When Taylor was fist diagnosed with Infantile Spasms, we tried Phenobarb. hated that medication! She, within a few months was having absence seizures as well. She once had an 8 min absence seizure. She has over the course of 5 years had every type of seizure imaginable. We have tried Topmax and Klonopin as well. We have had good success with Depakote. She began this at 2 yrs and that has given us the most control. The only downside is the tremors she gets. Most people will have a mild tremor from depakote, or it will only last a few minutes. Hers are constant and seem to get worse as time passes. There is a possibility it is onlt partly related to the meds. The only way to really know if take her off the meds. Her neuro refuses to "unleash the beast" He is happy that we have the control we do. She has spasms througout sleep, some are the normal sleep myoclonus, some are seizures.
She will be having a 24 hr VEEG and a repeat MRI. It has been 2 years since either were done. We were hoping to get ti done in August, but we may not. She is doing good at the moment, so we arent in a huge hurry.
Sunday, August 12, 2007
Saturday, August 11, 2007
Introduction to Taylor
It is hard to find a place to really start with Taylor.
To be honest, she got screwed from the start. Sorry, but she did.
My pregnancy was awful and highly complicated. I was fairly young. My husband and I had already suffered a miscarriage. At about 20 weeks gestation (5 months) it was discovered that I had white spots on my placenta. Now a typical pregnancy will develop this as well. Just not until much later. A Placenta is only good for about 40-42 weeks, so to have it start to "go bad" halfway through is not a positive nor typical thing.
The only thing we can think of that led to this was the severe morning sickness I had. Even up to 28 weeks I was throwing up everything I ate.My OB/GYN decided at about that time that I needed to go on bed rest. My placenta was failing fast and the little girl I was carrying was feeling the effects.
I was RH negative and had to have the wonderful rhogam shot.By 30 weeks I was having bouts of preterm labor and being followed weekly through ultrasounds by a perinatologist. The only good thing was I got to see her every week. I looked forward to be able to get out of bed and go see her! At about 33 weeks that noticed that she wasnt gaining weight and was falling behind in growth (a GOOD ultrasound can be off +/- 1 lbs on ultrasound at that point, so I hate that docs use this method of gaging a baby's growth)
At 34 1/2 weeks I went to my weekly ultrasound and they did a doppler flow. This measures the flow of blood through the umbilical cord. My daughter's was very high, meaning she likely had high blood pressure herself. She was about 3 weeks behind in growth and my placenta was really calcified. Through all the preterm labor scares, my cervix was only dialated to 1, 1/2, and about 80% effaced, but they decided to induce anyway. I was admitted at 34wks5days. They started high dose pitocin and broke my water as soon as I hit 3 cm....then then contractions stopped (I never did get past 3 cm dialated). 19 1/2 hours later, I'm being wheeled in for a c-section.
Her heart rate did well during that time and she was not in distress.She was born at 35 weeks exactly, March 16, 2001. She had 10 fingers and toes and was tiny! She weighed in at 4.9 lbs, 18 in. She had bright red hair and she was pretty alert. Her apgars were 9/9. Not bad for a preemie with IUGR (Intrauterine Growth Restriction) They allowed my husband to walk her to the nursery...he was so excited! They NEVER let dad's do that!
They sewed me up and my OB told me my placenta was totally calcified and probably wasnt even functioning. He and the perinatologist doubted she would have survived even a few more days. We were all thankful we took her when we did.
She was assessed and she had a pretty big head for such a small baby, but they didnt seem worried. She had SEVERE hypoglycemia and required a sugar IV for 3 days. I had a hard recovery and since she was on an IV in the NICU, I couldnt see her for the first 48 hours. That was hard. The when I tried, I ended up passing out and then had to wait longer. They brought her to me when she was off the IV. The first thing out of my mouth to the nurse was " She looks jaundiced" She assured me she wasnt. Ok, I'm a self proclaimed jaundice spotter in newborns even before levels are peaked....I'm just good at that....8 hours later they tell me she is jaundiced......DUH! Her levels were about 15 and they wanted her under lights since she was a preemie. However, they were releasing me and wouldnt start lights on her until the next day, so I begged them to let me take her home. She was nippling ok and was off the IV support. They agreed. The next morning her levels were 19. She went under the lights. Her levels peaked at 21 (brain damage can occur at about level 25) and she stayed under those lights for 4 days. We bonded like crazy!
She seemed to do great those first few months. Even looking back there is nothing that I can think of that was different about her. She grew according to her scale, she had NASTY colic, but got over that.
The first ear infection was at 6 months, the 2nd was in the opposite ear that 7 months, the 3rd, a bilateral ear infection was at 8 months, see a trend? Her first pneumonia was at 9 months. Her 2nd was at 11 months. She developed Strep Throat at 11 months......do you know how unusual that is? She would spike HIGH HIGH fevers (highest doccumented was at the 4th pneumonia at 106.7 and maxed out on Motrin and Tylenol, that was scary)
It is hard to piece everything together, but within days of getting penicilin shots her legs for the strep, she got Hand, Foot and Mouth Disease, then 2 weeks later she had bilateral tubes put in her ears, within days of that she couldnt walk anymore (she had begun at about 10 1/2, 11 months) she couldnt even crawl straight. She was diagnosed with Cerebellar Ataxia. They did an LP and CT and didnt see what was going on, what the cause was. It was later suspected that she was the 1 in 1,000,000 that the HFMD would go to the brain, causing Encephalitis. Within 1 month, she could barely crawl, she lost all her speech, she didnt even babble. She didnt smile, she looked blank and she was diagnosed with Seizures. Infantile Spasms. This was a very late age to be diagnosed. She began medication at 14 months. Due to the late onset, they used phenobarbitol instead of the preferred ACTH because of the atypical presentation.
She began early intervention at 15 months.
Looking back I am proud of myself that I got her help so fast in the midst of everything.So that was her birth and her trauma's. Fast forward to now, she has had over 35 ear infections, 6 episodes of pneumonia (her x-rays showed a spot on her right lower lobe that looked like there might have been a hole in her lung that eventually healed. Her pulmonoglist is sure this was the cause of her frequent pneumonia's), encephalitis, a metabolic crisis, failure to thrive, several seizure medication changes, a mild hypotonic cerebral palsy diagnosis, a grade 3 murmur, a congnetial heart defect, progressive muscle weakness, chronic fatigue and now has refractory seizures.
The hardest diagnosis she got was at age 5.....mental retardation. She has an IQ of 62...that was the most devestating part of this long road.
We have no idea what happened, where things really went wrong. Some docs believe her brain was just waiting for 1 little insult to shut off, some saw it just took US awhile to see something was wrong. Some docs say it was the encephalitis, some say a metabolic disorder....we dont know what to say.
I will update this more, but I'm exhausted!
Taylor is now 6 yrs old.
To be honest, she got screwed from the start. Sorry, but she did.
My pregnancy was awful and highly complicated. I was fairly young. My husband and I had already suffered a miscarriage. At about 20 weeks gestation (5 months) it was discovered that I had white spots on my placenta. Now a typical pregnancy will develop this as well. Just not until much later. A Placenta is only good for about 40-42 weeks, so to have it start to "go bad" halfway through is not a positive nor typical thing.
The only thing we can think of that led to this was the severe morning sickness I had. Even up to 28 weeks I was throwing up everything I ate.My OB/GYN decided at about that time that I needed to go on bed rest. My placenta was failing fast and the little girl I was carrying was feeling the effects.
I was RH negative and had to have the wonderful rhogam shot.By 30 weeks I was having bouts of preterm labor and being followed weekly through ultrasounds by a perinatologist. The only good thing was I got to see her every week. I looked forward to be able to get out of bed and go see her! At about 33 weeks that noticed that she wasnt gaining weight and was falling behind in growth (a GOOD ultrasound can be off +/- 1 lbs on ultrasound at that point, so I hate that docs use this method of gaging a baby's growth)
At 34 1/2 weeks I went to my weekly ultrasound and they did a doppler flow. This measures the flow of blood through the umbilical cord. My daughter's was very high, meaning she likely had high blood pressure herself. She was about 3 weeks behind in growth and my placenta was really calcified. Through all the preterm labor scares, my cervix was only dialated to 1, 1/2, and about 80% effaced, but they decided to induce anyway. I was admitted at 34wks5days. They started high dose pitocin and broke my water as soon as I hit 3 cm....then then contractions stopped (I never did get past 3 cm dialated). 19 1/2 hours later, I'm being wheeled in for a c-section.
Her heart rate did well during that time and she was not in distress.She was born at 35 weeks exactly, March 16, 2001. She had 10 fingers and toes and was tiny! She weighed in at 4.9 lbs, 18 in. She had bright red hair and she was pretty alert. Her apgars were 9/9. Not bad for a preemie with IUGR (Intrauterine Growth Restriction) They allowed my husband to walk her to the nursery...he was so excited! They NEVER let dad's do that!
They sewed me up and my OB told me my placenta was totally calcified and probably wasnt even functioning. He and the perinatologist doubted she would have survived even a few more days. We were all thankful we took her when we did.
She was assessed and she had a pretty big head for such a small baby, but they didnt seem worried. She had SEVERE hypoglycemia and required a sugar IV for 3 days. I had a hard recovery and since she was on an IV in the NICU, I couldnt see her for the first 48 hours. That was hard. The when I tried, I ended up passing out and then had to wait longer. They brought her to me when she was off the IV. The first thing out of my mouth to the nurse was " She looks jaundiced" She assured me she wasnt. Ok, I'm a self proclaimed jaundice spotter in newborns even before levels are peaked....I'm just good at that....8 hours later they tell me she is jaundiced......DUH! Her levels were about 15 and they wanted her under lights since she was a preemie. However, they were releasing me and wouldnt start lights on her until the next day, so I begged them to let me take her home. She was nippling ok and was off the IV support. They agreed. The next morning her levels were 19. She went under the lights. Her levels peaked at 21 (brain damage can occur at about level 25) and she stayed under those lights for 4 days. We bonded like crazy!
She seemed to do great those first few months. Even looking back there is nothing that I can think of that was different about her. She grew according to her scale, she had NASTY colic, but got over that.
The first ear infection was at 6 months, the 2nd was in the opposite ear that 7 months, the 3rd, a bilateral ear infection was at 8 months, see a trend? Her first pneumonia was at 9 months. Her 2nd was at 11 months. She developed Strep Throat at 11 months......do you know how unusual that is? She would spike HIGH HIGH fevers (highest doccumented was at the 4th pneumonia at 106.7 and maxed out on Motrin and Tylenol, that was scary)
It is hard to piece everything together, but within days of getting penicilin shots her legs for the strep, she got Hand, Foot and Mouth Disease, then 2 weeks later she had bilateral tubes put in her ears, within days of that she couldnt walk anymore (she had begun at about 10 1/2, 11 months) she couldnt even crawl straight. She was diagnosed with Cerebellar Ataxia. They did an LP and CT and didnt see what was going on, what the cause was. It was later suspected that she was the 1 in 1,000,000 that the HFMD would go to the brain, causing Encephalitis. Within 1 month, she could barely crawl, she lost all her speech, she didnt even babble. She didnt smile, she looked blank and she was diagnosed with Seizures. Infantile Spasms. This was a very late age to be diagnosed. She began medication at 14 months. Due to the late onset, they used phenobarbitol instead of the preferred ACTH because of the atypical presentation.
She began early intervention at 15 months.
Looking back I am proud of myself that I got her help so fast in the midst of everything.So that was her birth and her trauma's. Fast forward to now, she has had over 35 ear infections, 6 episodes of pneumonia (her x-rays showed a spot on her right lower lobe that looked like there might have been a hole in her lung that eventually healed. Her pulmonoglist is sure this was the cause of her frequent pneumonia's), encephalitis, a metabolic crisis, failure to thrive, several seizure medication changes, a mild hypotonic cerebral palsy diagnosis, a grade 3 murmur, a congnetial heart defect, progressive muscle weakness, chronic fatigue and now has refractory seizures.
The hardest diagnosis she got was at age 5.....mental retardation. She has an IQ of 62...that was the most devestating part of this long road.
We have no idea what happened, where things really went wrong. Some docs believe her brain was just waiting for 1 little insult to shut off, some saw it just took US awhile to see something was wrong. Some docs say it was the encephalitis, some say a metabolic disorder....we dont know what to say.
I will update this more, but I'm exhausted!
Taylor is now 6 yrs old.
Subscribe to:
Posts (Atom)
