Mother's Day Self Portraits
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| Butterfly kisses from Mom |
Saturday, May 23, 2015
Friday, May 22, 2015
The Scariest and Most Dangerous PANDAS Symptom
As most of us with a child in our lives who has PANDAS or PANS, we have learned that each bout, or exacerbation, can bring different behaviors or symptoms. My daughter would always experience anxiety, however, it would manifest in varies ways each time. Like a shapeshifter, PANDAS would change her behavior and thoughts, but I would still be able to see her true self deep inside. After the first year we became familiar with how these changes would take place and plan ahead for the ones to come.
We are four years into our PANDAS fight and my daughter is now 12 years old. Over the last year her symptoms have improved, narrowing down to a mild level of OCD to where it was not interfering with her everyday life, and her anti-strep titers were declining. We were lucky enough to have several months where things were pretty steady, then she tested positive for strep throat. I watched her behavior closely, expecting it to change and the increase in anxiety to hit, only wondering what form it would morph into this time.
She did begin to change, only this time there was in increase in her OCD without the added anxieties. There was moodiness, but lets face it, we are talking about a hormonal adolescent in middle school...who wouldn't be moody? Nothing seemed abrupt - how PANDAS is known to take over. What I did not think to do was consider the various other neuropsychiatric symptoms known to be associated with this disorder. Below is the list from the National Institute of Mental Health... Do you see the scariest and most dangerous one on the list? This was the one I missed. I was looking (and waiting) for her "normal" PANDAS to show up. There is nothing normal or fair about PANDAS. Please, please, please don't make my mistake.
With respect for my daughter I promised to not share the details of her situation, and I hope some day she will find the courage to share her story with the world, however, I must share the severity of this disorder. No child should lose their life to suicide, and no child should lose their life to PANDAS. We must spread awareness. Please share this information, especially with those that you know who love an adolescent or teen with PANDAS. They are more likely to have the means if they have the thoughts. We all know these thoughts are not in their control, they are neuropsychiatric, so we have to work together to help them survive through it.
We are four years into our PANDAS fight and my daughter is now 12 years old. Over the last year her symptoms have improved, narrowing down to a mild level of OCD to where it was not interfering with her everyday life, and her anti-strep titers were declining. We were lucky enough to have several months where things were pretty steady, then she tested positive for strep throat. I watched her behavior closely, expecting it to change and the increase in anxiety to hit, only wondering what form it would morph into this time.
She did begin to change, only this time there was in increase in her OCD without the added anxieties. There was moodiness, but lets face it, we are talking about a hormonal adolescent in middle school...who wouldn't be moody? Nothing seemed abrupt - how PANDAS is known to take over. What I did not think to do was consider the various other neuropsychiatric symptoms known to be associated with this disorder. Below is the list from the National Institute of Mental Health... Do you see the scariest and most dangerous one on the list? This was the one I missed. I was looking (and waiting) for her "normal" PANDAS to show up. There is nothing normal or fair about PANDAS. Please, please, please don't make my mistake.
With respect for my daughter I promised to not share the details of her situation, and I hope some day she will find the courage to share her story with the world, however, I must share the severity of this disorder. No child should lose their life to suicide, and no child should lose their life to PANDAS. We must spread awareness. Please share this information, especially with those that you know who love an adolescent or teen with PANDAS. They are more likely to have the means if they have the thoughts. We all know these thoughts are not in their control, they are neuropsychiatric, so we have to work together to help them survive through it.
a. Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)
b. Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look"
c. Motoric hyperactivity, abnormal movements, and a sense of restlessness
d. Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations
e. Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas
f. Increased urinary frequency and a new onset of bed-wetting
g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide.
h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms)
Friday, April 24, 2015
Dora's View (Stacation cont'd)
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| Me, trying to block the sun from my shot. |
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| Looking... |
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| UP! |
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Where I see trash she sees graffiti... |
Wednesday, April 8, 2015
Staycation
I was fortunate enough to be able to take some time off work while my daughter was on spring break this past week. We don't always do well one on one these days, as many conversations turn into arguments and our interests are not exactly aligned, but I am pleased to share that overall we had a mutually fun time. One of the things we did together was explore our own city. Normally we avoid going downtown because of the traffic and chaos, so my daughter really had not seen much of it before - except for when we would go to look at the winter light displays, and even that was at night. We each brought our own camera and walked around the busiest streets in the city on Easter Sunday afternoon, which, as I had hoped, ended up being one of the calmest days of the year. It was perfect for us. After we came home and looked back through our pictures and compared them, it was beyond interesting how different each of us sees the world. Here are a few of mine, and I am going to see if she will allow me to post some of hers... so keep watch for a follow up.
Tuesday, March 31, 2015
Getting My Daughter to Read (cont'd)
Following up from a previous post, How Can I Get My Daughter to Read?, I wanted to announce that we have made some progress in regards to Dora's story. First of all, she is on board with me creating a fictional character pulled from my ideas and observations of her...as long as she ends up being the most written about. :)
I know there are many directions I can take the novel, since she has already been exposed to an array of topics in her twelve years. Some of the issues she has faced most of us will never have to deal with, like having an alcoholic (biological) father and a chronically ill mother, or the fact that she has PANDAS and has experienced the mental torment of OCD and incessant anxiety. However I also think the difference in what she witnesses on a daily basis in school compared to what I did would be a wonderful story to tell as well.
When choosing where to buy a home it was important to my husband and I that we be in a school district and neighborhood where there would be a diverse group of kids. I grew up sheltered by the walls of a parochial school in a small town, leaving the number of non-Caucasian students limited to what I could count on one hand, so I promised myself that when I had children they would have a different experience. My daughter has grown up among a fairly even mix of Caucasian, Hispanic, and African American - including a concentration of Somali American students, whose families began migrating to our area of Ohio approximately 13 years ago.
I am surprised by how things are changing among these students as they get older, especially once they hit middle school. In the beginning...kindergarten, first grade, pretty much all of elementary school, everyone played with everyone. The kids did not segregate themselves by race. There was still a popular crowd and there were loners, but the cliques would be mixed. Through the 6th and 7th grade I have watched this change drastically as each race seems to pull together by a strong but invisible force.
I understand how this may happen as a way to make life easier. Hanging out with other people who follow the same diet if you are Muslim, or being friends with someone else whose parents only speak Spanish. What my daughter doesn't understand, and I am at a loss when trying to find an explanation for her, is why and when do they begin to bully each other? She witnesses multiple fights a week. Fist fights. And the surprising thing (to me anyway) is that they are mostly girls. When we would have girls 'fight' in our school it was more like one clique not talking to another for a couple days and then all would be right in the world. These girls get suspended for days at a time only to return with even more anger.
One thing I do know is true, and this is what I try and explain to her, is that there are plenty of adults that do not take the time to learn about and therefore understand and respect other cultures. I know this because I work with adults and see this regularly and have even at times seen adults be bullied - specifically those of the Somali American population - which is infuriating....and then I think "Our kids probably go to school together".
So back to the novel (I know this post is getting a little long winded but this is a hot topic for me) it will be set in high school, probably sophomore year. One girl with mental health issues (OCD/PANDAS) who obsesses about doing the right thing (cannot tell lies, etc.), befriends another girl who is being bullied because she is Somali American, but has to approach her in secret and keep their friendship secret. If the rest of the school knew they would both be outcast from the groups of friends they each had already. And of course together (in secret) they do wonderfully heroic things to keep bullies out of their lives - and others they know to be victims. I want to concentrate on showing the Somolian culture to the reader, along with the struggles that OCD brings to a young girl's life.
I know there are many directions I can take the novel, since she has already been exposed to an array of topics in her twelve years. Some of the issues she has faced most of us will never have to deal with, like having an alcoholic (biological) father and a chronically ill mother, or the fact that she has PANDAS and has experienced the mental torment of OCD and incessant anxiety. However I also think the difference in what she witnesses on a daily basis in school compared to what I did would be a wonderful story to tell as well.
When choosing where to buy a home it was important to my husband and I that we be in a school district and neighborhood where there would be a diverse group of kids. I grew up sheltered by the walls of a parochial school in a small town, leaving the number of non-Caucasian students limited to what I could count on one hand, so I promised myself that when I had children they would have a different experience. My daughter has grown up among a fairly even mix of Caucasian, Hispanic, and African American - including a concentration of Somali American students, whose families began migrating to our area of Ohio approximately 13 years ago.
I am surprised by how things are changing among these students as they get older, especially once they hit middle school. In the beginning...kindergarten, first grade, pretty much all of elementary school, everyone played with everyone. The kids did not segregate themselves by race. There was still a popular crowd and there were loners, but the cliques would be mixed. Through the 6th and 7th grade I have watched this change drastically as each race seems to pull together by a strong but invisible force.
I understand how this may happen as a way to make life easier. Hanging out with other people who follow the same diet if you are Muslim, or being friends with someone else whose parents only speak Spanish. What my daughter doesn't understand, and I am at a loss when trying to find an explanation for her, is why and when do they begin to bully each other? She witnesses multiple fights a week. Fist fights. And the surprising thing (to me anyway) is that they are mostly girls. When we would have girls 'fight' in our school it was more like one clique not talking to another for a couple days and then all would be right in the world. These girls get suspended for days at a time only to return with even more anger.
One thing I do know is true, and this is what I try and explain to her, is that there are plenty of adults that do not take the time to learn about and therefore understand and respect other cultures. I know this because I work with adults and see this regularly and have even at times seen adults be bullied - specifically those of the Somali American population - which is infuriating....and then I think "Our kids probably go to school together".
So back to the novel (I know this post is getting a little long winded but this is a hot topic for me) it will be set in high school, probably sophomore year. One girl with mental health issues (OCD/PANDAS) who obsesses about doing the right thing (cannot tell lies, etc.), befriends another girl who is being bullied because she is Somali American, but has to approach her in secret and keep their friendship secret. If the rest of the school knew they would both be outcast from the groups of friends they each had already. And of course together (in secret) they do wonderfully heroic things to keep bullies out of their lives - and others they know to be victims. I want to concentrate on showing the Somolian culture to the reader, along with the struggles that OCD brings to a young girl's life.
Tuesday, February 24, 2015
Mothers and Fathers
As my husband and I approach the teenage years with our children the more we are starting to hear things like, "I wish I had different parents!" and, "Why can't you be more like me?" or, "If you weren't my parents I don't think I would ever have anything to say to you as regular people."...ooook. I know this will only get worse, and if it will be anything like how I was as a teen it will be MUCH worse. Looking back I can see that (at times) I was a pure brat. My hope is, and I do believe this is normal for a lot of people, that when they reach their twenties and begin living life on their own perspectives will change and physically (brain growth, hormones, etc.) things will begin to even out and altogether turning our children into well rounded young adults. This is when they will start to appreciate us again, as I did my parents.
I found this song by Broods, Mother and Father, exemplifying exactly this. I think it is beautifully written and performed. It gives me a sense of hope and forgiveness.
I found this song by Broods, Mother and Father, exemplifying exactly this. I think it is beautifully written and performed. It gives me a sense of hope and forgiveness.
Friday, February 20, 2015
How Can I Get My Daughter to Read?
I can remember back when I hated to read; it was in the third grade when things started to change for me. The turning point? I actually finished reading an entire book - Henry and the Paper Route by Beverly Cleary. The story itself was not as memorable, but I remember the satisfaction I felt when I had, for the first time, read the last page and closed a book from its back. Then there was the feeling of, 'now what?' I was left with such a sense of accomplishment that I felt I could read any book and therefore: GO anywhere, DO anything, and BE anyone.
I went up to the smartest girl in the class and asked her what she was reading. She too had just finished a book and was willing to let me borrow it until the bookmobile arrived at school the following week. After a quick shuffle through her desk she pulled out a hardback at least three times the size of Cleary's Henry. I was mortified and even more so when she asked what I had finished reading, searching for a fair swap. Before answering I backed out of the deal, telling her I wouldn't be able to read her book before it was due back. Her reply, "Are you sure? I had it done in three days." I remember this specifically because it took me almost three weeks to finish Henry. Before I thought I only hated reading, but now I knew I was bad at it too. It was another two years until I decided to try and finish another book again.
Unfortunately my daughter seems to have been plagued with the same fate, despite my efforts to intervene. Every year a teacher would tell us that she was either one or two grade levels behind in reading, but not to worry about it....just keep her reading. This turned out to be the ultimate challenge. As part of homework she was required to read 20 to 30 minutes depending on the teacher. She would regularly spend double that amount of time fighting me, desperate to find a way not to read at all. Someone listening in would think I was beating her with the book rather than coaxing her into reading it. The tantrums became part of our nightly routine and her loathing for books only deepened.
We did have her tested to ensure there was not a more mechanical issue keeping her from the enjoying the ample range of stories I had presented to her. (This was also something required for her to qualify for a 504 plan as the diagnosis of PANDAS and anxiety were not enough to satisfy the school.) All of the testing supported her mind's ability to see and interpret words within a range that did not require intervention.
This year in the 7th grade instead of having a teacher evaluate their reading level one on one, each student took a computerized assessment and at the end immediately received their own results. At the beginning of the school year our daughter was at a 5th grade 7 month level. She just took it again and was at a 5th grade 3 month level. Her interpretation? Not only does she hate reading, but she is bad at it too.
I have shared with her my love and hate history with reading, and expressed how it truly does take practice - just like anything else - and the more she reads the more she will enjoy it. We have made numerous trips to the library exploring different genres and topics. Checking out multiple books at a time she will make it one chapter in and give up - deciding the book is boring. Recently, I came across an article about a dad with a similar issue with his 2 boys, and his answer was to write a story starring his sons. This is going to be my next attempt. At age 12, my daughter is naturally self involved and if this is going to work now will be the time. I am hoping it will be like how she is more likely to eat a vegetable if she planted the seed, watered it, and watched it grow and flower into a zucchini.
I will keep you posted on the progress. In the meantime if you have any suggestions please let me know! elizabethgibbs.author@gmail.com
I went up to the smartest girl in the class and asked her what she was reading. She too had just finished a book and was willing to let me borrow it until the bookmobile arrived at school the following week. After a quick shuffle through her desk she pulled out a hardback at least three times the size of Cleary's Henry. I was mortified and even more so when she asked what I had finished reading, searching for a fair swap. Before answering I backed out of the deal, telling her I wouldn't be able to read her book before it was due back. Her reply, "Are you sure? I had it done in three days." I remember this specifically because it took me almost three weeks to finish Henry. Before I thought I only hated reading, but now I knew I was bad at it too. It was another two years until I decided to try and finish another book again.
Unfortunately my daughter seems to have been plagued with the same fate, despite my efforts to intervene. Every year a teacher would tell us that she was either one or two grade levels behind in reading, but not to worry about it....just keep her reading. This turned out to be the ultimate challenge. As part of homework she was required to read 20 to 30 minutes depending on the teacher. She would regularly spend double that amount of time fighting me, desperate to find a way not to read at all. Someone listening in would think I was beating her with the book rather than coaxing her into reading it. The tantrums became part of our nightly routine and her loathing for books only deepened.
We did have her tested to ensure there was not a more mechanical issue keeping her from the enjoying the ample range of stories I had presented to her. (This was also something required for her to qualify for a 504 plan as the diagnosis of PANDAS and anxiety were not enough to satisfy the school.) All of the testing supported her mind's ability to see and interpret words within a range that did not require intervention.
This year in the 7th grade instead of having a teacher evaluate their reading level one on one, each student took a computerized assessment and at the end immediately received their own results. At the beginning of the school year our daughter was at a 5th grade 7 month level. She just took it again and was at a 5th grade 3 month level. Her interpretation? Not only does she hate reading, but she is bad at it too.
I have shared with her my love and hate history with reading, and expressed how it truly does take practice - just like anything else - and the more she reads the more she will enjoy it. We have made numerous trips to the library exploring different genres and topics. Checking out multiple books at a time she will make it one chapter in and give up - deciding the book is boring. Recently, I came across an article about a dad with a similar issue with his 2 boys, and his answer was to write a story starring his sons. This is going to be my next attempt. At age 12, my daughter is naturally self involved and if this is going to work now will be the time. I am hoping it will be like how she is more likely to eat a vegetable if she planted the seed, watered it, and watched it grow and flower into a zucchini.
I will keep you posted on the progress. In the meantime if you have any suggestions please let me know! elizabethgibbs.author@gmail.com
Saturday, September 27, 2014
Fur Baby Therapy
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| We decided to get our yorkie Willow as a therapy dog for our PANDAS daughter when she was struggling with reading. Months later my husband and I realized how much therapy we each ended up receiving from her as well .... comfort, a reason to make us exercise together, and tons of comic relief. Here is a link to a great article I found about the first therapy dog (also a yorkie!) .... Therapy Dogs Change Lives. |
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| We recently rescued another fur baby...Piper! This way I won't get as jealous when Willow wants to snuggle with someone else. :) |
Friday, September 26, 2014
Another Reason to Love Sam Smith
I was listening to the radio when they casually mentioned before playing one of Sam Smith's songs that he has Obsessive Compulsive Disorder. Naturally that caught my attention being the parent of a child who has battled OCD along with PANDAS for years now. I did a quick web search and sure enough the fact was confirmed on this video by Sam himself along with some other forms of anxiety.
So why did I find this exceptional when there are plenty of people out there with this problem? Prior to knowing this I was already absorbed by the reality presented in Sam's art through the honesty of his lyrics and the emotion inflicted in his voice. When I listen to music I want to *feel* something and his music far exceeds this expectation.
One song in particular that I wanted to highlight as a PANDAS parent was In The Lonely Hour. In this I hear the voice of our children who desperately need us there for them as they endure these horrid moments PANDAS forces into their lives. Anyone who has dealt with any level of depression knows that it is possible to feel lonely in the most crowded of rooms. Our children sit in overfilled classrooms with rarely one soul that understands what they are going through. I think of all the hours my daughter has cried and as her mother I was lost in how to comfort her...what to say or do. Now I know what I did or said will not be what my daughter remembers, it will be that I was there with her in those lonely hours. I respect Sam Smith's bravery in opening his heart to us all and thank him for giving our children a humanized celebrity whom offers absolute empathy.
Here is a live clip of In The Lonely Hour...
So why did I find this exceptional when there are plenty of people out there with this problem? Prior to knowing this I was already absorbed by the reality presented in Sam's art through the honesty of his lyrics and the emotion inflicted in his voice. When I listen to music I want to *feel* something and his music far exceeds this expectation.
One song in particular that I wanted to highlight as a PANDAS parent was In The Lonely Hour. In this I hear the voice of our children who desperately need us there for them as they endure these horrid moments PANDAS forces into their lives. Anyone who has dealt with any level of depression knows that it is possible to feel lonely in the most crowded of rooms. Our children sit in overfilled classrooms with rarely one soul that understands what they are going through. I think of all the hours my daughter has cried and as her mother I was lost in how to comfort her...what to say or do. Now I know what I did or said will not be what my daughter remembers, it will be that I was there with her in those lonely hours. I respect Sam Smith's bravery in opening his heart to us all and thank him for giving our children a humanized celebrity whom offers absolute empathy.
Here is a live clip of In The Lonely Hour...
Thursday, September 25, 2014
Awareness Day!
Be sure to spread awareness this October! Check out pandasnetwork.org for more info.
My daughter and I will be participating in the Ohio Awareness Walk on the 25th. Here is the link if you would like to join our team or make a donation... Team Gibbs.
Saturday, September 20, 2014
PANDAS at its Worst
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| I keep this picture, as sad as it is, to remind me of how far my daughter has come in her battle with PANDAS. She was like this everyday for over a year, crying for no reason and fighting me as I tried to help her. A terrible way to spend even a moment of your childhood. |
Saturday, August 30, 2014
Follow Your Dreams...
Sounds so cliche sometimes doesn't it? Not to an 11 year old girl. Coming from the mind of a PANDAS child maybe?...or simply the mind of a child...I repeatedly get asked the same question over and over (and over), "Mommy, why didn't you follow your dream?"
The first couple of times I was surprised by the question wondering what made her think I had not. When challenged with this she states how her step dad went to school for 'computers' and that's what he does, her aunt went to school to be a nurse and that's what she does, and so on. "But you," she says "went to school for photography and work for a bank. Doesn't that make you sad?"
Finding the words to express how discovering myself pregnant at 22 while in an abusive relationship resulted in an independent and determined young single mother who needed a reliable job she could get based on experience rather than academics and talent...was not easy. By now I have it pretty much summed up..."I am living my dream - I was given the best job in the world when you were born. I love being your mom and that could never make me sad."
This will make her smile briefly, soon to be followed by a concerned look I know so well. I promise her I will still take pictures and find a way to show them to the world - even if I don't get paid for it - and the smile returns. I love that she cares but it breaks my heart that my daughter adds more worry to her life based on what I have done (or failed to do) with my own. I decided to use this space to share some of my photography and make my daughter proud!
**I have added a New Photography Tab for a page dedicated to this.**
The first couple of times I was surprised by the question wondering what made her think I had not. When challenged with this she states how her step dad went to school for 'computers' and that's what he does, her aunt went to school to be a nurse and that's what she does, and so on. "But you," she says "went to school for photography and work for a bank. Doesn't that make you sad?"
Finding the words to express how discovering myself pregnant at 22 while in an abusive relationship resulted in an independent and determined young single mother who needed a reliable job she could get based on experience rather than academics and talent...was not easy. By now I have it pretty much summed up..."I am living my dream - I was given the best job in the world when you were born. I love being your mom and that could never make me sad."
This will make her smile briefly, soon to be followed by a concerned look I know so well. I promise her I will still take pictures and find a way to show them to the world - even if I don't get paid for it - and the smile returns. I love that she cares but it breaks my heart that my daughter adds more worry to her life based on what I have done (or failed to do) with my own. I decided to use this space to share some of my photography and make my daughter proud!
**I have added a New Photography Tab for a page dedicated to this.**
Sunday, November 24, 2013
Delicious Fresh Produce the Easy Way
One way that Fibromyalgia has changed my everyday life is the ability to grocery shop. This is a task that I have never truly enjoyed and admittedly dread, but with what my body has been going through it is something I can no longer physically do on my own. I prefer to go once every three to four weeks and stock up as a way to lessen the burden.
The only problem with this is getting everything to fit in the freezer and relying on canned or frozen produce after the first week and a half. I am excited to share a solution that I discovered recently...Green Bean Delivery. With this I can order my produce and some of the other weekly essentials online and have them delivered either weekly or biweekly. I was most impressed to see that they carry the only gluten free bread that my PANDAS daughter loves to eat, Udi's white sandwich bread, along with eggs and soy milk. We received our first delivery a few days ago and I was beyond pleased with the ease of the process and quality of the products. I was inspired to share my delight with a few quick snapshots....
Saturday, November 2, 2013
Sensory Sympathies and Fibromyalgia
Typically I share about my daughter's health issues, but today I thought I would let everyone in on what has been going on with me lately. It started back in January of this year when I had a vicious attack of vertigo that lasted for about three days. After that the vertigo was still there and was provoked every time I moved my head, but was at least calm while I was still. This led to time spent with an ENT, Neurologist, 8 weeks of physical therapy, and a MRI...all of which determined I had something known as Vestibular Neuritis. Basically this is inflammation of the nerve that sends messages to the brain from the balance organs in the inner ear. What puzzled the doctors was why the nerve was not healing, allowing the brain to adjust to the new level of balance and let me move on with the rest of my life. Normally this happens within a couple of months at the longest. At this point I was a good six months in.
About two months ago I was visiting my family doctor, who had been keeping tabs on all of this and trying different medications in order to get me some relief. She happened to catch me on an extra grumbly day. I vented everything that had been bothering me, which ended up being much more than the vertigo once I laid it all out. Some of these gripes included:
*Achy flu type feeling throughout my body* I would also have a burning sensation in my muscles when doing anything physical....like in my thighs from walking up the stairs. I felt as if I had done 100 squats where as in reality I had only climbed 10 steps.
*Tired all the time and easily exhausted* Even by the most 'normal' of activities, like running the sweeper or going to the grocery.
*Having trouble concentrating* It was like I knew people were talking to me...I could see their lips moving and could hear that words were coming out. I was even engaging them with head nods and eye contact but was having trouble processing what they were saying well enough to make a remotely intelligent reply. Many times I would need to ask clarifying questions about things that should have been obvious. This has been one of the most challenging things for me at work when speaking with colleagues and customers. I feel like I must look like a total idiot and fear loosing the respect from those I have worked so hard to earn it from.
Once my doctor took all this in she said, "Well, that sounds like Fibromyalgia. Does anyone else in your family have a history with this that you are aware of?" Actually yes doc. Both my father and sister are dealing with Fibromyalgia. How could I have not made the connection sooner? One thing I was not aware of is the interference this creates with the nerves - resulting in the aches and pains, but also could very well be the problem with my vestibular nerve. A few weeks on a fibro med and my vertigo has quieted tremendously.
One thing I have encountered with this that brings me back to PANDAS is the extra sensitivity to touch. This is something my daughter has struggled with for years. So many times she told me her jeans 'hurt' and as compassionate as I was I never could really understand. It was a couple of weekends ago when I was laying on the bed watching TV and just could not get comfortable. The seam on my jeans was pushing up against my knee and I honestly said, "This *hurts*!!" I am pleased to say I have found something good thing in all of this...genuine empathy.
I still need to see a specialist for an official diagnosis, but at least with this medication I feel like I have some of my life back...so hopefully you will be seeing more posts from me!
About two months ago I was visiting my family doctor, who had been keeping tabs on all of this and trying different medications in order to get me some relief. She happened to catch me on an extra grumbly day. I vented everything that had been bothering me, which ended up being much more than the vertigo once I laid it all out. Some of these gripes included:
*Achy flu type feeling throughout my body* I would also have a burning sensation in my muscles when doing anything physical....like in my thighs from walking up the stairs. I felt as if I had done 100 squats where as in reality I had only climbed 10 steps.
*Tired all the time and easily exhausted* Even by the most 'normal' of activities, like running the sweeper or going to the grocery.
*Having trouble concentrating* It was like I knew people were talking to me...I could see their lips moving and could hear that words were coming out. I was even engaging them with head nods and eye contact but was having trouble processing what they were saying well enough to make a remotely intelligent reply. Many times I would need to ask clarifying questions about things that should have been obvious. This has been one of the most challenging things for me at work when speaking with colleagues and customers. I feel like I must look like a total idiot and fear loosing the respect from those I have worked so hard to earn it from.
Once my doctor took all this in she said, "Well, that sounds like Fibromyalgia. Does anyone else in your family have a history with this that you are aware of?" Actually yes doc. Both my father and sister are dealing with Fibromyalgia. How could I have not made the connection sooner? One thing I was not aware of is the interference this creates with the nerves - resulting in the aches and pains, but also could very well be the problem with my vestibular nerve. A few weeks on a fibro med and my vertigo has quieted tremendously.
One thing I have encountered with this that brings me back to PANDAS is the extra sensitivity to touch. This is something my daughter has struggled with for years. So many times she told me her jeans 'hurt' and as compassionate as I was I never could really understand. It was a couple of weekends ago when I was laying on the bed watching TV and just could not get comfortable. The seam on my jeans was pushing up against my knee and I honestly said, "This *hurts*!!" I am pleased to say I have found something good thing in all of this...genuine empathy.
I still need to see a specialist for an official diagnosis, but at least with this medication I feel like I have some of my life back...so hopefully you will be seeing more posts from me!
Friday, September 27, 2013
PANDAS Eyes
One thing that has been very reliable in detecting an oncoming PANDAS flare up in my daughter is simply the look in her eyes. I tried to capture this 'look' in a photograph since I have been looking for a way to best describe this to her pediatrician and other parents. It was when I was cropping the image that I realized just how similar her "PANDAS" eyes are to those of a real panda bear. Droopy, dark circles, and abnormal pupils. Both sets of eyes make me want to give them each a big Mama Bear hug.
Panda image obtained from fellow blogger....http://chengxiao123456.blog.com/page/4/
Panda image obtained from fellow blogger....http://chengxiao123456.blog.com/page/4/
Sunday, July 14, 2013
Video Now Available
Sorry about the technical error with Dora's video...we are both new at this. : )
Saturday, July 13, 2013
The Sound of Worries
In a previous post I shared that my PANDAS daughter was starting a new hobby and creating videos about her life, etc. Here I have posted a video of her sharing a song she wrote about her 'worries'. Along with 46% of fellow PANDAS children she suffers from severe separation anxiety (http://pandasnetwork.org/research/parent-research/fact-sheet/) and has expressed in this song how she feels when she tries to call me and I cannot answer my phone.
Saturday, June 22, 2013
Supporter or Enabler?
As parents one thing we are still learning about PANDAS is how much control to give our daughter over her obsessions and compulsions. We have gone back and forth on this and quickly realized there is a delicate line between being supportive and enabling.
From the beginning our daughter has obsessed with perfecting her routines, most specifically around getting ready in the morning. She will agonize over making potential changes no matter how small. Everything will be fine tuned and seem to be working well for awhile, but then the obsession creeps back in causing her to doubt it all.
Over the last several weeks she has been wanting to create videos of herself, somewhat like a diary, but has had a hard time coming up with ideas of what to talk about. As a way of brainstorming she went to YouTube to see what videos other girls her age had created. She stumbled across a series of videos where girls explain their morning routines. This of course greatly inspired her to once again tweak her own, but before making any decisions she wanted to watch more (and more, and more) videos.
I have been torn over whether or not to allow her to continue this 'research'. On one hand I think it is good that she sees that everyone's routines are different, and the girls do tend to share it cannot always be the same everyday and stress flexibility in them. However, I am also worried about the obvious...that the obsessive part of her mind will not hear any of those points at all; focusing solely on her own perfection.
Any thoughts....?
From the beginning our daughter has obsessed with perfecting her routines, most specifically around getting ready in the morning. She will agonize over making potential changes no matter how small. Everything will be fine tuned and seem to be working well for awhile, but then the obsession creeps back in causing her to doubt it all.
Over the last several weeks she has been wanting to create videos of herself, somewhat like a diary, but has had a hard time coming up with ideas of what to talk about. As a way of brainstorming she went to YouTube to see what videos other girls her age had created. She stumbled across a series of videos where girls explain their morning routines. This of course greatly inspired her to once again tweak her own, but before making any decisions she wanted to watch more (and more, and more) videos.
I have been torn over whether or not to allow her to continue this 'research'. On one hand I think it is good that she sees that everyone's routines are different, and the girls do tend to share it cannot always be the same everyday and stress flexibility in them. However, I am also worried about the obvious...that the obsessive part of her mind will not hear any of those points at all; focusing solely on her own perfection.
Any thoughts....?
Friday, April 19, 2013
One Good Friend
I have always told my daughter that all she needs is one good friend to survive school with minimal damage. Making new friends in the fifth grade is not effortless for most kids, but for a PANDAS child it can be even more challenging. When she was in elementary school Dora made 'surface' friends, as I like to think of them, who she could play with contentedly without either really needing to know much about the other. As she gets older and her roots of individuality stretch deeper, her friendships too are becoming more personal.
There were a few of the surface friends that avoided her after encountering the PANDAS layer. Either they did not care to understand her situation or maybe they even feared it. One thing we did learn along the way was to not let a friend learn about PANDAS during an episode...it is much better to discuss it before that happens. For example, Dora had a friend spend the night for the first time last year. Of course she was super excited, but I was afraid of how the changes in her routine might cause her to react. We discussed how she would handle any anxiety that would arise and since this was a friend that she had known for awhile, I was feeling adequately prepared.
She made it through skipping the nighttime rituals without concern; the next morning however was a different story. Her normal routine was fully derailed which was too much for her to manage. She ended up with a full blown tantrum that lasted close to an hour while her friend watched in uncomfortable silence. It was so hard for me to know what to do....I felt deeply for both of them. Slowly this girl became less and less of a friend to the point where now the two of them barely speak at all.
It took a few long months but thankfully Dora made a new friend this school year who has stayed over several times now. The first time she was at our house we discussed PANDAS and how it can cause Dora to behave differently. It was not until last weekend that she witnessed this first hand. The two girls were using some paint in Dora's room to work on a project together and a few drops ended up on the carpet throwing her OCD out of control. I heard the commotion, quickly went to investigate and found Dora on the floor in the bathroom sobbing and scratching deeply into the skin on her legs. Her friend helped me clean up the droplets, work to calm Dora down, and went on the rest of the day as if nothing had happened.
Relationships are always a risk at any age, and will come and go throughout our lifetimes. So even though this friend may be in our lives for only a year or two, depending on which direction each girl goes, I will always be forever grateful that Dora had one good friend during this challenging time in her life.
There were a few of the surface friends that avoided her after encountering the PANDAS layer. Either they did not care to understand her situation or maybe they even feared it. One thing we did learn along the way was to not let a friend learn about PANDAS during an episode...it is much better to discuss it before that happens. For example, Dora had a friend spend the night for the first time last year. Of course she was super excited, but I was afraid of how the changes in her routine might cause her to react. We discussed how she would handle any anxiety that would arise and since this was a friend that she had known for awhile, I was feeling adequately prepared.
She made it through skipping the nighttime rituals without concern; the next morning however was a different story. Her normal routine was fully derailed which was too much for her to manage. She ended up with a full blown tantrum that lasted close to an hour while her friend watched in uncomfortable silence. It was so hard for me to know what to do....I felt deeply for both of them. Slowly this girl became less and less of a friend to the point where now the two of them barely speak at all.
It took a few long months but thankfully Dora made a new friend this school year who has stayed over several times now. The first time she was at our house we discussed PANDAS and how it can cause Dora to behave differently. It was not until last weekend that she witnessed this first hand. The two girls were using some paint in Dora's room to work on a project together and a few drops ended up on the carpet throwing her OCD out of control. I heard the commotion, quickly went to investigate and found Dora on the floor in the bathroom sobbing and scratching deeply into the skin on her legs. Her friend helped me clean up the droplets, work to calm Dora down, and went on the rest of the day as if nothing had happened.
Relationships are always a risk at any age, and will come and go throughout our lifetimes. So even though this friend may be in our lives for only a year or two, depending on which direction each girl goes, I will always be forever grateful that Dora had one good friend during this challenging time in her life.
Saturday, April 13, 2013
Springtime Struggles
After having a daily meltdown every morning for the last two years about what to wear (specifically what would be comfortable enough to wear), my PANDAS daughter made a serious break through over the winter. She had been wearing clothes up to three or four sizes too big in order to keep the material from touching her skin as much as possible. Not to mention that anything suitable for her to wear would need to be soaked in fabric softener and washed multiple times.
Unfortunately what gave her the courage to push the envelope was being teased by classmates about her baggy wardrobe. I clearly remember the day when we were out shopping and she asked to try on some jeans. Having been here many times before I expected the reject pile to be the only pile she ended up with, but this time it was different. She actually found some jeans, off the rack in the GIRLS department, and was willing to give them a try. I was dumbfounded and scurried to the checkout without asking questions or inspecting the price tag. From that day on she continued to push herself a smidgen here and there - enough to end the winter with a modest collection of appropriately sized attire.
Here in Ohio unpredictable weather is, well....predictable. Going from winter to spring has been a major setback leading back to the days of sunrise hysterics. The ups and downs in temperature has become a new fixation for her PANDAS induced OCD. Will she be too hot or too cold? Should she wear carpis, jeans, or shorts....long sleeves or short sleeves? What about a jacket? These questions come at me over and over (and over and over) again all to be relived the next morning (and the next, and the one after that).
Springtime is one where most of us savor the balance of pleasantly cool and warm days. When trying to point out this delicacy to my dear daughter I only receive stares filled with anxiety and dread. My hope is for her to have a summer like this winter (or better!), without losing all progress made....and for her to have an autumn where she can embrace the joy of seasonal variety.
Unfortunately what gave her the courage to push the envelope was being teased by classmates about her baggy wardrobe. I clearly remember the day when we were out shopping and she asked to try on some jeans. Having been here many times before I expected the reject pile to be the only pile she ended up with, but this time it was different. She actually found some jeans, off the rack in the GIRLS department, and was willing to give them a try. I was dumbfounded and scurried to the checkout without asking questions or inspecting the price tag. From that day on she continued to push herself a smidgen here and there - enough to end the winter with a modest collection of appropriately sized attire.
Here in Ohio unpredictable weather is, well....predictable. Going from winter to spring has been a major setback leading back to the days of sunrise hysterics. The ups and downs in temperature has become a new fixation for her PANDAS induced OCD. Will she be too hot or too cold? Should she wear carpis, jeans, or shorts....long sleeves or short sleeves? What about a jacket? These questions come at me over and over (and over and over) again all to be relived the next morning (and the next, and the one after that).
Springtime is one where most of us savor the balance of pleasantly cool and warm days. When trying to point out this delicacy to my dear daughter I only receive stares filled with anxiety and dread. My hope is for her to have a summer like this winter (or better!), without losing all progress made....and for her to have an autumn where she can embrace the joy of seasonal variety.
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