The School Year (and the chaos) Has Arrived…

Well summer is over for this year. It was great, as always. My girl rarely has problems during the summer. Maybe an occasional migraine or complaint of mild nausea, both of which usually respond to her prescribed medication. It’s nice. She did have to endure another upper endoscopy because they wanted to see if her previous one cleared up because of medication or if it would stay clear while off of the medication, indicating that her Eosinophilic Esophagitis (EOE) flares up seasonally. They had her stop the medication after the clear scope for a few months and then did one again in July. Well, the eosinophils were back so she likely had gotten better because of the medication. The next step right now is while still off of medication to start an elimination diet. She cannot have any of the top 8 food allergens for three months and they will scope her again to see if she is better. EOE is thought to be caused in part by food allergies. That means no wheat, dairy, eggs, soy, peanuts, tree nuts, fish, or shellfish. If the scope is clear, meaning the elimination is working as a treatment, we can slowly add foods back and “trial” them one at a time to see if she can tolerate any of them. It isn’t easy, but if it helps her feel better we will do it. And she is such a big girl now. Such a trooper and has a good attitude about it. She has goals she wants to reach and knows that this may help her get there. 

So now we have started the school year. It always causes extreme anxiety in me. It means making sure the school has all of the necessary paperwork and information they need about CVS, how it affects her, what to expect, and now I get to include tons of information about EOE and food allergies. And let’s not forget migraines and what to do for those. It also means worrying about if they will follow her 504 or update it when needed and if they will work with us when she is absent. And then, so far anyway, there is the eventual and inevitable ugly necessity to fight for her when they don’t accommodate her as they should. Being an advocate for your child can really drain you, but i wouldn’t have it any other way. She is my beautiful, smart girl. I am so proud of her. And I will ALWAYS stand up for her. I will ALWAYS advocate for her. These struggles will only build her character and help her to continue to grow into the amazing person that God has planned. 

Don’t tell anyone, but I tattled

We are never alone in our struggles. It seems though all CVS’rs and their families are different, we are also very much the same. The same in the constant fight for awareness and in the advocacy we feel we owe our loved ones and others with CVS.
I think this mom did great. Her son is still a minor. Furthermore, she will always be his mom.
I think about these things as my now 5th grader gets older. She doesn’t mind my intervening on her part right now, but I know one day she will want to make that choice on her own. God knows, I hope she outgrows CVS as some kids do, but I hope He also grants me the wisdoms to teach her when and where to stand up for herself and when it’s ok to let others help do it for her.
To this CVC momma: I think you are doing great. Thank you for sharing!

Crazy Ms. Adventures, with a side order of rants

As I mentioned in my last post, Chewy (my son and CVS’r) has not been doing well. The inpatient has been scheduled. But, we have to get there. That is a struggle.

Chewy has been taking his maximum amount of meds a day. Still trying to maintain school and college classes. He’s behind in school which is stressful and there was a deadline that added more pressure and stress that incurred more issues for our already struggling CVS’r.

The college class is an energy drain. When you have Cyclic Vomiting Syndrome, you most likely already have energy issues. But, we were encouraged to work on rebuilding the muscle that Chewy lost a while back when he was very, very ill and his body used the muscle to survive.

So we did that.

But, I will admit that we chose the wrong time.

See, we should have done the muscle rebuilding…

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Thinking Outside of the Box

Thinking Outside of the Box

Let’s face it, traditional medicine isn’t always enough. Sometimes it is time to think outside of the box. We have had to use untraditional methods such as self hypnosis (taught to my daughter by a Nurse Practitioner in our GI Clinic), belly breathing, guided imagery, positive self talk, acupressure, and aromatherapy to help relieve symptoms – just to name a few. One thing in particular that I have found to be helpful is the use of essential oils. Not just for aromatherapy, but for ingestion and topical use as well. These oils have tremendous benefits. For us, we have been able to use them to boost immunity, decrease anxiety or stress, soothe nausea or abdominal discomfort, or even increase alertness and focus. We have been able to find and create our own blends that boost feelings of security or peace. These oils are truly priceless to us. I don’t stick my neck out often to brag about products, so you know I believe in something if I do. For me, I only trust Young Living to provide me with pure therapeutic grade essential oils. There are many companies out there selling oils, but YL owns every one of their farms and has incredible oversight and are the most trusted brand in the industry. If you are interested, you can follow this link to learn more. Essentially Oily Life – Independent Distributor for Young Living Essential Oils. I also highly recommend the use of acupressure and hypnosis, as well as guided imagery and positive self talk. Traditional medicine can be amazing, but so are our bodies and minds. Sometimes they just need a little help to unlock the power within. We have some options. And that’s a good thing. 

One last suggestion – my daughter’s doctor suggested an app called Healing Buddies Comfort Kit. It is amazing. It teaches children techniques to help themselves feel better. To self soothe and self heal. It may not make symptoms go away completely all the time, but it definitely can decrease them most of the time and is also GREAT for a relaxation tool. 

Well, that’s all. I really didn’t mean to go on and on so much. But maybe something I said will help someone. That is my goal. 

God bless and Happy Easter!

On the other side…

On the other side…

We are FINALLY on the other side of the episode.  Our winter long misery has ended.  Just like every year, it is over in March.  I have my happy, normal 10 year old back.  It is really quite amazing.  No matter how many times this happens, I still am floored by the predictability of this syndrome.  It starts and stops like clockwork at the same time, every time.  That is why it is called cylic, huh???  I know, I know.  But, like I said, no matter how often I see it…  Oh well, for now I am going to enjoy having my sweet girl, my goofy, laughing, spunky, funny girl back!  And I am going to pray that next November we don’t start over again. I am going to pray that she outgrows it this year.  And if she doesn’t…we will deal with it together.  We may be knee deep in vomit again, but we are ALWAYS knee deep in love.  That is year round.

Invisible

CVS is what is called an invisible illness.  It is invisible because those that it attacks do not have visible scars, cuts, rashes, broken limbs…you get what I am saying, right?  Because of this, it’s victims are often misjudged and considered to be faking or exaggerating their symptoms when, in reality it is a common known fact in the medical community that people with a chronic condition learn to “live there”.  For example, people living in chronic pain learn to live with the chronic pain.  They still have the pain, it is still just as bad as if you or I had the pain, however, their faces may not show it.  If they showed every time they were in pain, they would never do anything but scowl, cry, and double over.  Therefore, they “live there”.  It doesn’t mean they should have to.  Ironically, even though the medical community is well aware of the fact that chronically ill people do not always show on their faces how poorly they are feeling, they are often the first to judge.  Especially in an ER setting or in a setting where it is not that patient’s usual doctor taking care of or assessing them.

I have experienced this first hand with my daughter when the idiot resident in the hospital says, “She must be fine because she was watching TV.”, When in actuality she was laying in bed with her eyes closed and had the TV on so that the noise would distract her from the pain and nausea.  I guess they skipped the chapter in med school too where distraction is a legitimate method of pain relief.  Another way I have noticed this discrimination of those with invisible illnesses is when my daughter, who is homebound for school and often feels too sick to even do her school work, actually sucks it up and does her work and puts on a front for the teacher and sits through a homebound session of school despite feeling horrible and then they come back and say, “Well, she seemed well enough to go to school.”  Are you kidding me???  They didn’t see her vomiting and writhing in pain the whole night the night before or passing out the very second they leave!  It is sickening that you have to justify putting on a good front and doing what everyone has been asking and expecting of you to do even when you feel bad!  It should not then come back and bite you in the butt!  And so what if she did feel good for one hour??? Shouldn’t that be a good thing?  I guarantee you if it is just an hour, putting her in a car and making her carsick to drive her to school WILL NOT be worth it.

Anyway…that is my soap box for today.  Please, if you know someone who is chronically ill, take them at their word for how they feel.  If they seem to feel better than they say they do, odds are that they are putting on a front – FOR YOU!

Please see the link at the bottom of the page.  It is written by a young girl with an invisible illness and it is a very good article.  It is written from her perspective on living with and being judged on having an invisible illness.

 

 

 

 

Invisible Illness – what it does (and doesn’t) always look like…

 

 

The Sound Only a CVS Mom Can Identify from Across the House:

I belong to a group of moms that possess a special talent.  We did not sign up for this group by choice and we developed the talent by necessity.  And although we did not choose any of it, we use the talent willingly and gladly because it is born of love.  Love for our child.  You see, that talent, as unglamorous as it is, is the ability to hear and identify the sound of puke hitting the floor (or whatever surface is in its pathway) from any room in the house, no matter where our kiddo is in that house.  We are the moms of kids with CVS (Cyclic Vomiting Syndrome).  And although that does not sound like a big deal, it is of great comfort to a child who is suddenly hit by a debilitating episode of nausea, vomiting, possible severe abdominal pain, and possible fever, and even a headache.  For these kids who will no doubt need to be in bed with a bucket next to them in the coming hours or days, it is of tremendous comfort to have their mom hear that sound and come running to their rescue.

As much as I have grown used to hearing that sound, it still breaks my heart every time I hear it.  I surprises me that when I hear it I still let out a defeated sigh and literally feel deflated and I feel my whole posture change.  I don’t know why it still surprises me.  I guess surprise isn’t really a good word.  I guess that each day I start off hoping that it will be the day we don’t vomit.  Right now, we are in her cycle season.  See, my daughter cycles in seasons.  Her CVS is unusual.  She does not have week long cycles or cycles that last a few days or hours.  Hers lasts all fall/winter.  She is great from mid spring and all summer and into the beginning of fall, but then she begins to get sick again every single holiday season.  It starts around Thanksgiving like clock work.  And every year I think that maybe this will be the year it doesn’t happen.  Maybe she has outgrown it now.  We only got the actual diagnosis last year, so this is the second year I have actually been able to put the feelings into organized thoughts, but it has always been there.  I have always dreaded the winter because she has always been so sick during this time of year.  At least now we have a name for it.  But last week I thought maybe she was feeling better.  I was wrong.  Well, she may have felt better for a day, or a few hours.  But that was it.  I got my hopes up for nothing.  I was so hopeful that she would be back in school this week, but it didn’t happen.  She is having a horrible week again this week.  She has had migraines and increased vomiting.  I feel so bad for her.  She is having a hard time even getting her school work done that they send home for her to do while homebound.  She has terrible brain fog and absolutely awful debilitating fatigue.

We are hoping for an end soon to this misery for this year and that it does not come back next year!  The doctor we saw last week feels confident that she will outgrow this.  I sure hope he is right!  He was very comforting and very knowledgeable about CVS.  I am happy to have finally found a doctor to follow her for CVS that knows so much about it and how to treat it.  I am also comforted that we got yet another confirmation in her diagnosis.  It is always good to know that you are on the right track as far as treatment and/or management.  We have to drive three hours to see him, but it is worth the drive to actually have a doctor that knows HOW to manage this illness!  I will drive that drive every time for the proper treatment.  I guess that is what you have to do when you or someone you love has such a rare illness.

Diagnosis Confirmed with Biopsy: Eosinophilic Esophagitis

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Well, We got the biopsy back and my little peanut has Eosnophilic Esophagitis.  The treatment is  steroids.  Hopefully we will see some relief from some symptoms soon.  That’s what they tell me.  However, I need to do some more research to know what I believe as my confidence in the doctors we have been seeing is faltering.  We are scheduled to see a new doctor for her CVS next week so maybe we will know more then.  I will post more when I actually understand more about the treatment and how it effects the big picture.  I am being brief today about this because I just don’t know that much yet and am a little overwhelmed, to be honest…

In the ER…Being Admitted…Starting my blog…

Last night…

Last night I started to take my sweet girl to the emergency room.  I had talked to her doctor and told them that I feel it is time to be more aggressive.  I mean, good grief, she has been home and basically suffering since Thanksgiving.  She left school for Thanksgiving break and has not been back.  She has only gotten worse despite all of the stuff we have tried.  The only time she has felt better was the one time she was in the hospital for five days.  She felt better on the last two days and when she got home felt better for a few days around Christmas.  A few days later she was puking her guts up again.  Since then it has been downhill.  We started home bound school and got through a couple weeks.  Then she got so bad that she could not tolerate sitting with the teacher and doing the school work.  It has been a few weeks since she has gotten any work done at all for school. She begs me daily to make her better and nothing I do at home helps. I am giving her all of the medications that the doctor has told me to and still nothing is working. I call the doctor daily to uodate her and still no changes are really being made. None that matter, anyway. So I called and asked for her to be admitted. She said it wasn’t time yet. I pushed some more and she said to take her to the ER if she got worse. Worse??? Wow. Well, if she gets worse than vomiting daily and writhing in pain and buckling over and begging me to make her better all day I guess I’ll do that!  So…. Anyway, at midnight my sweet girl vomited what felt like about 10 gallons. I debated taking her to the ER then, but we had to be at the hospital at 7:30 in the morning because she was scheduled for an endoscopy. So if we left at midnight or as soon as we got cleaned up and packed up and then drove for about 45 minutes to get to the ER, we may end up waiting in the ER until time to check in for the endoscopy.

So…

Endoscopy 7:30 this a.m.

So we went to endoscopy this morning and she had her procedure which shows likely Eosinophilic Esophagitis which needs to be confirmed by the biopsy results that will be back later this week. Great. Another diagnosis. Probably more meds.

So THEN we went to the ER…

They prefer to do things the hard way on the neurology service so instead of just realizing that my girl was getting worse instead of better and admitting her directly from the GI Procedure Suite, they had us go to the ER.  Poor kid was white as a sheet and sooo nauseous …

I finally decided to start that blog I keep saying I am going to start….

Well, you know how the waiting is in the ER so… I keep thinking and thinking to myself that I need to start a blog.  I keep meaning to ask the people that I know in my CVS group on Facebook that blog about what site they use and some other questions about it.  Today someone beat me to the questions and I was so glad they did! I got the answers I needed and it prompted me to get started.

With that being said, I think it is important to say that I want the focus of my blog to be to educate and raise awareness about Cyclic Vomiting Syndrome.  It is not about me or how “difficult”  this journey is on me.  It is about my sweet girl and the other sufferers of this nasty monster we call CVS.  For that reason I am choosing, at least for the time being, to leave the blog as anonymous as possible.  I am trying my best to leave our names out of the posts. You would be surprised to know how difficult that can be!  I keep writing her name and then catching myself and going back to write something like “my daughter” or “my girl”.  I know that if I choose to share posts on facebook, the people that I share it with will obviously know it is me, and that is no big deal.  It is not a huge secret.  The thing is, I just don’t want or need this to be about me in any way.  I am also certain that at some point I will slip and put her first name or that if anyone comes across the blog and is familiar with enough of her situation they will recognize who we are – also not a big deal.  I just want my motive to be clear – to raise awareness and to educate.  Eventually I am sure that I will post my information in the profile. I will figure out when that time will be.  Heck, it could be in a year or it could be tomorrow.  I need to find out the best way to help others navigate this nasty stuff as I figure it out myself.  Many others have been there and helped me, and most of them have been online.  My online community is a blessing because there is hardly a soul that I can find locally with a child with CVS.  I have met one other person, but had to meet them online too because of the nature of this illness…My kiddo and I are basically shut ins six months of the year and she and her kiddo are as well when they are in the middle of an episode.  That’s CVS!

Admitted to the inpatient unit…

We are admitted now to the hospital.  It has been exhausting and was a fight to get her admitted.  I bet if the doctor had a child home sick and suffering the way mine has been and missing school for over two months they would have had them here already, but she did not want to admit my girl.  The ER doctor had to go above my daughter’s neurologist’s head and have a hospitalist admit her and suggested that we may want to write something up to send to her neurologist explaining our concerns and maybe be seen by a different neurology team.  I think she has a point.  I call that doctor daily saying that what we are doing isn’t working and I feel that it is time to be more aggressive.  I feel it is  basically abusive and cruel to leave this child home suffering to the point of begging her mommy to help her every day and to not strive to do more.  Why not admit her and at least try to help her feel better???  That is just insane and I won’t accept that she has no choice but to suffer.  I am so appreciative of the ER physician that stood up and was an advocate for my sweet little girl tonight!

Knee deep and signing out for now!