Dear Dr.* Douchebag (aka Mr. Moron),
It has taken a number of years of ignoring you, but you have been caught perpetrating the big lie, for what I hope will be the last time in our children's lives. The first of many times you perpetrated the big lie was when our daughter Elsa was in the first grade. She was clearly ahead of the other children in her class for literacy and had a teacher who at the time seemed incapable of providing enrichment within her own classroom to meet Elsa's needs. We met with the teacher and agreed that she was several grade levels ahead and needed to go to another class for her reading. This teacher made the fatal mistake of getting you involved since she was new to the school and I guess didn't know yet to run screaming from your involvement.
You decided that Elsa could not go to another class to be educated at her level. This request had been received at the school many times and never granted and you didn't want to be the one to set precedent. Indeed. Wait, you thought it would be a good idea to send her into her twin sister's class where the teacher had more experience to teach many levels at once. I guess that little lie made it impossible for you not to grant our request to put the girls in the same class from that year on. But wait, that was a precedent too wasn't it? No other twins had ever been allowed to be in the same class before that. Hmmmm? Maybe you should run for Congress? You are a waffler amongst men. But don't get me started on your misogynist tendencies. This is about lies, remember?
You also brought in an instructional coach who was supposed to be helping the teacher. We found out that she was actually teaching Elsa and Elsa saw her as a teacher as well. We weren't OK with our daughter having so many adults in her life when the outcome of Elsa being taught at her level was clearly not going to be met in this manner. All because you didn't want to set precedent? When we brought up that Elsa was already going to another room and having two additional adults in her life as justification for the ease of moving her into another class for literacy, you waffled again. Then the big fat lie came out of your mouth and with those words we pulled our daughter out of school for literacy and my short foray into homeschooling began.
We can't put Elsa into a higher grade. Those are not her peers.
We knew right there and then that we were never going to see eye to eye on anything. Dr. Douchebag (who was Mr. Moron at the time) didn't know anything about advanced children or their development, hell might not even know much about children at all. He lied again when he told us she couldn't be tested for giftedness until third grade. We of course scheduled testing for her immediately. Were the children in her current classroom her peers? Definitely not. They all saw her as different, and while there are more children who stand amongst her in her current grade than ever before, from the beginning of time Elsa has been far more advanced academically and emotionally. The darn kid just doesn't test well and that will stand in her way her whole life because administrators see numbers. Luckily, every other year a teacher sees the person behind the numbers and runs with it. There has come a time when every other year isn't enough.
She had a right then and now to be exposed to individuals on her level, above it, even below it, to receive a deep awareness of all that education has to offer. Not a watered down facade of a reality that will never exist outside the halls of a subpar elementary school. Had she been allowed to blossom and soak in the knowledge she sought with professional teachers and not just her laptop and a library card and a harried mom of three, she might well be a totally different person. Not the one beat down and hopeless after being so let down. She learned that she would talk and no one would listen and when bullied the perpetrator had all the rights and the victim none. And there was nothing her irate mom and a parent coalition could do about it when a superintendent and school board were more worried about test scores and budget cuts than students. That is not the world I want my daughter to see or believe in.
And so, the big lie is like this. The world is in fact made up of all kinds of people who are not your age or race or gender or intelligence, and yet they are your peers, competitors even. Turns out they are not even in your grade level. You are told your whole elementary career that you are in grade 1, 2, 3, 4 and this is what you will learn and be expected to know. Then one day reality hits. You are in a spelling bee and it turns out you are competing with 4th, 5th, and 6th graders even though your number says 4. You are required to know everything you have been taught and yet were supposed to know, even though no one told you, wait actually LIED to you that you didn't need to know, everything in the two grades ahead of you. That's the real world. There isn't a list you get to study in advance of life's tests. No one tells you that you are going to be required to know things no one taught you and didn't anticipate. You have to figure it all out for yourself. You are toast if you believe the big lie that if you do as you are told and stay with your peers you will be prepared or have any chance of being ahead of the curve. You don't get a fucking trophy or ribbon just for showing up. You have to work hard and other people will take credit for your work and you will have to fight to earn every atta boy you get. Even harder if you happen to be a woman. You will even get paid less, but let's not open that can of worms.
I feel like I let my girls down. I knew it was a lie. I thought I could live with it. But watching my 10 year old cry because she didn't win the spelling bee, well, I felt like shit. Sure, Elsa only had two days to study because of our vacation, and the instructions were not at all clear that she needed to study the words for all the grades and would be competing against them. But it was my fault because I had promised to never lie to them about the world. I wanted to protect them, sure, but I didn't want to raise them so sheltered that they called me the first week they left the house and screamed "why didn't you tell me this was going to happen?" I get that they wouldn't believe me until they saw it with their own eyes, but I wanted to show them what could happen. Most importantly I wanted to give them the most strength and invincibility and resilience that I could. For this spelling bee, I failed. I knew in life you are always up against tough competitors that have advantages of having done this already and somehow figured out the rules to the game that are unwritten and even lied about.
As Brady told me, "Elsa cried. Tell Elsa to tell her spelling teacher that she was just spelling words in Spanish." Yep, that makes more sense than telling a first grader you can't learn with the people you are going to be competing against in real life because elementary school doesn't acknowledge that reality. I can't stop my kids from crying or being upset, but I don't want them to be let down because I let a lie fester which gives them the false confidence that if they just memorize a list they are going to win. The truth is that their peers are all other caring, feisty, compassionate, funny, passionate, wise-cracking, intelligent, fun-loving, amazing people who want to make a difference in the world.
Dr. D-Bag was right about one thing: we didn't want Elsa to miss out on being around her peers either. The thing he was wrong about is that age or grade level or any other classifying term is not the defining characteristic of a peer. That lie is absolutely behind every dark moment in history from a segregated society to concentration camps. If we do not give each and every person the same chance to succeed no matter their age or gender or skin color, we have failed at being human.
I believe if we all do our best and fight for what we believe in, the world can change. We are all responsible for what we leave behind. Even though it is not what I would have chosen as an outcome, I know I will leave behind a changed school and more aware administration so that hopefully the next child who shows up that doesn't fit into the box is allowed to poke a little hole and at least see what's outside, if not cut out a window or door until all kids of all abilities are free from harm and inspired to achieve at their level regardless of whether it is far above or below the curve. That no matter what the policy says, everyone does right by every child every day. And when people make mistakes they admit it, learn from it, and move on. Moving on sounds like a very good plan. I have given and taken everything I can from a world I don't believe in.
Douche. D-O-U-C-H-E Douche That is correct. (turns out douche bag is two words, damn it!)
Lie. L-I-E Lie. That is correct.
Goodbye. G-O-O-D-B-Y-E. Goodbye. That is correct.
*Oh, right, I remember, we thought you weren't watching out for the best interests of our kids because you had small children of your own at home. Turns out you were working on your doctorate so as to more effectively step on our children's heads on your way to bigger and better things! Maybe in other people's worlds doctors might automatically get more respect, but in mine doctors, more than anyone else, have to earn it. I have probably never respected anyone less.
My mom thinks I should send a version of this letter to the principal, school board, and superintendent. I don't think I can take out the word douche bag. Anyone else think it would make a difference?
Saturday, January 28, 2012
Thursday, January 26, 2012
Travel, tonsils, and we are one screwed up happy family
Brady finally slept through the night for the first time since getting his tonsils and adenoids removed on Monday. Luckily the surgery went smoothly and he did not have a regression from anesthesia. Have I mentioned how crazy I am? Sometimes I think doing things last minute and completely jam packed leaves less opportunity for anxiety over the all things that could go wrong! Sometimes. Although I normally do not live spontaneously or as intensely (at least on purpose) so I can't say for sure. But planning a family vacation for a family of five around all of our medical appointments and treatments was a little much even for me!
We had Brady's IVIG on a Thursday which he did not tolerate as well since it was in a new satellite location and grandma wasn't there to help get his IV in place stress free. The most important thing is keeping the experience, well his life in general, stress free. There was a last minute cancellation in the sleep clinic so Elsa went for her sleep study on Friday night (we are worried about sleep apnea, recent attention changes, snoring, as well as her constant flopping at night like a fish out of water). The weekend was for packing, shopping, and picking up prescriptions. Then we left for Florida on a Monday (I flew with the kids on my own). After finally getting out of the airport in our brand new rental minivan, drove to Whole Foods where Brady had a DEFCON 1 meltdown since he had been up since 4 AM. Luckily he fell asleep during the drive to the Cocoa Beach condo we rented and immediately had an early dinner (me an airport salad and the kids noodles with Earth Balance as we didn't get spaghetti sauce in the aisle where we abandoned our cart due to the aforementioned nuclear catastrophe) so we could run on the sand and Brady could hurdle jump over the waves. Nothing makes me happier than squealing kids amidst crashing waves. It has been an awful year for everyone and we all needed to laugh and smile again and remember what it's like to enjoy each other's company and not merely exist barking orders at each other.
I took the kids to Kennedy Space Center on Tuesday in the morning and drove the hour trek back to the airport in the nighttime, earning our stripes in the toll booths all along the way. We picked Brian up and the family part of our vacation began. Did I mention that we left our door open every night and could hear the waves crashing and drank our coffee to the same sweet music each morning on the balcony? We just threw the kids on East Coast time and left for Seaworld on Wednesday and Legoland on Thursday.
Then Friday arrived and I woke up early, wondering what we would learn at Brady's appointment. We had been having a great time as a family and luckily finding all kinds of allergen friendly snacks and dining. That made the trip worth it already, but we really had come to have someone else look at all that we were doing and make sure we were on the right track. We were with the Dr. for one hour and fifty minutes, Brady quietly playing on the floor behind us, the girls firmly planted in the waiting room with their homework and books, snacks and bathroom at their ready. Elsa completely drained the battery on my iPhone in that amount of time. The thing I missed most from home? My car charger and back up camera! I could move to Florida tomorrow and be completely content if I had those things.
We went over the history and current treatments. He did say that we could eventually raise the level of his mito supplements, but that all that we were doing to increase speech, eye contact, and energy level, also amps up that fun OCD part of the brain so there was a need for a delicate balance. HBOT is one category he said that can be extremely helpful but at the same time problematic for PANDAS kids. Good to know my gut on this one was dead on. He gave us a list of supplements to introduce with dosages, order, and instructions to start each one and wait at most 3-5 days between new supplements. He said basically we want to support him and monitor results as quickly as we can without leaving him unsupported for longer than absolutely necessary. Once these supplements are on board, we can consider medications if he is still not where we want him to be. I had no idea that even the 24 hour EEG misses 20% of seizures, so one thing to consider is a low dose anti-seizure medication and also an alzheimer's drug called Namenda that has been studied, albeit not specifically approved for use, in autism. We left with studies of each recommended treatment, with more emailed to us later, to help us learn about and make decisions about what treatments to choose.
When you are doing this on your own, you research all the different options but sometimes are just guessing what will be the most effective, in a random order, and don't always move as quickly as when you have someone else's opinion weighing in. You hesitate because you won't want to make a mistake. When you are in a crises, there is less to fuck up so you tend to act more decisively. What is that saying, danger creates opportunity?
I left feeling underwhelmed, because you think: here is this famous Dr. who is going to solve all your problems, see the one thing you are missing, and take care of it (or at least tell you how to take care of it). Then you are reminded that why you sought his help was so that you weren't on your own, weren't missing anything, and getting confirmation that all that you were doing was correct, but just needed a little tweaking should be reassuring. After a day, it was reassuring, and helpful to have confirmation that I wasn't a complete idiot and should have long figured this out by now. It felt good to not be on our own for the very first time.
I kept hearing the voices in my head of so many "professional recovery experts" like the new DAN Dr. up North and other parents who recovered their kids using different means saying to me that this famous Florida Dr. was going to tell us Brady needed IV chelation and HBOT and had PANDAS and mito dysfunction. The truth is he did say it's PANDAS by definition, but whether it reached the level of sydenham's chorea no one could say definitively without a cam kinase test which you can't get anymore. What the SC diagnosis might get is access to PEX, which a PANDAS diagnoses would not get, and a layer of credibility without the controversy. He also didn't want to change anything else that was working, even the chelation method right now. It was also amazing to be forming a partnership with our son's recovery and not have a dictator. I think it helped that I didn't act like one either. I really listened to his opinion and plan to follow it because I have the confidence that he will take it seriously and stick with it when the shit hits the fan.
He also looked me straight in the eye and told me how very fortunate and lucky we were that the developmental pediatrician pulled the throat culture because without it we'd be hanging out there without anything. I know how lucky we are and how amazing it is that Brady has received so much amazing help from really talented people and I say my thanks when my head hits and rises from the pillow each day and night.
He ordered a bunch of blood tests, so we decided to go ahead and do an IV glutathione treatment at the same time. Might as well get some bang for your buck for that poke! The labs included ammonia, lactic acid, carnitine, CK, plasma amino acids, acylcarnitine, strep titers ASO and anti -DNAse(monitoring them periodically to see if they go down will be important), vitamin D, CBC, CMP, cholesterol, ferritin, and folate antibody testing. We are supposed to schedule a follow up call in 4-6 weeks to go over testing and review progress on supplements. The gist is to calm, calm, calm that part of the brain antagonized by the autoimmunity so that he gets back to baseline. Then we can move on to amping up the energy in his cells to improve those aspects that still need support.
I did ask him at the end if he had seen kids like Brady who had regressed more than once, even after getting into the realm of recovery, and yet come back and go on to recover completely. He said that he absolutely had, but that he had also seen them regress again so it was important to work to prevent this but know it was possible. There were no guarantees. He also said something interesting that I don't think he would have said in our originally scheduled hour and a half had I not pressed and gone over in time. He got his questions answered so I wanted mine answered, even if I had to pay extra to get them. He said that in the long run, we may find that if this has never happened to Brady, we certainly wouldn't be looking in depth at all of this other angles such as oxidative stress and mito function, and that because of the support we praovide in these areas, he may end up doing even better than he would have if he had never had this regression.
Moving forward he suggested that we either raise his IVIG dose or do them every 21 days, and that he agreed that after six months we would know whether this intervention was going to stick or if we needed to move on to other treatments. He thinks that since Brady had been out there so long without treatment may mean it takes longer to get rid of the autoantibodies since they have been around longer. He also said something interesting that kids who have an autism diagnosis first and then PANDAS are often tougher to treat. Those kids who were one hundred percent typical are the ones who can have just one IVIG and recover, but kids like Brady often need much, much more. I had already decided to bump up the dose on his next IVIG treatment (not sure about the one after that).
SO we will be trying all these new calming supplements, a higher dose IVIG, and hopefully the new tests and treatments will get us to a baseline that we can propel off of. I think in a week Brady will be doing much better from his tonsillectomy that he had the day after we returned from vacation (yep that was a bit crazy, but at the same time didn't give any time to worry about how it would go. You had no time to think, just act.) that we can start introducing supplements one at a time.
The day after the appointment we went to Busch Gardens and Brady had had enough. The night after the IV glutathione I noticed a huge jump in motor planning and gross motor skills, but I didn't think that was one of the effects so we will see what the Dr. says about that. He could have been crashing from that or just tired of being out of routine and walking so much. We had a great time in Florida and didn't want to leave on Sunday. We could have stayed a month and it not be long enough. Makes me want to enroll the kids in online school so we could do things like that off season!
On Tuesday, aka one day post T & A, I took Abby back to her Dr, since her stomach is hurting so bad we had to put her back on prevacid. I was thinking of redoing the allergy panel but the Dr. mentioned doing the celiacs stool test. I have heard good things about it's reliability, but wondered out loud what we would do differently than we are already doing. It sounds like more monitoring, more diligence with diet, maybe even a scope if needed. I do want her to be pain free, and also get her energy back, plus she dropped from the 50th percentile for weight to the 10th percentile so we know she is not absorbing the nutrients she should be. I will need to think more about that. We did do a test for h. pylori because that can lead to stomach upset and subsequent acid could be a contributing factor to her lingering and recurrent laryngitis. She also said her T3 being lower than the top third is adrenal related so I am getting Abby on some of the mito supplements, raising her probiotics, adding in some adrenal support, and bumping up her multivitamin. I think I'll also do temps and maybe see about getting her in to a thyroid Dr. if we don't get symptom improvement.
Oh, and did I mention that we heard from Elsa's sleep study that she doesn't have apnea, but rather "periodic limb movement disorder." Otherwise known as restless leg, but apparently it is not just her legs. The recommendation is to check her ferritin level. Low ferritin could also be a factor in a lack of attention so that would be interesting.
I cannot believe that I am, the one who has been a hot allergic mess her whole life, the healthiest member of my family right now. Even the dog is scheduled for a throat culture next week! The Dr. said just treating is not enough, you need to treat, and then culture to make sure he is not a strep carrier.
All of this can be summarized to say that we have a genetic predisposition to not be able to detoxify our own bodies, we accumulate toxins (metals), these derange mineral transport, and the result is thyroid and adrenal stress as well as autoimmunity. The cure for all of these issues is chelation. But what doesn't agree with me is, OK, so you chelate, then what? What stops your body from not starting the cycle all over again? I guess supporting supplements that keep your pathways moving and glutathione up so you detoxify, but then why does recovery equal no supplements or special diets? I am still working on that question. But what it all means is that we are one happy unhealthy family. And I'm not going to be sleeping through the night on the weekends for a very, very long time!
We had Brady's IVIG on a Thursday which he did not tolerate as well since it was in a new satellite location and grandma wasn't there to help get his IV in place stress free. The most important thing is keeping the experience, well his life in general, stress free. There was a last minute cancellation in the sleep clinic so Elsa went for her sleep study on Friday night (we are worried about sleep apnea, recent attention changes, snoring, as well as her constant flopping at night like a fish out of water). The weekend was for packing, shopping, and picking up prescriptions. Then we left for Florida on a Monday (I flew with the kids on my own). After finally getting out of the airport in our brand new rental minivan, drove to Whole Foods where Brady had a DEFCON 1 meltdown since he had been up since 4 AM. Luckily he fell asleep during the drive to the Cocoa Beach condo we rented and immediately had an early dinner (me an airport salad and the kids noodles with Earth Balance as we didn't get spaghetti sauce in the aisle where we abandoned our cart due to the aforementioned nuclear catastrophe) so we could run on the sand and Brady could hurdle jump over the waves. Nothing makes me happier than squealing kids amidst crashing waves. It has been an awful year for everyone and we all needed to laugh and smile again and remember what it's like to enjoy each other's company and not merely exist barking orders at each other.
I took the kids to Kennedy Space Center on Tuesday in the morning and drove the hour trek back to the airport in the nighttime, earning our stripes in the toll booths all along the way. We picked Brian up and the family part of our vacation began. Did I mention that we left our door open every night and could hear the waves crashing and drank our coffee to the same sweet music each morning on the balcony? We just threw the kids on East Coast time and left for Seaworld on Wednesday and Legoland on Thursday.
Then Friday arrived and I woke up early, wondering what we would learn at Brady's appointment. We had been having a great time as a family and luckily finding all kinds of allergen friendly snacks and dining. That made the trip worth it already, but we really had come to have someone else look at all that we were doing and make sure we were on the right track. We were with the Dr. for one hour and fifty minutes, Brady quietly playing on the floor behind us, the girls firmly planted in the waiting room with their homework and books, snacks and bathroom at their ready. Elsa completely drained the battery on my iPhone in that amount of time. The thing I missed most from home? My car charger and back up camera! I could move to Florida tomorrow and be completely content if I had those things.
We went over the history and current treatments. He did say that we could eventually raise the level of his mito supplements, but that all that we were doing to increase speech, eye contact, and energy level, also amps up that fun OCD part of the brain so there was a need for a delicate balance. HBOT is one category he said that can be extremely helpful but at the same time problematic for PANDAS kids. Good to know my gut on this one was dead on. He gave us a list of supplements to introduce with dosages, order, and instructions to start each one and wait at most 3-5 days between new supplements. He said basically we want to support him and monitor results as quickly as we can without leaving him unsupported for longer than absolutely necessary. Once these supplements are on board, we can consider medications if he is still not where we want him to be. I had no idea that even the 24 hour EEG misses 20% of seizures, so one thing to consider is a low dose anti-seizure medication and also an alzheimer's drug called Namenda that has been studied, albeit not specifically approved for use, in autism. We left with studies of each recommended treatment, with more emailed to us later, to help us learn about and make decisions about what treatments to choose.
When you are doing this on your own, you research all the different options but sometimes are just guessing what will be the most effective, in a random order, and don't always move as quickly as when you have someone else's opinion weighing in. You hesitate because you won't want to make a mistake. When you are in a crises, there is less to fuck up so you tend to act more decisively. What is that saying, danger creates opportunity?
I left feeling underwhelmed, because you think: here is this famous Dr. who is going to solve all your problems, see the one thing you are missing, and take care of it (or at least tell you how to take care of it). Then you are reminded that why you sought his help was so that you weren't on your own, weren't missing anything, and getting confirmation that all that you were doing was correct, but just needed a little tweaking should be reassuring. After a day, it was reassuring, and helpful to have confirmation that I wasn't a complete idiot and should have long figured this out by now. It felt good to not be on our own for the very first time.
I kept hearing the voices in my head of so many "professional recovery experts" like the new DAN Dr. up North and other parents who recovered their kids using different means saying to me that this famous Florida Dr. was going to tell us Brady needed IV chelation and HBOT and had PANDAS and mito dysfunction. The truth is he did say it's PANDAS by definition, but whether it reached the level of sydenham's chorea no one could say definitively without a cam kinase test which you can't get anymore. What the SC diagnosis might get is access to PEX, which a PANDAS diagnoses would not get, and a layer of credibility without the controversy. He also didn't want to change anything else that was working, even the chelation method right now. It was also amazing to be forming a partnership with our son's recovery and not have a dictator. I think it helped that I didn't act like one either. I really listened to his opinion and plan to follow it because I have the confidence that he will take it seriously and stick with it when the shit hits the fan.
He also looked me straight in the eye and told me how very fortunate and lucky we were that the developmental pediatrician pulled the throat culture because without it we'd be hanging out there without anything. I know how lucky we are and how amazing it is that Brady has received so much amazing help from really talented people and I say my thanks when my head hits and rises from the pillow each day and night.
He ordered a bunch of blood tests, so we decided to go ahead and do an IV glutathione treatment at the same time. Might as well get some bang for your buck for that poke! The labs included ammonia, lactic acid, carnitine, CK, plasma amino acids, acylcarnitine, strep titers ASO and anti -DNAse(monitoring them periodically to see if they go down will be important), vitamin D, CBC, CMP, cholesterol, ferritin, and folate antibody testing. We are supposed to schedule a follow up call in 4-6 weeks to go over testing and review progress on supplements. The gist is to calm, calm, calm that part of the brain antagonized by the autoimmunity so that he gets back to baseline. Then we can move on to amping up the energy in his cells to improve those aspects that still need support.
I did ask him at the end if he had seen kids like Brady who had regressed more than once, even after getting into the realm of recovery, and yet come back and go on to recover completely. He said that he absolutely had, but that he had also seen them regress again so it was important to work to prevent this but know it was possible. There were no guarantees. He also said something interesting that I don't think he would have said in our originally scheduled hour and a half had I not pressed and gone over in time. He got his questions answered so I wanted mine answered, even if I had to pay extra to get them. He said that in the long run, we may find that if this has never happened to Brady, we certainly wouldn't be looking in depth at all of this other angles such as oxidative stress and mito function, and that because of the support we praovide in these areas, he may end up doing even better than he would have if he had never had this regression.
Moving forward he suggested that we either raise his IVIG dose or do them every 21 days, and that he agreed that after six months we would know whether this intervention was going to stick or if we needed to move on to other treatments. He thinks that since Brady had been out there so long without treatment may mean it takes longer to get rid of the autoantibodies since they have been around longer. He also said something interesting that kids who have an autism diagnosis first and then PANDAS are often tougher to treat. Those kids who were one hundred percent typical are the ones who can have just one IVIG and recover, but kids like Brady often need much, much more. I had already decided to bump up the dose on his next IVIG treatment (not sure about the one after that).
SO we will be trying all these new calming supplements, a higher dose IVIG, and hopefully the new tests and treatments will get us to a baseline that we can propel off of. I think in a week Brady will be doing much better from his tonsillectomy that he had the day after we returned from vacation (yep that was a bit crazy, but at the same time didn't give any time to worry about how it would go. You had no time to think, just act.) that we can start introducing supplements one at a time.
The day after the appointment we went to Busch Gardens and Brady had had enough. The night after the IV glutathione I noticed a huge jump in motor planning and gross motor skills, but I didn't think that was one of the effects so we will see what the Dr. says about that. He could have been crashing from that or just tired of being out of routine and walking so much. We had a great time in Florida and didn't want to leave on Sunday. We could have stayed a month and it not be long enough. Makes me want to enroll the kids in online school so we could do things like that off season!
On Tuesday, aka one day post T & A, I took Abby back to her Dr, since her stomach is hurting so bad we had to put her back on prevacid. I was thinking of redoing the allergy panel but the Dr. mentioned doing the celiacs stool test. I have heard good things about it's reliability, but wondered out loud what we would do differently than we are already doing. It sounds like more monitoring, more diligence with diet, maybe even a scope if needed. I do want her to be pain free, and also get her energy back, plus she dropped from the 50th percentile for weight to the 10th percentile so we know she is not absorbing the nutrients she should be. I will need to think more about that. We did do a test for h. pylori because that can lead to stomach upset and subsequent acid could be a contributing factor to her lingering and recurrent laryngitis. She also said her T3 being lower than the top third is adrenal related so I am getting Abby on some of the mito supplements, raising her probiotics, adding in some adrenal support, and bumping up her multivitamin. I think I'll also do temps and maybe see about getting her in to a thyroid Dr. if we don't get symptom improvement.
Oh, and did I mention that we heard from Elsa's sleep study that she doesn't have apnea, but rather "periodic limb movement disorder." Otherwise known as restless leg, but apparently it is not just her legs. The recommendation is to check her ferritin level. Low ferritin could also be a factor in a lack of attention so that would be interesting.
I cannot believe that I am, the one who has been a hot allergic mess her whole life, the healthiest member of my family right now. Even the dog is scheduled for a throat culture next week! The Dr. said just treating is not enough, you need to treat, and then culture to make sure he is not a strep carrier.
All of this can be summarized to say that we have a genetic predisposition to not be able to detoxify our own bodies, we accumulate toxins (metals), these derange mineral transport, and the result is thyroid and adrenal stress as well as autoimmunity. The cure for all of these issues is chelation. But what doesn't agree with me is, OK, so you chelate, then what? What stops your body from not starting the cycle all over again? I guess supporting supplements that keep your pathways moving and glutathione up so you detoxify, but then why does recovery equal no supplements or special diets? I am still working on that question. But what it all means is that we are one happy unhealthy family. And I'm not going to be sleeping through the night on the weekends for a very, very long time!
Thursday, January 12, 2012
Plane or treatment? Both!
It's 4:30 AM and I'm up, might as well prepare for battle. Think of getting ready for an IVIG treatment like a transcontinental flight, except you can get up and go to the bathroom whenever you want. You pack clothes, new books, games, and toys, just like you would for your child if you were getting ready for a long flight (wait I'm also getting ready for an actual flight. This is going to get confusing!) You load all this up in the car and have to figure out how to lug it all the way while dealing with an apprehensive child. The main difference is that the airport has a bar and the hospital doesn't. I'm just saying.
You have to arrive early before your treatment begins, accounting for traffic or snow or sloppy roads. Once you check in and wait for your name (flight) to be called, you have to get your weight, temperature, blood pressure. It is not a good idea to start up your electronic devices before the IV is in because they will be needing those arms and trying to get a kid to turn off their ds to have a needle stuck in them, um, let's say is not recommended.
You could fire off a few tweets or facebook posts mocking the situation, but I have never done so. I'm not as handsome as Alec Baldwin so I don't think I could get away with it. Plus, what am I going to do, "check in" at the hospital or tweet that here we go again, it's that time of the month to treat my son's autoimmune mediated neurological illness with intravenous immunoglobulin therapy? Gotta be way over the character limit.
Before the line even gets put in, they pre-medicate with ibuprofen, benadryl, and zofran. While this is kicking in they order the IVIG from the pharmacy which takes a while. Maybe a half hour later (time does seem to stop) at the earliest, they put his IV in and start his fluids. Ironically, I think the fact that they so clearly state everything they are doing to him before and while they are doing it, and it is the same each time, this has contributed to his ability to learn multi step storytelling.
The IVIG finally arrives and you take off. They just hang the bag and add it to the line and it drips in, and slowly ramps up with 3-4 levels of increasing rate of infusion via the small digital pump attached to his IV pole. Did I mention plug that bad boy in when you are not moving about the room? The slow pace allows the body to adjust and to measure side effects. Within two hours his eyes are glowing, he is eating his second lunch, and we are playing and talking and spending lots of one on one time together.
You never know how long you will be there, if there are complications or delays. You need to prepare for anything. I often buy at least one new lego set and book or toy to peak his interest when he is just done or he is having a not feeling great moment. This will be our first time doing the infusion at the satellite center and not the main hospital, and also the first time without my mom there. It will be challenging to be on my own, but luckily Brady usually has therapy on Thursday afternoons so she is just coming to the infusion center instead to play with him and give me a break.
At Brady's appointment with his neurologist we found out that she wants him to keep doing monthly IVIGs until he has been on the antibiotics for three months to ensure that he keeps his gains and that he is being treated during the period of time his body could still be producing autoantibodies. So, including this one, it's three more and a total of 6 until we next see her. We will reevaluate at that time whether he is back to baseline all of the time and adding skills, just as a typically developing five-year-old would be doing.
I am ecstatic that she is developing a long term care plan for Brady should the treatment become ineffective. She is not just leaving him out there to see how it goes, she doesn't want to risk regression and the long game of catch up we have been playing for more than half a year. The increasing level of intervention if needed would be: first raise the dose of his IVIG, then do a short burst of steroids, move on to Cellcept, then Rituximab with IVIG combo. She would pursue mitochondrial testing at that time if he is regressing and none of the immunomodulatory therapies are working.
She spent an hour answering my questions and going over the different levels of treatment and testing available as options to us. What she offered above all was hope that she would stick with us to figure this out and get him better. Every question I asked, she not only had an answer for as it related to Brady's case, but had familiarity with, including exchanges with fringe scientists and treatments. She even said that while Dr. Kelley's work is controversial, that all scientists can be seen in this regard until they win the Nobel prize so that while she is not against the testing, she thinks mito is such a challenging disorder to uncover, that we should focus on the autoimmune piece we know for sure he has and move on if that doesn't resolve all of his issues. She also thinks in about a years time the genetics for uncovering the mito dysfunction will be there so we should wait it out, as long as he is no longer regressing. She even went back over his labs to see if he might be a candidate for cerebral folate deficiency, but his numbers were completely in the middle of the range. I have never had a more comprehensive, in-depth intelligent conversation with a traditional medical doctor. I am really thankful and amazed that she is on Brady's team!
We talked a lot about what to call what Brady has, given that he has features of both sydenham's chorea and Hashimoto's. She has another little boy exactly like Brady: no rise in strep titres but abnormal thyroid values, and clearly something autoimmune going on given response to treatment. That is when she described writing up the long term care plan so that it is not just some crazy mom trying to describe what he has without a diagnostic label. The two statements that most struck me in our appointment were:
That's when I realized where we have gone wrong. And I can't argue with Brady getting better, no one can. I don't care what you call it, but treat it. If each patient were treated individually, it would be about the medicine and not the science.
Off to battle...then catch a plane!
You have to arrive early before your treatment begins, accounting for traffic or snow or sloppy roads. Once you check in and wait for your name (flight) to be called, you have to get your weight, temperature, blood pressure. It is not a good idea to start up your electronic devices before the IV is in because they will be needing those arms and trying to get a kid to turn off their ds to have a needle stuck in them, um, let's say is not recommended.
You could fire off a few tweets or facebook posts mocking the situation, but I have never done so. I'm not as handsome as Alec Baldwin so I don't think I could get away with it. Plus, what am I going to do, "check in" at the hospital or tweet that here we go again, it's that time of the month to treat my son's autoimmune mediated neurological illness with intravenous immunoglobulin therapy? Gotta be way over the character limit.
Before the line even gets put in, they pre-medicate with ibuprofen, benadryl, and zofran. While this is kicking in they order the IVIG from the pharmacy which takes a while. Maybe a half hour later (time does seem to stop) at the earliest, they put his IV in and start his fluids. Ironically, I think the fact that they so clearly state everything they are doing to him before and while they are doing it, and it is the same each time, this has contributed to his ability to learn multi step storytelling.
The IVIG finally arrives and you take off. They just hang the bag and add it to the line and it drips in, and slowly ramps up with 3-4 levels of increasing rate of infusion via the small digital pump attached to his IV pole. Did I mention plug that bad boy in when you are not moving about the room? The slow pace allows the body to adjust and to measure side effects. Within two hours his eyes are glowing, he is eating his second lunch, and we are playing and talking and spending lots of one on one time together.
You never know how long you will be there, if there are complications or delays. You need to prepare for anything. I often buy at least one new lego set and book or toy to peak his interest when he is just done or he is having a not feeling great moment. This will be our first time doing the infusion at the satellite center and not the main hospital, and also the first time without my mom there. It will be challenging to be on my own, but luckily Brady usually has therapy on Thursday afternoons so she is just coming to the infusion center instead to play with him and give me a break.
At Brady's appointment with his neurologist we found out that she wants him to keep doing monthly IVIGs until he has been on the antibiotics for three months to ensure that he keeps his gains and that he is being treated during the period of time his body could still be producing autoantibodies. So, including this one, it's three more and a total of 6 until we next see her. We will reevaluate at that time whether he is back to baseline all of the time and adding skills, just as a typically developing five-year-old would be doing.
I am ecstatic that she is developing a long term care plan for Brady should the treatment become ineffective. She is not just leaving him out there to see how it goes, she doesn't want to risk regression and the long game of catch up we have been playing for more than half a year. The increasing level of intervention if needed would be: first raise the dose of his IVIG, then do a short burst of steroids, move on to Cellcept, then Rituximab with IVIG combo. She would pursue mitochondrial testing at that time if he is regressing and none of the immunomodulatory therapies are working.
She spent an hour answering my questions and going over the different levels of treatment and testing available as options to us. What she offered above all was hope that she would stick with us to figure this out and get him better. Every question I asked, she not only had an answer for as it related to Brady's case, but had familiarity with, including exchanges with fringe scientists and treatments. She even said that while Dr. Kelley's work is controversial, that all scientists can be seen in this regard until they win the Nobel prize so that while she is not against the testing, she thinks mito is such a challenging disorder to uncover, that we should focus on the autoimmune piece we know for sure he has and move on if that doesn't resolve all of his issues. She also thinks in about a years time the genetics for uncovering the mito dysfunction will be there so we should wait it out, as long as he is no longer regressing. She even went back over his labs to see if he might be a candidate for cerebral folate deficiency, but his numbers were completely in the middle of the range. I have never had a more comprehensive, in-depth intelligent conversation with a traditional medical doctor. I am really thankful and amazed that she is on Brady's team!
We talked a lot about what to call what Brady has, given that he has features of both sydenham's chorea and Hashimoto's. She has another little boy exactly like Brady: no rise in strep titres but abnormal thyroid values, and clearly something autoimmune going on given response to treatment. That is when she described writing up the long term care plan so that it is not just some crazy mom trying to describe what he has without a diagnostic label. The two statements that most struck me in our appointment were:
What we don't know is if we are dealing with something that I am not sure anyone is even looking at or studying: an immunological mitochondrial dysfunction
I am a medical doctor, I don't work in a lab. Scientists can argue over here about what to call things (PANDAS, etc.), the feasibility of etiologies and viability of treatments. But when I see a patient in clinic who has gotten better from a treatment I have prescribed, I can't argue with that. No one can. That's medicine, not science.
That's when I realized where we have gone wrong. And I can't argue with Brady getting better, no one can. I don't care what you call it, but treat it. If each patient were treated individually, it would be about the medicine and not the science.
Off to battle...then catch a plane!
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