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Monday, January 31, 2005 |
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Brady had Seizures
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| Just wanted to let everyone know that Brady had two seizures this afternoon.We gave his seizure med to stop them.It will be anothor sleepless night,as I will be up all night on Angelwatch.Seizures really are the downfall of this syndrome.We could do without them thats for sure.He is doing good,just playing and planning on staying up all night.Alright,pajama party!!!Keep us in your prayers.Hope we can gets meds straight soon. |
posted by angelwings
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10:20 PM
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Saturday, January 29, 2005 |
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Getting Ear Tubes
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| Just wanted to let everyone know that Brady is getting his second set of tubes in his ears.We took his brother to the doctor and on the way to the doc brady was messing with his ear.So on a hunch I had his ears checked too.When the doc was done checking them,he said that they both need tubes.Peyton because we have been treating them for about 3 mths,and Bradys because of still having fluid in his ears,and because they dont want to risk him loosing his hearing on top of everything else.We talked to his ped.and he sent us for a second opinion,and that doc confirmed it.They are scheduled Feb.4 to get tubes.But hey,at least they get to do it together hugh!Just pray for them and us.We will have 2 little ill boys on our hands.I will update and let everyone know how it goes. |
posted by angelwings
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11:09 PM
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Friday, January 21, 2005 |
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ANGELMAN SYNDROME
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Our Story:
May 21,2002 our son Brady was born. It was the second greatest day of our lives,the first being when my oldest son Peyton was born. Brady had a normal beginning in life, the future was bright and full of ideas. We new right away that he was a perfect Angel, little did we know just how right we were.
The first little while was great,a little reflux,but otherwise normal. Between 2 and 3mths something happened, he stopped eating, became very fussy, something just wasn't right. He would hold the bottle in his mouth and would start to suck,but gave up very easily. It would take about 3 hrs to get a couple of ounces in him,we literally spent all day just feeding. The doctor nor us, knew what was wrong or what to do. Finally after rapid weight loss and soon to go into the hospital to get a feeding tube,and being diagnosed with "failure to thrive", I had enough and was desperate. I took a steak knife and just split the nipple on the bottle, thickened with rice cereal,and pour it into his mouth,no work involved on his part. I had tried boiling the nipples with tooth pics in them, making small splits in the nipples, so as trying not to drown him,but nothing worked. Finally after the big split, he was eating again, we were back on track.
Okay so now that we had him eating again and he was gaining a little weight, everything seemed ok. So why did I still have this feeling in the pit of my stomach, that something wasn't right? Between 3 and 4 mths, he seemed a little weak, but otherwise okay. He did however have a hard time after every set of shots. He would scream for hours. His doctor, at that time, assured us that everything was ok, to just give him Tylenol. The doctor said that it is normal for kids to cry and be fussy after shots, but I don't think he meant, for hours and hours,come on! By 5 mths he was a little behind,nothing major. By 6 mths he was no where close to sitting, which is a major milestone.At this age, he would arch his back and push backward, he hated the idea of sitting up. By 8 mths, still not sitting, something wasn't right, I knew, call it mothers intuition. At about 8 and a half months he had his first set of seizures.
He seized for about 20min before coming out of it and going into another one,that seizure lasted about 20 minutes as well. We didn't know if he would make it,and if he did, would he ever be the same again? Well he did. They called the seizures atypical febrile seizures. Atypical because there was only one side jerking,and febrile because he had a fever at the time. We didn't know what was happening. Our world was being turned upside down. Little did we know, that this was the first of many trials and tribulations to come.
Brady soon got out of the hospital, still not sitting by 9 mths, not pulling up, not crawling, but rolling well. We started our first Physical Therapy, and first seizure med, phenobarbatol, still with no reason for all of the seizures, delays, etc. He seemed as though his balance was just a little off. We were reassured by therapists and doctors that he would get it. We prayed for the best and expected the worst by this point. We knew in our heart of hearts, that there was a problem, but just didn't know if we were ready to face it. I guess that our biggest fear was something progressive, that could possibly take our little guy away from us.
Anyway I decided against , doctors orders, to take him to an ENT and just have him checked. Yep they found fluid in both ears which both ENTS thought had been there since he was born,this was great news,it explained so many things. Okay so because of being so behind and having a few ear infections before,the ENT and along with his dad and we chose to go ahead with tubes. He started sitting the very next day. We finally felt like we were getting somewhere, getting some much needed answers. Life was finally beginning to make some kind of strange sense to us.
But......... Pheno was a nightmare. Our precious little Angel went from the sweetest little baby in the world,to the worlds fussiest baby. He was just there, not responsive, other than to cry. He was just laying there, so not like him. He was changing. We expressed our concerns to the neuro and he just assured us that he was fine,that it was the safest medicine available. After 2 "normal" EEGS,and 9mths later we had enough of this medicine. Why hold him behind, since he was already behind before the meds? The neuro wouldn't hear of taking him off or changing meds. He was the doctor and he knew best, not!! We had to do something. So against doctors orders, and through a lot of research, we weaned him off. After a couple of weeks, our Angel was finally back, the sweet natured little man we knew he was all along was back. Thank God.
He done fine for about 9 mths. He did continue to miss milestones. He didn't walk, no talking, a little babbling, but not alot. But we just blamed it on the fluid in the ears, and the pheno, an all out rough beginning. I will admit, we were somewhat in denial that it could possibly be anything else. We hoped he would catch up! We tried to reassure ourselves that he would be fine, but deep down as parents we knew there was more happening than just him needing to catch up. We knew something wasn't right,but just didn't want to think that it could be something serious. We longed for some normalcy in our lives.I went to bed with him on my mind and prayed so hard,that he would be fine,and that we could put this nightmare behind us.And he was the first thing I thought of when I woke up every morning,the situation consumed my life. We dreamed of the day that our little boy would become a "typical" little boy.
He was between 18 and 20 mths when he had another set of seizures. He was hospitalized several times with seizures within that year. We then started discussing the possibility of something more serious such as chromosomal testing. We were hesitant for a while because we knew there was no magic pill for any chromosomal disorder,what is the point of knowing we said. I guess a part of me was so afraid that it would be something life threatening,I just couldn't face that.But after so many hospitalizations,and being transferred to a children's hospital 4 hrs away. We did decide to go ahead with the tests. We needed to know what was causing these horrible seizures,and find out what the future held for our family.
They explained to us that they thought he had Angelman Syndrome,we had never heard of it. They said we would have to wait til the tests came back to confirm it. In the mean time they did tell us that he had epilepsy,and he was put on a new med called Lamictal. They said it would take about 8 weeks to get the Angelman tests back. This is every parents nightmare,having to wait that long for such possible life changing news. That was one of the hardest things I have ever had to do,just wait!
After that hospitalization,we changed peds,we had to have someone closer to home,as we couldn't drive nearly 2hrs one way with him seizing. This was the best thing we could have ever done for us,and for Brady. Our new doc was concerned,compassionate and really listened to us. He says that the parents know their child better than anyone. He is the ped that seen Brady in the hospital after the first set of seizures. There again,God was working things out for us.
Anyways after the last hospital stay,we went home,and I got on the net, as I had done many times before. But this time was different,I had something new to search for. I typed in his symptoms,as the doctors listed them,and it pulled up Angelman Syndrome.I was in shock. My husband and I knew at this point that he had it. We prepared ourselves as best we could,for the test results. After a couple of weeks,the neuros office called to tell me that they had made an appointment with a genetics lab and to let me know the date. I then asked,does this mean he has it? She said she didn't know.Of course we said,why else would they make the appt if he didn't have it. I swear,some doctors and staff need a class for people first skills! After that I then called my ped and told him about it. He then called them and in return called me back. He said that it appears,he has a deletion in the maternal chromosome Ube3a. I knew what it meant,but I just had to ask "so he has it?"He said "yes,I'm so sorry". I was all alone with my son,and utterly devastated,I just held him and cried. I prayed for God to help us deal with this seemingly tragic news. There was just no way to be prepared for that kind of news,even though, I thought I was. I had tried to push those ,what if, thoughts out of my head until now,but I couldn't do that anymore. I just had to deal with it.
My husband came in from work that day and I told him,what he already suspected. He was devastated too. He just held him and we just stared into those beautiful blue eyes,and we wondered what kind of life he would have,what kind of future he would have. It was so hard to tell our family and friends. It did take us a little while to get used to the idea that our son was "mentally retarded",as the doctors so coldly told us,gosh I still cringe when I hear or say that word! I don't think of him that way. Brady is the same beautiful,loving,gentle little soul that he has always been from the very beginning,nothing has changed. He is the perfect little Angel,that God intended him to be.
Since that time he still has seizures,but is doing great otherwise. He will be 3 yrs in May and doesn't walk,we think he will soon though. He cant talk and they say he probably never will,but only God knows that and he is in the miracle working business. I feel honored that God thought enough of our family to let us look after one of his Angels! We have grown as individuals and as a family. We don't look at him as challenged anymore,we look at him as a blessing. He is great! He is innocent and has a pure love for everyone and everything. He brightens the day when he comes in,he just lights up the room. He loves to go shopping because it gives him a chance to socialize. Boy did they get that name right when they called him an Angel,there couldn't be a more fitting name for him. We said that if he has to have something like this,at least he can be happy,as that is a major characteristic of this syndrome,and he will have a normal life span most importantly,we are truly blessed! You can look at the cup half empty for half full,but I can assure you that if you see it as half full,it makes life so much easier.
I ask that you not feel sorry for him,but learn from him!He will most likely lead a better life than most of us. He draws anyone who meets him near and makes new friends where ever he goes. He has a huge loving,supportive group of friends and family members,great therapists and a great pediatrician.He has an exceptional big brother that looks out for him. We are truly lucky! God has blessed many peoples lives through our little Angel. Isn't God great!
I want people to not be afraid to talk to people who have special needs,or are not just like you and I. We to used to shy away from people who have special needs,or are different than ourselves,as do most people,afraid we might not know how to react,or just not know what to say. We are different now as our little Angel has changed our outlook on many things. So instead of turning the other cheek to these special people,embrace them,learn from them,they are great teachers,if you just take the time to listen. Brady says many things,with no words at all. Its in his smile,his laugh,and in just the way he treats everyone equally with the same amount of love,and passes no judgment on anyone. I just hope that his story can help those who do not understand people with special needs,to realize that they are human and that there is a story behind that face. They want the same things out of life as you and I,and that is to be loved and accepted. Just because Brady isn't your typical child,doesn't mean that he isn't just perfect,the way God intended him.God doesn't make mistakes!
Brady is currently in physical therapy,hydro therapy,occupational therapy,and speech therapy. He is doing great and we are so proud of him! He adores the water. He will do almost anything we want him to do as long as he gets to play in the water,the little fish!So hydro isn't work for him at all,its playtime.
This is a very rare disorder and there are only about 1000 diagnosed cases in the US and Canada combined. It is often misdiagnosed or isn't diagnosed at all. I want to bring about awareness,so that people can learn to recognize the symptoms and learn how to treat it,as there is no cure at the current time,only therapy,but it is important to start treatment as soon as possible. Most of all we want parents and loved ones,to have some type of closure, and not have to live in question, wondering what is different with there child. I used to say that I didn't know what was worse,to know or not to know. But now I know that is not to know.I just didn't know how lucky we really were.
Mommy of Angel Brady,Peyton,and wife to best friend and best daddy in the world Craig
DON'T FORGET TO COMMENT! |
posted by angelwings
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11:35 AM
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