Hi Everyone, sorry I have not posted in awhile. To tell the truth, life has been on the calmer side the first half of the year, so I decided to take a break from writing.
Then March came, and my Michael fell off the cliff. When I mean fell off the cliff, I mean, all of his old behaviors came back full throttle with a vengeance. This time as an 8 year old boy with plenty of arsenal. Now, when I say "came back", what I really should explain is that they heightened out of nowhere in a very big way.
They never really went away. However, with much vested effort to understand my child, and a wonderful Behavior Modification Program by Harold Glasser, The Nurtured Heart Approach, I really achieved a lot. A lot, as you may have read from recent posts.
As long as I was able to hover over him through out much of his day, we were in pretty good shape.
Again. March. All of my child's worst traits reared their angry heads. Opposition, refusal to comply, mean behavior, snarky tones. total disrespect, anger. So much anger.
WTF
The phone calls started coming from school. More phone calls. We had meetings. Then more meetings. Made plans. Made more plans. Nothing worked. I mean nothing worked.
I finally decided to put in a call to a Dr. James Greenblatt. I had my Michael on his waiting list in case I ever needed him. Still, a long wait. I begged. Then I begged some more. God. They were going to find a place for him in his schedule. In 6 weeks.
Meanwhile, because I knew how this doctor operated. In the sense of looking for "root cause" for things like ADHD, ODD, Bi-Polar, etc...And I had a pretty good idea that my Michael fit into his profile of kids that can be treated for the above listed disorders through diet, supplementation, etc, I got to work.
I slowly started eliminating gluten and milk from my child's diet. It took about 2 weeks to get the diet pretty clean.
At the end of the second week, the IGG food allergy blood results came back. HOLY CATS!!! My child was not just allergic to milk/dairy/Gluten. He was OVER THE TOP OFF THE CHARTS allergic. Especially to milk, and every aspect of it: Casein, Whey, and Lactose Intolerant. What really threw me was his allergy to EGGS. EGGS. UGH. Have you ever cooked without eggs? Try it. It is not for the faint of heart.
At the end of week 2, I removed eggs.
Day 18 of diet. My child woke up a different child. I don't mean a little different. I mean, "WHO IS THIS HAPPY CHILD", kind of different. Gone was the edge, the snarky tones, the mean acts towards his brother. He started saying please and thank you like, ten times a day. He started smiling more, and started accepting compliments. He did not fall apart when I reprimanded him. I can reprimand him now!! The bonus is that afterwards, he actually sits down and talks to me about his behavior. This has never happened one time, I mean ONE TIME in this child's life. Over the past week, it has happened several times. Reading...READING. HE IS READING WITHOUT CRYING. But wait, I must add that my son has had a 3 year negative relationship to reading. So, it is still cropping up a little when reading (frustration/avoidance). But he is doing it. His reading has jumped up 100%. Another 50% and he will be ready for 3rd grade. More then ready.
Truly, this child has changed. Now, I am often accused of being too optimistic. That may be true. But so far, for 1 1/2 weeks now, I have consistently seen a different child. I don't even have to use my behavior mod program, although by habit I still do.
We see his new doctor in about ten days. Diet is only the half of it. I believe that cleaning up the gut and then proper supplements to balance neuro brain chemicals from malabsorption issues caused by food allergies will be a 6 month endeavor.
That's okay. I'll take it.
After learning what I have learned. For example learning how certain food allergies can have a different histamine response then garden variety to grass/pollen etc. How the antibodies that are created from these kinds of allergies have the capacity to cross the blood brain barrio and attach themselves to the opiate receptors in the brain and cause things like, irritability, brain fog, ets...I can see how a simple allergy to milk for example, can have such a dramatic neuro/behaviorial response in a child.
I encourage any parent whom has a child whom is dealing with emotional dysregulation issue, sensory issues, odd, adhd, bi-polar to have these IGG blood tests done. They are simple, and can be done through a primary physician.
I will be posting in the near future to share our journey.
Q
Friday, June 27, 2014
Thursday, March 13, 2014
PANDAS: A list of some of the most important things I have learned.
1) Once Pandas is tripped off, new episodes can be brought on by anything that turns on the auto-immune system: Flu, sore throat, allergies, cuts/scrapes, lost teeth, stress, exposure to somebody else whom is sick. This happens because once you have misguided T cells, the autoimmune system has what is called a working memory. So anything that causes an autoimmune reaction, the same misguided T cells will be made over and over, hence, a Pandas flare.
2) Much of the autoimmune system is in the gut. Probiotics are critical. When the gut is overrun by bad bacteria and not enough gut flora, an inflammatory response will result. "Happy Gut/Happy Brain". "Leaky Gut/Leaky Brain". Your neurotransmitters are also partly manufactured in your gut. If your gut is unbalanced, your neurotransmitters can be unbalanced as well. Actually, science is focusing more and more on the relationship between the gut and neuropsychiatric illnesses. If your interested, google Dr. James Greenblatt.
3) Antibiotics works for 3 reasons with Pandas. 1) It helps to eradicate the invader. 2) It is an anti-inflammatory. 3) It tells the immune system to turn off. With Pandas, part of the problem is that the immune system does not turn off by itself and keeps making antibodies because it is mistaking certain cells in the brain that have a similar protein structure as Strep. The immune system thinks the body is still sick and keeps making antibodies. Remember, once this disorder, "mistaken identity" issue is tripped off, working memory enters into the drama.
4) Motrin and like anti-inflammatories are good for taming down a flare, but not a cure. They are more a band-aide. They do have their role in treating Pandas, but be careful not to overuse. I have learned not to use Motrin often, because it can mask symptoms and the flare can get out of control and harder to treat...I go to antibiotics if my child is looking symptomatic for more then 24 hours.
5) Curcumin is a natural anti-inflammatory and good for Pandas children. Turmeric Force, by New Chapter has been great. It is like a constant stream of anti-inflammatory running through my child's body...It appears to be able to cross the BBB as well. No motrin and no flares...
6) Yelling/Reprimanding a child in the gripes of Pandas will make it worse.
7) IVIG is wonderful, but not an instant cure. It takes up to a full year or more for its full effect on the immune system.
8) Flares come and go. Even after IVIG. The hopeful result is that they are farther in between, less intense, and recover faster. The difference between a child whom is treated and not treated (IVIG is not only option), is the big picture outcome: "Eventually all Pandas children will fully recover". " It is the child never treated that can become lifelong and chronic". "Never treated" meaning not addressing Pandas from an autoimmune approach.
9) After a long flare, Pandas behaviors can become a habit, and even who they are. It is important to know your child well and determine the difference. I return to holding my child accountable for his actions as soon as possible after a flare. If my son is able to self correct, I know he is done with the flare.
10) The wax/wane pattern can last several weeks after a flare, and it is the normal part of the healing process. The important thing to look for is continued improvement while this is happening.
11) For us, a Tonsillectomy was very helpful. It is theorized that the Tonsils which act as a garbage collector of past infections can leach out a steady stream of these back into the system. This can turn on the autoimmune system and cause flares over and over again.
12) Always re-test any child after a Strep infection has been treated with antibiotics. Always.
13) When deciding to supplement, go slowly, adding one supplement at a time. If you start off with too many at the same time, you will not get a good read on what works and what doesn't. Often, your child will react poorly to a supplement you have chosen. If you have started several all at the same time, you will not know which one is the culprit.
14) You and your child will get through this.
Q
2) Much of the autoimmune system is in the gut. Probiotics are critical. When the gut is overrun by bad bacteria and not enough gut flora, an inflammatory response will result. "Happy Gut/Happy Brain". "Leaky Gut/Leaky Brain". Your neurotransmitters are also partly manufactured in your gut. If your gut is unbalanced, your neurotransmitters can be unbalanced as well. Actually, science is focusing more and more on the relationship between the gut and neuropsychiatric illnesses. If your interested, google Dr. James Greenblatt.
3) Antibiotics works for 3 reasons with Pandas. 1) It helps to eradicate the invader. 2) It is an anti-inflammatory. 3) It tells the immune system to turn off. With Pandas, part of the problem is that the immune system does not turn off by itself and keeps making antibodies because it is mistaking certain cells in the brain that have a similar protein structure as Strep. The immune system thinks the body is still sick and keeps making antibodies. Remember, once this disorder, "mistaken identity" issue is tripped off, working memory enters into the drama.
4) Motrin and like anti-inflammatories are good for taming down a flare, but not a cure. They are more a band-aide. They do have their role in treating Pandas, but be careful not to overuse. I have learned not to use Motrin often, because it can mask symptoms and the flare can get out of control and harder to treat...I go to antibiotics if my child is looking symptomatic for more then 24 hours.
5) Curcumin is a natural anti-inflammatory and good for Pandas children. Turmeric Force, by New Chapter has been great. It is like a constant stream of anti-inflammatory running through my child's body...It appears to be able to cross the BBB as well. No motrin and no flares...
6) Yelling/Reprimanding a child in the gripes of Pandas will make it worse.
7) IVIG is wonderful, but not an instant cure. It takes up to a full year or more for its full effect on the immune system.
8) Flares come and go. Even after IVIG. The hopeful result is that they are farther in between, less intense, and recover faster. The difference between a child whom is treated and not treated (IVIG is not only option), is the big picture outcome: "Eventually all Pandas children will fully recover". " It is the child never treated that can become lifelong and chronic". "Never treated" meaning not addressing Pandas from an autoimmune approach.
9) After a long flare, Pandas behaviors can become a habit, and even who they are. It is important to know your child well and determine the difference. I return to holding my child accountable for his actions as soon as possible after a flare. If my son is able to self correct, I know he is done with the flare.
10) The wax/wane pattern can last several weeks after a flare, and it is the normal part of the healing process. The important thing to look for is continued improvement while this is happening.
11) For us, a Tonsillectomy was very helpful. It is theorized that the Tonsils which act as a garbage collector of past infections can leach out a steady stream of these back into the system. This can turn on the autoimmune system and cause flares over and over again.
12) Always re-test any child after a Strep infection has been treated with antibiotics. Always.
13) When deciding to supplement, go slowly, adding one supplement at a time. If you start off with too many at the same time, you will not get a good read on what works and what doesn't. Often, your child will react poorly to a supplement you have chosen. If you have started several all at the same time, you will not know which one is the culprit.
14) You and your child will get through this.
Q
Wednesday, January 15, 2014
Anxiety, ODD, ADHD, SENSORY DISORDERS, PANDAS
Pandas, ODD, Sensory issues....This is a very interesting indeed!
A lot of food for thought, in my humble opinion.
http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm
http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
A lot of food for thought, in my humble opinion.
http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm
http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
Friday, January 10, 2014
Is Your Child Just Bad?
Many times as a parent, I contemplated this question. Is my child just inherently bad? The answer I came up with many times ranged from YES >NO>MAYBE> and then as I learned, I settled on NO.
I have now parented for 8 years. I was blessed with lovely twin boys whom when they came into this world I imagined picture perfect scenarios. I had plenty of hands on experience along with a basic studied knowledge of child psychology.
As long as I survived babyhood, with it's sleepless nights, crying jags that lasted hours, never ending diaper rash and the fact that most of my time would be spent with two identities that could not carry on an adult conversation and could care less that I had the stomach flu, the rest should be a cakewalk.
I don't mean to undermine the pains of parenting, but my experience had showed me that as my children grew, life would get a little easier.
Exhibit A: Sensory Processing Disorder
Exhibit B: High Strung Temperaments
Exhibit C: Pandas
Exhibit D: Two boys, same age, different needs, under the same roof.
Exhibit E: A mom who thought she knew much and as it turned out, still had a lot to learn.
The good news is, despite my many errors, my kids are doing quite well.
In order to achieve this though, I had to learn much. In order to learn, I had to abandon paradigm's that I had ascribed to from some of the greatest psychologist's of our time. This was not easy, this was free falling. Nonetheless, my gut was telling me that the time-tested traditional parenting approaches were just not going to cut it here.
So I ditched most of what I had learned, and started over. With one exception: All children need to be loved. All children have that inherent need. To be understood and accepted. I don't think anybody would argue that point. Figuring out how to do that for my children was the mystery.
I have done that. Met the needs of my very needy children. Loved them the way they needed to be loved. It was not easy. I failed a lot. I doubted a lot. Eventually though, I found success. It did not happen overnight. It was not linear. In fact, it often came with one step forward, two steps back. Sometimes three. I pressed on. I refused to give up.
Having learned what I had to learn, I see children through a very different set of eyes than I did 8 years ago. When I see a child whom is misbehaving in an over the top ridiculous way, I no longer think to myself, "That child should be punished", or "That child is just a spoiled brat". I am more inclined to think, "What need does that child have that is not being met?". Needs come in many shapes and sizes. I had to learn that as well.
I am in a profession that I come into a contact of a variety of people. I am saddened and amazed when I hear a elementary teacher complain about a child whom he/she has deemed, "just plain bad". Because, after learning all that I have learned, I no longer believe that children are "just plain bad". So I often find myself quoting Howard Glasser, "If a child could do well, they would". I believe that.
I can easily see though why one wouldn't. After all, I was forced to put on a different set of eyes. Think a new way. The world is just beginning to understand disorders like Sensory Processing Issues, ODD, ADHD, High-strung Temperaments/and what is truly behind them. Pandas, a neuropsychiatric disorder is lending great understanding to the connection between the auto-immune system and mood/movement disorders.
So I challenge the parent, teacher, babysitter, baseball coach.....when you see a child who is acting consistently out of the norm...pretty much unable to achieve/maintain success, rather then label that child as bad, ask yourself the simple question, "If a child could do well, why wouldn't they?".
Qannie
I have now parented for 8 years. I was blessed with lovely twin boys whom when they came into this world I imagined picture perfect scenarios. I had plenty of hands on experience along with a basic studied knowledge of child psychology.
As long as I survived babyhood, with it's sleepless nights, crying jags that lasted hours, never ending diaper rash and the fact that most of my time would be spent with two identities that could not carry on an adult conversation and could care less that I had the stomach flu, the rest should be a cakewalk.
I don't mean to undermine the pains of parenting, but my experience had showed me that as my children grew, life would get a little easier.
Exhibit A: Sensory Processing Disorder
Exhibit B: High Strung Temperaments
Exhibit C: Pandas
Exhibit D: Two boys, same age, different needs, under the same roof.
Exhibit E: A mom who thought she knew much and as it turned out, still had a lot to learn.
The good news is, despite my many errors, my kids are doing quite well.
In order to achieve this though, I had to learn much. In order to learn, I had to abandon paradigm's that I had ascribed to from some of the greatest psychologist's of our time. This was not easy, this was free falling. Nonetheless, my gut was telling me that the time-tested traditional parenting approaches were just not going to cut it here.
So I ditched most of what I had learned, and started over. With one exception: All children need to be loved. All children have that inherent need. To be understood and accepted. I don't think anybody would argue that point. Figuring out how to do that for my children was the mystery.
I have done that. Met the needs of my very needy children. Loved them the way they needed to be loved. It was not easy. I failed a lot. I doubted a lot. Eventually though, I found success. It did not happen overnight. It was not linear. In fact, it often came with one step forward, two steps back. Sometimes three. I pressed on. I refused to give up.
Having learned what I had to learn, I see children through a very different set of eyes than I did 8 years ago. When I see a child whom is misbehaving in an over the top ridiculous way, I no longer think to myself, "That child should be punished", or "That child is just a spoiled brat". I am more inclined to think, "What need does that child have that is not being met?". Needs come in many shapes and sizes. I had to learn that as well.
I am in a profession that I come into a contact of a variety of people. I am saddened and amazed when I hear a elementary teacher complain about a child whom he/she has deemed, "just plain bad". Because, after learning all that I have learned, I no longer believe that children are "just plain bad". So I often find myself quoting Howard Glasser, "If a child could do well, they would". I believe that.
I can easily see though why one wouldn't. After all, I was forced to put on a different set of eyes. Think a new way. The world is just beginning to understand disorders like Sensory Processing Issues, ODD, ADHD, High-strung Temperaments/and what is truly behind them. Pandas, a neuropsychiatric disorder is lending great understanding to the connection between the auto-immune system and mood/movement disorders.
So I challenge the parent, teacher, babysitter, baseball coach.....when you see a child who is acting consistently out of the norm...pretty much unable to achieve/maintain success, rather then label that child as bad, ask yourself the simple question, "If a child could do well, why wouldn't they?".
Qannie
Wednesday, December 4, 2013
Pandas-Sensory Issues-Depression-Anxiety-Mood Disorders-...it just goes on and on....
I came across a very good article on MTHFR
Just read it....I think everybody should understand this on some level.
http://latitudes.org/holy-
Just read it....I think everybody should understand this on some level.
http://latitudes.org/holy-
Wednesday, November 13, 2013
PANDAS...Great strides made in research.
Recently, a scientist whom has been researching Pandas was able to show empirical evidence that Pandas does indeed exist.
This is second hand information, it might contain some inaccuracies, however, it transcends the main important idea.
He cross bred white mice and created a Hybrid that have autoimmune deficits.
He then injected them with T cells derived from Panda's serum that is thought to be the culprit behind this disorder. The mice all started to show Pandas symptoms. They went from calm to a hyperactive state, frenetic, and aggressive, also doing the same motoric movements over and over again.
He then treated them with IG antibodies. (The same treatment that Everett received last June). They all returned back to normal.
He then did brain biopsies on the mice. He found that the T cells had indeed made their way across the Brain Blood Barrier and into the Basal Ganglia, causing an inflammatory response that is not able to be viewed by an MRI, or detected by a blood test. The controversy over Pandas is that nobody could prove that the BBB could be breeched. He has now proven this.
He did timeline linear autopsies to see how long these antibodies would remain in the brain before leaving. (full recovery). Timeline showed several months to leave the brain if not re-infected. The conversion to humans is up to 6 years.
Because he was able to replicate this by injecting Pandas serum, it showed that once the Pandas disorder is tripped off, all future T cells mfg by the immune system have what is called a "working memory". Meaning, if a child has a cold, stomach flu, loses a tooth, stress, anything that causes an autoimmune response in any way and T cells are mfg, they will go after the basil ganglia as well as the foreign enemy, especially if the BBB has not had adequate time to heal and close. Thus, we see the remitting/relapsing pattern in children.
The good news: All research studies reveal that All children who have been treated young, like Everett, recover fully and lead healthy lives. It may take 1 to 2 years for the effects of IVIG to do their things, but the prognosis is promising!!!
His work is in the process of being published by the scientific journals and undergo peer review.
Translation: We are not all crazy.
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Sunday, November 10, 2013
Pandas: Our life since IVIG.
PANDAS. Our life since IVIG...
Mid June of this year, our son had his first IVIG treatment. If you have followed this forum, you would have read just how beautiful he did. His motoric movements non-existent within in days of treatment. His temperament, unstable, volatile , and hyper... overnight, changed back to the child I knew. Gone were his tantrums, angry outbursts, and unreasonable attitudes. His need to use an entire roll of toilet paper in one sitting went away. I did not hear him speak of fears that I, his mom, was going to be hurt because I stood on a chair, or rode a bike, etc. I saw a child grow up instantly. The milestones we all wait for with typical children seemed to appear overnight. I saw a child who was acting like a 7 year old, and not a 3 year old from an emotional standpoint. He was now calm. Self awareness and an active awareness of social norms started to show itself. My child, my sweetheart, was smiling again. He was meeting the potentials that I knew were deep inside of him.
This lasted for 12 weeks.
In school, Everett was exposed to Strep and the Stomach Flu.
Three days later, on a dime, my child reverted back. Another episode. We tested for strep and it was negative. He ran a slight fever, but that was all. It appeared that he was reacting to exposure. The next three weeks were horrible. All past symptoms reappeared along with a level of anger/oppositional behavior that I had not seen before. School was almost impossible. What got him through were the group of teachers, school psychologist, and principal who came to together in support of my child. They were amazing.
Our pediatrician, who diagnosed him with Pandas, agreed that perhaps it was time to test further. Make sure that we did not miss anything. So in one day, my child underwent an EEG, MRI, and a Lumbar Puncture along with blood work.
He was discharged by the neurologist who did not believe in Pandas, and said that his blood work did not indicate any autoimmune issues, (Pandas is considered to be an autoimmune disorder). He said, "If your son had an autoimmune disorder, we would have found it. While we have weeks to wait for the Lumbar Puncture results I do not believe that we will find anything."
4 weeks later, the results came in. My son has an autoimmune disorder. Two well defined O Bands in his spinal fluid indicate that.
In my humble opinion, it was this autoimmune disorder that created the perfect circumstance for Pandas to set in and take hold.
We now have insurance coverage for future IVIG treatments, and in fact, it looks like our Insurance carrier is going to reimburse us for the one he had which we incurred almost 9K out of pocket expenses.
I am happy about the money, but I am more thrilled that we were finally able to find something to support his diagnosis. Pandas is such a nebulous diagnosis. It has yet to be truly embraced or fully understood by the medical community. Parents who have children struggling with this disorder are often met by misunderstood, unsupported, smug disdain when turning to others for help. Parents experience this from doctors, teachers, friends and family members. To put it bluntly, it is awful. We have been blessed. Our Pediatrician was the first to connect the dots. We are lucky to live 20 minutes away from one of the few specialists, Dr. K. My child's school was wise enough to know that this child, was "suddenly not himself". I applaud them for their open hearts and minds.
This was all good, but our battle is not over just yet.
This was a tough episode. An unexpected one. However it happened. We were able to move him through it with antibiotics, but I am concerned. It took only exposure to trip it off.
Studies show that if Pandas is caught early, and an IVIG is done within the first year of first episode, 80% of children recover fully from this disorder with no future episodes. My son's was done about 1 1/2 years after his first episode with 3 concurrent episodes before IVIG. Another one is in his future probably. I am grateful that we will have coverage.
I share our journey to help others. If you suspect Pandas, I would recommend following through with your instincts immediately. If your child ever contracts Strep, don't assume that the antibiotics cleared it up. Have your child retested to make sure. By doing so, you can decrease the likelihood of Pandas ever happening.
qannie
Mid June of this year, our son had his first IVIG treatment. If you have followed this forum, you would have read just how beautiful he did. His motoric movements non-existent within in days of treatment. His temperament, unstable, volatile , and hyper... overnight, changed back to the child I knew. Gone were his tantrums, angry outbursts, and unreasonable attitudes. His need to use an entire roll of toilet paper in one sitting went away. I did not hear him speak of fears that I, his mom, was going to be hurt because I stood on a chair, or rode a bike, etc. I saw a child grow up instantly. The milestones we all wait for with typical children seemed to appear overnight. I saw a child who was acting like a 7 year old, and not a 3 year old from an emotional standpoint. He was now calm. Self awareness and an active awareness of social norms started to show itself. My child, my sweetheart, was smiling again. He was meeting the potentials that I knew were deep inside of him.
This lasted for 12 weeks.
In school, Everett was exposed to Strep and the Stomach Flu.
Three days later, on a dime, my child reverted back. Another episode. We tested for strep and it was negative. He ran a slight fever, but that was all. It appeared that he was reacting to exposure. The next three weeks were horrible. All past symptoms reappeared along with a level of anger/oppositional behavior that I had not seen before. School was almost impossible. What got him through were the group of teachers, school psychologist, and principal who came to together in support of my child. They were amazing.
Our pediatrician, who diagnosed him with Pandas, agreed that perhaps it was time to test further. Make sure that we did not miss anything. So in one day, my child underwent an EEG, MRI, and a Lumbar Puncture along with blood work.
He was discharged by the neurologist who did not believe in Pandas, and said that his blood work did not indicate any autoimmune issues, (Pandas is considered to be an autoimmune disorder). He said, "If your son had an autoimmune disorder, we would have found it. While we have weeks to wait for the Lumbar Puncture results I do not believe that we will find anything."
4 weeks later, the results came in. My son has an autoimmune disorder. Two well defined O Bands in his spinal fluid indicate that.
In my humble opinion, it was this autoimmune disorder that created the perfect circumstance for Pandas to set in and take hold.
We now have insurance coverage for future IVIG treatments, and in fact, it looks like our Insurance carrier is going to reimburse us for the one he had which we incurred almost 9K out of pocket expenses.
I am happy about the money, but I am more thrilled that we were finally able to find something to support his diagnosis. Pandas is such a nebulous diagnosis. It has yet to be truly embraced or fully understood by the medical community. Parents who have children struggling with this disorder are often met by misunderstood, unsupported, smug disdain when turning to others for help. Parents experience this from doctors, teachers, friends and family members. To put it bluntly, it is awful. We have been blessed. Our Pediatrician was the first to connect the dots. We are lucky to live 20 minutes away from one of the few specialists, Dr. K. My child's school was wise enough to know that this child, was "suddenly not himself". I applaud them for their open hearts and minds.
This was all good, but our battle is not over just yet.
This was a tough episode. An unexpected one. However it happened. We were able to move him through it with antibiotics, but I am concerned. It took only exposure to trip it off.
Studies show that if Pandas is caught early, and an IVIG is done within the first year of first episode, 80% of children recover fully from this disorder with no future episodes. My son's was done about 1 1/2 years after his first episode with 3 concurrent episodes before IVIG. Another one is in his future probably. I am grateful that we will have coverage.
I share our journey to help others. If you suspect Pandas, I would recommend following through with your instincts immediately. If your child ever contracts Strep, don't assume that the antibiotics cleared it up. Have your child retested to make sure. By doing so, you can decrease the likelihood of Pandas ever happening.
qannie
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