Thank you in advance for taking the time to read my email and for trying to help me. I’m desperate. I gave birth to my firstborn 50 days ago and I have been bedridden ever since with terrible orthostatic tach, dizziness, extreme fatigue and brain fog. I can barely stay alive. I salt load, drink tons of water, wear compression stockings and an abdominal binder and tried florinef and BB, but NOTHING helps my POTS symptoms. I’m seeing a neurologist who is trying (not very hard) ti find out if I have POTS or other autonomic dysfunction.

My mom and grand mom are both hypermobile (undiagnosed) and are in pretty good health. I used to be doing quite well as well, but during pregnancy I started having excruciating pain from rib, spine, tosal, finger, ankle and neck subluxations! I was seeing a pregnancy PT who was reasjusting my ribs 3 times a week and he said I have at least 5 subluxed ribs every time I saw him… I assume I have HEDS, but I’m seeing a geneticist to rule out VEDS and Marfan next month. In the meantime, I’m sick, lonely, scared to death, bedridden and unable to take care of my 1.5 month old baby…

Please, help me, Dr Diana! I need a referral for a good cardiologist or/ad neuro in the Pacific Northwest (Seattle area). I also need some encouragement. I’m scared as wikipedia says “women who got POT during or after pregnancy have a poor prognosis and might be plagued with this condition for life”. Is this true? If so, how come I never ever had any issues before (i’m 29 years old)? I am tall, slender, used to be very healthy and living a normal life. Now I crawl to the restroom and hope that once my body is relaxin-free, I stop nursing and time goes on… I might be eventually able to walk again…

Thanks,
Lucy

My daughter was just diagnosed after a year and half with EDS. She has hyper mobility, headaches, dizziness, bruising, lack of energy, anxiety, depression etc. . We live in Ontario, Canada, where would you suggest to us to get help? We will travel anywhere in North America to get her help. How do I get more info. on the clinical trials and much success are you having the Diamox and what is H1 and H2? Sorry to ask so many questions, but we’re very concerned about our daughter’s physical and mental health.

In advance thank you for any help you can provide,

Thank you,

Darren

My daughter (15) has bee recently diagnosed with EDS. She is very hypermobile. She also has symptoms of POTS, and will go through testing soon. Her pituitary was tested, and the results were normal.

She is my only natural child, and I am wondering how the two of us could have entirely unrelated rare medical disorders. It feels like there must be a connection.

I do have copies of all of his medical records and will go through and locate the height/weight and head circumference measurements. I’ll check out the sites you mentioned and look for you at prettyill.com. Thank you so much for your efforts.
Diane P. in Cincinnati.

http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

Medication to reduce the CSF pressure is even prescribed for babies (see references #4 and #8). You may want to pop on the forum on Prettyill.com and ask some questions from other moms and patients. You’ll also read about how this high pressure can cause delayed development. We’ve always thought delayed development was from loose joints, but maybe not, or maybe not in every case.

I would recommend that you take your son to a mast cell specialist who understands the link between mast cell disorders and EDS. The only two I’m aware of are Dr. Castells and Dr. Akin in Boston. If your son has mast cell disorder causing his breathing issues, there is a chance that he won’t need to rely on steroids (which can reduce his immune system and stunt his growth). Mast cell treatment is much more benign. My son and I had difficulty breathing, but I KNEW I didn’t have asthma and was tested for it — it came out negative. Meanwhile, some antihistamines (H1 and H2 blockers) and mast cell stabilizers took care of it in about 2 weeks. No exaggeration. It’s amazing what the proper diagnosis and medication can do!
By jumping on this quickly, I believe you will save you and your son from the many complications that we try to “fix” later, after neurological damage is done. That is my gut feeling — speaking to you as a mom with two affected children. Please keep us posted, and this thread is getting dated. For the latest, you’ll find me at Prettyill.com. See you there!
Gentle hug,
Dr. Diana

With his new diagnosis and your article, I’m thinking I may have reason to be concerned again. While he has been quite conversational since about age 2, and is considered intelligent, he seems to struggle at times with memory issues. An example, while helping me put dishes away, he went to the wrong drawer, and then, a little embarrased, kind of laughingly told me he forgot where the utensil drawer was. When he was younger I remember he’d forget some of his favorite character names. Bob the Builder comes to mind. He would forget obvious things that made me think twice at the time. It may be totally normal for kids his age, but he frequently forgets where he put things just a few minutes before, etc.

I don’t even know if they have what is considered normal head circumference measurements beyond age 2 or 3 when they seem to stop tracking it. But I’m wondering if we should look into the possibility that you raise in your article of hydrocephalis as a side effect of EDS Type 3. To quote your article:
‘ External Communicating Hydrocephalus, often in conjunction with CCSVI
(chronic cerebrospinal venous insufficiency), is hypothesized as the cause of the constellation of cranial nerve signs and symptoms, endocrine abnormalities, personality changes, cognitive decline, extreme fatigue, left ventricular diastolic dysfunction and brain atrophy in the Ehlers-Danlos Syndrome patient population.’

He’s also pretty irritible at times, tires easily and doesn’t tend toward a lot of physical activity. You mention delayed milestones and he was about a month ‘late’ for most of his milestones. Your research seemed to be with mostly adults. I obviously would have concerns about anything that might cause a cognitive decline in my young child so would not want to discount this, if it is indeed a possibility. On the other hand, would not want to introduce a drug, which you indicated helps in this situation, if it is not necessary. My sense after our initial visit with his EDS doctor was that this was a joint issue. I’m surprised that it can also potentially affect cognition eventually. Obviously we would want to do whatever we could do to prevent this symptom or side effect if at all possible.

Would you have any suggestions of how we might pursue this to find out if he does have issues with CNS fluid drainage due to EDS?

Sorry for the length, but you mention mast cell disorder in your artile also and I’ve hit on that previously as possibly contributing to his asthma (before the EDS diagnosis) and I’m wondering if there has been any research or you have any knowledge of whether EDS patients with asthma might be more likely to benefit from mast cell inhibiting asthma drugs than the general population?

Thank you for the wonderful service your are providing.

I feel like such a stupid American! I don’t know where a hotbed of geneticists in EDS may be in your neck of the woods. I located mine by plain old calling around and asking everyone I knew, and looking at where the latest research was coming from.
You can call teaching hospitals and get a feel, and again, you may want to ask some of the folks on EDNF.org.
I wish I made it out of the states more often!!
Please let us know what you find, or perhaps someone reading this will have some ideas for you.
Dr. Diana

I will try in Europe first, it’s closer and cheaper. I hope doctors are informed at the same level in USA and Europe.
What European country is more progressive in this field (reumotlogy, genetics, loose joints)?
Is it Germany, Russia, UK? ..or some other country?
or is USA an absolute champion in this field?

Baiba