julie_2girls Posted October 1, 2011 Report Share Posted October 1, 2011 My daughter has been ill for a while. She recently was hospitalized due to tachycardia (host of other symptoms) and now has diagnosis of dysautonomia. We see a new cardiologist on Monday. We live in phoenix area.My question is does Dr. Goodman at Mayo's see 15 y/o? Where should I take her to determine what type of POTS? I know her heart rate goes up 30 points upon standing. She has all the symptoms.We are trying to get her in with Beverly, Dr. Grubb's NP. It is a 4-6 month wait. She has missed two weeks of school. She is an A honor student.We are worried and need some direction...Thanks,J Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 2, 2011 Report Share Posted October 2, 2011 Julie,I am glad you found your way here, and sorry for the circumstances that have made it nessasary. You will find lots of support here, feel free to ask lots of questions. There are several of us parents on here with teens. How did they diagnose her with dysautonomia? The most important thing will be to find a Dr. who is familiar with dysautomomia (not easy) or at least a Dr. who is willing to learn. You may want to take her to one of the more known dysautonomia centers to get a treatment strategy.I sent you a PM. Feel free to contact me. Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted October 2, 2011 Author Report Share Posted October 2, 2011 Thank you for your reply. cardiologist in hospital started florinef and salt tabs. this is helping her dizziness. He currently has 3 patients with dysautonomia. Daughter still has brain fog, irritability, temperature regulation troubles, fatigue, anxiety, heart racing, pupils dilate big when feeling bad...hard part is the poor ability to concentrate for school work. Is it easier to get into some of the other autonomic testing centers? Quote Link to comment Share on other sites More sharing options...
caroline Posted October 2, 2011 Report Share Posted October 2, 2011 Dr Goodman at mayo in scottsdale is superb You couldn't do better. It isn't that hard to get an appointment there. Best of luck--Caroline Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted October 2, 2011 Author Report Share Posted October 2, 2011 Does Dr. Goodman see 15 y/o? I will definitely call on Monday. I was going to have her cardiologist make the referral. I am so glad to hear there is a good provider in AZ. We are still trying to get in with Beverly, Grubbs NP. It is a long wait.Thanks,J Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 2, 2011 Report Share Posted October 2, 2011 I also see Dr. Goodman and love him. As far as I know, he sees patients of any age, and POTS is his specialty. I'm also in AZ, though I'm in Tucson, I drive up to see him a couple of times a year. Personal message me if you'd like to know more about Dr. G. Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted October 2, 2011 Author Report Share Posted October 2, 2011 thank you. My daughter has many many food and inhalant allergies...wonder if this is part of it? I was told all her symptoms were coming from allergies. even cardiologist one year ago told us that...I will call monday to check on getting appt with dr goodman. Quote Link to comment Share on other sites More sharing options...
issie Posted October 3, 2011 Report Share Posted October 3, 2011 Ask to be referred to Dr. Lewis at Mayo too, he's the allergist. Dr. Goodman can refer and make sure you get him. He is looking into mast cell issues for us with POTS. I see both of them too. Believe it or not there are about 20 people from AZ signed up here on this site. I'm one of them.Issie Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted October 3, 2011 Author Report Share Posted October 3, 2011 Thanks Issie. Do you see adolescents being treated at Mayo? I will call this am to find out. I appreciate the tip on dr. lewis. I will update on how our appt goes today. I pray he can help us:) Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 3, 2011 Report Share Posted October 3, 2011 thank you. My daughter has many many food and inhalant allergies...wonder if this is part of it? I was told all her symptoms were coming from allergies. even cardiologist one year ago told us that...I will call monday to check on getting appt with dr goodman.You have some good doctors .. Most wouldn't have figured this out. I'm not a doctor, but i'm not sure all her symptoms are from allergies, BUT many of us here have allergies. I'm allergic to most things on this planet. My eosinophils have been extremely high at times. But I also havedysautonomia all the time, not just when this happens. So, is she strictly avoiding her allergens ? This can be really difficult for that age. My dd has a severe allergy to peanutsbut when she was a teen, she tested this regularly. I'd start by addressing this ..Drinking electrolytes solutions can help too. We have a thread here on which ones many ofus use. Hope she feels better soon. D Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 3, 2011 Report Share Posted October 3, 2011 Dizzysillak,I also have problems with my eosinophils getting really high. What do you do for your allergies? I'm especially allergic to basically anything living outdoors, perfumes, and I cannot tolerate a lot of drugs. Can you tell me more about casein allergies? I also have very dark circles around my eyes...Thanks!Jana Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 3, 2011 Report Share Posted October 3, 2011 Dizzysillak,I also have problems with my eosinophils getting really high. What do you do for your allergies? I'm especially allergic to basically anything living outdoors, perfumes, and I cannot tolerate a lot of drugs. Can you tell me more about casein allergies? I also have very dark circles around my eyes...Thanks!Janahi jana,At this point, I can't take any allergy meds. They all make me feel too weird to function ...The only thing I can do is avoid my known allergens. Gluten, casein, soy, eggs, chicken, etc ... If you can afford it the ALCAT test that would help. I just had a stool test, a skin prick test and did the elimination diet. This has helped quite a bit as I don't react to the chemicals in the stores like I used too. kow ... I don't know why my eosinophils get high like that but my doc suspects hidden gluten. I take very few chances and don't eat processed GF foods, but I get some bulk food from my HFS that could be cross contaminated and some of my supplements may be cross contaminated too. I'm still working on this ... It's a real pain being this sensitive. Do you know if the dark circles around your eyes are from casein ? Over a 4 year period, I experimented multiple times with every known casein source available to me and still reacted the same way ... even kefir nailed me ... it takes 7 - 10 days for those dark circles to go away too. I kept hoping it would go away since celiacs are supposed to be able to handle casein once their digestive tracts heal but apparently that's only if your lactose intolerant and not allergic to casein ..tc .. d Quote Link to comment Share on other sites More sharing options...
julie_2girls Posted October 4, 2011 Author Report Share Posted October 4, 2011 My daughter got in with Dr. Goodman Nov. 1st. We are looking forward to gaining more insight:) Quote Link to comment Share on other sites More sharing options...
issie Posted October 4, 2011 Report Share Posted October 4, 2011 Julie T,So happy. Maybe you'll get some answers. You might want to go ahead and try to get an appt. with Dr. Lewis too. He books up sometimes 2 or more months ahead. There are only 2 allergy docs there and you want him. You might ask Dr. Goodman's nurse to run it past him and see if they would try to get the appt. first. But, if you want to jump in and get it on your own - you can.Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 4, 2011 Report Share Posted October 4, 2011 Another good website for printable information for your school district regarding POTS is dynakids.org. They have all kinds of printable info for your daughters school, friends, family regarding dysautonomia.Christy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 4, 2011 Report Share Posted October 4, 2011 D,No, I have no idea if the dark circles are for casein. How do you find out? Quote Link to comment Share on other sites More sharing options...
issie Posted October 4, 2011 Report Share Posted October 4, 2011 Do an elimination diet is the best way. If you can stay off of something for one month and then add it back - that's the tell - tell sign. Usually, you will notice the improvements pretty fast. But, it will make you CRAVE what you aren't eating or drinking. That's another sign. When we are super sensitive to something it becomes like an addiction and we crave it. That's a good sign we don't need it. You have to be very careful and read labels. It's surprising how much dairy, wheat and sugar are in everything. Quote Link to comment Share on other sites More sharing options...
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