Monday, November 28, 2005
Now she is gaining some ground. After another appointment with her Neuro they upped her Keppra from 1ml twice daily to 2.25ml twice daily and added B-6 for her irritability, also to check to see if she had a B-6 deficiency(very very rare). It turned out that she didn't. The Keppra again improved her seizures for a few days only for them to return in higher numbers.
Then on November 3rd her seizures started getting worse they climbed back up to 86 head drops a day. So I called the Dr. and he prescribed her with Klonopin which is an older drug. We were a bit hesitant in the beginning because it causes sedation which is not what we wanted but we wanted the seizures cut out so we decided to give it a try.
This turned out to be a great decision as it cut her seizures out immediately. We started it on Nov. 7th at noon and Tuesday she didn't have anymore this went on for 3.5 days until they returned mildly. We started seeing brief nods here and there. During the 3.5 days she would do this weird eyebrow twitch we found odd but we didn't know what to look for besides the classic head drops. She is now having anywhere between 2-15 head drops a day which is much better. We have gained so much ground in these past few weeks with just having these mild seizures. She has started babbling, smiling, laughing and blowing raspberries again. She has found her hands all over again which is adorable it looks like she is praying(seen in upper left picture).
She also has found her tongue, she loves to stick it out all the time which is hilarious. She is so sweet and we are loving all new things she is giving us. What's next for her? See below:
Cameran goes back to the Neuro on Friday, December 2nd to see what they will be doing next. He has talked about starting ACTH and if that doesn't work they will try Vigabtrin(which isn't offered here yet but we can get it from Canada w/a prescription). Her pediatrician signed her up for Early Intervention last week at her 9 month check-up. They called this morning and are coming Tuesday, Nov 29th to get her started they will be getting my pregnancy history with her and all her medical info that we have, so they can get her evaluation started. We are hoping to get her back on track as she is delayed in her speech. She doesn't play peek-a-boo or clap hands etc. some things they will try working on with her. Her vocalization is picking up lots and she started saying "mama" which just made my day, but she was saying dida last week. So she is coming around which is wonderful news. Oh yeah this months weight was down from last month she weighed 18 pounds 15 ounces and was 30 inches long. She isn't eating much here latley but she has a bad runny nose so that might be the cause.
Cameran had her 1st MRI on Sunday, October 2, 2005. She did wonderful. They requested her not to eat 5-6 hours prior the scan which wasn't that difficult because she was still allowed juice up to 2 hours before. They used Propofol for the mild sedation it doesn't knock her all the way out she is still awake but they needed her to lay very still for the scan. We arrived there at 10:30am and was pushed back 45 minutes because her juice wasn't what they considered clear. The reason for this is so they don't start coughing and it turn into pneumonia. After the scan which only lasted 45 minutes they brought her back to the recovery room where she came right out of the med quickly and we were able to leave an hour later. She was such a Big Girl, having slept through the whole process sedated and not... :)
The scan came back normal which was wonderful news but is still leaving us in the question zone???? She still has no known cause to her having this which is so frustrating. But we know that no known cause is a better outcome for her because she was on track before being diagnosed.
She is still having 10-50 head drops a day but seems to be in better moods compared to last month. It's so strange to us to watch her have these great days with hardly any seizures only to turn around the next day to have a dozens of them. Cameran's neurologist called in a new med Keppra and she has had great response from it although it knocks her out. She has been having nights where she doesn't sleep well and is up for a couple of hours at a time and others night doing just fine. She is all over the page with everything. She got down to as little as 9 head drops for a few days only for them to creep back up on us. On the plus side of this med it is slowly bringing back her playful side and she even let out a slight laugh at her brother that we hadn't heard since the day she was dx at the Hospital. I was in tears since I hadn't heard it in so long...
On 10-11-05 Cameran started a new move. When her head drops down her arms and hands would shake. It was so scary. She did this 38 times in a row w/in 5 minutes time and it was so hard on her she got so upset with everyone she did. Her head being harder and harder to pick up after each one compared to her normal ones where she just lifts it back up. We hope this isn't a new seizures type coming on. We talked to the Dr. about it and he says its hard to tell w/out seeing it but it could be another form. She has only done this 3 different times.
Her development this month is getting better. She is squatting down to pick things up and trying to climb. She is also starting to play with toys again but it doesn't hold her attention very long. Since starting the Keppra she has started this constant moan that we hear non stop it sounds as though she is in some sort of pain but she is not. We guess its the only noise she knows at the moment. Her appetite has gone way down some days being better than others. But she is weighing in at 19 pounds 3 ounces and looks every bit of it she is a little chunk full of energy. She won't play much but boy can she move she is a fast crawler. She is determined to not let this get the best of her! GO BABY GIRL ......
Thursday, November 24, 2005
Cameran Alyssa was dx with Infantile Spasms on August 16, 2005 at 6 months of age. She was ahead of schedule and was crawling, pulling to a stand, laughing and babbling up a storm. Then the seizures took over and she lost the ability to babble, smile and laugh. Things we held dearly! Cameran was doing well even though she was having 158 head drops a day and having as many as 75 head drops right in a row but she started losing things she had already accomplished. After 2 weeks of being dx we just noticed one day she wouldn't respond to her name anymore then she stopped laughing and babbling. We could barely even get a smile out of her. These pictures were taken just 3 weeks before this all started. Here she was such a happy baby. We were so glad to have captured these photos of her before IS started. The Zonegran didn't kick in for about 2 weeks before we started seeing a difference. She had her vaccinations the week after being dx and they seemed to agitate it even more. On September 12, 2005 she had another EEG where it was still showing hypsarrythmia. These are especially hard on Cameran as they ask her to be sleep deprived. Hard to do when you have a 45 minute car drive. But she was great although her hair was quite a mess afterwards. It took 4 hair washings to get all that glue out. To this date she is still having 20-65 head drops a day. She usually has 4-5 clusters a day ranging from 5-30 head drops in a row. The Zonegran keeps her in a daze and she doesn't play she will just crawl around in circles and pull up on the sofa and stare at the walls. Brother is having a hard time understanding why she doesn't play anymore but loves her just the same!
Cameran will be going for her 1st MRI Sunday, October 2, 2005. We will see then if there are any problems seen there. Cameran's seizures seem to increase more and more everyday. It's strange but once they up her meds we will see the seizures go down for a couple of days. Then a few days later they will start to climb back where they were. Some call this the "Honeymoon Effect"!
All the meds have really taken a toll on our baby girl. When she first was started on Zonegran she stayed in a complete Daze. She wouldn't play at all. The Predinsone made her appetite increase and she started gaining weight but once off of it she started to lose as side effects from the others. It is a constant rollercoaster ride on trying to find the one that works for her.
If you want more info on all her meds she is on and side effects, I pull it all off the website below where it lists all meds for Epilepsy and there side effects:
Here is a list of all the Medicines Cameran has tried and ones that she is still on.
Cameran trying so hard to beat the meds"
Medicine Name: Start Date: Dosage:
Topamax 12-20-05- 1/2 of a 25mg pill daily for seven days and up the dosage by another 1/2 weekly until reached full dosage 2 -25mg pills a day
Zonegran 8-19-05 -7mg twice daily
Predinsone 8-17-05 - 5ml once daily (Dosage go down every week)
Zonegran (Upped to) 9-1-05 - 25mg three times daily
Zonegran (Upped Again) 9-17-05 - 50mg twice daily
Keppra 10-6-05 - 1ml twice daily
Keppra (upped) 10-21-05 - 2.25ml twice daily
B-6 10-21-05 - .25ml once daily
Klonopin 11-7-05 -.25mg twice daily
She is still on all these meds except for Predinsone and B-6 these did not work for Cameran.
About the meds and side effects:
*Side Effects of Topamax: Just to name a few Kidney Stones(to be montiored by blood tests),fatigue,drowsiness, difficulty concentrating,loss of appetite and inadequate sweating( to be monitored in hot weather because they tend to not sweat causing temps to rise*
Side effects of Zonegran: Kidney stones and Irritability
*Keppra is a new medicine some side effects are: Loss of strength and energy( not in Cameran's case she is full of energy) and irritabilty
*B-6 is mainly to help out with the irritability and to see if she has a B-6 difficiency(very very rare) but she didn't.
*Klonopin is an older drug and some side effects are: Sedation(being the main thing), Drooling, Hyperactivity, Nausea, Loss of appetite and can be addictive.
All the meds have seemed to work for her in some way. In her monthly reports I will give her reactions to these meds and what they have done for her seizures.
Cameran was born February 7, 2005 weighing in at 9 Pounds and healthy. She has always been the sweetest baby girl and barely even cried. She ate wonderfully and was sleeping through the night at 2 weeks old. She was always ahead of schedule as her development goes rolling over at 3 months, sitting up at 4.5 months, babbling (she would say hi, da, ma, ga), laughing, crawling, pulling up on things and pushing self up to a sit position at 6 months. We never saw anything unusual from her except being startled very easy more than normal we always thought it was a little strange but never thought much of it.
Then on Monday, August 15, 2005 at lunch time she was in her walker playing and her head dropped down like she was tired. She lifted it back up and then she did it again, I then got the worse feeling in my stomach. I thought maybe she was just tired but then she did it again. So I picked her up and rocked her and she went to sleep. I still had it in the back of my mind something was wrong but couldn't be for sure she has always been healthy and never has even had a cold. So when she woke from her nap she was playing in the floor and started doing it again but this time her arms would come up beside her head. So I called her daddy immediately and he rushed home where he saw her do it too and thought maybe it was just something new she was doing. Her head would bob down as though you are tired and her arms would come up she would do this 10-15 times in a row lasting about 3-5 minutes. When she was laying down on her back her knees would crunch up and her shoulders would shrug. The more she started doing it we knew something was wrong so we called the Pediatrician. We took her in at 5:00 they looked at her and of course she didn't do it while we where there. They tested her reflexes, eyes and ears. They thought maybe she was getting sick and was off balance.....WRONG! We new in our hearts that it was more than that. So we went on about the day and she started having them in the carseat where I noticed her eyes cutting to the side when her head would drop down.
So come Tuesday morning, August 16, 2005 we called the Pediatrician back and left a message and described this to him he called back told us to take her to Vanderbilt's ER in Nashville immediately that it sounded like she was having seizures. So we went down and we began the process of describing what she was doing, we probably had 4 nurses and 10 Dr.'s come in for us to describe this over and over again. They would look at us as if we were crazy. We were there 5 hours before she did it again. They had wheeled me and her down to have an EEG done and we were sitting in the hall way and a woman walked by and caught Cameran off guard and it scared her and she went right into the head drops again(arms coming up also)! So they Dr.s stood around watching her and said it was definitely a seizure of some type but that's all they said to me at the time. So they told the EEG tech. to video her during the EEG. The EEG went smoothly they swab places all over her hair to get it clean then they place a glue substance on the swabbed areas then put the electrodes on the glue covered by a small square cloth on each one. Then they rap her head to keep it all in place(she looked like a mummy). This she has to lay very still for. Cameran was very tired from all the excitement and slept through the test which is what they wanted then woke her up at the last part of it to do the flickering light test. So after the test we went back to the ER room(which was really nice very kid friendly, they even had toys and movies for Caleb) The Dr.'s came in about an hour later and said she has Infantile Spasms and described it to us and the outcomes of it. They also told us she had Hypsarrythmia on her EEG which is a way to dx for IS. We were shocked and couldn't believe what we were hearing we had never heard of such a thing. Here we had
a perfectly healthy baby that has been right on track only to be thrown off course by this. They started her on 7mg twice daily of Zonegran and 5ml of Predinsone and that dosage would go down weekly.So this is where it all begins. She was dx with Cryptogenic/Idiopathic Infantile Spasms on August 16, 2005. Meaning that there is no known cause(Idiopathic) and Cryptogenic meaning there can be it just hasn't been found yet. We will keep this updated monthly as time goes on to give you all news on what meds she is on and how she is doing.
Heres are family:Mommy, Daddy, Big Brother Caleb & Little Cam(snoozin)
Wednesday, November 23, 2005
Infantile Spasms are often initially mistaken for other conditions. However, prompt diagnosis and appropriate treatment of infantile spasms are critical. Soon after the spasms begin, children may stop making development progress or even lose skills they had previously aquired. Swift and effective treatment may provide the best development outcome possible.
The exact number of children who suffer from Infantile Spasms is not known, but it has been estimated that it affects 1 out of every 2 or 3 thousand babies. Infantile Spasms usually begins between 1 and 12 months of age and usually goes away on their own, even if left untreated, by the age of 2 to 4 years old.
Diagnosis is extablished on the basis of clinical manifestations, although the characteristic EEG finding of hypsarrhythmia is found in up to 80% of cases. Hypsarrhythmia consists of a unique, chaotic pattern of asynchronous, high amplitude slow waves and spikes which is peculiar to this disorder.
The spasms really are spasms of the muscles that affect a child's head, body, arms, and legs. The spasms commonly occur in clusters (grouped together). These movements may be small and barely noticeable, like twitches, or be large movements of the arms, legs, and body, followed by stiffening of those parts. Infants may have dozens of clusters and several hundred spasms per day. The intensity and/or the number of the spasms may increase, decrease, or stop altogether over time. The spasms tend to occur when the baby is tired, usually just after waking up or just before going to sleep. They rarely occur during sleep.
What Causes Infantile Spasms?
Doctors sometimes can find the cause of Infantile Spasms, and sometimes they can’t. Because of this, doctors have divided patients with Infantile Spasms into two groups.
The first group consists of patients in whom an underlying problem can be identified (also called the symptomatic group). The kinds of problems that can be found in this group are many. As was mentioned earlier, the most common cause is a lack of oxygen to the baby during delivery. Other causes include such things as mothers who had infections during pregnancy, mothers who had been exposed to certain chemicals during pregnancy, and babies who have abnormal brain development for other reasons.
The second group includes those patients in whom no specific underlying problem can be found (also called the cryptogenic group) after different medical tests (blood tests, spinal taps, CAT scans etc) are done looking for a cause.
It is important to divide the groups this way, because children in the first category (symptomatic) almost always have problems for the rest of their lives (epilepsy, cerebral palsy, mental retardation), while patients in the second category (cryptogenic) often make a complete recovery.
Is there any treatment for Infantile Spasms?
The two most common treatments are medicines called Prednisone and ACTH (abbreviation for Adrenocorticotropic Hormone). These are related to the extent that both have something to do with cortisone, a chemical normally made in the adrenal glands of the body. Prednisone is a pill form of cortisone. ACTH is a hormone normally made in the brain, but which can also be given as a medicine, to stimulate the adrenal glands to make extra cortisone.
Cortisone has been shown in many cases to stop the spasms. Most doctors think that controlling the spasms with early treatment with Prednisone and ACTH improves the chances of these patients developing normally.
Another medicine used to control Infantile Spasms is vigabatrin. It is currently not approved for sale in the United States because of some of its side effects