Scariest Night Update 1

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Scariest Night Update 1
Please excuse the delay on the update but I have been spending the last few days tending to my daughter (mostly just letting her support her head on my arm or leg to help fight her never ending headache).

After the terrifying incident on June 14th (read story here.) I began doing more research into CCI and what other things might cause my daughter’s symptoms both that night and the days to follow.  I also asked around in the local EDS community for info on Illinois doctors with experience in EDS and CCI or other head issues.

I printed a copy of the CCI info, recorded the names of experienced doctors and institutions and scheduled an appointment with our family physician for Wednesday afternoon.

My daughter was

  • Still struggling to breathe when she laid flat, or turned her head side to side or looked up.
  • She had a non stop headache that increased regularly.
  • She was still very unstable on her feet.  Shaky “like jello” and stumbling a lot.
  • She struggled to form basic thoughts and would stop mid-sentence and forget what we were discussing.
  • She would suddenly be “spaced out”.  Sitting there staring in space and not having a clue what just happened.
  • She drew a couple of shapes on my notebook as I spoke with her geneticist office (these were no bigger than 1/4 inch each) and proceeded to point out that it made her hands shake and turn a strange color and made her head hurt.  When she stood up to change positions she once again slid to the floor like a piece of spaghetti.
  • Even though she was only taking Aleve and Loratidine she looked as though she was heavily sedated.  Her eyes did not open far or seem to focus well.
  • The only thing that seemed to relieve the headache any was to rest her head on my arm or shoulder so that it is slightly pressed forward.
  • She struggled to breathe and her mandible would shake even when she was sound asleep if she turned her head or let it fall flat.

Medical Bag

As I suspected our doctor was concerned but not really sure what the cause might be.  We discussed her symptoms and I gave him a copy of the hospital results (which of course showed  no problems).  We also discussed possible causes and then I asked him if he had ever heard of CCI and if he would take a look at the info and see what he thought of it being a possible cause.

He did and after reading it agreed that it sounded very likely but of course we had NO way of pursuing the diagnosis in our local office or hospital.  He did agree to call the first name I had on our list so that we could beginning pursuing a cause ASAP.

The 20 minute ride home had me almost returning to the ER due to the pain my daughter began experiencing in her head.  However, she asked me to wait because it seemed that the pressure of riding in the car was causing the increase.

The nurse called me within 10 minutes of leaving the office and stated the info had been faxed and I should be hearing from DR. F. (the neurosurgeon’s office shortly).

I waited the rest of that afternoon (still communicating and researching with other EDSers) and into the next for a call from the neuro office.  When after 24hours I STILL had not heard ANYTHING I called the office and asked if there was a delay with information, insurance, etc… and the response was; “No, we simply have begun a new system and new referrals must fill out a form before we can put them in the system.  I am working on faxing the forms out now.”…..I replied with a polite “Thank you, I am sure my doctor will return it immediately.”

The next morning we still had not heard anything so I called my local PCP office again and asked if they had received the fax.  NOPE.  So I offered them a separate name (4 hour drive) and asked for a different referral.


My daughter showed me that the soft tissue on the back of her head had continued to swell and the blood vessels on the inside of her left eye had ruptured so that ALL you saw was red from the retina to the inside point.

I immediately called the office again and asked for an appointment with our PCP.  His day was booked but after consulting with him they chose to take my daughter as add-on.  By the time we went 3.5 hours later the bleeding had reduced to only pronounced vessels but the pain and swelling were still there.  When the doctor touched the back of her head to check the swelling her arms turned white, numb and tingly.

We discussed the difficulty we were having with getting an appointment and the fact that she still wasn’t right and seem to struggle with the turn of her head.  I explained that I had considered returning to St. John’s ER (our favorite, you can see why here) for follow up testing and treatment because I was very concerned about permanent blood flow issues.

He suggested that we seek an emergency room with a neuro unit capable of handling our situation if it was indeed cause by CCI.  We discussed our options and I left promising to drive careful and slow in the nasty rain we were getting.

I returned home, researched the closest hospitals (since riding in the car caused her pain) and chose CARLE in Champaign (I knew at least two neuros there had experience with both EDS and CCI).

I will share about that experience in the next post as I need to take a break and take care of my baby.


The Scariest Night Of Our Lives

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Today’s post is coming from a worried momma.  A momma who is looking for ideas and answers.  Below you will find another personal story.  I know this is the second in a row but it’s one that is weighing heavily on my heart.  It was the scariest night of my ENTIRE life.

Scariest Night

Continue Reading the full Article…

A Positive ER Vist

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How many of you have had terrible hospital/doctor visits?

How many of you dread going because you are sure that they won’t believe you?

Help you?

Or even Be Kind to you?

Every time I take my children I worry about ALL of the above and then some, including someone with good intentions calling Family Services.

I mean, seriously, how many people can cause bruising and dislocations or fractures by sitting in their wheelchair, taking a breath, painting their nails or other mundane tasks?

Not too many I would guess.

Recently I had the opportunity to seriously test our local emergency rooms with one of our “odd stories” and subsequent bruises and injuries.  The visit went so well I wanted to share it to offer hope and commend the hospital, doctor and staff for their support and kindness.


(Yes, the following is possible and true for those who have never heard of our syndrome.)

Late Friday night, my eldest daughter was in too much pain to attend her graduation so we opted to watch a baby and toddler for a few hours so other parents could enjoy it instead.  We romped, played with Legos, giggled, laughed and had fun like a “normal” family.  My youngest daughter even carried the baby around with no dislocations or pain.

Fast-forward a few hours after the little ones leave…we are sitting the frontroom watching a movie, me on one sofa and my daughters on the other when we hear an ominous “POP”!

Fragile Handle With Care

Any EDS parent knows that a loud “POP” is NEVER a good thing.

I look over and my youngest has a look of sheer torture on her face and is stuttering, “Uh, Mom I think I dislocated something or other”.

This is not unusual so my response was simple, “Um, Ok…Want me to look at it?”

I did and her clavicle was out, her shoulder was out and her rib was not right.

Welcome to EDS.  

We decided that given her history of her joints resetting on their own we would wait it out and she could try medication, time and rest.

By 8:00am the following day she had bruising around her clavicle that looked like someone had tried to choke her and it was growing in size, her shoulder and ribs hurt even more so we made the decision to give it just a few more hours (I needed to stay with my oldest until I found someone) and we would go to the ER.

Besides another loud “POP” at midday the pain didn’t change (we believed it may have slipped back).

For most people choosing an ER is simple…GO TO THE CLOSEST ONE.

(No brainer, right?)


We have an ER three blocks away and short of being at death’s door we will not go there.

We have another ER 20 minutes away and 2 out of 5 doctors DO understand my daughter’s syndrome well enough to slow down and look at the big picture.  The others?  Not so much.

Then we have the teaching hospital full of residents and that are in touch with her pediatric orthopaedic surgeon when needed, but it is an hour away.

What makes our decision?

Usually the extent of the damage and how well she can travel.

On this particular day we chose to go to the teaching hospital (St. John’s in Springfield).

I am so glad we did.

Remember, as it is, my 14 year old already  has a bruised/dislocated/subluxed clavicle, shoulder and rib.  So, what happens as we are exiting our front door?

Her ankle rolls and she stumbles in to the porch wall!

Are you kidding me?  I said “That’s it!  You are using the wheelchair for the rest of the night.”  And she did since it seemed safer.


Hospital sign


St. John’s is a large hospital and sees hundreds of patients everyday in the ER.  It is not uncommon for there to be twenty patients seated in the waiting area after being assessed (many are colds and flu).  We always expect to sign in and wait when we arrive since we are not (and should not) be considered top priority.  But on this particular day there was NO waiting.

Now, as with most EDSer’s  my daughter has a list of side “syndromes” or “EDS friends” as I call them and they are just as rare if not more so than EDS.  Ironically they also have initials we have learned to use to make it easier to say.  Very often hospital staff will not only have never heard of these syndromes but ignore them entirely.  This was not the case at all!

The intake person asked all the right questions, didn’t look at me judgmentally when I said “She injured herself taking a breath” or “She is suspected of having P.O.T.S. and M.C.A.D.” and I didn’t have to spell ANY of them!!!  (This is a little happy dance all by itself.)

The triage nurses were also extremely helpful.  They took her blood pressure, weight, temp, etc… while being VERY gentle and patient.  (The POTS makes her lightheaded and dizzy at times.)  They asked additional questions about her illnesses and medicine allergies as well as her EDS.  They then took us to an ER bed immediately and followed up with a few more questions (LISTENING carefully the whole time).  When my daughter began shivering slightly I offered her one of the three hoodies I had on hand and asked her if she needed a heated blanket.  The nurse seemed a little surprised considering she had on a hoodie and tank top already.  I simply explained that the POTS and poor circulation causes her to get frostbite even indoors and we showed her the damage to my daughters fingertips.

  In less than 3 minutes we were visited by a nurse from pediatrics and being transferred to a MUCH warmer room.  (My daughter was cozy but her poor momma was sweating to death.)  I am not sure if they turned the heat up or simply have a warmer room for patients with a low body temp but for my baby it was like a little cocoon and her body could relax and not shake or tense up from being cold.

The next visit was from the floor nurse and she was wonderful.

  She walked right in and said (not a direct quote but VERY close).  “They said you have a rare syndrome and I should write it down.  Would you spell it for me so I can get right on it?”  What can I say?  I did and I even explained a bit about how it affects us specifically.  She also checked on the temperature and my daughter’s comfort.

Within just a few more minutes the doc came in and THANK GOOODNESS he not only knew what EDS was, he knew to ask about co-morbids and additional issues.  He asked what MCAD symptoms we had and the triggers as well as medication reactions.


He didn’t look at me as though I had completely lost my mind when I explained that taking a breath created this disaster.  He didn’t try to hyperextend my daughter.  Or stretch her skin.  Or argue about her diagnosis.

He simply and GENTLY examined her thoroughly, all the while asking about any additional issues.  He seemed to decide I had a square head on my shoulders when, to his last question, as he checked her eyes  “Any other  issues?” I responded with “Well, collagen is in all our soft tissue and is affected so sure she has eye problems and the usual soft tissue issues.”

He asked if we would like some pain medication due to the fact it was obvious her pain level was high and some relief would be good.  I know it helps that our records show a history of non-narcotic choices.  (We hate meds and avoid them when at all possible.)   He even discussed pill or shot AND which type was the most useful for us.  (This is one thing many drs still don’t get.  For whatever reason EDSer’s bodies respond to pain medications differently and what may work for one doesn’t even begin to help another.)

We chose the shot after which I recalled her last Mast Cell reaction while IN a different ER to Fentanyl and had to rush out to the hall to ask the nurse for sure which he had chosen.  He hadn’t mentioned Fentanyl but I am always cautious about substitiutions or changes.

She then added Fentanyl and the reaction to the NO-NO list so that we wouldn’t forget again and informed me it was going to be Toradol.  She even stepped back in to make certain the shot is what we had chosen because she understood our skin was sensitive to trauma.  I knew it worked the fastest so I encouraged my daughter to take it.

Between ordering the shot and actually receiving it x-ray showed up to take her away and JUST as I was suggesting we might want to have the shot first the wonderful nurse came over and told the x-ray tech the same thing.  The x-ray tech was so gracious and didn’t return until the shot had a chance to help with the pain (not that the xrays didn’t hurt anyway).

  Of course, her leg and body began to tremble from the shot so she had to sit down and have help walking but that is her bodies normal reaction to ANY pain medication.


Side note:  If you want your teen to hate you for a few days just order a shot in the hip (if they have never had one before).  As many times as we have been in the ER my daughter has NEVER received a pain shot.  She has had pain meds thru I.V.s and Tylenol/motrin/codeine via pill form but apparently NEVER a shot.  It hurt and she was NOT happy.  Because we try not to visit the ER unless her injury is substantial or she is green, struggling to breath and might be having a heart problem we try to fix things ourselves with resets and braces.

The x-ray attendant was very gentle and patient as my daughter stumbled her way around and tried to hold her positions without trembling.  The attendant didn’t tug, pull, or grab (which I am sad to say happens a lot and causes more harm than good).

After a short time the doctor returned and discussed the x-ray results, follow up treatment and care.  He also stopped at the door and turned around when she mentioned her neck had begun to hurt.  He immediately reentered the room and took the time to examine it and reach the same conclusion I had, the muscles were tight from working to keep her shoulder and clavicle aligned.

chest x-ray

Upon discharge we wanted to thank him and discovered that he had signed out for the evening.  I got the impression he should have been off quite awhile before he left us for the evening but NOT ONCE did he make us feel rushed, crazy or unimportant.

I just wanted to share a positive hospital experience because I know too often all we hear are horror stories of rushed doctors, rude nurses, disbelieving staff and no one listening and honestly I always go in prepared to do battle or have a long wait.

I can only imagine the sight we presented with her wheelchair, an overloaded backpack (we take chips for salt, Gatorade for electolytes and water as well as current meds, drinks, and books or tablets), 3 hoodies, a cuddly and sometimes a blanky while bundled up like we were in the arctic but not once did the staff make a judgement call or show disrespect.

Do you have a positive experience to share?  Please do so in the comments or with an email to


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