Today is better
March 4, 2008 at 7:13 pm (Neurologist, Seizure)
Tags: infant, Infantile Spasms, klonopin, Seizure
Yesterday, Emma seized all day. We tried the Klonopin but it didn’t seem to work. We put Emma to bed last night expecting to call the neuro this morning. Emma was still sleeping at 9am so I woke her up. At 10:30am I called the neuro, but instead of telling them that Emma was still seizing, it was to tell them that the seizures seemed to have stopped.
So far for the day, we have been seizure free. Emma’s been a little sleepy, but I expect that to happen after her poor brain goes thru all of that for almost 2.5 days. She’s even back to talking like she used to and even a little bit of rolling over.
Let’s all hope that it continues.
On another happy note, thank you all who voted for Colgate to give Children’s Hospital of Michigan an extra fun center. The winner should be announced on the website today. However, if you look at the current vote tally, Detroit is in the lead. Thanks to all of you, there will be some happy kids at CHM who really deserve the extra Fun Center!
Some days are good…
March 3, 2008 at 4:29 am (Seizure)
Tags: infant, Infantile Spasms, Seizure
…and some days aren’t.
The seizures have started again. We went 2 days being seizure free. I guess her levels of Topamax still aren’t where they need to be. I went to get the Klonopin but found that it’s not a common drug to keep in stock at the dosage that was prescribed. They had to order it. Dr. McCormick also wrote it is DAW (dispense as written) and used the brand name and not the generic drug. I’m not sure if there’s a difference, but the pharmacy is going to order both until we can find out Monday.
I know that watching Emma seize is hard for Jon. You can see by the look on his face how helpless he feels.
I feel the same way. There are so many days that are great. Emma gets her meds and is happy, talkative, and smiley. And then there are these days when the seizures come back.
It’s hard to watch Emma seize. The faces she makes. The movements she does over and over again. We try to do the best for our kids. Breastfeed because it’s so good for them. Make our own baby food. Try to not over medicate. Keep them safe. But I can’t stop the look of pain on her face, even though seizures aren’t supposed to be painful. I can’t stop the shivering and the repetitive motions.
I can’t fix this.
I just can’t.
Hopefully the first of many…
February 28, 2008 at 10:09 pm (General)
Tags: infant, Infantile Spasms
…many times that Emma rolls over on her own!!!
Not once, but twice, did Emma roll from her back to her belly…..and then back again. And she did it twice! Did I mention it was all on her own? And that she did it twice?!
I’m a little excited, if you didn’t notice.
Colgate & Children’s Hospital
February 28, 2008 at 7:30 pm (General)
Today is the last day to vote! Please go vote and tell everyone you know to help out. Detroit is in 2nd place at the moment with 31.45%. The first place has 32.21% of the vote. It is possible for Detroit to win! Thank you all for voting!!!
Neuro 2/28/08
February 28, 2008 at 6:41 pm (Neurologist, Seizure)
Tags: infant, Infantile Spasms, klonopin, neurology, seizures, topamax, vigabatrin
We had our neuro check-up today.
We started off with an EEG at 7am. Although they said Emma didn’t need to be sleep deprived for it, she barely woke up to get dressed and slept thru the entire test. This time I could see the test on the screen. That was very frustrating for me. I could see all of the brain activity, but I had no idea what any of the ups and downs meant.
Afterwards, we saw Dr. McCormick. She seemed very pleased with the progress Emma’s made. We increased Emma’s Topamax dosage yesterday to control the seizures she was having. They seemed to have stopped today.
The EEG today was clean. No seizure activity. That’s very good news. Emma spent her waking moments yesterday seizing on and off.
Dr. McCormick is hoping to be able to wean Emma off the Vigabatrin. We will increase Emma’s Topamax dosage each week. If she is doing well on the final dosage, then we will probably wean off the Vigabatrin.
Since Emma’s seizures happen in clusters, Dr. McCormick gave us a perscription for Klonopin. These are disintegrating strips to place on her tongue that should stop the seizures in 30 minutes or so.
We are also getting a chromosomal test done to see if there are any defects on that level that would cause the IS.
Dr. McCormick believes that the IS is symptomatic, not idiopathic. We didn’t ask, but we are wondering if she would classify Emma’s IS as crytopgenic as well. Idiopathic means there are no other associated symptoms, but we don’t know if her delay is due to the root cause, or do to lack of time/energy to develop due to the seizures. Really, only time will how Emma will do.
They’re back
February 27, 2008 at 10:11 pm (Seizure)
Tags: infant, Seizure, topamax
The seizures are back. We’ve increased her dosage of Topamax. Now we wait for her levels of Topamax to get high enough to control the seizures again.
We have an appointment with Dr. McCormick tomorrow morning as well as an EEG.
The seizures aren’t a big surprise. All of Emma’s medication is based on her weight. So as she grows, her dosage will have to get bigger. It’s just frustrating to go seizure free for 2 months and for them to start again. Especially after the the 2 days of PT this week and both PTs commented on how well she’s doing.
For now we wait while Emma goes between seizing and sleeping. And hope the meds level out to control them.
Boy is there a lot to tell
February 20, 2008 at 9:26 pm (Food, Neurologist, Ophtamologist, Physical Therapy)
Tags: infant, Infantile Spasms, neurology, ophtamology, Physical Therapy
I am so far behind. I know I have a hard time keeping up with this blog. Thank you all for putting up with me. 
There is so much new stuff to tell. Let’s see if I can remember it all.
Food
Emma is really taking to eating her food. She has mostly stopped pushing it out with her tongue. She does have a knack for only pushing out the larger chunks that I’ve missed with the blender. Her favorites are mostly the orange foods: carrots, squash, sweet potatoes. She did like the macaroni & cheese I made for her and the carrots & potatoes I cooked with the roast. I’ve blended up some roast to give her, so we’ll see how she likes that. Fork-smashed peas were not her favorite, though I’m not sure if it was the flavor or the texture.
Neuro
So far, our neuro appointments have been going well. We’ve had an EEG that came back normal. Dr. McCormick was pleased with her changes. Obviously, Emma is still behind, but the progress she’s been making is great.
We decided that due to Emma’s inconsistency in responding to noise, we would give her a better hearing test. The brainstem auditory evoked response (BAER) test is performed to help diagnose nervous system abnormalities and hearing losses, and to assess neurological functions. The test required her to be sedated. We kept her up late and got her up early. After getting the very small dose of sedative, she was out. The tech hooked up 4 electrodes to Emma’s head and put a set of headphones on her ears. For 30-40 minutes, different sounds and tones were played in each ear and the electrodes were able to tell if the sounds were making it through the proper channels to her brain. We will find out the results of this test at our next neuro appointment at the end of February.
Ophtamology
We had another visit with Dr. Baker. With her exam and dilation of her eyes, Dr. Baker determined that her vision was worse than our previous visit. We discussed Emma’s use of Vigabitrin and how it could effect her peripheral vision. Dr. Baker said he would talk to some colleagues in Canada about this, since they would know more about the drug. Vigabitrin is the drug that Emma takes to keep the IS seizures suppressed. Dr. Baker mentioned that we may want to do a ERG (electroretinogram) to measure the electrical responses of various cell types in her retina. This would give us a better idea of how the Vigabitrin was effecting her.
PT / Early On
Emma has been making tremendous progress with her PT. At least as a mom and dad who watched our baby go from being a relatively normal 3 month old progress and regress over the next 4 months, we think it’s amazing.
Emma’s PTs and OT comment each time about the progress she’s making. At the beginning of our Early On sessions, the people involved did an assessment of Emma and the things she was capable of. It was these assessments that qualified her for both PT and OT each week. The PT, OT, and general coordinator each set 3 goals for Emma to reach over the next year. The PT has stated that Emma has reached the PT goals already. At the moment, I’m not sure what the new goals will be.
Emma can hold her head up more consistently while on her belly, will sit up straight with support at her hips and lower back, has much better head control, will hold an item for a few seconds, sometimes makes consonant and vowel combinations, and reaches out to explore the world around her. Emma also has no problem expressing herself with fussing and crying, something that we went months without hearing.
Genetics
We had our first appointment with a genetic counselor last week. With the high hydro phenyl acedic acid in her urine, Dr. McCormick wanted us to talk to a geneticist, Dr. Bawle. After giving a family history, Dr. Bawle examined Emma. She explained to us that it was possible that a genetic mutation could cause Emma’s IS. A usual symptom of such a mutation can manifest in a physical way, facial features being different or other deformities, however small, on the rest of her body. Emma doesn’t really have anything like that on her body, so Dr. Bawle didn’t think it was a genetic deformity. But to be on the safe side, she suggested getting a chromosomal screen done the next time we have blood drawn for tests. They also ran another urinalysis and the results came back the same as the other tests. There was a high amount of the aforementioned acedic acid, though it wasn’t as high as the other tests. It is possible that the acedic acid is a by product of the phenobarbital that Emma is taking. We have been weaning her off of the phenobarb. The lower level could be indicative of the weaning.
Overall, Emma is doing great!!!! She is very alert and loves to look around and take in her environment. She has even moved on to smiling and the occasional laugh, something I wasn’t sure we would hear again, or at least not for a very long time. We continue to take each day at a time and are so happy at each little milestone she reaches. It gets easier each day to be hopeful that Emma will make it through it all and be an amazing, beautiful little girl.
Children’s Hospital of Michigan
February 9, 2008 at 1:56 am (General)
Please go vote here. Colgate is donating a Fun Center to all of the hospitals on the list. However, whoever receives the most votes will receive an extra Fun Center.
Fun Centers are mobile units that provide endless entertainment and help turn worry into laughter and weariness into delight! Fun Centers feature a flat screen monitor, DVD player and a Nintendo® Wii. The Centers roll right up to a child’s bedside to provide hours of game play and movie watching.
In 3.5 months, Emma and I have been in the hospital 3 times. We are hopeful that we are done with those experiences, however, we know that it is likely we will have to go back at any time. And while Emma is too young to use one of the Fun Centers, the children we’ve seen in the hospital definitely deserve this welcome distraction.
Even though we don’t know what is wrong with Emma and each visit has been a scary ordeal for us, each time we have gone, I feel like we are so lucky. Emma has no idea why she’s in the hospital and has spent most of the time sleeping. The older children that have been there don’t have that luxury. They are there, some in pain, and need something to take their minds off of where they are. Children’s Hospital of Michigan does the best they can to provide distractions for the kids, but any extra help is always welcome.
Please go vote! And vote every day!
http://www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/show-the-love.cvsp
Diagnosis mistake explained
January 25, 2008 at 6:42 pm (Neurologist)
We had a neurologist appointment on January 22, which generally went well. One item that we learned during that appointment was the explanation for the initial Canavan’s diagnosis. The diagnosis came about due to the high level of NAA in the urinalysis that was run at the hospital. After the contradictory results from the MRS, the urinalysis was re-examined. In fact, the NAA levels were not high, but were the result of a misreading: the level of another chemical was mistaken for the level of NAA. Then, since Emma was still doing poorly after her bout of seizures, the physical exam seemed supportive of the Canavan’s diagnosis.
Those six days were a nightmare, and by far the worst in our lives. However, neither of us hold anything against the doctors for this mistake. Errors happen, and the doctors followed up appropriately. We suffered from a bad combination of events, starting with the misread of the urinalysis, compounded by how poorly Emma was doing that day, extended by the radiologist leaving before we had results (he didn’t know we were waiting for them), and finally extended even further by the holiday weekend. Almost any other time that this could have happened, the mistake would have been caught in a day or two.
The doctors involved apologize for the mistake, and we warmly accept the apology. As we have expressed, we would rather they think they found something, tell us, and go through the process of confirming or disproving it, rather than miss something and make things worse in the future.
Emma's Grace
