Holy freakin' hell, my head is spinning. We had our first appt. yesterday with the DAN/biomed/homeopath/Functional Medicine dr. I'm not sure how I feel, really. First things first, she wants us to start the dreaded GFCF diet, damn it (gluten-free, casein-free... essentially no wheat and gluten from some other grains, and no dairy). Not that I didn't know this was coming... I did. It's usually a prerequisite. I was HOPING that maybe she would take a look at how the food sensitivities testing came back and go from there, but... she wants us to start by eliminating gluten, 2 weeks later dairy, and 2 weeks after that soy. Shoot me. I know I HAVE to do this. I HAVE to give ALL of this 100%. In my mind, I am committing to 6 months of giving biomed my ALL. I need to do this for my daughter. It's just gonna suck. Well, not if it works! But my fears are... ha! Where to start with that? I would say first and foremost, my daughter's reactions to this elimination diet. Though I am worried about home, it will be easier at home, because we will do it as a family, and it just won't be available. What I am worried about is school, summer camp, parties, etc. I learned last week that an anxious child does NOT like to be different. I had no idea that was part of the reason for her obsession with being like certain other children. To say she is going to lose her shit when she can't have the same snack as the other children, or the same cupcake at a party, or eat the same food at Gaga's house that her cousin is having... well, that's an understatement. Lord help us all. But I don't see any way around this. My next fear is getting her to take the supplements that she needs to take. My child is not an easy-going, go with the flow, do whatever Mommy says kind of kid, to say the least. And I guess lastly, I am concerned with spending this BOAT-LOAD of cash on all of this stuff (we dropped $400 yesterday on an initial visit and 2 supplements) and it not working. Again, no way around it in my mind. It's worth a try, right? It's my daughter's LIFE we're talking about. I HAVE to try... for her. I owe it to her to do EVERYTHING I can.
The dr. was nice enough... very sweet with my daughter. I sat and talked with her the first hour, and my husband brought our daughter the last 15 min. I will say that the dr. seemed VERY sure of herself. Not arrogant, necessarily, but just really very sure of herself. Which is good... but I guess I just don't want any false hope. From all the research I have done, it seems roughly 20-30% of children are actually helped by this kind of treatment. My daughter's counselor feels it is probably closer to 50%, for various reasons, mostly because people have a hard time following the VERY strict diet, (i.e. any little dietary infraction makes a BIG difference) and that often people don't give it enough time to work. So I have to keep those things in mind.
The tests the dr. will be running to start with are: a complete digestive stool analysis, urine caso morphine through Great Plains, hair analysis, and this blood work to start: Candio CRP, CBC w diff, CMP, Lipid panel (fasting), Magnesium (RBC), TSH, T3free, T4, Urine R & M, C & S, Zinc (RBC), 25 (OH) D. 2 weeks later, she will do a Triad from Meta Metrix or Great Plains. I'm not sure what a Triad is or what it is testing for... I do have some follow-up questions for sure that I need to call about later today. We already are doing EFA (essential fatty acids- she is taking fish oil) supplements, but she wants us to take 4 a day now. We are also already doing digestive enzymes and probiotics. We just have to stop these 5 days before the Nutri Eval test... though I'm not sure what/when that test it.
I picked up Dr. Kenneth Bock's book and just started reading it. Hopefully it will help me to understand all of this stuff. It is one that keeps being recommended by various people. The dr. referenced it a few times yesterday, and seems to be interested in following the same protocol for the most part.
Say a little prayer for us as we begin. I'm scared... nervous... anxious... and yes, even a little hopeful. :)
I was feeling pretty pissed off yesterday. Pissed that we are the ones that have to do all this stuff. I mean... 99% of all of the people we know don't have to do any of this shit and their kids are just fine, you know? It just freakin' pisses me off sometimes. But it is what it is. We have 2 beautiful children who need us to do everything we can for them to have great lives, so we are trying to do just that. It just annoys me sometimes. Again, refer to my first blog post to hear how I feel about being blessed, and knowing how good I have it, etc. I get it. Just venting. After all, this blog IS called HOW THIS MOMMY REALLY FEELS. That is how I really feel. And I do have a very dear friend whose little boy is literally allergic to EVERYTHING. He simply cannot eat. I think his two safe foods are baby food applesauce and Dum Dum lollipops. He has to be fed through a tube in his stomach. So wah wah me, I'm gonna whine and complain because I have to remove a few things from my daughter's diet? I think we'll survive. It's just gonna suck until we get used to it. Time to put on the big girl panties and get this done!!!!
A Mother's Quest to Help her Daughter... and to be Completely Honest Along the Way
Friday, June 29, 2012
Sunday, June 24, 2012
The beginning
I'm not sure where to start... from now or from the beginning? I'll start with how I really feel... today. Today I am feeling sad, frustrated, hopeless, exhausted, emotional, out-of-patience, angry... you name it. I have been wanting to start this blog for a long time now. I have another blog that I haven't posted to in a year, which I guess is when things REALLY started to get tough and take its toll on me... when I really started to feel differently. That blog is about parenting... but the nice, sweet, heart-warming stuff that I feel comfortable sharing with everyone. This one... not so much. I don't know yet who I will share this with... or if I will share it with anyone... I don't know if I could ever be so honest as to how I really feel.
I can't say for sure when we knew our journey as parents was not going to be "typical." Goodness- what the hell is "typical," anyway, when it comes to parenting? Nothing, I guess... but I have to say, of all of our friends and family... there is maybe only one other person who has any inkling what it's like parenting a child with special needs. It still sometimes feels weird to say "special needs" when discussing my daughter, as I've always associated that term with physical handicaps or more severe issues such as Down Syndrome, serious health problems, severe autism, and the like. But what I am learning is that my daughter DOES have special needs, and I AM a parent of a child with special needs. You may say that every child has special needs in one way or another, and I suppose you may be right. I do agree with that statement... but the truth is, my daughter is anything but typical. I have seen people practically sit on their butts and watch their child be able to raise themselves. OK, definitely an overstatement, but you know what I mean, and if you don't... well, maybe you're one of the lucky ones (I always think of this passage from Mary Sheedy Kurcinka's epilogue to Raising Your Spirited Child... "The Rose in My Garden." "Spirited kids are like the roses in my garden. They need more attention. Throw a little water on the other flowers and they grow. Not the rose- it needs special treatment. It has to be pruned and guided in its growth"). Now, I KNOW that raising even a perfectly well-behaved, easy, issue-less child is FAR from easy. I do know how hard parents of these children work. This shit is hard, no matter how you slice it. But there certainly are differences, and if you can't think of what these differences may be, let me spell them out for you. Can you go to church as a family? Can you go to restaurants? Can you take your child shopping? Can you go to family outings or friends' houses or birthday parties or events without watching your child every second or scoping the place out like a Secret Service agent to see what she can possibly get into or to where she can escape? Can you take your child to the movies? Can you go on vacation, to the zoo, to the museum... and actually enjoy yourself? Are you always afraid that your child's off-the-charts impulsive behavior is going to cause her or someone else serious harm? Does your heart hurt when you think of your real fears for her future if this doesn't get better? Well... these are just a few of the "typical" things we can't do, or have a VERY hard time doing... and these are some of our very real fears that we live with every day. Let me just say it before you do... you may be thinking "be thankful for the child you have," or "God has a plan," etc... believe me, I know this... I do. I prayed hard for this baby girl, and we had a tougher time than many conceiving her. I personally know someone who lost a young child, and I'm certain she would give anything to have him with her today and be struggling with issues such as these. I know there are sweet babies out there fighting for their lives. I get this, I do. And I KNOW how lucky and blessed we truly are. I love both of my children more than life itself, and would honestly walk to the ends of the earth for them... I think most mothers feel this way. These two children have brought me more joy than I could have possibly imagined, and my daughter with special needs truly has more life, love, and joy in her heart than I have ever seen in another. But none of this makes our day-to-day life any easier, or makes me feel much better at the moment. This is my blog, my story... I need a way to vent and just get this all out. My hope and prayer is that by chronicling this, I can someday show my daughter how far she's come, how hard she's worked, and how much her father and I loved her along the way... even on the tough days.
About 4 months ago, we finally received some possible answers as to what may be going on with our sweet girl. She was given diagnoses of ADHD- combined type, (meaning both inattentive and hyperactive) Anxiety Disorder- both Generalized and Separation, and Sensory Processing Disorder. So a little bit of what some would call "Alphabet Soup..." ADHD, GAD, SPD, blah blah blah. It is believed at this point that the main underlying issue is her anxiety, as well as something called "constitutionally poor self-regulation" across all domains- attentional, sensory, emotional, and behavioral. This apparently manifests as emotional dysregulation, an increased anxiety response, exaggerated reactivity, a need for increased sensory stimulation, behavioral dysregulation, and physiological dysregulation (e.g. difficulties regulating appetite and sleep). It is stated in her evaluation that "While self-regulation difficulties account for all of her difficulties, there is no single DSM-IV diagnosis that adequately explains her particular constellation of symptoms. Therefore, her broad array of symptoms and clinical needs are best described by the following mental health diagnoses," (ADHD and Anxiety Disorder). Sensory Processing Disorder was diagnosed by an Occupational Therapist soon after. I am still learning about this disorder, but my daughter is what you would call a "sensory-seeker," meaning she is always seeking more sensory stimulation. She does also have some avoidant behaviors and some sensory sensitivities, for sure, particularly to sound and temperature. What we are learning is that for some reason, she has very limited, if any, coping skills. Things that were supposed to have developed naturally just have not developed. At this point, she is going to require a lot of support and intervention to gain the skills she needs. Truly, this is all just beginning for us, as it has taken this long to get help from the experts in this area. It's called BHRS, (Behavioral Health Rehabilitation Services) or Wraparound. You can only get these services if you qualify through the county/state... and you have to apply for Medical Assistance in order to qualify. My daughter does based on a loophole because she has special needs, but this has been a process of paperwork, red tape, evaluations, meetings, and the like. Finally, 4 months after her diagnoses, she is just now starting to receive services as of last week. We have also been doing weekly OT for a couple of months, and have been in weekly outpatient counseling for well over 6 months. The Wraparound services she will be receiving are mostly TSS (Therapeutic Support Staff) at 5 hours/wk and BSC (Behavioral Specialist Consultant) at 3 hr/wk (The BSC hours mostly are not face-to-face, but include paperwork, consulting with other team members, etc). The county did not approve the amount of hours recommended by the psychologist, nor did they approve her for a 4-month plan of care... they are giving her 60 days and she will need ANOTHER eval and we will need to have another meeting with the county, and hopefully the BSC and Wraparound agency we are working with can prove that she needs these hours and these are in fact going to help her. The way we are looking at all of this is Wraparound will (hopefully) help us with the behavioral issues, OT will help with the sensory issues, and outpatient counseling will specifically be addressing the anxiety.
It can be very difficult for a parent to feel pretty helpless. My husband and I are both well-educated individuals who come from good families... sometimes I feel like we should know how to do this... but we just don't. Some days I feel like we're doing pretty well, then something happens that makes me feel like I completely suck at this. And what sucks about THAT is that this is the one thing I always wanted to do... the one thing I truly thought I would be great at, and I'm sucking at it. So that's a pretty shitty feeling. But then I tell myself we're getting all the help and support that we can, and seeking out all of the resources to TELL us what to do with our daughter's unique set of diagnoses. Recently we have decided to try biomedical intervention... we have our first appointment coming up this week. I had briefly tossed around the idea of it before, but we were in such a desperate place, and after a long talk with the pediatrician who has known our daughter since birth, as well as some other team members, we had decided to try some stimulant meds to help with her ADHD symptoms. They were HORRIBLE, to say the least. It is obvious that due to her anxiety disorder, as well as the fact that she is generally a pretty emotional girl, that she will not be able to tolerate stimulants. Her reactions to low doses of both Adderall and Methylin (generic Ritalin) were similar- Adderall was worse- CRAZY off-the-charts anxiety and emotional reactions... I would take the hyperactivity and impulsivity ANY day after seeing what those drugs did to my daughter. It was pretty gut-wrenching to watch. After a lot of research on my own, chatting with a friend who does biomed for her son, and reaching out to one of my closest girlfriends who is starting to do some biomed herself, (she is a chiropractor) we have decided to give it our best shot. It essentially involves holistic treatment of the underlying issues in the body that may be causing our daughter's symptoms. After this first appointment, my assumption is she will undergo various tests- bloodwork, stool samples, etc. to look for food allergies/sensitivities, vitamin and mineral deficiencies, yeast overgrowth, etc. You then do an elimination diet and take supplements based on the findings and advice of the doctor. This specific doctor is an ND and MD (naturopathic doctor and conventional medical doctor) and considered to be a DAN doctor, (Defeat Autism Now) who has taken the DAN training and understands the biomedical approach. My daughter is not diagnosed with autism, though she certainly has some traits, and there was a time that more than one professional in our lives thought she probably was on the spectrum somewhere. This was ruled out, however there are many people that believe, and many parents that have reported success, with biomedical treatment and ADHD, not to mention that there are some doctors who actually feel that ADHD is in fact a milder form of autism. So... we shall see. I am VERY nervous about all of it. I believe in it, but I also know it typically will help a relatively small percentage- about 30%, I believe. Our daughter's counselor feels it is probably 50/50, as he said that the diets can be extremely difficult to follow, and even the smallest dietary infraction can have a negative effect, hence the parents giving up, thinking it's not working. It is also my understanding that it can take up to 6 months to see positive effects, and that's another reason that people will give up, again thinking it's not working. My goal is to give it our all, 100%, for 6 months and see what happens. I am most afraid of our daughter's reactions when she can't have a certain food that she wants/likes, and especially when she can't have what the other kids are having at school, parties, etc. At 4 years old, she is already starting to realize that she does things differently than other kids- i.e. "Well so-and-so doesn't have to take pills with dinner (digestive enzymes)," and "so-and-so doesn't need sleepy medicine (melatonin)," and "so-and-so doesn't go to therapy..." you get my drift. I learned that anxious kids do NOT like to be different, and I had no idea that was a part of her obsession with being like certain other children. She is not an easy-going kid who will just take what I say without question, or without a big fight... so this is going to be TOUGH, and I know that. I just don't see any way around it. It's all out-of-pocket, and it's ALOT of money... but I don't see how I can't at least rule this out. Wouldn't that be something, if that's what all of this was about?!?!? I HAVE to try, for my daughter. For our family. I am a bit skeptical that this is going to be some magical cure for everything, but maybe with all of the other interventions and if my husband and I can learn and stick to how we're supposed to be parenting her properly... well, maybe, just maybe this will all work together. This is my hope. Wish us luck!
I can't say for sure when we knew our journey as parents was not going to be "typical." Goodness- what the hell is "typical," anyway, when it comes to parenting? Nothing, I guess... but I have to say, of all of our friends and family... there is maybe only one other person who has any inkling what it's like parenting a child with special needs. It still sometimes feels weird to say "special needs" when discussing my daughter, as I've always associated that term with physical handicaps or more severe issues such as Down Syndrome, serious health problems, severe autism, and the like. But what I am learning is that my daughter DOES have special needs, and I AM a parent of a child with special needs. You may say that every child has special needs in one way or another, and I suppose you may be right. I do agree with that statement... but the truth is, my daughter is anything but typical. I have seen people practically sit on their butts and watch their child be able to raise themselves. OK, definitely an overstatement, but you know what I mean, and if you don't... well, maybe you're one of the lucky ones (I always think of this passage from Mary Sheedy Kurcinka's epilogue to Raising Your Spirited Child... "The Rose in My Garden." "Spirited kids are like the roses in my garden. They need more attention. Throw a little water on the other flowers and they grow. Not the rose- it needs special treatment. It has to be pruned and guided in its growth"). Now, I KNOW that raising even a perfectly well-behaved, easy, issue-less child is FAR from easy. I do know how hard parents of these children work. This shit is hard, no matter how you slice it. But there certainly are differences, and if you can't think of what these differences may be, let me spell them out for you. Can you go to church as a family? Can you go to restaurants? Can you take your child shopping? Can you go to family outings or friends' houses or birthday parties or events without watching your child every second or scoping the place out like a Secret Service agent to see what she can possibly get into or to where she can escape? Can you take your child to the movies? Can you go on vacation, to the zoo, to the museum... and actually enjoy yourself? Are you always afraid that your child's off-the-charts impulsive behavior is going to cause her or someone else serious harm? Does your heart hurt when you think of your real fears for her future if this doesn't get better? Well... these are just a few of the "typical" things we can't do, or have a VERY hard time doing... and these are some of our very real fears that we live with every day. Let me just say it before you do... you may be thinking "be thankful for the child you have," or "God has a plan," etc... believe me, I know this... I do. I prayed hard for this baby girl, and we had a tougher time than many conceiving her. I personally know someone who lost a young child, and I'm certain she would give anything to have him with her today and be struggling with issues such as these. I know there are sweet babies out there fighting for their lives. I get this, I do. And I KNOW how lucky and blessed we truly are. I love both of my children more than life itself, and would honestly walk to the ends of the earth for them... I think most mothers feel this way. These two children have brought me more joy than I could have possibly imagined, and my daughter with special needs truly has more life, love, and joy in her heart than I have ever seen in another. But none of this makes our day-to-day life any easier, or makes me feel much better at the moment. This is my blog, my story... I need a way to vent and just get this all out. My hope and prayer is that by chronicling this, I can someday show my daughter how far she's come, how hard she's worked, and how much her father and I loved her along the way... even on the tough days.
About 4 months ago, we finally received some possible answers as to what may be going on with our sweet girl. She was given diagnoses of ADHD- combined type, (meaning both inattentive and hyperactive) Anxiety Disorder- both Generalized and Separation, and Sensory Processing Disorder. So a little bit of what some would call "Alphabet Soup..." ADHD, GAD, SPD, blah blah blah. It is believed at this point that the main underlying issue is her anxiety, as well as something called "constitutionally poor self-regulation" across all domains- attentional, sensory, emotional, and behavioral. This apparently manifests as emotional dysregulation, an increased anxiety response, exaggerated reactivity, a need for increased sensory stimulation, behavioral dysregulation, and physiological dysregulation (e.g. difficulties regulating appetite and sleep). It is stated in her evaluation that "While self-regulation difficulties account for all of her difficulties, there is no single DSM-IV diagnosis that adequately explains her particular constellation of symptoms. Therefore, her broad array of symptoms and clinical needs are best described by the following mental health diagnoses," (ADHD and Anxiety Disorder). Sensory Processing Disorder was diagnosed by an Occupational Therapist soon after. I am still learning about this disorder, but my daughter is what you would call a "sensory-seeker," meaning she is always seeking more sensory stimulation. She does also have some avoidant behaviors and some sensory sensitivities, for sure, particularly to sound and temperature. What we are learning is that for some reason, she has very limited, if any, coping skills. Things that were supposed to have developed naturally just have not developed. At this point, she is going to require a lot of support and intervention to gain the skills she needs. Truly, this is all just beginning for us, as it has taken this long to get help from the experts in this area. It's called BHRS, (Behavioral Health Rehabilitation Services) or Wraparound. You can only get these services if you qualify through the county/state... and you have to apply for Medical Assistance in order to qualify. My daughter does based on a loophole because she has special needs, but this has been a process of paperwork, red tape, evaluations, meetings, and the like. Finally, 4 months after her diagnoses, she is just now starting to receive services as of last week. We have also been doing weekly OT for a couple of months, and have been in weekly outpatient counseling for well over 6 months. The Wraparound services she will be receiving are mostly TSS (Therapeutic Support Staff) at 5 hours/wk and BSC (Behavioral Specialist Consultant) at 3 hr/wk (The BSC hours mostly are not face-to-face, but include paperwork, consulting with other team members, etc). The county did not approve the amount of hours recommended by the psychologist, nor did they approve her for a 4-month plan of care... they are giving her 60 days and she will need ANOTHER eval and we will need to have another meeting with the county, and hopefully the BSC and Wraparound agency we are working with can prove that she needs these hours and these are in fact going to help her. The way we are looking at all of this is Wraparound will (hopefully) help us with the behavioral issues, OT will help with the sensory issues, and outpatient counseling will specifically be addressing the anxiety.
It can be very difficult for a parent to feel pretty helpless. My husband and I are both well-educated individuals who come from good families... sometimes I feel like we should know how to do this... but we just don't. Some days I feel like we're doing pretty well, then something happens that makes me feel like I completely suck at this. And what sucks about THAT is that this is the one thing I always wanted to do... the one thing I truly thought I would be great at, and I'm sucking at it. So that's a pretty shitty feeling. But then I tell myself we're getting all the help and support that we can, and seeking out all of the resources to TELL us what to do with our daughter's unique set of diagnoses. Recently we have decided to try biomedical intervention... we have our first appointment coming up this week. I had briefly tossed around the idea of it before, but we were in such a desperate place, and after a long talk with the pediatrician who has known our daughter since birth, as well as some other team members, we had decided to try some stimulant meds to help with her ADHD symptoms. They were HORRIBLE, to say the least. It is obvious that due to her anxiety disorder, as well as the fact that she is generally a pretty emotional girl, that she will not be able to tolerate stimulants. Her reactions to low doses of both Adderall and Methylin (generic Ritalin) were similar- Adderall was worse- CRAZY off-the-charts anxiety and emotional reactions... I would take the hyperactivity and impulsivity ANY day after seeing what those drugs did to my daughter. It was pretty gut-wrenching to watch. After a lot of research on my own, chatting with a friend who does biomed for her son, and reaching out to one of my closest girlfriends who is starting to do some biomed herself, (she is a chiropractor) we have decided to give it our best shot. It essentially involves holistic treatment of the underlying issues in the body that may be causing our daughter's symptoms. After this first appointment, my assumption is she will undergo various tests- bloodwork, stool samples, etc. to look for food allergies/sensitivities, vitamin and mineral deficiencies, yeast overgrowth, etc. You then do an elimination diet and take supplements based on the findings and advice of the doctor. This specific doctor is an ND and MD (naturopathic doctor and conventional medical doctor) and considered to be a DAN doctor, (Defeat Autism Now) who has taken the DAN training and understands the biomedical approach. My daughter is not diagnosed with autism, though she certainly has some traits, and there was a time that more than one professional in our lives thought she probably was on the spectrum somewhere. This was ruled out, however there are many people that believe, and many parents that have reported success, with biomedical treatment and ADHD, not to mention that there are some doctors who actually feel that ADHD is in fact a milder form of autism. So... we shall see. I am VERY nervous about all of it. I believe in it, but I also know it typically will help a relatively small percentage- about 30%, I believe. Our daughter's counselor feels it is probably 50/50, as he said that the diets can be extremely difficult to follow, and even the smallest dietary infraction can have a negative effect, hence the parents giving up, thinking it's not working. It is also my understanding that it can take up to 6 months to see positive effects, and that's another reason that people will give up, again thinking it's not working. My goal is to give it our all, 100%, for 6 months and see what happens. I am most afraid of our daughter's reactions when she can't have a certain food that she wants/likes, and especially when she can't have what the other kids are having at school, parties, etc. At 4 years old, she is already starting to realize that she does things differently than other kids- i.e. "Well so-and-so doesn't have to take pills with dinner (digestive enzymes)," and "so-and-so doesn't need sleepy medicine (melatonin)," and "so-and-so doesn't go to therapy..." you get my drift. I learned that anxious kids do NOT like to be different, and I had no idea that was a part of her obsession with being like certain other children. She is not an easy-going kid who will just take what I say without question, or without a big fight... so this is going to be TOUGH, and I know that. I just don't see any way around it. It's all out-of-pocket, and it's ALOT of money... but I don't see how I can't at least rule this out. Wouldn't that be something, if that's what all of this was about?!?!? I HAVE to try, for my daughter. For our family. I am a bit skeptical that this is going to be some magical cure for everything, but maybe with all of the other interventions and if my husband and I can learn and stick to how we're supposed to be parenting her properly... well, maybe, just maybe this will all work together. This is my hope. Wish us luck!
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