DizzyGirls

I was so looking forward to our appointment with the Pediatric Neurologist yesterday. Finally, my oldest had an "official" appointment with him and I brought along a list of her current symptoms - a copy for me and a copy for him to follow. I had listed things like "debilitating fatigue", "the constant vertigo that has plagued her for the past 7 years", "lightheadedness", "heart palpitations", "intolerance to heat and cold", "GI issues", "bladder issues", "low blood pressure", "migraines". Can you all see where I am going here? I thought it was pretty clear that she has a lot of autonomic issues. He basically skimmed over all of these. I asked him if he thought these were autonomic issues and he said some "yes", but didn't feel that it was the direction we should be going. I was thinking "huh", you've got to be kidding me! Did mention that there was a new clinic at Stanford that specializes in autonomic dysfunction, but didn't want to go that direction yet. He spoke with our genetics team and both feel that we should have complete exome testing done on both girls (to the tune of $10,000). I know from what he has said in the past that it's not always clear-cut. The geneticists are going with the hypothesis that the girls have Ehler's Danlos Syndrome Type III, but now nobody is saying anything until we get answers from the genetic testing. Last time I checked, I didn't think there was a genetic marker for EDS III. I know he is looking for other things, too, though. My oldest has been having migraines almost every day for the past week. The imitrex helps, until it wears off, and the next day she gets another one. I know you can only take so much Imitrex in a month. No help for those either. I understand not wanting to just dole out medication, but migraines can have the propensity to cause strokes (my mother has had 12 of them!) My daughters are on a long list of meds (as most of you know, it's unavoidable) and I wanted to try and streamline them, but he didn't want to do that until we get some results from the genetic testing. BTW, has anybody ever had to taper off of Lorazepam? I know I'm venting, but my mom has seen 7 different neurologists over the years and still has not found help, I'm thinking that they are overlooking the obvious. Oh, also, our ped neurologist is getting married on Sunday, so that explains why he was miles away and not wanting to do anything. He shouldn't have been making appointments then. Thanks for listening! Dizzy Girls

You said it, dizzyallie, my daughters are DizzyGirls. The constant vertigo and the strength it takes to enable them to try to balance themselves takes every lasting bit of energy they have.

Hi Circuscat, My mom is 70 years old and has been battling chronic illness since she was about 12. She has given up hope for herself (we believe she has EDS III also) but hopes that medical science will advance fast enough to help the girls. My youngest daughter went to be seen at the Pediatric Rheumatology clinic at Stanford when she was about 5 and the diagnosis was Benign Hypermobility Syndrome even though, in my opinion, there were enough symptoms that they should have seen EDS III. It was years later when she was about 14 and I was doing some research on some labs of her sister's that I ran across Ehler's Danlos Type III. It took me until this past year to discover Dysautonomia and the close relation it has with EDS III. Yes, I believe the little ones, unless they have an extremely intuitive doctor, will have to wait until they are teens to be diagnosed. I've had doctors ask me what kind of medical degree I have, and I had a doctor recently that told me I had a sixth grade education compared to all the education that a specialist has and that I should just concern myself with being a good mom. I had to laugh to myself because if I did that, we would still be at square one! So, moms and dads, keep researching, not all doctors graduate at the top of their class! Dizzy Girls

Well, I figure our appointment on Tuesday with the ped neuro will maybe give us some insight as to how skilled they are at treating the girls. I do like him, he thinks outside the box and was super concerned about putting a diagnosis on the girls until he was sure. There was some speculation that it might be mitochondrial in nature and in the event of Justina Pelletier, he was being very cautious. Seems protective in nature. I've not encountered that before with the exception of our old dear PCP. Went to Stanford years ago to Rheumatologist with our oldest daughter. Sounds like they have a new, state of the art Dysautonomia Clinic. It just takes so long to get in anywhere. UCSF, Stanford, UC Davis, etc. The wait is always forever. In all of this waiting, it would be nice if they actually could get some of their symptoms under control. My youngest would just like to be able to eat. Take care!

Hi circuscat, Thanks for the info regarding Stanford and Dr. Miglis. Yes, to teenage girls, cute is always a bonus! I go for the "good doctor" requirement, their first question is "is he cute". Will see what the neuro says on Tuesday. Had a response from the geneticists who talked with the ped neuro and they want complete exome testing done. Can you say $10,000! Of course insurance won't cover it. We'll see how the visit goes. Good luck to you too!

Hi Sevysmommy, I'm so sorry for what you are going through with your daughter. Been there, done that, may not be exactly what your daughter has, but it's darn close. My daughter just got her tube out this weekend. It was a week short of 3 months and this was our second go around in the last 5 years. You mentioned that you suspect that there aren't too many kids that have dysautonomia, I think there are a lot more than you think. It's just that your daughter was fortunate enough to get a diagnosis early. We have been looking for an answer for my daughters for almost 19 years (my mother for the past 45 years). What a blessing your doctor is! My 16-year-old's GI doc said that her issues are most likely autonomic. That was the first time anyone has said that and I didn't even have to twist her arm! We see the pediatric neurologist on Tuesday and hopefully he will agree. My daughters have had so many symptoms from birth and nobody could ever tell what was going on. We had bouts of abdominal and head migraines from the time they were 18 months old, vertigo too. Slow GI tract (didn't need feeding tube until 2010), pain everywhere, exhaustion, intolerance to heat (my oldest always gravitated toward the shade), bladder issues, etc. The list goes on and on. My youngest is also dealing with gastroparesis right now. Trying to keep her weight on that she just gained. Is your daughter eating now or does she have an ng, g, or j tube? For schooling, it was apparent to us from an early age that they would not be up to going to a traditional school so we opted to homeschool. Don't worry, they are socialized ( a little homeschooling humor!). Does she have any learning difficulties? We started from the get-go so that we could form a schedule and plan for the days/year. I've graduated one and she is in the process of writing a book. She tried to take a class at the Community College in town, but she had such a bad reaction to the excitement of college, that it landed her in the ER after the second day of class (POTS kicked in to high gear that day). That was her one and only try at college. The second one is going to take a couple of classes over the summer and hopefully graduate early. I teach them all, they aren't well enough to go to a charter school or something like that. They have vertigo also and so can't do online classes. I read orally to my daughter and we do her work that way. I asked my daughter what she wanted to take next year, maybe Anatomy and Physiology? She said, "mom, I'm living Anatomy and Physiology!" I told her, "fair enough". So we decided to do Marine Biology instead! My daughters know more about their condition than most doctors! Don't let homeschooling scare you off. You have to be dedicated, but it also enables you to adjust your schedule to allow for all of the doctor appointments that come up. We've been to many an appointment with books in tow. Most people are usually intrigued by it and most doctors will usually elaborate more because they are trying to teach the kids! It's great! If you have any questions, I'd love to be able to share the things I've learned over the years. You can start a new thread, too! Probably lots of ideas out there. Best wishes to you and your family as you continue on this journey. Dizzy Girls

Wow, this just hit so close to home. My daughters have Ehler's Danlos that is causing their dysautonomia. Think we might need to do an MRI to make sure they don't have the Chiari malformation as well. My oldest already has had spinal cord surgery to remove a tethered cord. All I can say to that mom is "way to go!!" Dizzy Girls

Hi sfthriller, I live in the Bay Area, too. I would be interested to see if the oxygen helps you. I don't know anything about it, but my daughters have been fighting vertigo (they have disautonomia) continuously for about 6 years, they are teenagers. My youngest daughter had a pneumomediastinum (blister on her lung that burst and the gases from her lung were seeping into her media stinal cavity making her skin very puffy and crinkly) and the treatment for that was high concentrations of oxygen for about 1/2 an hour every day until all the puffiness and crinkliness (is that a word?) went away. It took four treatments, but it worked wonders. Let us know if you see any improvements. Dizzy Girls

Katybug, That's interesting that you asked me about mast cells because my oldest daughter (not the one with the flushing problem ) had high tryptase readings in some of her labs and they did a bone marrow biopsy last summer, and it came back as being ok. Have a great hematologist who said everything was normal. He was concerned about mast cell activation disorder, dermatomyocitis, etc. The only thing he said was odd was that she has no stored iron in her bone marrow. Zilch. She can't take iron either, has very strange reactions, most of which have nothing to do with her stomach. The daughter with the flushing problem actually has normal tryptase levels. Thanks for the heads up on that, though. I'm new to all of this and am quickly finding that sometimes these disorders take "bunny trails" along the way. None of it is ever simple, is it? Dizzy Girls

My 16-year-old starting doing this recently, last few months. It is usually on her chest, neck face, ears, etc. I notice it a lot when she's eating, stressed, or sometimes it just appears. I was looking on and Ehler's Danlos website one day under the "dysautonomia" section, and there it was "flushing, blotchy skin, etc." Hers is the blotchy skin. It doesn't last long and I never asked her if she feels heat with hers. Thanks, Dysautonomia, yet another thing.

I'm sorry I'm a little behind in responding...so tired. Sounds like you all have had similar experiences, and as I suspect, it all has to do with dysautonomia and/or POTS. My youngest has an ng feeding tube right now, as she hasn't been able to eat enough to sustain herself. We spent 4 days in the hospital a week before Christmas...that was hard. This is her second go with a feeding tube, not fun. She is starting to eat more, think the feeds maybe increased her nutrition level to where, possibly, she can eat enough to sustain herself. It makes it hard, though, when she is still dizzy (the nausea). It's hard to have an appetite if you're feeling queasy. We have gone to an ENT and she said that it appears to be coming from their CNS (which apparently controls the ANS) and not their inner ear. Also went to a neuro-opthalmologist who confirmed that their eyes were structurally sound and physiologically working well. Brings us back to the CNS again. Sort of what I figured. Going to see our Ped. Neuro in a couple of weeks, we'll see if he has any suggestions. Working on some genetic testing right now, too. Neuro thinks their health issues might be Mito. We'll see. They can't read, write, watch TV, ride in a car (not very far or very well), look at patterns, the flickering lights too (through trees, that's a big one!), turning their heads, etc. You get the picture. Both girls have low blood pressure, the oldest more so than the youngest, but both low. I'll check out the links that you all sent, too. Thank you! I learn so much from people who research as much as I do! More so than doctors at this point!

Artluvr09, I thought my daughters were the only ones with this problem! Theirs is kind of the opposite, they can work on their iphones some, but they can't use a tablet (not for long), watch tv, movies at a theater, fluorescent lighting, long hallways, busy patterns, ride in a car, etc. Sounds like vertigo to me. They have had this severely for the past year, but moderately for longer than that. Do you have other vertigo issues? Any triggers other than the new tablet? I wonder if this is POTS, related to POTS, or vertigo just on its own? Dizzy Girls p.s. I like vs. 8 too! (your quote)

My daughters have Dysautonomia and are battling chronic vertigo. My oldest (18) has been plagued with this since she was 12 and my youngest (16) had it off and on when she was about 3 and 4, and now she has had it severely for a little over a year. It is there 24/7, never lets up. Has anyone had this problem and what helped? Dizzy Girls

Thanks Katie! I'll check those sites out! Dizzy Girls

Thanks Mare and Corina. I'll keep Dr. Friday in mind. Thanks for the physicians list, Corina. Will pour over that also. Lots of questions for a doctor that will listen! Dizzy Girls

Hi! I'm new to this forum, just found it the other day. I have two teenagers (16 and 18) that have probable Ehler's Danlos Syndrome and Dysautonomia. That was the last hypothesis that the geneticists gave us (the Ehler's Danlos), the Dysautonomia, I came up with on my own. My daughter's have almost every symptom possible that would be controlled by the autonomic nervous system, some are more severe than the others. Their primary, most debilitating symptom, is vertigo. My 18 year old has had it for 6-1/2 years and the 16 year old had it when she was 3 and 4 and recently for the past year (since 12/24/13). Their vertigo is constant, 24/7, never lets up. We control it with medicine, but it just keeps them upright and not flat on the bathroom floor throwing up. We have seen an ENT that confirmed it had nothing to do with their inner ear. Also just saw a neuro-opthalmologist who confirmed their eyes were in fine working order also. We are back to my hunch all along, dysautonomia. My 16 year old has an NG tube to keep her nutritioned as her weight got too low. The nausea from the vertigo and also her GI tract has always suffered from slow motility, now it's just about stopped. Even with the NG tube she still refluxes and is never hungry, she also has POTS symptoms. My 18 year old started having more severe POTS symptoms last year after her graduation party (low-key church party). Her vertigo increased and she developed this "lightheadedness" that she had never had. She kept pushing herself. She had signed up to take one community college class at our college in town. One class, the second day of the class she ended up in the ER with her blood pressure really low, heart palpitations, ice-pick headaches, blurred vision, etc. The ER doctor (who was actual "doctor royalty" in my book, that's another story) said that no doctor at a local community hospital could possibly be skilled enough to give her the care she needed. He sent her home with instructions to be seen at UCSF Medical Center. So far we have a good neurologist who has ordered some genetic testing in case it's Mitochondrial Disease, but we have yet to discuss dysautonomia. Will do that at next appt. May be searching for new GI doc also, not sure how much this one knows about Dysautonomia. Does anyone have a great Dysautonomia doctor who isn't necessarily a cardiologist that is in CA, preferably at UCSF, but Stanford or UC Davis is within our driving distance also? Thanks in advance for any help you might be able to offer us. Dizzy Girls p.s. is there a teen section on the forum?