"Suffering the Slings and Arrows of Outrageous Fortune"

Ask a Question

First, A Necessary Disclaimer:

Obviously, I am only a mom of a child with EDS – I have no medical training whatsoever and any advice or information I give should be considered as exactly that: friendly, but not medical, advice. I can share what I know from our own journey and my hope is to give you a place to start as you work with medical professionals to seek out the proper care. Beyond that, every EDSer is unique and no treatment is right for every person. Treatment must always be customized to the individual, so what works for one, may not work for another. That being said, we can help one another learn as we fight a common enemy.

We Are All In This Together

I know many folks who visit this blog may be looking for answers to specific questions and may not find quite the information they are looking for amongst the many, many posts. I well remember the days of endless internet searches in a desperate attempt to find information that would arm me in the  battle against EDS and want to help anyone else in a similar situation.

After almost two years of blogging and seeing various internet searches that bring visitors to my blog, I have long wondered if there was a way to reach out to those folks who are in need of a way to ask questions. My first advice is always to join one of the forums for EDSers –  the EDNF Inspire message boards, the UK Hypermobility Syndrome Association’s forum or the forum on prettyill.com, (particularly helpful for those who have questions about the Driscoll Theory) are all great resources for asking questions and getting answers. These will give you access to others who may have answers from personal experience and I highly recommend them for a source of knowledge and support.

Introducing “Ask A Question”

Beyond those excellent resources, I have decided to create pages covering various EDS topics and invite readers to ask a question in the comments section of the page that fits the topic they need information on. I will do my best to answer any questions posed, and, if my readers can shed light on a query, they would be welcome to share their own experiences.

If you have a question, just use the drop down menu to look for the page that your question best fits in and ask your question in the comments section. And don’t worry if you aren’t sure where your question belongs, just put it somewhere.

In the comments section for this page, feel free to make suggestions about any topics you would like to see added to the list of topics or make suggestions on how I can improve the process. I feel most comfortable answering questions which I have some personal experience with, but will consider adding additional topics if there is a need. Again, I welcome the input of anyone who has knowledge to share.

[Note: This is an experiment that I have no idea how it will work. If it works well, great. If not, I will either remove the pages or try something new. Also, depending on how it goes, I may copy questions and answers to a FAQ page to make the format easier to access, periodically deleting those comments.]

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Comments on: "Ask a Question" (4)

  1. What helped her with headaches? My daughter has chiari, ehlers 3, and dysautonomia. Currently she is on Florinef, Neurontin, and Topamex and still has them daily.

    • Are you familiar with the Driscoll Theory? When we started looking at it, we came to the conclusion that the cause of my daughter’s headaches is increased intercranial pressure. What helped my daughter was Diamox – it is a diuretic (so should be used carefully with dyautonomia) that helps reduce the production of cerebrospinal fluid, thus reducing the pressure and relieving the headache.

      IF, and that is a big if, your daughter is having increased intercranial pressure, Diamox would probably help. That it is a diuretic is problematic for those with dysautonomia but my daughter has it too and tolerated Diamox just fine. It is about treating the cause of the problem and not just the symptoms.

      I would urge you to read my posts about the Driscoll Theory and check out Dr. Diana’s website to learn more about the Driscoll Theory. You can go to the Tag Cloud on the side and click on Driscoll Theory to pull up all of the post related to that topic. I know it has made a huge difference for my daughter – it might not be the answer for your daughter, but it is certainly worth looking into!

      One more thing – Florinef can cause a pressure headache to worsen, so other dysautonomia meds might be a better choice – if there seems to be a connection between Florinef and her headache.

      Hope this helps – headaches are such an insidious part of EDS, with so many different causes. I hope you can pin down the causes and get your daughter some relief!

  2. Diane said:

    My son was diagnosed with EDS type 3/hypermobility about 4 years ago based on my research and request for evaluation. Dr. Tinkle said he had 8 out 9 clinical symptoms. He is 9 now and has a fair amount of leg pain if he walks much. He did have what the doctor’s called a toddler fracture around age 2 when he began limping for no apparent reason. Up to the age of about 8 he would become extremely car sick everywhere we drove. This has cleared up for the most part. His low muscle tone and hypermobility has led to his not having been very interested in sports. He was diagnosed at age 2 with Celiac Disease. He has asthma and some food allergies and is allergic to tree pollen. You mentioned your daughter can be dramatic. My son has always been a pretty emotional kid and I’ve wondered if there could be a correlation to EDS. Thankfully, he has not had the more severe EDS symptoms that your and other families have experienced.

    We learned of Dr. Driscoll’s theory and felt it applied in my son’s case. As an infant his head circumference went from being on the small side to in the 98th percentile by age 3 months. At age 2 he was evaluated by a neurologist who indicated in the resulting report that he appeared ‘macrocephalic relative to his body size’. Basically, he has a big head is what I was told and they weren’t overly concerned about it but suggested he could have an MRI if it would alleviate our concerns. At that time I declined an MRI due to concerns about general anesthesia at that age and the general invasiveness of the procedure. His head is still on the large side for his small size but not really noticeable unless you are looking for it. We submitted his head circumference numbers to Dr. Driscoll and she accepted him into her study.

    After my son’s EDS diagnosis we decided that since his symptoms were minimal, relative to others, we would take a wait-and-see approach. However, after additional research I’m concerned that we may not be doing enough and should be being more proactive to prevent any future problems. He has recently been experiencing some pretty emotional, angry outbursts. This has been an on-again, off-again issue which had been off-again for the better part of a year and I thought it might have been resolved. But with it happening again, it has led me back to looking into the possibility of it being related to EDS and the potential for fluid build-up. I have some understanding of the Driscoll Theory but I’m trying to figure out the best next step. I’m concerned about the possibility of hydrocephalus and understand that with the theory Diamox allows the excess fluid to drain, relieving headaches, etc. But without headaches it may be difficult for us to determine if that is the problem. I’m concerned about there being some level of hydrocephalus at work but just not sure if I should look into testing such as an MRI or a trial of Diamox. I’m wondering if you considered or obtained an MRI for your daughter and, if so, were helped by the results?

    • Diane,
      I know we have been corresponding by email but I just found this comment (I think you mentioned you had commented and didn’t know where it ended up. I think the answer is it was sitting here waiting for me to approve it and respond. 😦 SO sorry about that – I just overlooked it!)

      I am going ahead and answering at least part of your question here, because others may benefit:

      Emily has had a couple MRIs. The first was when she was getting so sick – her pediatrician ordered it. It was ‘normal’, although the question then becomes what is normal when it comes to Chiari and EDS weirdness? Personally, I definitely felt it showed some crowding of the hind brain, although no herniation of the tonsils. But, the radiologist saw nothing, which did not surprise me. So, I wouldn’t say an MRI is necessary to show you need a trial of Diamox – most likely, the effects of increased intracranial pressure will be subtle and not show up. Emily’s MRI had nothing at all to do with convincing the doctor to prescribe a trial of Diamox. However, if you are having symptoms, an MRI is probably not a bad idea so you can rule out other causes. Emily’s second MRI was this past year – she had been having some issues with her pupils dilating and they ordered an MRI to rule out a tumor. Total overkill in my opinion and predictably, it was normal.

      As far as emotional outbursts, that is complicated. Definitely can be an issue, from what Dr. D has said. Was Emily overly emotional or was it just her personality or was it just normal kid stuff? Who knows! Now she is 15 and we have a different type of drama 🙂 (Actually, she is very calm considering the drama queen she once was and all she has to deal with now. She is a very easy teenager to live with!)

      I would say, listen to your gut: if you think it is a problem, it very well might be. It may not be a huge problem, but it may be real… if that makes sense. I do think that young kids struggle with the effects of EDS on their bodies, even if their symptoms are not severe. I think they probably have a sense that something is not right, and react to it, long before we can put a name to it. And that is not even taking into consideration the issue of increased intracranial pressure!

      Hopefully, this answers some of your questions – albeit very late! If it doesn’t help you, it may answer someone else’s question!

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