Cyclical Vomiting Syndrome

First, thank you for your comments, e-mails and links for support. We do appreciate every single one of them. We are home now and getting settled back in. Maizie is now keeping down food and feeling better but still weak. We have a new diagnosis! Join us in another trip down the yellow brick road to diagnosisville!

The information on CVS (Cyclical Vomiting Syndrome) also known as Abdominal Migraines does not lie when it says determining a diagnosis can be a long and arduous process. The first time we considered the possibility that Maizie had CVS was back when she was about five years old and had a similar string of "episodes". We were searching online and came across it and thought, 'Eureka! This is it!" Well, the doctors all disagreed and we moved on. Maizie was even put through the invasive abdominal studies to determine a cause for the spells. Nothing was found. (Finding nothing is a big ol' red flag for CVS) Eventually Maizie was diagnosed with seizures instead.

Now, we are told that it is possible she still has seizures. We will find out for certain when we begin weaning her off of the seizure medication. A process we will begin once her strength has returned and we are certain this ongoing bout of CVS has ended. A prcoess that will make me nervous to say the least. She has a biological history of epilepsy so the neurologist is being extra careful. The weaning also has to be done very slowly since she has been on seizure medication for years.

Once again we have been thrown for a loop. We researched, saw doctor after doctor...all who agreed it was likely Maizie's episodes were seizures and or migraines. They were all accurate in that they were abdominal. The neurologists and the Cleveland Clinic all listened to our idea of CVS and said it was possible but that was it. There was always a little doubt since her episodes manifested so differently. I think ultimately the confusion with diagnosis came from the way her CVS presents itself. Maizie can have one episode a week and it will only involve vomiting and being very tired for a day. Every where I read this is not really mentioned as a characteristic of CVS.

The GI doctor way back when Maizie was a preschooler told me that children with CVS vomit several times an hour. Maizie's episodes are anywhere from one to six times a day. Of course we saw this same GI specialist in the hospital this week and he insisted that he had given Maizie a diagnosis of CVS way back when and we never returned to see him. Are you kidding me? I would have known if we were told anything about a diagnosis since we were beyond desperate to find help for Maizie. Joe was less than thrilled with the meeting he had in the hospital with the GI doctor but both agreed they needed to focus on the "now" and move ahead to find relief for Maizie. Depending on how this GI specialist treats us at our follow up visit we may be "moving on" to another specialist. If there is one thing I have learned it is to not waste my time putting up with doctors who treat us like we are idiots.

I was confused because Maizie's episodes look so much like a partial seizure. Her eyes blink, she becomes disoriented, fearful, unable to communicate, sweats profusely and the list goes on. It is all followed with a long sleep just like seizures can be. If you look up the postictal part of the seizure that describes what it looks like for Maizie.

It is amazing that we have not seen more hospitalizations in the past few years. When Maizie was a baby/toddler and preschooler she was often hospitalized for dehydration for ongoing vomiting that was often attributed to some unknown source and then they subsided for a long time. We focused on more pressing behavioral and learning difficulties. When I read where some children are diagnosed at the age of two or three I think, "What on earth did we do wrong?!" How was this missed for so many years? You can't help but beat yourself up. Along the way though we were also searching for more than just answers to these episodes. We had ongoing developmental, behavioral and other health concerns that we were trying to find help for.

Many of the parents know who read this blog there are so many aspects to helping your child that some take front and center while others take the back seat. These aspects tend to shift and change as time goes on. When health issues arise the developmental issues go on the back burner for a time. As a parent of a child with multiple challenges moving back and forth between the pressing concerns and the not so pressing concerns is beyond exhausting and many times very confusing. All the while you try diligently to make some sort of balance and sense out of all the areas you are trying to help your child with. Of course you also want your child to enjoy simply being a "child". This, to me is the most heart breaking aspect of working towards a diagnosis. Maizie has spent much of her child hood lying in bed, with the lights low feeling very sick intermixed with very challenging behaviors, depression and learning challenges. Where do you fit "normal" childhood experiences into all of that? It is hard, very hard. But you have to do it. Above all that has been our first and foremost focus for Maizie.

Over the last few days I could see Joe and I going through several emotions with this new diagnosis. At first we were both filled with anger and just felt furious with every doctor we had to talk to. On Sunday after our second trip to the emergency room we were talking to the neurologist and she told us that the vomiting needed to be looked into. She explained that it was not seizure related and that something was going on. I handed the phone to Joe and choked back tears. I could not stand the thought of more testing, of more "not knowing". Once at the hospital again the GI specialist insisted that without a shadow of a doubt Maizie had CVS. The pediatrician and neurologist agreed. I was once again angry and devastated. That passed and then we felt sadness and hopelessness and finally a sense of relief that there is hope now that we know what medications will help Maizie through the episodes. Finally, we felt hopeful and relieved.

The confusion comes in when we realize we have been through this before. The list of wrong diagnosis’s she has been given is long. Very long. So, why does a diagnosis matter? Is this just another wrong diagnosis that we will study and treat her for only to be disappointed when treatment does not work? God, I hope not.

I hear some people speak of never wanting to put a label on their child. I think the labels they are talking about are indeed diagnoses. Why did we search and search for a diagnosis. The answer is simple. Without a diagnosis you can't properly treat the symptoms. Without a diagnosis or a label you can't gain more knowledge of what it is you are trying to treat or accept, sometimes even celebrate.

If CVS is indeed what Maizie is dealing with we now have the proper medications to help her get through the painful, ongoing episodes. For years we have not provided her with pain medications or anti vomiting medicines to make it through. We treated her as if she was having a seizure. Once rested we encouraged her to get up and get moving! I believe pushing her to make the best of the situation would sum it up well. Now, I look back and my heart breaks a little because now we know she needs sleep and lots of it during these times. Maizie will need an ongoing medication to help her avoid the CVS episodes. Stress should be kept very very low. (That we always try to accomplish) The abdominal pain is intense and we did not know Maizie was in so much pain. Did I repeat myself? Possibly, since this for me is the most painful part of all of this. My daughter has been suffering with this for years and we put her on the wrong medications and failed to treat her pain. Of course, live, learn and move on. Once we found new ways to discuss these episodes with her we realize she was having pain all along and it was not being acknowledged or treated. Her inability to communicate pain has played a part in missing this diagnosis for so long.

This brings to mind her diagnosis of autism which affects her ability to communicate. Without this diagnosis we would not necessarily have known to try out Lindamood Bell which helped her learn to speak and read, therefore increasing her ability to express herself. For Maizie the road to the Autism diagnosis was almost as long and torturous as finding the CVS diagnosis. It was not until after discovering her chromosome disorder that the Cleveland Clinic diagnosed her with autism. Doctor after doctor told us wrong information as to why Maizie was NOT autistic. Maizie was said to be too verbal, she made eye contact and was just too social to be autistic. I am not a doctor but I knew from the autistic individuals I talk with that these were certainly not characteristics set in stone for autistic people. Finding someone that would listen to us was a different story all together.

So tonight as Maizie is beginning to smile again and has begun walking on her own I feel that ball of hope welling up within me. Maybe this time we have finally found the answer to her ongoing vomiting spells (a.k.a. seizures). Maybe this year will be the year that when she goes into an episode we will finally know what to do to help her and it will actually help!

I can say that this bout of CVS has caused me to meet my medical goals quickly for Maizie. She had her echo and it came back with one minor abnormality that will need to be looked into when she is older. Luckily, nothing to stay up nights worrying over. This week she had her abdominal ultra sound that came back fine. Maizie has had every blood test known to man in the last three weeks and all have come back normal. We are still waiting on her test results for Rhett's Syndrome and Fragile X that the Cleveland Clinic wanted done....but I finally had them taken so that was an accomplishment! Her 72 hour EEG has been done and led us to the diagnosis of CVS. Her iron pills are working and have taken care of her anemia. All in all, we have made progress. Accurate Diagnosis=Progress. God willing you will read my blog soon and find out that we are out and about again. Hopefully every post will not be about vomiting and searching for answers. I often wonder if I began blogging back when Maizie was a baby...what would it look like? I have lost friends due to our ongoing search for answers. I know some people think we are overly obsessive and some not so cool people even think we make this stuff up and just enjoy the endless drama of it all.

I had one friend say to me tonight, "It is a good thing you have the personality to deal with all of this and get the answers to help Maizie."

I cringe. It is not a personality. It does not matter if I am an extrovert or an introvert, and INFJ or an ESTJ. What matters is that I love my child and I want her to have a childhood. Maizie deserves to be well and happy. Hopefully, my friend, no matter his or her personality would do the same. Maizie has a chromosome disorder, she is autistic and now we are pretty certain she has CVS. All of these make up my lil'Maizie and I love every part of her. I love her autism, I love her chromosome disorder and amazingly enough I love her CVS. Maizie is Maizie and these aspects are a part of her but they are NOT her and yet they make her unique, they make her the Maizie I love. But, through knowing they are a part of her we can assist her in taking these very unique things about herself and moving forward with them. They won't be going away anytime soon.

I will admit that back in the day I was, for a time, "a curebie". Who would not be after every doctor we went to just said, "Hmmm...she sure is a complicated child." and sent us on our way. But, I found the outlook of searching for a cure exhausting and fruitless. Not to mention looking for a cure without a diagnosis is even more exhausting. By the time we got the diagnosis I had come to accept that I needed to change and adjust my expectations. Suddenly, the world seemed brighter and everything shifted slowly. It is weird to describe and I truly believe that only parents who have been there and then experienced that switch to loving the diagnosis can understand. And yet, the best way to go about in finding the correct diagnosis, the correct treatment and the willingness to adjust our expectations and change bits of ourselves (okay, large bits of ourselves) to assist Maizie is not about personality it is simply all about love. Call me cheesy but that is my biggest remaining feeling after this roller coaster of a ride these last several weeks. Finally....an answer. Is it the right answer? Argh! Time will tell! I hate the waiting, the wondering. No, I despise it.

As I am babbling on here I am sure some think, "So if you could wish Maizie into not having these diagnoses would you?" Ah, that is the million dollar question. And what good comes of asking it. Nothing, my dear. Nothing at all.