I meant to post a story about magic cream months ago (November) but never got around to it. This is what it was:
Yesterday Owen had blood drawn, again. I am really seeing that all the moms that go in and out of TCH look out for each other. For example, the last time Owen had blood work a little girl (5 or so) started talking to us. She proudly showed off her ‘magic cream’ and asked why Owen didn’t have any. I looked over to her mom sheepishly and asked “what is magic cream” and she told me there was numbing cream they put on the kids so they wouldn’t feel the needle. Say what? I hadn’t been told about this. So we went to the front desk and asked for the numbing cream. As it turns out, the doctor ordering the work-up had to request it. Dr. K did not … So this time, when we were handed our lab order, we asked for it!!! Poor guy still hated being restrained but he didn’t even flinch when they inserted the needle. Awesome! I love that I was about to make it a little better for him. And what made it even better, I was able to pass the information on to another mom. Her poor son was 12 or so and had been having blood drawn for years and they never heard it either. Come on doctors.
On June 1, Owen got magic cream again…this stuff really is amazing. He didn’t shed ONE tear. In fact, he didn’t fight at all. Sure does make the whole process a lot more bearable. I will be forever grateful to that sweet little girl who passed along this helpful info.
Tuesday, June 7, 2011
Plan.
On June 1 we went to see Dr. K. Owen wasn’t scheduled for his regular 3 month visit until June 22 but after some interesting moments and weeks, our new pediatrician called to tell him he needed to see Owen sooner.
In recent weeks, we have had numerous high temperatures (104.8 being the highest), his entire body covered in a rash that looked like hives, a patch of eczema that won’t go away, the accidental consumption of wheat and dairy, and a lot of bloody diapers.
I am tempted to believe Dr. K that we now have a plan to figure out what is going on, but I don’t want to get my hopes up.
As I have mentioned before, Owen was on Nutramigen AA (no dairy) from January 2010 through January 2011 but we took him off when things seemed to be getting better and put him on Nutramigen (does contain some dairy but it is broken down to its most elemental form). On June 1 we took four more vials of his blood. Lots of tests are being run but the one I am most immediately concerned with, is a test to determine if we need to put him back on Nutramigen AA. I should hear the results tomorrow. If we need to take a step back, I will do so in a heartbeat. Whatever is best for him, we will do. But, I would be very sad if this were the case. It is very expensive and we are fortunate to be able to afford this. It isn’t the price that makes me sad. It is the fear that he will have to drink this for the rest of his life. We shall see…
On July 11 we are meeting with an immunologist at Texas Children’s. If the immunologist cannot answer what plagues Owen, Dr. K promises to schedule Owen for an upper GI biopsy, colonoscopy, and liver biopsy. I am praying that we have answers by August 13 (the year anniversary from when we starting seeing Dr. K).
In recent weeks, we have had numerous high temperatures (104.8 being the highest), his entire body covered in a rash that looked like hives, a patch of eczema that won’t go away, the accidental consumption of wheat and dairy, and a lot of bloody diapers.
I am tempted to believe Dr. K that we now have a plan to figure out what is going on, but I don’t want to get my hopes up.
As I have mentioned before, Owen was on Nutramigen AA (no dairy) from January 2010 through January 2011 but we took him off when things seemed to be getting better and put him on Nutramigen (does contain some dairy but it is broken down to its most elemental form). On June 1 we took four more vials of his blood. Lots of tests are being run but the one I am most immediately concerned with, is a test to determine if we need to put him back on Nutramigen AA. I should hear the results tomorrow. If we need to take a step back, I will do so in a heartbeat. Whatever is best for him, we will do. But, I would be very sad if this were the case. It is very expensive and we are fortunate to be able to afford this. It isn’t the price that makes me sad. It is the fear that he will have to drink this for the rest of his life. We shall see…
On July 11 we are meeting with an immunologist at Texas Children’s. If the immunologist cannot answer what plagues Owen, Dr. K promises to schedule Owen for an upper GI biopsy, colonoscopy, and liver biopsy. I am praying that we have answers by August 13 (the year anniversary from when we starting seeing Dr. K).
Thursday, March 17, 2011
A good visit.
Yesterday was our appointment with Dr. K. It was the most positive/productive of all our visits. Unfortunately, Owen has lost two pounds since Jan. 10. And one of those has been in the last week. I think this got his attention from the get-go. Owen is supposed to be gaining weight, not losing it! Dr. K immediately jumped in with questions trying to ascertain if O had had a stomach bug. Nope. He had had congestion pretty much since January so I had taken him to the Ped. last week. They wanted to put him on meds but were hesitant so they told us to give him Zyrtec. Dr. K interrupted me and said he doesn’t want O taking antibiotics. Hello? Why are you just now telling me this??? Anyway, that is a battle I wasn’t willing to start so I acted surprised and allowed him to move on. Dr. K seemed okay with the Zyrtec until I explained to him what happened last Friday.
Last Thursday night we gave Owen Zyrtec as directed by his pediatrician. I don’t recall it being a particularly difficult night. He went to school and everything seemed fine. But when I picked him up, he just didn’t look right. His face was slightly swollen, he had bright red eczema patches on both cheeks and he was not responding to anyone. His eyes were glazed over … he was not acting like O.
It scared the crap out of me. But, it wasn’t “new”. We had seen this behavior before. Back in August at his 10 month check-up, I bawled in his pediatrician’s office because I was convinced my son was autistic. The pediatrician was concerned with some of his behaviors but he wasn’t willing to diagnose him and basically told me there was nothing I could do. Fast-forward 7 months and I no longer think he is autistic. I do, however, think some foods cause him to act that way. And of all his reactions, this is the one that scares me the most.
Once I described this reaction to Dr. K, he said next time it happened, I needed to take Owen to the ER immediately. The doc agreed that it could have been the Zyrtec or he could have gotten into something at school, either way it was bad, a sign of something much worse and I needed to have him checked immediately should it happen again.
I shared the article I mentioned in my last post with Dr. K and he agreed to do a colonoscopy to see what is going on in there. But, he is more concerned with his liver right now so that is where we will focus in the immediate future. We had another round of blood work (that is not getting any easier) and are awaiting the results. A liver biopsy may be scheduled or another upper GI endoscopy. Dr. K wants to go back and look at O’s liver’s reaction to certain food proteins.
We were told to take him off Coconut milk and to get him back up to 40 ounces of Nutramigen (this means more night feedings because we won’t want to take away his solids during the day). We were also told to start giving him DuoCal, a powdered nutritional supplement to increase his caloric in-take.
We have a meeting with his school on Monday to make sure everyone is doing everything they can to give Owen a safe environment.
And, we discussed vaccines again. While at the pediatrician’s office last week, they pushed for me to vaccinate again and pushed that I get the approval from Dr. K. Nope. Dr. K won’t give it. He says the only way he would allow Owen to be vaccinated is if we met with an Immunologist. While I am totally okay having Owen unvaccinated for now, it is a concern in the back of my head. Am I hurting him by allowing him to remain un-vaccinated? But, I am scared to death to inject him with that stuff. It will be so nice to have someone look at O and say what is safe and what is unsafe for him. I didn’t even know this was available. And frankly, I think it should be available to EVERYONE! Sadly, it is a fact that vaccines do cause harm to some people – why else would they have a vaccine fund to help those injured? Most parents just don’t know if their child will be okay being vaccinated until it is too late. But they are pushed on us for the good of society. A sacrifice for the greater good they say. Hum? Anyway, I am so grateful that Dr. K is making this available to us. So grateful!!!!!!!!!!!
As soon as I know more, I will post more. Have a great night!
Last Thursday night we gave Owen Zyrtec as directed by his pediatrician. I don’t recall it being a particularly difficult night. He went to school and everything seemed fine. But when I picked him up, he just didn’t look right. His face was slightly swollen, he had bright red eczema patches on both cheeks and he was not responding to anyone. His eyes were glazed over … he was not acting like O.
It scared the crap out of me. But, it wasn’t “new”. We had seen this behavior before. Back in August at his 10 month check-up, I bawled in his pediatrician’s office because I was convinced my son was autistic. The pediatrician was concerned with some of his behaviors but he wasn’t willing to diagnose him and basically told me there was nothing I could do. Fast-forward 7 months and I no longer think he is autistic. I do, however, think some foods cause him to act that way. And of all his reactions, this is the one that scares me the most.
Once I described this reaction to Dr. K, he said next time it happened, I needed to take Owen to the ER immediately. The doc agreed that it could have been the Zyrtec or he could have gotten into something at school, either way it was bad, a sign of something much worse and I needed to have him checked immediately should it happen again.
I shared the article I mentioned in my last post with Dr. K and he agreed to do a colonoscopy to see what is going on in there. But, he is more concerned with his liver right now so that is where we will focus in the immediate future. We had another round of blood work (that is not getting any easier) and are awaiting the results. A liver biopsy may be scheduled or another upper GI endoscopy. Dr. K wants to go back and look at O’s liver’s reaction to certain food proteins.
We were told to take him off Coconut milk and to get him back up to 40 ounces of Nutramigen (this means more night feedings because we won’t want to take away his solids during the day). We were also told to start giving him DuoCal, a powdered nutritional supplement to increase his caloric in-take.
We have a meeting with his school on Monday to make sure everyone is doing everything they can to give Owen a safe environment.
And, we discussed vaccines again. While at the pediatrician’s office last week, they pushed for me to vaccinate again and pushed that I get the approval from Dr. K. Nope. Dr. K won’t give it. He says the only way he would allow Owen to be vaccinated is if we met with an Immunologist. While I am totally okay having Owen unvaccinated for now, it is a concern in the back of my head. Am I hurting him by allowing him to remain un-vaccinated? But, I am scared to death to inject him with that stuff. It will be so nice to have someone look at O and say what is safe and what is unsafe for him. I didn’t even know this was available. And frankly, I think it should be available to EVERYONE! Sadly, it is a fact that vaccines do cause harm to some people – why else would they have a vaccine fund to help those injured? Most parents just don’t know if their child will be okay being vaccinated until it is too late. But they are pushed on us for the good of society. A sacrifice for the greater good they say. Hum? Anyway, I am so grateful that Dr. K is making this available to us. So grateful!!!!!!!!!!!
As soon as I know more, I will post more. Have a great night!
Tuesday, March 15, 2011
More doctors...
More Doctor visits…
My Aunt forwarded me this story. I want to start off by saying I in no way think Owen has it this bad and I am forever grateful for that reality. However, I do think he has a more mild version. And I am frustrated to no end for this mom, me and so many others out there that are not getting the help we need. I have heard of FPIES before but I dismissed it…until I read Landon’s story. Now, I am not so sure. Owen has exhibited every symptom Landon has. The only difference is that Owen is thriving. That wasn’t always the case. He was born underweight and remained that way until late January of 2010. I have said this before and I will say it again, Owen is thriving only because of the Nutramigen AA (elemental formula). A friend recommended this to me after I cried to her about Owen (note our pediatrician didn’t recommend it) and within a day of putting him on it, he was a different baby. Just because someone was kind enough to point me in this direction and just because we had the financial ability to pay $700 per month to feed our baby, it does not mean that he doesn’t need a diagnosis. He is still sick. If it weren’t for this formula, I am confident Owen would have been classified as failure to thrive. After starting the Nutramigen AA he jumped to the 90th percentile in a few weeks!
So we are going in for a follow up with Dr. K on Wednesday. I am scared. I plan to walk in armed with this article. I am praying he listens.
Then next week, I am interviewing a new pediatrician. We like our current one okay but I think if we found another who was a better champion for Owen’s cause, life would be a little easier (or at least it would be a little easier to get a new GI doc or to get the one we have to listen to us).
My Aunt forwarded me this story. I want to start off by saying I in no way think Owen has it this bad and I am forever grateful for that reality. However, I do think he has a more mild version. And I am frustrated to no end for this mom, me and so many others out there that are not getting the help we need. I have heard of FPIES before but I dismissed it…until I read Landon’s story. Now, I am not so sure. Owen has exhibited every symptom Landon has. The only difference is that Owen is thriving. That wasn’t always the case. He was born underweight and remained that way until late January of 2010. I have said this before and I will say it again, Owen is thriving only because of the Nutramigen AA (elemental formula). A friend recommended this to me after I cried to her about Owen (note our pediatrician didn’t recommend it) and within a day of putting him on it, he was a different baby. Just because someone was kind enough to point me in this direction and just because we had the financial ability to pay $700 per month to feed our baby, it does not mean that he doesn’t need a diagnosis. He is still sick. If it weren’t for this formula, I am confident Owen would have been classified as failure to thrive. After starting the Nutramigen AA he jumped to the 90th percentile in a few weeks!
So we are going in for a follow up with Dr. K on Wednesday. I am scared. I plan to walk in armed with this article. I am praying he listens.
Then next week, I am interviewing a new pediatrician. We like our current one okay but I think if we found another who was a better champion for Owen’s cause, life would be a little easier (or at least it would be a little easier to get a new GI doc or to get the one we have to listen to us).
Thursday, February 24, 2011
A bad day.
I am an attorney. Not sure if I have mentioned that. Anyway, my job is pretty demanding. It is a great job, and I love it, but the demands at work sometimes can be too much – especially having a child whose needs are different and slightly more than our other child’s. Lately, I have had my head in statutes, codes and case law preparing for a CLE presentation I had to give today. I am a transactional attorney. I chose to be a transactional attorney because I do not, absolutely do not, like getting up and talking in front of people. But this was a necessity so I did it. And at 4 yesterday, while in the middle of putting final touches on my paper and trying my hardest to fight the swarm of butterflies that were beginning to build up in my stomach, I got a phone call from Owen’s school. Apparently, he had had a bad day. Owen’s teacher is the sweetest girl. She is full of joy and faith and I am so grateful he is with her; but, I don’t think she understands his GI issues. She proceeds to tell me that he was crying out in pain all day, that he didn’t want to be held, that he was hunched over like his tummy hurt and that he refused to nap. This broke my heart. One, I wasn’t there to hug him, whisper to him, try and distract him (all things I do in the middle of the night) and two, he has rarely had issues during the day. In fact, I don’t think he has had issues during the day since he went on Nutramigen AA back in January of 2010. Does this mean it is getting worse? But the worst part, Owen’s teacher said she thinks it was just a normal tummy ache like all kids get. I wish it were that. I really, really do. But I am his mom. I have another child who is ‘normal’ and gets ‘normal tummy aches’ and what he experiences is anything but normal. I am choosing to believe that she was just trying to make me feel better and I am choosing to ignore the lies that want to creep in that say I am imagining it. I am choosing to believe that she really does get it and that she really does watch him like a hawk during the day to make sure he doesn’t get into something he shouldn’t. I am choosing to believe it is just the shoe-string potatoes that I let him have the night before.
I am not imagining this.
So back to my job and that presentation that was looming…it went great. But Owen did have a rough night last night full of more screaming and more cramping. I gave my presentation on little sleep and now, I am so happy yesterday and today are behind us. I look forward to putting the kids down and drinking wine. I just wish Chad would be home tonight to help celebrate and relax with me. Darn HLSR
I am not imagining this.
So back to my job and that presentation that was looming…it went great. But Owen did have a rough night last night full of more screaming and more cramping. I gave my presentation on little sleep and now, I am so happy yesterday and today are behind us. I look forward to putting the kids down and drinking wine. I just wish Chad would be home tonight to help celebrate and relax with me. Darn HLSR
Tuesday, February 15, 2011
New Stuff.
O wow, it has been over a month! Again, so much has happened, I don’t know where to begin. How about Coconut Milk?!? Yes, Owen is drinking this fabulous stuff. We do half coconut milk, half Nutramigen. Man o man is it tasty (a little thick for my liking but yummy nonetheless). His diet now consists of a white flakey fish, boars head deli turkey (gluten free), cauliflower, mum mums, an occasional GF chicken nugget, and potatoes. We are having second thoughts though about the potatoes. They had become a staple but we have seen too much of old Owen so we are thinking it was/is the potatoes. He is currently suffering from a stomach bug - lots of vomiting and other stuff but no crying out in pain. I plan on making ground turkey for him once he passes this bugger thing.
We have fun news to announce…we bought a house! We are so excited and ready to get in there and make it our home. We were planning on waiting and saving until we could buy our dream home but the more we thought about it, the more the price tag on my “dream” home made us sick…and then this little gem popped up. It is going to take lots of love and attention but we will get there eventually. The best part about the house…it is super close to both sets of grandparents and just a miles’ walk from the world’s two best babysitters. We are a little worried that we won’t be so close to Texas Children’s anymore but they are building a West campus. Soon, it will be just like we never left.
We have a follow up with the GI doctor in March. Chad met with his neurologist last week (work kept me from going) and life seems to be settling down a bit. Last week and the week before were really, really hard with O and his poor tummy. He was waking more and crying out in pain more. Again, we have made some adjustments to his diet and hopefully, that will settle down too.
We have fun news to announce…we bought a house! We are so excited and ready to get in there and make it our home. We were planning on waiting and saving until we could buy our dream home but the more we thought about it, the more the price tag on my “dream” home made us sick…and then this little gem popped up. It is going to take lots of love and attention but we will get there eventually. The best part about the house…it is super close to both sets of grandparents and just a miles’ walk from the world’s two best babysitters. We are a little worried that we won’t be so close to Texas Children’s anymore but they are building a West campus. Soon, it will be just like we never left.
We have a follow up with the GI doctor in March. Chad met with his neurologist last week (work kept me from going) and life seems to be settling down a bit. Last week and the week before were really, really hard with O and his poor tummy. He was waking more and crying out in pain more. Again, we have made some adjustments to his diet and hopefully, that will settle down too.
Tuesday, January 11, 2011
Set backs, scares, screams and a trip to TCH.
Last Friday I got the call that every working mom dreads…come get your kid, they are sick. Ugh. It’s not that they are sick and we have to leave to get them that makes it “ugh,” it is the fear that you will have to miss more work…and I did.
Over the weekend Owen’s fever spiked to 104.7. Man, I hate high fevers. They scare me to death. Not to mention they make Tylenol and Motrin necessary. So we alternated between the two to reduce the fever and of course, cramping and screaming followed. What is it about those two that hurt him? I really think it is Motrin and I think he agrees. He will take the Tylenol no problem but as soon as we come at him with Motrin, he slams his mouth shut, screams and cries. I missed work yesterday but hopefully, he is past this virus. And yes, it was a virus…we know that for sure.
You see, Owen is not vaccinated. Think what you will but it was my decision and I think it was the best decision for him. Cate reacted badly to all her shots. High fevers, etc. So why would I put an already sensitive child through that? I won’t. At least not until we have whatever is going on figured out. And his pediatrician supports me, but still disagrees and tells me every chance he gets. I used to doubt my decision but then “the best pediatric gastroenterologist in Houston” told me I did the right and very best thing for Owen by postponing them. I don’t doubt myself anymore.
So, back to the virus…because Owen is not vaccinated, we have to get blood drawn any time his fever is over 102. Texas Children’s Hospital is just down the street from us, and on Monday we had him tested. By Monday night we had the preliminary results and everything was within the “normal range.” We are still waiting on the test that will tell us if any bacteria is growing in his blood but I highly doubt that will be the case.
I got pretty upset when the doc told us to go get blood. I started to feel like he was punishing us for delaying vaccines. But then it dawned on me…this kid is being watched so closely. He is getting better care than Cate. It is inconvenient to say the least but if anything bad ever starts to grow, I suspect it will get caught quickly!
But that wasn’t even the scariest part of the weekend…we had another scare where he stopped breathing. Some of you may know that this has happened two times before (August 13 and September 13). The first time it happened we ended up spending the weekend at TCH. The second time, just warranted a follow up with a pediatric neurologist and a MRI – both of which we are still waiting on. The first time was the scariest but this time is a close second. Owen was sitting on the floor with Cate. She took a toy away from him. This is nothing new. She takes a toy away from him whenever she sees him holding a toy. And he has never stopped breathing before…I was sitting on the couch. Chad was standing right behind them. I saw her take the toy and watched him open his mouth to scream but nothing came out. I looked at him, realized what was happening and said “Chad, he isn’t breathing.” Unsure what I just said, Chad just stood there. I said it again but right as I did, Owen fell back and hit his head on the hardwood floors. Chad scooped him up and tried to get him to start breathing again. He couldn’t. So I told him to call 911 and I grabbed him from him and started blowing in his face. His eyes were open but he had already started turning blue. After about 4 blows of air in his face he took a gasp and then fell limp but stopped breathing again. I blew in his face again 2 more times. He let out a big cry and did it again. After the third time I was able to get him to stop and take several steady breaths. We ended up not calling 911 but we did watch him like hawks the rest of the night/weekend.
When this happened back in August for the first time, I wasn’t with him. I just found him blue and stiff in the pack and play. He was classified as having a seizure but no one was really sure if that is what it was. After this latest episode, I am less inclined to think seizures…I think he just gets really upset and holds his breath. But it is the limp behavior after that worries his doctors so we will have the consult and MRI in February.
All seems to be quiet in our house today. Owen is back in school and Cate has yet to show signs of getting this most recent bug. His teacher just called me to tell me he ate all his steak. Yay!
Over the weekend Owen’s fever spiked to 104.7. Man, I hate high fevers. They scare me to death. Not to mention they make Tylenol and Motrin necessary. So we alternated between the two to reduce the fever and of course, cramping and screaming followed. What is it about those two that hurt him? I really think it is Motrin and I think he agrees. He will take the Tylenol no problem but as soon as we come at him with Motrin, he slams his mouth shut, screams and cries. I missed work yesterday but hopefully, he is past this virus. And yes, it was a virus…we know that for sure.
You see, Owen is not vaccinated. Think what you will but it was my decision and I think it was the best decision for him. Cate reacted badly to all her shots. High fevers, etc. So why would I put an already sensitive child through that? I won’t. At least not until we have whatever is going on figured out. And his pediatrician supports me, but still disagrees and tells me every chance he gets. I used to doubt my decision but then “the best pediatric gastroenterologist in Houston” told me I did the right and very best thing for Owen by postponing them. I don’t doubt myself anymore.
So, back to the virus…because Owen is not vaccinated, we have to get blood drawn any time his fever is over 102. Texas Children’s Hospital is just down the street from us, and on Monday we had him tested. By Monday night we had the preliminary results and everything was within the “normal range.” We are still waiting on the test that will tell us if any bacteria is growing in his blood but I highly doubt that will be the case.
I got pretty upset when the doc told us to go get blood. I started to feel like he was punishing us for delaying vaccines. But then it dawned on me…this kid is being watched so closely. He is getting better care than Cate. It is inconvenient to say the least but if anything bad ever starts to grow, I suspect it will get caught quickly!
But that wasn’t even the scariest part of the weekend…we had another scare where he stopped breathing. Some of you may know that this has happened two times before (August 13 and September 13). The first time it happened we ended up spending the weekend at TCH. The second time, just warranted a follow up with a pediatric neurologist and a MRI – both of which we are still waiting on. The first time was the scariest but this time is a close second. Owen was sitting on the floor with Cate. She took a toy away from him. This is nothing new. She takes a toy away from him whenever she sees him holding a toy. And he has never stopped breathing before…I was sitting on the couch. Chad was standing right behind them. I saw her take the toy and watched him open his mouth to scream but nothing came out. I looked at him, realized what was happening and said “Chad, he isn’t breathing.” Unsure what I just said, Chad just stood there. I said it again but right as I did, Owen fell back and hit his head on the hardwood floors. Chad scooped him up and tried to get him to start breathing again. He couldn’t. So I told him to call 911 and I grabbed him from him and started blowing in his face. His eyes were open but he had already started turning blue. After about 4 blows of air in his face he took a gasp and then fell limp but stopped breathing again. I blew in his face again 2 more times. He let out a big cry and did it again. After the third time I was able to get him to stop and take several steady breaths. We ended up not calling 911 but we did watch him like hawks the rest of the night/weekend.
When this happened back in August for the first time, I wasn’t with him. I just found him blue and stiff in the pack and play. He was classified as having a seizure but no one was really sure if that is what it was. After this latest episode, I am less inclined to think seizures…I think he just gets really upset and holds his breath. But it is the limp behavior after that worries his doctors so we will have the consult and MRI in February.
All seems to be quiet in our house today. Owen is back in school and Cate has yet to show signs of getting this most recent bug. His teacher just called me to tell me he ate all his steak. Yay!
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