Overcoming YOUR tiny obstacles

It makes me so happy to receive emails and read some comments from some mothers who come across this blog looking for some answers after hearing the words Ocular Motor Apraxia. I find it very interesting and informative to read your stories, but, this blog was meant to inform other parents, so I feel that keeping those stories to myself isn't fair. This is why I'm launching the series: Overcoming Your Tiny Obstacles.

I would like to ask you, yes, you, the mother or father of a child with OMA and/or severe developmental delays, and I also want to ask you, the teenager or adult who has/had any of these conditions, to share your story with us. I would like you to use this platform to share your story.

To do so, I came up with a format, to have some sort of continuity and to make sure we get the most basic information from everyone. I will ask you to please follow the format described below as much as possible, and to send it to me.

1. Introduction - 1 paragraph. Begin by mentioning whether you are a mother of, grandparent of... or your are the one with OMA/developmental delays. Include your child's/your name, or, if you prefer to remain anonymous, you can use a nickname. I do ask, however, that you include the country and state/region you live in. Tell us what's the medical diagnosis.
2. Background. 1-2 paragraphs. Tell us how and when (age) did you find out about it. Tell us what type of testings you got done, and the findings in regard to the causes, if you know them. Let us know if any of your health issues also run in a sibling or any other member of your family.
3. Issues. 2-4 paragraphs. Tell us all the issues related to the diagnosis. Does your child have speech delay? Hypotonia? How these issues affect your child's development in the house, at school... in his daily life?
4. Eradication. 2-4 paragraphs. Tell us what are you doing to ease the symptoms. Do you take/took therapies? Have had any surgery? What specialists have you visited? Vitamins/supplements? What has worked for you and what hasn't? Has any of symptoms disappear or has become less severe on its own as your child grows?
5. Conclusion. 1-2 paragraphs. Anything else you want to add.

I hope you take a moment to share your story. Use this forum to let us know how you are helping your child, or to tell us how you are doing after having any of these medical conditions. Ocular Motor Apraxia is a rare disorder, so we need to use tools like this to connect with others in our same situation, and to inform those who are looking for answers to something that the medical community knows so little about.

We can't wait to hear from you.

Is it possible to overcome Ocular Motor Apraxia?

I have to start by saying that Patrick's abnormal eye movement wasn't severe. But it was noticeable. And it was often. When the eye doctor saw him for first time, Patrick was about 11 months old. I still remember that appointment very well. One single item moved in front of Patrick from left to right, at a slow speed, and Patrick's eye couldn't follow it properly. The doctor knew immediately: This is called Ocular Motor Apraxia. Patrick has Joubert Syndrome. He suggested to see him back a year later to check on his vision.

Weeks later we saw a Neurologist, who requested an MRI, which showed Patrick's brain didn't have the "tooth" sign, hence he didn't have Joubert. Ever since, the only diagnosis we have is "underdeveloped cerebellar vermis" which can cause speech delay, balance and coordination issues, and the abnormal eye movement among other things. We have also been told that there is no surgery, medicine or anything that could possible cure the brain abnormality, and the only way to help our son is to address each of the developmental delays we may encounter along the way. But, what about the eyes? Well, we were told he wouldn't completely overcome it, but he could learn to manage it as he grew older, hopefully by the time he became a middle school age child.

We were told all that.
Patrick showed us otherwise.

Ready for school

I made myself educated in OMA, but, as most parents of kids with rare conditions, we have to follow our instincts on most things as it's very difficult to find information or to even get it from the doctors. He still can't talk, and back then he was only a baby incapable of explaining what he felt and how, so I had to guess. I also learned to read my son's body. Very soon I figured out that his abnormal eye movement was even more noticeable when he was tired, so I made sure he slept well during naps and overnight. It helped. The more I was reading articles and his very own body, I began to do other things, which I have been sharing since I began my blogging journey.

Every now and then I would check on his eye movements, by performing the same simple test the doctor did at his office. As the months were going by, I had to speed up the movement of the objects, because he stopped having problems with the slower ones. Was he getting better, that fast? I didn't want to get too excited just yet. Friends and family also would tell me that it seemed like he was getting better. The first time I took him to Mexico, my family found out about his OMA. Seven months later we went back, and they all told me how less noticeable it was. You seemed too worried last time you were here, and look, he is fine now! Were they just trying to make me feel better?

One day I sat down to pay close attention to Patrick's eye movement while he was playing with his little brother. He was playing to throw the ball and make a basket, something he enjoys doing despite of being told by the doctor how uncomfortable he would be with such activities. I hardly noticed the eye delay throughout the whole time. With the incredible yet apparent progress, and having Patrick just turned 3, I figured it was time to see again the eye doctor. I was very curious to see what he had to say in regards to his Joubert Syndrome, since it was him the one who assured us that was what he had.

Favorite game at ChuckEcheese? Throwing balls!

Once at the doctor, Patrick was very shy but cooperative. One object, left to right. No problem. Next object, faster, right to left. No problem. The doctor had to do it several times, faster and faster, to eventually catch the delay. The doctor turned to his computer to take a second look at the impressions he wrote down on the first visit 2 years ago. The doctor couldn't believe his eyes (no pun intended) -the fast improvement was obvious. That's when I started asking him about why he believed that Patrick had Joubert Syndrome despite the neurologist saying otherwise. He said the neurologist makes a diagnosis based on the readings of an MRI, whereas he makes a diagnosis based on the symptoms. According to the symptoms Patrick had back then, he had Joubert Syndrome. He acknowledged how doctors know very little about this rare condition, so he said most of them categorize them all under Joubert Syndrome. Like with any other health condition, there is a spectrum... and we believe some kids are more severely affected, some kids less.

Then he took another look at Patrick and how well he was performing the tests. We told him about his speech delay but that he has been walking and running very well, and developing -slower than most kids, but otherwise well. He took a quick look at his medical records, and saw that his kidney tests (a common issue in JS) and other tests came back all perfect. He then realized it can't all be Joubert Syndrome, as it would be too silly to say Patrick just happens to be in the lowest end of that spectrum. We told him about the study UW is doing and that we have decided to participate. He said hopefully they will be able to tell us the name of whatever rare condition Patrick has. He was very happy we were cooperating in these type of things, and asks us to share the results with him whenever we got them back.

At the end of the appointment, he expressed again how amazed he was to see how quickly Patrick had progressed. I needed to hear that. I have been hearing it from my husband, from friends, and I have even noticed it, but I needed the specialist telling me that he has progressed so quickly it feels like a miracle. Patrick is doing so well I don't have to see him again, unless, of course, there is regress... But, he is doing unbelievable well. Whatever it's you are doing, just keep doing it.

I will keep praying. And hoping. And loving him unconditionally, because that's all I have been really doing.

Happy New Year dear friends and family.

Patrick made a friend with OMA

On my last post I mentioned I recently joined a Facebook group for people who have Ocular Motor Apraxia. Right after I joined the group, I asked if anyone on there lived in the area, because I was hoping to do a play date and get to learn more about what other people in my area are doing to help their kids.

It turns out, out of the 300+ active members of the group, the person who told me about this group and myself are the only ones living in the area. I realized then, as people were commenting, that many of them don't even live in United States. However, one person living in North Carolina said she and her family were coming to DC to visit some friends and would like to meet with us. The mother and I started an email exchange and we decided to have them over at our house. I was curious to ask her tons of questions about her son, but I figured it was best to wait until we met. Finally the day arrived, and we met at our house. We spent around 3 hours talking and discovering how many similarities our children had.

To begin, our OMA kids are boys. They also turned 3 this year (Patrick being older than Brendan by a couple of weeks). They have one healthy brother (Patrick's is younger by two years, Brendan's is older by almost two years).

In the ways they have developed, there are also similarities. Patrick and Brendan walked around the age of two, have same level of speech delay, a bit of balance and coordination issues, their feet pronate and so they both wear the same type of braces, and neither one have had an specific diagnosis other than Ocular Motor Apraxia. Other areas seem to be perfectly normal in both kids, with the only difference being that Patrick has some constipation issues, while Brendan's head thrusts some times. Brendan seems to be somewhat ahead on fine motor skills, while Patrick seems to be somewhat ahead on gross motor skills. Neither one of them is potty trained, although neither one of the parents have tried too hard... we are kind of waiting for them to show that they are ready so we can start the transition.

Their likes and habits are similar, too. When I opened the door, my husband was in the living room waiting for them. I tried to say hello to everyone and didn't pay attention to something my husband did: As Brendan was coming into the house, his tongue was sticking out a bit, holding it between the lower front teeth and his lip, just like Patrick does. My husband told me later that when he saw that, he knew immediately that of their two boys, Brendan was the one like Patrick. As we chat through the afternoon, we learned that they both enjoy water, cuddling with the parents more than the usual, are sweet, and good brothers. They both recently discovered they don't want to be dressed so it's a battle putting clothes on them. Neither one is a fan of the TV, but both love music. While the siblings were playing and acting like nothing was going on, Brendan and Patrick knew something was going on and they proceeded to act with caution. They were checking out the whole situation before they decided to start playing. And only after playing for awhile on their own, they decided to approach each other. Talk about similar personalities!

Brendan has a very nice family. I was very excited to see both mom and dad totally hands on. The way Brendan's parents have dealt with his condition, is the same way we have dealt with Patrick's condition. We both know very little about their diagnosis, and even though that was a burden at the beginning, now both parents feel that's actually an opportunity to not let our kids be defined by an illness. We don't know what to expect, so we take care of the obstacles as they come, if they come. We are trying to raise them as if they were two perfectly healthy children, but of course, not losing sight of their small disadvantages, like speech delay, for which we take action and help them with whatever is needed.

Brendan hasn't had an MRI, but I have the feeling that if he had one, his brain would look almost identical to Patrick's. As much as I wish there were not other children with rare disorders, it's also comforting to know that there is someone out there so similar to your son. That are parents out there going through the same exact thing you are going through. This must be a gift from God. At some point I was going bananas, because I felt that either there were healthy kids, or there were very sick kids. No kids like Patrick. The kids with OMA I learned about online, also have other diagnosis, symptoms, conditions... that Patrick doesn't have. Patrick's development is a little slow, but he can do anything and is very healthy otherwise, so I feel blessed that we found a friend for Patrick, just like him.

We all find friends we can relate to. With some, we have same likes in music, with some others is politics, or religion, or hobbies. Think of every friend you have and you will find you have something in common with everyone of them. Patrick just met a friend that has almost everything in common, even that rare thing in the eyes called Ocular Motor Apraxia. I'm looking forward to see how our kids develop, and if their likes and hobbies continue to grow similar. I'm looking forward to more play dates with them, and while we are some miles away and may not be able to see each other too often, I know we parents will do our best to keep the friendship to provide our kids with opportunities to spend some time together every now and then.

Merry Christmas Brendan and family.

Ocular Motor Apraxia Research by UW

A couple weeks ago I received an email from a person who came across my blog, who has a child with OMA and happens to live near where I live. Actually, our kids have even visited the same doctors! The email exchange has been really helpful to me so far, as the woman was kind enough to let me know about a facebook group for people with Ocular Motor Apraxia, and mentioned to me a research on Joubert Syndrome that she is participating on.

The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.

I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.

If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.

My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!

Loving our special children

I have mentioned a few times how I'm so glad that Patrick's developmental delays aren't severe, how glad I'm that he doesn't have Joubert Syndrome (a common thing in kids with OMA) and how glad I'm that most of his current health issues will disappear or at least diminish as he grows. I know that many of you who come across my blog, have children with Joubert syndrome, or with severe development delays, or with a health condition that won't get better after awhile, and that, perhaps, may get worse. Please know that by saying that I'm glad that Patrick isn't in that situation, your situation, I'm not trying to say you are in a bad situation. I'm not saying that I feel sorry for you and that you should feel sorry for your child and for you. Not at all.

I do have a child, Robert, who is healthy. He doesn't have any of Patrick's medical conditions. Knowing that Robert is healthy makes me so happy I feel like celebrating. It excites me beyond words to see him developing like most babies. I giddy when he learns a new trick very quick and on his own, like crawling, pulling up, giving steps with support. I'm a proud mamma when I see he is even ahead in the game compared to other babies his age. But, does Robert's healthy development make me feel sorry for Patrick? Does this mean I love Patrick any less? Does this mean, that I'm not proud of him? Do I have to live frustrated about his condition? Are we in a bad situation because of Patrick? Should I regret having him? Not at all. I love Patrick with all my heart. I would give my life for this kid if I had to. He is my favorite toddler in the world, and I can't believe I'm this lucky and blessed to be his mother. He brights my days, just like his brother. Just like his brother. He is my son, just like his brother. And that's all what matters to me.

And I know that's all what matters to you, too. I know you love your child dearly regardless of how he was born, because he is your son. I know, too, that as long as you love your child, there will always be a worse possible condition, for which you are thankful you are not in. You see, I love Robbie and I feel blessed to know that he is not in Patrick's condition. And you know what? I love Patrick, too, and I feel blessed (yes, blessed), that he has Ocular Motor Apraxia, without having Joubert Syndrome. I'm sure you love your son, and so you feel blessed that he has Joubert Syndrome, and not cancer, right? I thought so. You love your daughter, and despite of having cancer, you feel blessed that she is still fighting for her life. You love your son, that may now be death, but feel blessed that you got to have him once with you. Because having a child, regardless of how terrible his health condition is or was, will always be better, than to never have had him at all.

If you are a parent, then you know that you are in the best situation possible, and that's to be the parent of your child. Even if you were blessed to feel him only in your womb for a few months, you have experienced motherhood, and that's wonderful. God blessed you by letting you carry one of his special creations. God trusted you to be a father to one of his little angels. You are in the best situation. Regardless of what you suffer now, regardless of your struggles and your fears... no illness can out-weight the blessing of having someone to call your child. And along these lines, there is a powerful story that was featured on ESPN last year and that regained popularity on social media recently: Heath White, was a successful man whose life turned upside down after finding out that his wife was expecting a baby with Down Syndrome. He asked his wife to have an abortion, but she refused, thankfully. Weeks after the baby is born, Paisley touched his father's heart, making him change from being a truly egocentric person, to a loving, caring and proud father. You can learn more about their beautiful story here.

Sometimes I wish Patrick didn't have OMA, like I'm sure you wish your child didn't have Joubert Syndrome, or Down Syndrome, or Cerebral Palsy. These health conditions should happen to bad people, not little innocent babies. There are times when we wish they had been born perfectly healthy, there are other times when we accept they are sick, but wish they got cured already. And that's OK. Just make sure that the times that abound are the ones when we value the better person we have become, because their special needs were craving for that better person.

Had my son been born a perfectly healthy child, I would have never learned to treasure his sibling's first steps as much as I do. Had my son been born a perfectly healthy child, I would have never tested my strength, my patience, my perseverance, in the way I have. Had my son been born a perfectly healthy child, I would have continued to be a religious woman, without knowing what truly means to have faith in God. Had my son been born a perfectly healthy child, I would have never met all the special mothers, and wonderful therapist and friends I have made thanks to his condition. Had my son been born a perfectly healthy child, I would have never started a blog, with the only purpose of helping someone I don't even know. Had my son been born a perfectly healthy child, he wouldn't be him, and that would be a shame.

Antibiotics during pregnancy: Cause of Patrick's health issues?

Last year, I wrote a post titled Could I have prevented Patrick's health issues?  The conclusion was that I couldn't have. Fast forward to today, there is a chance that I could have prevented Patrick's health issues after all.

A few months ago, I came across an article that talked about speech delay, something we have been dealing with in the past months. The article talked about a study performed to find out how antibiotics affected children while in the womb. The fact is, I have read in MANY places how antibiotics during pregnancy could cause most of the health issues that Patrick currently has, but I really didn't pay much attention to any of that simply because I didn't take antibiotics during my pregnancy. This time, however, in the study performed, women who took antibiotics up to one month before conception where considered as "having taken antibiotics during pregnancy".

I took antibiotics within one month before Patrick's conception.

On February of 2010 I got sick with a bad cold. It was a Saturday when I was feeling the worst so my husband took me to an Urgent Care. It turned out I had pneumonia. The doctor wrote a prescription for an antibiotic and sent me home. The medicine was making me feel very nauseous and sleepy but after a few days I started to feel better. I made an appointment with a family care physician anyway, whom I saw the following Monday and who has become our family physician ever since.

Couple months after the incident, I found out I was expecting my first child. I was (and am) completely sure that I didn't take the medicine while being pregnant so I knew Patrick couldn't possibly be affected by it. That's what I had believed all along up until the day I read the article. To read that women who took antibiotics up to one month before conception were considered at risk gave me the chills. Patrick was believed to be past his due date when I was induced, but once he was born, the doctor said that he was actually born two to three weeks early. So we don't know for sure how many days are from the last dose of antibiotics to his conception day. It may be slightly over one month, or it could be couple weeks.

 Also, I recall that when I saw the family physician, she said she didn't understand why the doctor at the urgent care had given me that particular antibiotic, because it was so strong that the symptoms are awful, and so she didn't like to prescribe them. So there is a possibility that with the medicine being so strong, it could have taken longer for my system to finally be antibiotic-free. This makes me so angry and sad, because regardless of whether Patrick was affected by it or not, to know that antibiotics could potentially harm babies that are still to be conceived makes me wonder why doctors don't have the courtesy to tell you so. They sure tell you to not take certain medicines if you are pregnant or breastfeeding, but they won't tell you to wait at least a month or two after the last dose to get pregnant, specially with drugs that could potentially harm the baby in the womb.

I guess I will never know for sure whether or not taking antibiotics before conceiving Patrick was the cause of his health issues, and while some may think there is not point on worrying about "what if", I thought it was important to write this to make women aware of the dangers of antibiotics during pregnancy, even if you aren't pregnant just yet.