Just a quickie for now . . . last night Kaiden very clearly signed "eat" looking directly at me. Too bad for him, it was almost 10pm so he only got a sippy of water since I was trying to get him to go to sleep. Not only did he down that, he signed "eat" again and took a little more before finally retiring for the night. I am so proud of him for clearly communicating his needs!!
Just a few minutes ago Nick informed me that Kaiden managed to go forward a little bit while up on all fours . . . only time will tell what the rest of the evening will bring!
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Why Kaiden is one special kid
This part is the history behind Kaiden's conception, aka our TTC journey. If you're squeamish, turn away now! Don't worry, it's not pornographic but it is a bit graphic.
I'll start this out with what we went through, and end it with my beliefs because of what happened.
We first started not trying, not preventing in Dec of '04. No pregnancies . . . we thought that the stress from my job (not my job per say, but the people I worked for) was part of the reason I wasn't getting pregnant. Since we planned for me to be a stay-at-home mom anyway, Nick highly encouraged me to quit my job and just stay home. After much consideration (and many frustrating events at work) I finally agreed and left in Feb '06.
A short four months later, we had our first pregnancy. Within a week of finding out, I knew something was wrong. I had excruciating pain in my left side and spotting. I went to the local clinic several times, and each time they sent me away saying I was "just having a miscarriage" and to go home and wait it out. I read about other women's experiences of miscarriage and it didn't fit at all. I felt strongly that I had an ectopic pregnancy with internal bleeding. After 3 weeks of trying to convince the doctors, they finally agreed that it was ectopic, and I was bleeding internally. And they still sent me home, and told me to set up my surgery for the next day with Outpatient Surgery. That was a disaster. Nobody knew what procedures were scheduled, who was doing the surgery, or what was going on. During the surgery, the nurses reported to Nick a bunch of conflicting information. They were taking the ovary, they weren't taking the ovary, or was it the tube?? After the surgery, the doctor came out to Nick and said, (and I quote) "she only needs one" and left. One what? One ovary, one tube, what?? Nobody would answer my questions after the surgery and the doctor claimed he never received my (several) messages. I had to watch my surgery video and compare it to others online to figure out what happened in there. At the post-op appointment, the doctor dropped another bombshell: It was twins. One in the left tube, half of which they removed, and the other was in the uterus, very deteriorated (this is called a heterotopic pregnancy). So deteriorated that it didn't test positive as a "product of conception". He also said that he didn't have to remove my left tube, but did it anyway because I still had my right tube and that one was fine.
After this, we began actively trying to conceive and 5 months after the surgery, I was pregnant again. And one week later, the spotting began and I miscarried and thought it was over. Turns out it wasn't. I was suprised to find out at my follow up doctor appointment (I went to a different clinic this time) that I was still indeed pregnant. The doctor felt it was another ectopic, but refused to do an ultrasound to confirm and encouraged me to terminate. Without confirmation, I refused to terminate the pregnancy. What if they were wrong? Turns out I was wrong and they were right, it was another ectopic and this time I lost the entirety of my right tube. Since I had also miscarried, it meant this was another heterotopic pregnancy. One is rare, but two back to back is extremely rare.
We moved on to IVF (invitro fertilization) and I became pregnant for the 3rd time at the end of 2007 with the transfer of 2 fresh embryos. I gave the local clinic another chance. Given my history, I asked they be extremely thorough and careful in the event of another ectopic or heterotopic pregnancy. Even with IVF, the risk exists. Instead, they assured me that would never happen and only did a quick sweep for the first fetal ultrasound. The nurse practitioner (who "specializes in ultrasounds") saw one sac in the uterus that was behind in development. Looking back, I know I ruptured the very next day. Because they only did a quick look, they never saw the healthy baby with a heartbeat that had implanted into the tiny opening where my right tube would be if I still had one. It ruptured out of my uterus and I lost half my blood volume into my abdomen. I didn't know it at the time. The symptoms I had I associated with being pregnant and having been on IVF meds - fatigue, bloating, constipation. It wasn't until 3 days later when I noticed a sharp pain in my shoulder when I bent over and took a breath at the same time. I happened to mention it to my RE's (reproductive endocrinologist, IVF doctor) nurse as we talked about blood test results. They told me to go straight to the ER, as it sounded like a blood clot, which can be a side effect of the IVF meds.
We went to the ER, and it took them 7 hours to find the problem. They did a cat scan and an abdominal ultrasound. During the ultrasound, the tech was able to find the baby's heartbeat (mind you, we didn't know about baby #2 - I thought it was the sac in the uterus the nurse practitioner saw at my first fetal ultrasound) and I was elated. I did notice that the placement didn't look right, but the ultrasound tech wasn't concerned so I blew it off. Later that night the on-call OB performed another ultrasound and confirmed our worst fears. The healthy baby was not in my uterus. I was rushed into surgery, where they took the healthy baby and stitched me back up, leaving the sac that was behind in development within the uterus. It didn't have a good prognosis.
After this mess of gross incompentence for which we filed complaints, I chose to be monitored by a clinic that specialized in high risk pregnancies. If the baby in utero was going to develop, I was very high risk having just had a ruptured uterus. The baby did not develop; it became what is known as a blighted ovum, an empty sac. Because of the rupture, I could not have a D&C and I refused meds to terminate as my RE said those meds could interfere with our chances of conceiving in the future with IVF. So I waited it out . . . 8 long weeks . . . finally at 15 weeks gestation, I miscarried the empty sac. This was now our 3rd consecutive heterotopic pregnancy. So rare it is totally unheard of . . . try to find somebody else who has been through that!
The RE felt my body was healed enough to do a FET (frozen embryo transfer, we had 3 frozen embryos left) and we proceeded in June of '08. (Sadly, we lost our beloved female rottie Iria to osteosarcoma a week and a half before the transfer. Honey, our rescued female rottie then entered our lives although she later succumbed to blastomycosis from her days as a stray.) The RE's office had a bit of miscommunication - we only wanted 1 embryo thawed and transferred, and they thawed two. As it turns out, it didn't matter. The first one totally disintegrated upon thawing and the second lost 3 of its 7 cells. So they thawed the last embryo, which came through perfectly. They transferred what I like to call 1 1/2 embryos, and I became pregnant with Kaiden. We don't know which embryo he resulted from but it could have been either. All we knew was that I was finally pregnant the right way, in the right place, and I was being monitored at a clinic that specialized in high risk pregnancies.
The pregnancy itself was fairly uneventful at first, with some dehydration induced spotting that lasted for 3 weeks. As all women are, they offered the option of having an amnio done at 12 weeks to test for various things. We declined. Kaiden was our last embryo and we were out of money to go another round of IVF and I wasn't about to do anything that could possibly cause a miscarriage. An amnio carries that risk. At the 19 week ultrasound it was determined without a doubt that we were having a boy - Kaiden was not shy and put the goods on display for all to see!! The doctors also noticed Kaiden had a shortened nasal bone and told us we now had a 10% chance Kaiden could have Down Syndrome and sent me to Maternal Fetal Medicine for another look and the offer of an amnio, which I refused. They said, as all doctors seem to these days, that if it came back as positive, we could terminate. I told them, after all we've been through, who cares if Kaiden has Down Syndrome! We WANT this child, no matter what, period!
The pregnancy progressed. I must be the luckiest woman alive, during all 4 pregnancies - especially Kaiden's pregnancy, I never got sick. I felt great and had tons of energy - so much I had trouble sleeping. My only discomfort stemmed from carrying him so high that he kicked me under my ribcage. And he was so high that heartburn was constant. Then I began hemorrhaging at 7 months. Although mostly painless, the amount of gushing blood was frightening. The first time was maybe 1/2 cup (it was at this time we lost our wonderful rescued female rottie Honey as she succumbed to blasto. I was not allowed to grieve for her because every time I got upset, the contractions would start. Soon after, our current female rottie Lola entered our lives). The second time was probably a full cup. The third time, I don't even know how much it was but I knew it was very bad. Nick later said the upstairs looked like a murder scene from me running from the bedroom to the bathroom where I continued to gush blood into the toilet. At that point, I knew I wasn't coming home from the hospital until Kaiden was born, which was supposed to be another 3 weeks away. (Because of the previous rupture, I was to have a scheduled c-section at 36 weeks so I wouldn't go into labor and rupture again.)
The placenta had other plans. All the bleeding irritated my uterus so bad I went into premature labor and no meds would stop it. Finally, the doctors decided to see how I did without meds since they weren't doing any good. They said if I had more than 6 contractions in an hour, Kaiden would be born early. Shortly after stopping the meds, I began having 6 contractions per minute and was freaking out over the possibility of another rupture. Within a couple hours, Kaiden was born via emergency c-section. I only got a glimpse of him as they rushed him to the NICU. I have to say, the c-section was an interesting experience - I got to ask the doctor all sorts of questions about my insides while she literally had her hands in there and could answer me.
Kaiden spent 6 weeks in the NICU to finish growing. Overall, he did very well and exceeded his doctors' expectations at every turn. He got to come home on March 10th, 4 days before his original full-term due date.
My spiritual beliefs differ from the norm. I was raised Catholic, and no longer consider myself so. I believe we schedule certain events/people into our lives before we incarnate, specifically to learn from them. Not predestination by any means . . . I believe it is up to us what we learn from the experience - and if we don't learn what we wanted to learn we may repeat that experience whether in this life or the next. So what does this mean in regards to Kaiden? Looking back over it all . . . if we had conceived early on rather than waiting so long to even think about it . . . we probably would have agreed to an amnio and if the baby had tested positive for Down Syndrome . . . we may have chosen to terminate. Not saying we would have, but doctors so highly encourage parents to do so. What if every successive pregnancy had turned out the same way, a baby with Down Syndrome? I think we went through what we went through to ensure we would want our baby no matter what. And I suppose it helped that we didn't have the financial option of trying again if the FET failed. Kaiden chose us as parents, and we chose him to be our son long before we set foot on earth. That's what I believe.
Even Lola chose Kaiden before he was born. We went to the breeder to see a 4 month old pup as we knew Carl, our (sadly, very recently deceased) senior male rottie, needed a companion. This pup completely ignored us. The breeder then brought out a 3 month old pup, who immediately barreled toward me and gently put her gigantic paws on my pregnant belly. Then she went to Nick, then to the other pups to play. She repeatedly came back to me and and placed her paws on my belly. We took her home. I even have a picture of her snoozing cuddled up, with her head resting on my belly.
Kaiden is one incredibly special, very much loved little boy! I couldn't ask for a more perfect child. Even with his latest accomplishement of exorcist-style temper tantrums! :)
I'll start this out with what we went through, and end it with my beliefs because of what happened.
We first started not trying, not preventing in Dec of '04. No pregnancies . . . we thought that the stress from my job (not my job per say, but the people I worked for) was part of the reason I wasn't getting pregnant. Since we planned for me to be a stay-at-home mom anyway, Nick highly encouraged me to quit my job and just stay home. After much consideration (and many frustrating events at work) I finally agreed and left in Feb '06.
A short four months later, we had our first pregnancy. Within a week of finding out, I knew something was wrong. I had excruciating pain in my left side and spotting. I went to the local clinic several times, and each time they sent me away saying I was "just having a miscarriage" and to go home and wait it out. I read about other women's experiences of miscarriage and it didn't fit at all. I felt strongly that I had an ectopic pregnancy with internal bleeding. After 3 weeks of trying to convince the doctors, they finally agreed that it was ectopic, and I was bleeding internally. And they still sent me home, and told me to set up my surgery for the next day with Outpatient Surgery. That was a disaster. Nobody knew what procedures were scheduled, who was doing the surgery, or what was going on. During the surgery, the nurses reported to Nick a bunch of conflicting information. They were taking the ovary, they weren't taking the ovary, or was it the tube?? After the surgery, the doctor came out to Nick and said, (and I quote) "she only needs one" and left. One what? One ovary, one tube, what?? Nobody would answer my questions after the surgery and the doctor claimed he never received my (several) messages. I had to watch my surgery video and compare it to others online to figure out what happened in there. At the post-op appointment, the doctor dropped another bombshell: It was twins. One in the left tube, half of which they removed, and the other was in the uterus, very deteriorated (this is called a heterotopic pregnancy). So deteriorated that it didn't test positive as a "product of conception". He also said that he didn't have to remove my left tube, but did it anyway because I still had my right tube and that one was fine.
After this, we began actively trying to conceive and 5 months after the surgery, I was pregnant again. And one week later, the spotting began and I miscarried and thought it was over. Turns out it wasn't. I was suprised to find out at my follow up doctor appointment (I went to a different clinic this time) that I was still indeed pregnant. The doctor felt it was another ectopic, but refused to do an ultrasound to confirm and encouraged me to terminate. Without confirmation, I refused to terminate the pregnancy. What if they were wrong? Turns out I was wrong and they were right, it was another ectopic and this time I lost the entirety of my right tube. Since I had also miscarried, it meant this was another heterotopic pregnancy. One is rare, but two back to back is extremely rare.
We moved on to IVF (invitro fertilization) and I became pregnant for the 3rd time at the end of 2007 with the transfer of 2 fresh embryos. I gave the local clinic another chance. Given my history, I asked they be extremely thorough and careful in the event of another ectopic or heterotopic pregnancy. Even with IVF, the risk exists. Instead, they assured me that would never happen and only did a quick sweep for the first fetal ultrasound. The nurse practitioner (who "specializes in ultrasounds") saw one sac in the uterus that was behind in development. Looking back, I know I ruptured the very next day. Because they only did a quick look, they never saw the healthy baby with a heartbeat that had implanted into the tiny opening where my right tube would be if I still had one. It ruptured out of my uterus and I lost half my blood volume into my abdomen. I didn't know it at the time. The symptoms I had I associated with being pregnant and having been on IVF meds - fatigue, bloating, constipation. It wasn't until 3 days later when I noticed a sharp pain in my shoulder when I bent over and took a breath at the same time. I happened to mention it to my RE's (reproductive endocrinologist, IVF doctor) nurse as we talked about blood test results. They told me to go straight to the ER, as it sounded like a blood clot, which can be a side effect of the IVF meds.
We went to the ER, and it took them 7 hours to find the problem. They did a cat scan and an abdominal ultrasound. During the ultrasound, the tech was able to find the baby's heartbeat (mind you, we didn't know about baby #2 - I thought it was the sac in the uterus the nurse practitioner saw at my first fetal ultrasound) and I was elated. I did notice that the placement didn't look right, but the ultrasound tech wasn't concerned so I blew it off. Later that night the on-call OB performed another ultrasound and confirmed our worst fears. The healthy baby was not in my uterus. I was rushed into surgery, where they took the healthy baby and stitched me back up, leaving the sac that was behind in development within the uterus. It didn't have a good prognosis.
After this mess of gross incompentence for which we filed complaints, I chose to be monitored by a clinic that specialized in high risk pregnancies. If the baby in utero was going to develop, I was very high risk having just had a ruptured uterus. The baby did not develop; it became what is known as a blighted ovum, an empty sac. Because of the rupture, I could not have a D&C and I refused meds to terminate as my RE said those meds could interfere with our chances of conceiving in the future with IVF. So I waited it out . . . 8 long weeks . . . finally at 15 weeks gestation, I miscarried the empty sac. This was now our 3rd consecutive heterotopic pregnancy. So rare it is totally unheard of . . . try to find somebody else who has been through that!
The RE felt my body was healed enough to do a FET (frozen embryo transfer, we had 3 frozen embryos left) and we proceeded in June of '08. (Sadly, we lost our beloved female rottie Iria to osteosarcoma a week and a half before the transfer. Honey, our rescued female rottie then entered our lives although she later succumbed to blastomycosis from her days as a stray.) The RE's office had a bit of miscommunication - we only wanted 1 embryo thawed and transferred, and they thawed two. As it turns out, it didn't matter. The first one totally disintegrated upon thawing and the second lost 3 of its 7 cells. So they thawed the last embryo, which came through perfectly. They transferred what I like to call 1 1/2 embryos, and I became pregnant with Kaiden. We don't know which embryo he resulted from but it could have been either. All we knew was that I was finally pregnant the right way, in the right place, and I was being monitored at a clinic that specialized in high risk pregnancies.
The pregnancy itself was fairly uneventful at first, with some dehydration induced spotting that lasted for 3 weeks. As all women are, they offered the option of having an amnio done at 12 weeks to test for various things. We declined. Kaiden was our last embryo and we were out of money to go another round of IVF and I wasn't about to do anything that could possibly cause a miscarriage. An amnio carries that risk. At the 19 week ultrasound it was determined without a doubt that we were having a boy - Kaiden was not shy and put the goods on display for all to see!! The doctors also noticed Kaiden had a shortened nasal bone and told us we now had a 10% chance Kaiden could have Down Syndrome and sent me to Maternal Fetal Medicine for another look and the offer of an amnio, which I refused. They said, as all doctors seem to these days, that if it came back as positive, we could terminate. I told them, after all we've been through, who cares if Kaiden has Down Syndrome! We WANT this child, no matter what, period!
The pregnancy progressed. I must be the luckiest woman alive, during all 4 pregnancies - especially Kaiden's pregnancy, I never got sick. I felt great and had tons of energy - so much I had trouble sleeping. My only discomfort stemmed from carrying him so high that he kicked me under my ribcage. And he was so high that heartburn was constant. Then I began hemorrhaging at 7 months. Although mostly painless, the amount of gushing blood was frightening. The first time was maybe 1/2 cup (it was at this time we lost our wonderful rescued female rottie Honey as she succumbed to blasto. I was not allowed to grieve for her because every time I got upset, the contractions would start. Soon after, our current female rottie Lola entered our lives). The second time was probably a full cup. The third time, I don't even know how much it was but I knew it was very bad. Nick later said the upstairs looked like a murder scene from me running from the bedroom to the bathroom where I continued to gush blood into the toilet. At that point, I knew I wasn't coming home from the hospital until Kaiden was born, which was supposed to be another 3 weeks away. (Because of the previous rupture, I was to have a scheduled c-section at 36 weeks so I wouldn't go into labor and rupture again.)
The placenta had other plans. All the bleeding irritated my uterus so bad I went into premature labor and no meds would stop it. Finally, the doctors decided to see how I did without meds since they weren't doing any good. They said if I had more than 6 contractions in an hour, Kaiden would be born early. Shortly after stopping the meds, I began having 6 contractions per minute and was freaking out over the possibility of another rupture. Within a couple hours, Kaiden was born via emergency c-section. I only got a glimpse of him as they rushed him to the NICU. I have to say, the c-section was an interesting experience - I got to ask the doctor all sorts of questions about my insides while she literally had her hands in there and could answer me.
Kaiden spent 6 weeks in the NICU to finish growing. Overall, he did very well and exceeded his doctors' expectations at every turn. He got to come home on March 10th, 4 days before his original full-term due date.
My spiritual beliefs differ from the norm. I was raised Catholic, and no longer consider myself so. I believe we schedule certain events/people into our lives before we incarnate, specifically to learn from them. Not predestination by any means . . . I believe it is up to us what we learn from the experience - and if we don't learn what we wanted to learn we may repeat that experience whether in this life or the next. So what does this mean in regards to Kaiden? Looking back over it all . . . if we had conceived early on rather than waiting so long to even think about it . . . we probably would have agreed to an amnio and if the baby had tested positive for Down Syndrome . . . we may have chosen to terminate. Not saying we would have, but doctors so highly encourage parents to do so. What if every successive pregnancy had turned out the same way, a baby with Down Syndrome? I think we went through what we went through to ensure we would want our baby no matter what. And I suppose it helped that we didn't have the financial option of trying again if the FET failed. Kaiden chose us as parents, and we chose him to be our son long before we set foot on earth. That's what I believe.
Even Lola chose Kaiden before he was born. We went to the breeder to see a 4 month old pup as we knew Carl, our (sadly, very recently deceased) senior male rottie, needed a companion. This pup completely ignored us. The breeder then brought out a 3 month old pup, who immediately barreled toward me and gently put her gigantic paws on my pregnant belly. Then she went to Nick, then to the other pups to play. She repeatedly came back to me and and placed her paws on my belly. We took her home. I even have a picture of her snoozing cuddled up, with her head resting on my belly.
Kaiden is one incredibly special, very much loved little boy! I couldn't ask for a more perfect child. Even with his latest accomplishement of exorcist-style temper tantrums! :)
Kaiden's accomplishments
It has now been almost 4 weeks since Kaiden had his last seizure. And holy cow, has his development run with the wind! In this short amount of time, Kaiden has gained 4 - 6 months of development and now functions at about a 12 month level. If you take his prematurity into account, he's now only 3.5 months behind, if not, he's about 5 months behind.
Below is his accomplishments list, to date being seizure free. Prior to this, he had been functioning at about the same level as when the seizures started, right around the 6 - 7 month age range. He never regressed, but he didn't make much progress either. At 11 months, he said his first word (Mama) 3 times, and even now still has yet to repeat it. His other accomplishment, around 11 - 12 months was beginning stay in an upright sitting position unassisted, as well as banging his little hands on toys within his reach. The toy play began to progress after we started the calcium supplement around 12 months.
5/29/10 seizure free
5/31/10 noted that Kaiden is now smiling & giggling again without direct interaction, haven't seen that in months
Kaiden is standing and able to hold onto something all by himself for support for a few seconds rather than immediately falling over
Responds to tickling instead of no response whatsoever to tickling
6/1/10 able to get picture of Kaiden standing holding onto edge of pack & play by himself
6/3/10 therapists say Kaiden is signing “eat”, tried to teach him signs last year to no avail, had just started up again 1 – 2 weeks ago
6/8/10 Kaiden trying to crawl, lifting his belly off the floor, arms shaking with effort . . . trying to bring knees under him
6/9/10 consistently bouncing to music, responding to sound (hearing test showed hearing in perfect order, just not realizing sounds have meaning, concern about auditory nerve function)
Laughing at toys
6/10/10 signed “more”
really enjoying his books and toys that make noise
rolling to and reaching out for toys
6/11/10 pulling toys toward himself to play with
6/12/10 very chattery while looking around, like he has his own language
Immediately looking for eye contact upon us entering a room and verbally greeting
6/13/10 Showing preference for toys by throwing the one he doesn’t want
6/15/10 has been very consistent in the last 2 weeks in waiting for me to take off his diaper to poop, thinking it wouldn’t hurt to start some toilet training
6/16/10 pulled himself into a full 4-point position
Playing with the water from the sprayer during bath
6/18/10 deliberately picked up loaded spoon, managed to get it in his mouth, and then banged the now-empty spoon around for awhile. Happened at lunch and again at dinner, repeated results 6/19/10 – 6/20/10, even going for (and drinking from) my glass.
6/23/10 rocking motion while in 4 point position
Signed "drink"
6/25/10 temper tantrums, exorcist-style with screaming/flailing. And since Kaiden is extra flexible with Down Syndrome, his little head really can just about revolve!
Kaiden has come so far that many people have commented exactly what we have been wondering - is it possible . . . is it even remotely possible that nightshade foods have something to do with the developmental delays with Down Syndrome? It could make sense, with them not being able to process foods as well. Not saying that this is a cure, by any means!! But, if it helps Kaiden . . . we could have stumbled onto something HUGE. Or we could be an isolated case.
With that, I've been trying to get the word out. If there is even the remotest chance that this will help somebody else, I have to try. This blog, my JM friends, Facebook, and now to try the real world. I did send a very detailed letter to Kaiden's neurologist stating my findings. It's been 3 weeks and no response. His pediatrician called the day she read the letter to say how thrilled she was!
I tried the closest local news station, emailed them Friday night . . . no response yet but we also had a slew of nasty weather. They may have lost power and who knows, either the email got eaten or maybe they are just not interested. I emailed another news station today, ironically it's the same news guy that tried to help us out when Lola got lost - he switched jobs and is now at this station. I hope to hear back from him, he was really nice. If not, though, I will keep trying until I find some way to get it out there.
Kaiden's physical therapist said we need to get on Oprah, better yet, Rachel Ray so I can show them the tasty recipes I've come up with that work with Kaiden's dietary needs. Of course, she just wants to go with! Hahahaha . . . we love her to death so that would be fine with me!
Below is his accomplishments list, to date being seizure free. Prior to this, he had been functioning at about the same level as when the seizures started, right around the 6 - 7 month age range. He never regressed, but he didn't make much progress either. At 11 months, he said his first word (Mama) 3 times, and even now still has yet to repeat it. His other accomplishment, around 11 - 12 months was beginning stay in an upright sitting position unassisted, as well as banging his little hands on toys within his reach. The toy play began to progress after we started the calcium supplement around 12 months.
5/29/10 seizure free
5/31/10 noted that Kaiden is now smiling & giggling again without direct interaction, haven't seen that in months
Kaiden is standing and able to hold onto something all by himself for support for a few seconds rather than immediately falling over
Responds to tickling instead of no response whatsoever to tickling
6/1/10 able to get picture of Kaiden standing holding onto edge of pack & play by himself
6/3/10 therapists say Kaiden is signing “eat”, tried to teach him signs last year to no avail, had just started up again 1 – 2 weeks ago
6/8/10 Kaiden trying to crawl, lifting his belly off the floor, arms shaking with effort . . . trying to bring knees under him
6/9/10 consistently bouncing to music, responding to sound (hearing test showed hearing in perfect order, just not realizing sounds have meaning, concern about auditory nerve function)
Laughing at toys
6/10/10 signed “more”
really enjoying his books and toys that make noise
rolling to and reaching out for toys
6/11/10 pulling toys toward himself to play with
6/12/10 very chattery while looking around, like he has his own language
Immediately looking for eye contact upon us entering a room and verbally greeting
6/13/10 Showing preference for toys by throwing the one he doesn’t want
6/15/10 has been very consistent in the last 2 weeks in waiting for me to take off his diaper to poop, thinking it wouldn’t hurt to start some toilet training
6/16/10 pulled himself into a full 4-point position
Playing with the water from the sprayer during bath
6/18/10 deliberately picked up loaded spoon, managed to get it in his mouth, and then banged the now-empty spoon around for awhile. Happened at lunch and again at dinner, repeated results 6/19/10 – 6/20/10, even going for (and drinking from) my glass.
6/23/10 rocking motion while in 4 point position
Signed "drink"
6/25/10 temper tantrums, exorcist-style with screaming/flailing. And since Kaiden is extra flexible with Down Syndrome, his little head really can just about revolve!
Kaiden has come so far that many people have commented exactly what we have been wondering - is it possible . . . is it even remotely possible that nightshade foods have something to do with the developmental delays with Down Syndrome? It could make sense, with them not being able to process foods as well. Not saying that this is a cure, by any means!! But, if it helps Kaiden . . . we could have stumbled onto something HUGE. Or we could be an isolated case.
With that, I've been trying to get the word out. If there is even the remotest chance that this will help somebody else, I have to try. This blog, my JM friends, Facebook, and now to try the real world. I did send a very detailed letter to Kaiden's neurologist stating my findings. It's been 3 weeks and no response. His pediatrician called the day she read the letter to say how thrilled she was!
I tried the closest local news station, emailed them Friday night . . . no response yet but we also had a slew of nasty weather. They may have lost power and who knows, either the email got eaten or maybe they are just not interested. I emailed another news station today, ironically it's the same news guy that tried to help us out when Lola got lost - he switched jobs and is now at this station. I hope to hear back from him, he was really nice. If not, though, I will keep trying until I find some way to get it out there.
Kaiden's physical therapist said we need to get on Oprah, better yet, Rachel Ray so I can show them the tasty recipes I've come up with that work with Kaiden's dietary needs. Of course, she just wants to go with! Hahahaha . . . we love her to death so that would be fine with me!
Monday, June 7, 2010
Kaiden's diet
As individuals with Down Syndrome are more likely to be lactose and gluten intolerant, I made the decision to go not only dairy free, but completely legume and grain free. I'm not crazy. This is how our ancestors ate. This is also the ancient Taoist diet - and I mean ancient, before the 5 sacred grains. Think, if you were a caveman or part of a nomadic tribe . . . you picked it fresh and ate it as you went. Basically what's called the "paleo diet" or the "raw" diet . . . except I cook our meats . . . I say cavemen had fire and knew how to use it! I do cook some veggies as well, and I do know that anything heated higher than 118F, the heat begins to destroy essential enzymes and nutrients.
Dairy free? But didn't you know you can get soy milk, almond milk, or rice milk you say? What is this obsession people have with drinking milk? Milk comes from animals . . . not plants - that's not milk and never will be. It just looks like milk to make those who are lactose intolerant feel more normal, like they are drinking milk like anybody else. Who first looked at a cow and decided that should be our primary source of calcium instead of fresh foods anyway? And why are people today so squeamish about breastmilk? It's human milk, meant for human children to consume. It's best suited to their needs. Cow's milk is best suited to calves. Soy and rice are grains, so they aren't even an option in my book. Yes, I do realize there are situations where breastmilk is not an option . . . you do what you gotta do.
Grain free you say? Why? Well, because grains inhibit absorbtion of certain nutrients, calcium being one of them. Calcium is essential to the nervous system and as Kaiden was already having trouble with that, why make it harder for him? Grains are not an essential part of our diet. They're just convenient these days. We also stay away from as much processed foods as possible.
A little vent here . . . I don't think the government wants us to be healthy . . . think about the FDA and what they have approved as food - all sorts of non-food artificial colors, preservatives, flavorings, etc. And, if we all stopped eating processed foods, dairy, and grains, think of all those people who would be out of jobs. Farmers . . . unless they switched to growing something else. People who work in the factories that make our processed "foods". People who work in the factories that make the packaging. People would be healthier, so there would be much less need for doctors, nurses, clinics, hospitals, etc. But I digress . . .
Back to Kaiden's diet. If we take away dairy, legumes, grains, and now nightshade foods, what the heck is left to feed him, you say? Plenty! Kaiden eats:
Beef
Chicken
Turkey
Pork
Fish
Walnuts
Pecans
Sunflower seeds
Sesame seeds
Almonds
Pine nuts
Coconut
Acorn squash
Butternut squash
Spaghetti squash
Summer squash
Zucchini
Cauliflower
Rutabaga
Turnip
Asparagus
Kohlrabi
Cucumbers
Radishes
Cabbage
Celery
Mushrooms
All lettuces/leafy greens including Spinach
Fresh/dried herbs
Onion
Garlic
Apples
Apricots
Bananas
Pears
Cranberries (sweetened)
Cherries
Blackberries
Raspberries
Blueberries
Mangoes (frozen, got a rash from fresh)
Strawberries
Pineapple
Avocados
Grapes
Hemp – yes, you can eat it! You can get it dried/powdered like you buy your spices & herbs.
Maple syrup
I use olive oil to cook with.
Kaiden drinks my breastmilk as well as water. Juices are fine but he doesn’t get them that often, once/twice per week usually or less:
Apple
Orange
Blueberry
Grape (purple, healthier for you than white)
Prune
Did you know you can actually get fresh squeezed, not-from-concentrate juices at Walmart? Priced decently too.
Technically, maple syrup, olive oil, and juices are processed foods. But any processed foods I buy I make sure are 100% natural - just real food, no other crap.
There's plenty more fresh foods out there than the short list above. It's true, once you switch to whole foods, you lose your taste for processed foods. I actually feel ill now after eating processed foods with crap ingredients. Oreos are my nemesis . . . and yes, I do realize some of that passes thru my breastmilk to Kaiden. That's why they are very rare treats.
Dairy free? But didn't you know you can get soy milk, almond milk, or rice milk you say? What is this obsession people have with drinking milk? Milk comes from animals . . . not plants - that's not milk and never will be. It just looks like milk to make those who are lactose intolerant feel more normal, like they are drinking milk like anybody else. Who first looked at a cow and decided that should be our primary source of calcium instead of fresh foods anyway? And why are people today so squeamish about breastmilk? It's human milk, meant for human children to consume. It's best suited to their needs. Cow's milk is best suited to calves. Soy and rice are grains, so they aren't even an option in my book. Yes, I do realize there are situations where breastmilk is not an option . . . you do what you gotta do.
Grain free you say? Why? Well, because grains inhibit absorbtion of certain nutrients, calcium being one of them. Calcium is essential to the nervous system and as Kaiden was already having trouble with that, why make it harder for him? Grains are not an essential part of our diet. They're just convenient these days. We also stay away from as much processed foods as possible.
A little vent here . . . I don't think the government wants us to be healthy . . . think about the FDA and what they have approved as food - all sorts of non-food artificial colors, preservatives, flavorings, etc. And, if we all stopped eating processed foods, dairy, and grains, think of all those people who would be out of jobs. Farmers . . . unless they switched to growing something else. People who work in the factories that make our processed "foods". People who work in the factories that make the packaging. People would be healthier, so there would be much less need for doctors, nurses, clinics, hospitals, etc. But I digress . . .
Back to Kaiden's diet. If we take away dairy, legumes, grains, and now nightshade foods, what the heck is left to feed him, you say? Plenty! Kaiden eats:
Beef
Chicken
Turkey
Pork
Fish
Walnuts
Pecans
Sunflower seeds
Sesame seeds
Almonds
Pine nuts
Coconut
Acorn squash
Butternut squash
Spaghetti squash
Summer squash
Zucchini
Cauliflower
Rutabaga
Turnip
Asparagus
Kohlrabi
Cucumbers
Radishes
Cabbage
Celery
Mushrooms
All lettuces/leafy greens including Spinach
Fresh/dried herbs
Onion
Garlic
Apples
Apricots
Bananas
Pears
Cranberries (sweetened)
Cherries
Blackberries
Raspberries
Blueberries
Mangoes (frozen, got a rash from fresh)
Strawberries
Pineapple
Avocados
Grapes
Hemp – yes, you can eat it! You can get it dried/powdered like you buy your spices & herbs.
Maple syrup
I use olive oil to cook with.
Kaiden drinks my breastmilk as well as water. Juices are fine but he doesn’t get them that often, once/twice per week usually or less:
Apple
Orange
Blueberry
Grape (purple, healthier for you than white)
Prune
Did you know you can actually get fresh squeezed, not-from-concentrate juices at Walmart? Priced decently too.
Technically, maple syrup, olive oil, and juices are processed foods. But any processed foods I buy I make sure are 100% natural - just real food, no other crap.
There's plenty more fresh foods out there than the short list above. It's true, once you switch to whole foods, you lose your taste for processed foods. I actually feel ill now after eating processed foods with crap ingredients. Oreos are my nemesis . . . and yes, I do realize some of that passes thru my breastmilk to Kaiden. That's why they are very rare treats.
Sunday, June 6, 2010
Introduction
I wanted to start this blog to find a public place to talk about my son's conditions in hopes of reaching others suffering from the same thing. Kaiden has Down Syndrome, and was diagnosed with benign myoclonic seizures on September 22, 2009. The seizures had been going on for about a month and I had already noted that sweet potatoes and carrots seemed to intensify his seizure activity. The neurologist we saw blew it off and told me diet had nothing to do with it. In his official report to Kaiden's pediatrician, he wrote "I doubt an underlying metabolic abnormality".
What frustrates me the most is western medicine's take on Down Syndrome . . . anything that comes up, they say, "well, he has Down Syndrome so of course he's going to have issues. Deal with it." Now, there is plenty of evidence out there that the extra chromosome causes metabolic issues, they don't process nutrients correctly/as efficiently as the non-Down Syndrome population. Yet there is little information out there about what to do about it . . . it's more so presented as "yes, we know about it, but there's nothing you can do so we aren't going to try. Get over it." . There is, however, Targeted Nutrition Intervention, which targets the mental development. There are a few companies that sell nutritional supplements designed for Down Syndrome based on the research of Dr. Henry Turkel & Dr. Jack Warner, but at a pretty high price. Some parents swear by it, some don't. More on that later.
Something else interesting I found . . . Down's individuals seem to have some of the same dietary needs as autistic individuals - lactose intolerant, gluten intolerant, etc. Again, there is little information on what to do about this in regards to Down Syndrome . . . yet there is tons of info out there for the autistic community.
Let me get back to the beginning . . . Kaiden was born via c-section at 33 weeks and 3 days due to an overly large placenta that seemed intent upon evicting him and spent 6 weeks in the NICU to finish growing. Due to some issues with the NICU nurses, I ended up exclusively pumping for Kaiden rather than breastfeeding. Never, EVER, let the NICU nurses give your infant a fast flow nipple if you intend to breastfeed. Good luck getting them back to the breast after that! I am still angry they did it without my permission. Had I known, I would never have let them. Anyway . . .at Kaiden's 6 month well visit, he was found to be severely anemic (due to his prematurity and him not yet being on solid foods, getting exclusively breastmilk). His hemoglobin had dropped to 5. Scary thing, I hadn't noticed. Sure, he was a little pale, but he has my skin tone and blonde hair. I had a tan and had kept him out of the sun. The pediatrician did note that his iron level did not seem to bother him, he was happy and active and was hitting milestones.
Unfortunately, at that appointment, I let them vaccinate him with the Hep B and D-TAP vaccines . . . the CDC states that any ill child should not be vaccinated at that time . . . the Hep B vax contains yeast. The D-TAP hasn't been definitively proven but there seems to be a correlation between infants getting the D-TAP vax and developing seizures. Kaiden was also prescribed an iron supplement and I was instructed to start him on solids whether or not he was ready. Most iron supplements for children are filled with sugar. Gee, guess what yeast feeds on . . . then a couple weeks later I went on antibiotics that were supposed to be safe for breastfeeding . . . and BAM all of a sudden, Kaiden had a massive yeast overload. The antibiotics I took were the last straw for his little system, wiped the good bacteria in his gut right out. Stinky, sticky, yeasty diapers, cradle cap, and projectile vomiting. Because he didn't have thrush, his pediatrician blew me off 3 times about it, said there was no way Kaiden could have a yeast infection. Poor kid, you could tell he felt just awful . . . and then within a few days the (benign myoclonic) seizures started.
I tried everything under the sun to find the cause of the seizures . . . I looked at the vaccines he'd been given, the dosage of the iron supplement, the antibiotics I had taken . . . all of which had seizures as a possible side effect. However, the details do not go into the type of seizure. I had noted that carrots and sweet potatoes intensified his seizure activity and stopped feeding him those foods. I had found some evidence that some (not most) individuals with Down Syndrome do not process beta carotene well, and came across an individual with epilepsy that said carrots did it for them.
(As an aside, I stopped the iron supplements and began giving Kaiden a tiny dosage of powdered kelp instead for his iron. Worked wonders, his hemoglobin is and remains excellent. It's super cheap and full of all sorts of good nutrition . . . DON'T waste your money with iron supplements when you can use FOOD to do it! You just have to be careful to give TINY doses if you're going to use if for an extended period of time.)
The seizures continued. The neurologist started Kaiden on vitamin B6, but said he would most likely need topiramate to control the seizures with repeat EEG's and a future MRI. We were told that benign myoclonic seizures would not affect Kaiden cognitvely, but as there was a concern it was actually West Syndrome, we were to watch carefully in the event of cognitive regression. Because of the side effects of western medicine, we chose not to go that route.
The vitamin B6 did absolutely nothing for Kaiden's seizures. At their worst, he was having 6 clusters per day with one spasm every 10 - 15 seconds for anywhere from 10 - 45 minutes. The longer the clusters lasted, the more time between spasms until they finally stopped. He would scream and cry after each spasm. These clusters would happen at random times of the day and night. As a parent, you feel so frustrated and want to cry right along with them . . . you feel powerless to stop it, yet you can't cushion them forever. The seizures would throw Kaiden forward violently, and he would smack his forehead on his toys, hard enough to bruise. I kept my homemade salve on hand, which kept away the bruising. The best way to describe these is like taking a bow, very hard and fast, and without your permission.
Because I am a huge fan of natural remedies, and not a fan of western medicine, we started giving Kaiden Native Remedies' Epi-Still and Triple Complex Nerve Tonic. The nerve tonic made him happier, no doubt about that. Epi-Still significantly reduced, but not eliminated his seizures. It reduced them down to an average of 4 - 10 single spasms per day over the course of 3 months and he didn't cry nearly as much when having a seizure.
The more research I did into seizures and the nervous system, I decided to try giving Kaiden calcium supplements to help support the nervous system along with the Native Remedies supplements. The calcium supplement also contained vitamin D3, magnesium, and vitamin K. This was about a week before his first birthday. Overnight, I noticed Kaiden was more alert and active and loud! This is where I began looking into Targeted Nutrition Intervention. I hadn't gotten into it previously as the reports I read said the Down's children would begin reaching milestones reported by happy parents . . . but that they also typically reached them at the same time as those not taking the supplements. The idea behind it is that Down's individuals do not process nutrients correctly/as efficiently as the non-Down's population does and that they need extra nutrients to compensate. It's not about mega doses, but finding the right dosage for the individual. Since I saw results overnight with just a calcium supplement, I wanted to try it all.
Because Kaiden was sensitive to certain foods, I researched as much as I possibly could and began slowly adding supplements to his routine rather than just buying a pre-made blend. My goal was to get him to the point we could go with a premade blend but I had to try all those ingredients separately. And I'm glad I did, found somethings he didn't tolerate well. I will note, that the over-the-counter supplements, even in infant doses, gave Kaiden really loose stools. Which, of course, he would let loose while bouncing in his excersaucer. Yay, poop down his legs and up his back!! Good thing it was winter and it was all contained in his sleeper! YUCK! And it didn't matter if we used cloth or disposables . . . there wasn't a diaper in the world that could hold it in. Maybe a garbage bag and duct tape, I don't know!
Eventually I moved Kaiden to a whole foods vitamin by my favorite company, Dr. Christopher's. Along with their Kid-E-Mins, Kaiden also gets their Kid-E-Calc (calcium) and when we ran out of the Native Remedies supplements, I gave him Dr. Christopher's Ear & Nerve Tonic and Kid-E-Trac (emotional wellbeing, helps the child to focus). He also gets choline bitratrate, TMG, tryptophan, and grapeseed extract. I don't really think the tryptophan does anything for him, so when we run out, I do not plan to continue that one.
The Kid-E-Mins & Kid-E-Calc made one HUGE difference noticeable within 48 hours . . . nice, normal SOLID poop! Soooooo much better!!!! The Ear & Nerve tonic . . . overnight Kaiden's balance improved and I could actually carry him around with one arm without him falling backward. What a relief!
Back to the seizures . . . I didn't notice a reduction in the amount of seizures, but rather a decrease in their severity. He was still having on average 4 - 10 single spasms per day but most of them were pretty mild. He would have a few though, that would lock him up for 2 - 3 seconds. Completely locked up, couldn't breathe . . . sometimes it would take a minute or two for Kaiden to snap out of it once it was over.
And back my belief that diet has everything to do with his seizures, no matter what the neurologist said . . . as far as the carrots & sweet potatoes went, it's not like I gave them to him once and noted activity . . . I tried on 3 separate occasions with the same, repeated result. A day and a half later each time, his seizure activity spiked. So I stopped giving him those foods. By now, Kaiden was pretty well on table foods. I had thought that he was spiking after eating spaghetti and tacos, but wasn't sure as the activity didn't seem much worse than average. One weekend, I ate an eggplant dish from Buca. It was super tasty, and a HUGE dish - took me 3 days to eat it all. And boy, did Kaiden's seizure activity spike. It was really bad, poor little guy. Once I finally figured out it was the eggplant doing it (I had never eaten eggplant before), I pumped & dumped all my fresh milk and gave Kaiden frozen breastmilk for a few days, and his seizure activity went back down as expected. Several months later, in late April 2010, I tried some fresh green peppers since Kaiden was doing well on table foods. (Kaiden had been sensitive to when I ate fresh green peppers all along, giving him a rash and made him painfully gassy. I stopped eating those long before the seizures started.) I ate a tiny amount on a Subway sandwich and didn't notice any significant difference in Kaiden, so a few days later I had a good helping of them at Chipotle. A day and a half later . . . on Mother's Day no less . . . Kaiden's seizure activity spiked like it had done with the eggplant. He spent Mother's Day having seizures and screaming. For several days after that I would literally walk around the house saying, "what the F do eggplant and green peppers have in common that Kaiden reacts so badly to them?" Then finally, I got the bright idea to type in Google, "green pepper eggplant have in common". And the connection came up . . . they are both members of the nightshade (solanaceae) family. As are tomatoes (remember spaghetti & tacos?), potatoes, all peppers - sweet and hot, paprika, ground cherries, and lots more foods I wasn't familiar with. It was like the lightbulb finally clicked on.
Being into natural remedies, I am familiar with some of the properties of deadly nightshade but never thought about foods of the nightshade family. I was using tomatoes, paprika, and chili peppers on a regular basis. Nightshade foods cause the body to excrete calcium, and calcium is essential to the nervous system. It is one of those plants that is used to treat in tiny doses, but in high doses causes the problem you are trying to treat. Eating nightshade foods = high doses.
I immediately eliminated nightshade foods from my & Kaiden's diets, and within a few days, saw a significant reduction in his seizure activity. Then I ate a grilled chicken sandwich from Dairy Queen (contained mayo, which has paprika in it, and a slice of tomato). A day and a half later, Kaiden's seizure activity spiked. When it went back down, I ate a hamburger with mustard (contains paprika) and as expected, a day and a half later his seizure activity spiked again. That was enough of a "lab test" for me, and I completely eliminated nightshade foods for both of us. Kaiden's seizure activity dropped again, and on May 28th 2010, he had his last seizure.
Within one week of being seizure free, Kaiden has become so much more alert, so much happier . . . he used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing. He smiles and giggles all the time now, it brings me to tears! Also within that first week, Kaiden began standing, supporting himself by holding onto something rather than relying on us to hold him upright. He began signing back his first "word", the sign for "eat".
And the neurologist said diet had nothing to do with it.
What frustrates me the most is western medicine's take on Down Syndrome . . . anything that comes up, they say, "well, he has Down Syndrome so of course he's going to have issues. Deal with it." Now, there is plenty of evidence out there that the extra chromosome causes metabolic issues, they don't process nutrients correctly/as efficiently as the non-Down Syndrome population. Yet there is little information out there about what to do about it . . . it's more so presented as "yes, we know about it, but there's nothing you can do so we aren't going to try. Get over it." . There is, however, Targeted Nutrition Intervention, which targets the mental development. There are a few companies that sell nutritional supplements designed for Down Syndrome based on the research of Dr. Henry Turkel & Dr. Jack Warner, but at a pretty high price. Some parents swear by it, some don't. More on that later.
Something else interesting I found . . . Down's individuals seem to have some of the same dietary needs as autistic individuals - lactose intolerant, gluten intolerant, etc. Again, there is little information on what to do about this in regards to Down Syndrome . . . yet there is tons of info out there for the autistic community.
Let me get back to the beginning . . . Kaiden was born via c-section at 33 weeks and 3 days due to an overly large placenta that seemed intent upon evicting him and spent 6 weeks in the NICU to finish growing. Due to some issues with the NICU nurses, I ended up exclusively pumping for Kaiden rather than breastfeeding. Never, EVER, let the NICU nurses give your infant a fast flow nipple if you intend to breastfeed. Good luck getting them back to the breast after that! I am still angry they did it without my permission. Had I known, I would never have let them. Anyway . . .at Kaiden's 6 month well visit, he was found to be severely anemic (due to his prematurity and him not yet being on solid foods, getting exclusively breastmilk). His hemoglobin had dropped to 5. Scary thing, I hadn't noticed. Sure, he was a little pale, but he has my skin tone and blonde hair. I had a tan and had kept him out of the sun. The pediatrician did note that his iron level did not seem to bother him, he was happy and active and was hitting milestones.
Unfortunately, at that appointment, I let them vaccinate him with the Hep B and D-TAP vaccines . . . the CDC states that any ill child should not be vaccinated at that time . . . the Hep B vax contains yeast. The D-TAP hasn't been definitively proven but there seems to be a correlation between infants getting the D-TAP vax and developing seizures. Kaiden was also prescribed an iron supplement and I was instructed to start him on solids whether or not he was ready. Most iron supplements for children are filled with sugar. Gee, guess what yeast feeds on . . . then a couple weeks later I went on antibiotics that were supposed to be safe for breastfeeding . . . and BAM all of a sudden, Kaiden had a massive yeast overload. The antibiotics I took were the last straw for his little system, wiped the good bacteria in his gut right out. Stinky, sticky, yeasty diapers, cradle cap, and projectile vomiting. Because he didn't have thrush, his pediatrician blew me off 3 times about it, said there was no way Kaiden could have a yeast infection. Poor kid, you could tell he felt just awful . . . and then within a few days the (benign myoclonic) seizures started.
I tried everything under the sun to find the cause of the seizures . . . I looked at the vaccines he'd been given, the dosage of the iron supplement, the antibiotics I had taken . . . all of which had seizures as a possible side effect. However, the details do not go into the type of seizure. I had noted that carrots and sweet potatoes intensified his seizure activity and stopped feeding him those foods. I had found some evidence that some (not most) individuals with Down Syndrome do not process beta carotene well, and came across an individual with epilepsy that said carrots did it for them.
(As an aside, I stopped the iron supplements and began giving Kaiden a tiny dosage of powdered kelp instead for his iron. Worked wonders, his hemoglobin is and remains excellent. It's super cheap and full of all sorts of good nutrition . . . DON'T waste your money with iron supplements when you can use FOOD to do it! You just have to be careful to give TINY doses if you're going to use if for an extended period of time.)
The seizures continued. The neurologist started Kaiden on vitamin B6, but said he would most likely need topiramate to control the seizures with repeat EEG's and a future MRI. We were told that benign myoclonic seizures would not affect Kaiden cognitvely, but as there was a concern it was actually West Syndrome, we were to watch carefully in the event of cognitive regression. Because of the side effects of western medicine, we chose not to go that route.
The vitamin B6 did absolutely nothing for Kaiden's seizures. At their worst, he was having 6 clusters per day with one spasm every 10 - 15 seconds for anywhere from 10 - 45 minutes. The longer the clusters lasted, the more time between spasms until they finally stopped. He would scream and cry after each spasm. These clusters would happen at random times of the day and night. As a parent, you feel so frustrated and want to cry right along with them . . . you feel powerless to stop it, yet you can't cushion them forever. The seizures would throw Kaiden forward violently, and he would smack his forehead on his toys, hard enough to bruise. I kept my homemade salve on hand, which kept away the bruising. The best way to describe these is like taking a bow, very hard and fast, and without your permission.
Because I am a huge fan of natural remedies, and not a fan of western medicine, we started giving Kaiden Native Remedies' Epi-Still and Triple Complex Nerve Tonic. The nerve tonic made him happier, no doubt about that. Epi-Still significantly reduced, but not eliminated his seizures. It reduced them down to an average of 4 - 10 single spasms per day over the course of 3 months and he didn't cry nearly as much when having a seizure.
The more research I did into seizures and the nervous system, I decided to try giving Kaiden calcium supplements to help support the nervous system along with the Native Remedies supplements. The calcium supplement also contained vitamin D3, magnesium, and vitamin K. This was about a week before his first birthday. Overnight, I noticed Kaiden was more alert and active and loud! This is where I began looking into Targeted Nutrition Intervention. I hadn't gotten into it previously as the reports I read said the Down's children would begin reaching milestones reported by happy parents . . . but that they also typically reached them at the same time as those not taking the supplements. The idea behind it is that Down's individuals do not process nutrients correctly/as efficiently as the non-Down's population does and that they need extra nutrients to compensate. It's not about mega doses, but finding the right dosage for the individual. Since I saw results overnight with just a calcium supplement, I wanted to try it all.
Because Kaiden was sensitive to certain foods, I researched as much as I possibly could and began slowly adding supplements to his routine rather than just buying a pre-made blend. My goal was to get him to the point we could go with a premade blend but I had to try all those ingredients separately. And I'm glad I did, found somethings he didn't tolerate well. I will note, that the over-the-counter supplements, even in infant doses, gave Kaiden really loose stools. Which, of course, he would let loose while bouncing in his excersaucer. Yay, poop down his legs and up his back!! Good thing it was winter and it was all contained in his sleeper! YUCK! And it didn't matter if we used cloth or disposables . . . there wasn't a diaper in the world that could hold it in. Maybe a garbage bag and duct tape, I don't know!
Eventually I moved Kaiden to a whole foods vitamin by my favorite company, Dr. Christopher's. Along with their Kid-E-Mins, Kaiden also gets their Kid-E-Calc (calcium) and when we ran out of the Native Remedies supplements, I gave him Dr. Christopher's Ear & Nerve Tonic and Kid-E-Trac (emotional wellbeing, helps the child to focus). He also gets choline bitratrate, TMG, tryptophan, and grapeseed extract. I don't really think the tryptophan does anything for him, so when we run out, I do not plan to continue that one.
The Kid-E-Mins & Kid-E-Calc made one HUGE difference noticeable within 48 hours . . . nice, normal SOLID poop! Soooooo much better!!!! The Ear & Nerve tonic . . . overnight Kaiden's balance improved and I could actually carry him around with one arm without him falling backward. What a relief!
Back to the seizures . . . I didn't notice a reduction in the amount of seizures, but rather a decrease in their severity. He was still having on average 4 - 10 single spasms per day but most of them were pretty mild. He would have a few though, that would lock him up for 2 - 3 seconds. Completely locked up, couldn't breathe . . . sometimes it would take a minute or two for Kaiden to snap out of it once it was over.
And back my belief that diet has everything to do with his seizures, no matter what the neurologist said . . . as far as the carrots & sweet potatoes went, it's not like I gave them to him once and noted activity . . . I tried on 3 separate occasions with the same, repeated result. A day and a half later each time, his seizure activity spiked. So I stopped giving him those foods. By now, Kaiden was pretty well on table foods. I had thought that he was spiking after eating spaghetti and tacos, but wasn't sure as the activity didn't seem much worse than average. One weekend, I ate an eggplant dish from Buca. It was super tasty, and a HUGE dish - took me 3 days to eat it all. And boy, did Kaiden's seizure activity spike. It was really bad, poor little guy. Once I finally figured out it was the eggplant doing it (I had never eaten eggplant before), I pumped & dumped all my fresh milk and gave Kaiden frozen breastmilk for a few days, and his seizure activity went back down as expected. Several months later, in late April 2010, I tried some fresh green peppers since Kaiden was doing well on table foods. (Kaiden had been sensitive to when I ate fresh green peppers all along, giving him a rash and made him painfully gassy. I stopped eating those long before the seizures started.) I ate a tiny amount on a Subway sandwich and didn't notice any significant difference in Kaiden, so a few days later I had a good helping of them at Chipotle. A day and a half later . . . on Mother's Day no less . . . Kaiden's seizure activity spiked like it had done with the eggplant. He spent Mother's Day having seizures and screaming. For several days after that I would literally walk around the house saying, "what the F do eggplant and green peppers have in common that Kaiden reacts so badly to them?" Then finally, I got the bright idea to type in Google, "green pepper eggplant have in common". And the connection came up . . . they are both members of the nightshade (solanaceae) family. As are tomatoes (remember spaghetti & tacos?), potatoes, all peppers - sweet and hot, paprika, ground cherries, and lots more foods I wasn't familiar with. It was like the lightbulb finally clicked on.
Being into natural remedies, I am familiar with some of the properties of deadly nightshade but never thought about foods of the nightshade family. I was using tomatoes, paprika, and chili peppers on a regular basis. Nightshade foods cause the body to excrete calcium, and calcium is essential to the nervous system. It is one of those plants that is used to treat in tiny doses, but in high doses causes the problem you are trying to treat. Eating nightshade foods = high doses.
I immediately eliminated nightshade foods from my & Kaiden's diets, and within a few days, saw a significant reduction in his seizure activity. Then I ate a grilled chicken sandwich from Dairy Queen (contained mayo, which has paprika in it, and a slice of tomato). A day and a half later, Kaiden's seizure activity spiked. When it went back down, I ate a hamburger with mustard (contains paprika) and as expected, a day and a half later his seizure activity spiked again. That was enough of a "lab test" for me, and I completely eliminated nightshade foods for both of us. Kaiden's seizure activity dropped again, and on May 28th 2010, he had his last seizure.
Within one week of being seizure free, Kaiden has become so much more alert, so much happier . . . he used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing. He smiles and giggles all the time now, it brings me to tears! Also within that first week, Kaiden began standing, supporting himself by holding onto something rather than relying on us to hold him upright. He began signing back his first "word", the sign for "eat".
And the neurologist said diet had nothing to do with it.
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