. She has headaches, petechia, exercise intolerance, neuropathy, asthma, migraines, acid reflux, sleep apnea, bad stretch marks and low energy. ....And others.... Although she has muscle weakness and reduced flexibility in her lower legs, she can do circus tricks with her arms and fingers which are super flexible. Because of severe pain and lightheadedness, she cannot stand for more than a couple of minutes at a time. After using crutches for a couple years, she has transitioned to a wheel chair. She has had many tests over the last five years, all have ruled out allergies, autoimmune, thyroid, complement and vascular disorders. We have stayed with her Immunologist because of his willingness to do the research. But, he has mentioned that he can no longer be of assistance to her and that we need to find someone else.

Yes, Mayo is an option; however, we cannot go there during cold months due to the Cold Urticaria. Basically, she is allergic to anything cold, including weather. We will have to wait until next summer before we can go. We live in a warm climate area; however, we are not separated from the cold. Public areas tend to over air condition their facilities which is just as bad as being up north in the colder climate. But, I have read conflicting stories about the Mayo clinic experience. Would it be worthwhile to travel so far, pay everything out of pocket? Would we come back with answer's and a treatment? Sorry to be so down, too many bad experiences. We are planning on going, but it is a long wait for her. Thanks!

I am glad you shared. It gives me, as a mother, a renewed hope. Hope is like a bank account, it gets low and at times overdrafted. With stories such as yours, it is like a bonus deposit, a renewal of spirit. Thank you, again!

My 12 y/o daughter has seen an allergy/immunologist for chronic cold urticaria for the last five years. He finally came to the realization that she not only has one rare condition, but two. He first sent her to a pediatric cardiologist who once specialized in Dysautonomia. Five minutes into our visit the "Congenital Heart Disease Specialist" tells us that he only works with "simple" stuff and not the "complicated stuff" and he hasn't worked with Dysautonomia in ten years. He gave us a referral to Mayo in Minn. No tests were done in his office for her high heart rate and we were sent on our way. Since then my daughter (TLC) developed Migraines, everyday. We get a referral to a neurologist. Despite having well documented information, the doctor completely puts down the concept of Dysautonomia and suggests that one cup of caffeinated tea per day and staying up one hour later on the weekends are probably what causes the pain. She sends us off with no preventatives. Went to the ER for Migraines and the DO says that TLC is just lazy and needs to get out of the wheel chair and walk. He then proceeds to dope her up until she passes out. Also, he gives us a prescription of Doxepin to replace all the current antihistamines, diagnoses her with TMJ and sends us on our way, while having an allergic reaction to one of the meds. Okay, my question -- How do you find and keep a good doctor? We can't even go to the pediatrician any more for a simple pain. All her issues are odd and they have no answers. Children's specialists have no idea what to do. No dysautonomia specialist in the area will see her because she is under the age of fifteen. I refuse to give up getting the answer and a treatment that works, but every doctor visit is so frustrating.