Dysautonomia Doctor In The Sf Bay Area?

[DizzyGirls]

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?

[Mare]

Hi, I am new to this too. I am being seen at Stanford. A cardiologist, Dr Friday ( long long wait list) seems to have extensive knowledge in Pots. The neurology clinic also has an dysautonomia clinic which I hope to be able to get into.

Good luck,

Mare

[corina]

Hi dizzygirls and mare, welcome to the forum! We don't have a specific teen section here but we have some youngsters around who can relate. Have you seen our physicians list? Here is a link in case you haven't (I"m not really sure if there's someone on it who's in your area though)

http://www.dinet.org/index.php/physician-list.

Hope testing will give all of you the answers you need!

[DizzyGirls]

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

[Katybug]

Hi DizzyGirls,

Sorry I haven't chimed in before this....I've been trying to deal with the snow and POTS and migraines the last few days. It's a bad combination!

Anyway, there is a site for kids with dysautonomia (not associated with this site), called DynaKids. http://www.dynakids.org/symptoms.jsp. I heard good things in the past from parents on this forum regarding DynaKids for their children but have never been on the site myself.

Also, there is a site www.ednf.org for EDS information and they also have a very active forum called Inspire. You might want to ask for doctor's names there as well. Their members and moderators are pretty good about helping people find doctors in their area. They also have support groups in some areas of the country (I don't know about SF in particular.) But I know the EDS support group in my area has quite a few teens that attend. That might be something to look into.

Welcome to the forum!!

Katie

[DizzyGirls]

Thanks Katie! I'll check those sites out!

Dizzy Girls

[Sevysmommy]

I'm not sure how this works yet. So please hang in there with me. I joined this forum in hopes that there is someone else that has a very young child diagnosed with dysautonomia. My 6 year old daughter has been living with chronic stomach pain for the past two years. Last week (March 4,2015) she was diagnosed with this. She is the youngest patient being treated at children's hospital Colorado. After finding this out... I'm gathering that it's possible not too many very young children have this condition. Please if anyone can help us I would be so appreciative.

[Katybug]

Hi Sevysmommy,

I'm glad you found our forum but I am so sorry you have a need for us, especially for a child so young. The stomach pain you mentioned struck me. Has your daughter been evaluated by a migraine specialist for abdominal migraine? If not, I'll see if I can dig up some information for you.

Also, it is more common to hear about dysautonomia hitting teens or adults, but it is not unheard of in younger children. There is a pediatric doc at Johns Hopkins that works with young dysautonomia patients named Dr. Peter Lowe. I've heard great things about him. Even if it is not possible to make a trip to see him, he might be a good resource for your docs in Colorado if they haven't treated a patient as young as your sweet girl.

I think you can find some good support here on our forum. We have quite a few moms and dads who are amazing advocates for their children that participate here.

Let me know if you want me to post some links regarding abdominal migraine.

Take care,

Katie

[Sevysmommy]

Hi Katie,

Thank you for responding. Here's a brief run down on my daughter I think it will help with understanding what lead us to this. When she was 10 weeks old she had a nissenfundoplication and went on to gtube feedings for a year. She has continued to reflux even with this surgery. Two years ago she begin to have "flare ups". Her doctors were having a hard time figuring out why she was having so much pain. We were referred to the wonderful Dr.Lui who is the doctor that figured this out. My daughter's stomach is also paralyzed to a degree. Things we figured anyhow. But now having this diagnosis makes so much sense considering all of the symptoms she has experienced on and off over two years. Oddly enough she experiences the majority of "dysautonomia symptoms" over the summer when it's hot. All of that being said I appreciate all and any help I can get to begin managing her symptoms overall but especially before summer comes along. I do think mentioning abdominal migraines to her doctors is worth a shot. Thank you so much for talking with me. I really want to help my daughter in any way I can. Another area we struggle in right now is school? She isn't focused and not concerned about learning. So basically this mama could use help and advise in all areas dealing with this. Lol I know it's a lot. I think I'd be better organised in my thoughts if I can begin dealing with all of this. I know it's not all going to be dealt with at once, but we have to begin somewhere.

[corina]

Hi Sevysmommy, welcome to DINET! I was just reading your post above and thought that it might be helpful to you when you would start a new topic so that you might get more specific answers on your questions. Just an idea okay?! Sending good thoughts your way, it must be quite hard to see your young kid being so sick.

[Katybug]

I meant Dr Peter Rowe, not Lowe.

http://hopkinschildrens.org/Peter-Rowe-MD.aspx

Here is info on abdominal migraine:

http://migraine.com/migraine-types/abdominal-migraine/

http://www.ncbi.nlm.nih.gov/pubmed/11817981

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856820/

I included the article about abdominal epilepsy because it is a differential diagnosis for abdominal migraine and is rare and many docs don't even know it exists.

[Katybug]

I think corina is right....you may get good feedback from other parents on the school topic if you start a thread just for that.

[DizzyGirls]

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

[circuscat]

I was recently seen at the Stanford Autonomic Disorders Clinic and was very happy with it. They work closely with the GI dysmotility department, too. My doctor was Dr. Gordon Miglis and I really liked him. I would think a teenager would respond well to him because he is young and cute and extremely nice. I have been seen by GI, Endocrinology, Neurology (Headache clinic) and Autonomic Disorders Clinic at Stanford and have had excellent, thorough treatment at all of them. EVERYONE is super nice- from the security guards to the office staff to the technicians to the doctors themselves. Really a great place, so I highly recommend it. I have a referral to the Marfan's Clinic coming up in two weeks. Good luck!

[DizzyGirls]

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!

[circuscat]

Thank you! Yes- he's very nice, kind of reminds me of Jason Schwartzman of the Wes Anderson movies (Rushmore, Grand Budapest Hotel, etc.).

Oh, and I don't know if I can say this here, but I have been to both Stanford and UCSF (for unrelated things) and hands-down I prefer the treatment at Stanford. It's about an hour farther for us to drive (four hours as opposed to three), but you feel like a person at Stanford. I do know people who have been to UCSF and loved it- but my experience there as well as my daughter's was not great.

[DizzyGirls]

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!

[circuscat]

Actually I have heard great things about UCSF Pediatrics. The friends I have who have taken their children there for treatment have been treated very well. My issues were in gastroenterology and my daughter with their Teen Clinic (for eating disorders).

Good luck with your daughters! I actually have hope for young kids- medicine is moving so quickly now and they are coming up with amazing new treatments all the time. I honestly think the young people with these diseases have a chance at being cured. Someone my age (60)- not so much. But good to think there is hope for the younger generation!

[circuscat]

I wonder if generally teens are the first to be diagnosed as opposed to younger kids, not because it doesn't exist, but because their symptoms either go unnoticed because they can't really communicate them, or because they are diagnosed with other things first?

[DizzyGirls]

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

[circuscat]

Hi Dizzy Girls-

I'm very new to all of this (ALL of it!), and have been doing a lot of reading. It seems like I have recently read that BHMS is now considered EDS and that they don't like to use that name anymore because the "benign" part of it is misleading, making it sound harmless when it fact it can be debilitating. I could be wrong- like I said I'm new and I have been reading tons of materials, so I could have gotten it wrong.