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Old 08-01-2013, 10:38 PM - Thread Starter
 
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Hi everyone,
I partly just feel the need to write this all out, but also would love any ideas, feedback, etc that anyone may have.
We have had two different full assessments done for 7 year old DS (the first when he was 3.5, the second in the last couple months), and the doctors all agree there is lots going on but they can't pin it down. With this most recent assessment they have ruled out aspergers because of DS' "ability to understand and manipulate other people". They thought for a while that at least one for sure was ADHD, but now they have seen him sit and do a puzzle without taking a break for over an hour and so are unsure of that.
Here is a list of his current symptoms:
-very hyperactive
-crashes into everything, climbs furniture and leaps off
-very sensitive to noises and touch
-clumsy, bumps into people and trips over things/walks into things
-trouble with gross motor, ex.has not learned to pedal a bike
-angers very quickly and becomes aggressive, often over very minor things
-screams at us if things don't go his way
-low mood much of the time
-has tics, repeats phrases under his breath
-does not want to leave the house
-worries about school
-talks very loudly and will not pause what he is saying even if someone is trying to get his attention, talks almost non-stop about the same couple topics, repeats the exact same sentence several times over
-has episodes of being very silly, laughing uncontrollably, spitting and throwing/dumping things, becomes non-verbal during this
-has a very hard time fitting in with peers
-has trouble with any change in routine, surprises,etc will cause major meltdowns
-everything must be arranged and performed "just so", ex. Putting on pants or shoes - the same foot must always go in first

He is also extremely talented artistically and very bright. He can be very sweet and kind, when he allows it to come to the surface.

Right now we are waiting for school to start again so that the psychiatrist can observe him at school (they did this at the end of last year but are still so unsure of what they are seeing that she wants to go back again. )

Does anyone have any thoughts at all? I've done so much reading and it is starting to seem that he has a little bit of a whole handful of disorders. It's not so much that we need a diagnosis, I just want to be able to understand him better and know what to do to help him. Things are so difficult right now and my husband and I are so discouraged.

Thanks in advance for any replies. smile.gif
Erin

Mama to DS 02/15/06, and DD born 08/31/09!
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Old 08-02-2013, 06:32 AM
 
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I think you need to get some medical tests done. Eyes, hearing, talking with ped about symptoms because might test for Pandas or do other bloodwork, and an EEG. Sometimes medical issues appear to be psychiatric, but although outward symptoms look similar, they do not have same treatment.
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Old 08-02-2013, 07:34 AM
 
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I would add to Melissa17's suggestion that you get tests run:  vision testing from a developmental opthomologist (trained to spot vision problems in children and treating with either glasses or vision therapy), get a full panel of allergy testing done (the discomfort from which can cause a host of behavioral and learning problems) and begin your OWN journal at home, documenting day by day, what your child eats, vs, their noted behavior.  Was it a good day, and if so, what made it different?  After a bit of time considering this, take out suspected behavior and mood "triggers" from your child's diet and see if within a couple of weeks you and his teachers notice improvement in behavior and learning.

 

From our experience, 2nd grade was a hold on tight and don't forget to breath kind of year.  Please take care of yourselves and try not to worry too much that there is no clear diagnosis.  Hopefully you have an IEP in place to support your child regardless.  If your child is 7, and entering 2nd grade, it just may be a year when you work very closely with the teacher to figure out the best ways to structure his day and encourage optimal learning. 

 

On the school end of things, make SURE your child is matched to the best possible teacher for them, and given a peer group in class that is tolerant and where there will be at least potential for friendships.  Provide a great deal of support this year to your child in providing down time, social skills classes outside of school and lots of exercise to get out excess energy. 

 

I stress this, because, often a diagnosis for very complex hard to figure out children, doesn't occur until they are eight.  Since your child has recently been evaluated and nothing is clear yet, if it was a neuropsychiatric evaluation, they actually have to wait one full year, before another evaluation can be done.  So all you CAN do at this point is hold on for another year. 

 

So, hold tight....provide lots of support to your child, and, see if you can figure out if your child has food or environmental "triggers" that can when eliminated improve behavior, and, see if they have any "hidden" problems that contribute to poor functioning.  Then, in another year, a diagnosis will, most likely, be much more clear.

 

Just to give you our personal example, my child was diagnosed with Irlen syndrome at age 8 (statistically 1/2 of all children with learning and behavioral problems have Irlen.  Google and read about it....it's a really helpful thing to treat.....) and with corrective lenses his chronic headaches went away (improving learning and mood).  He also was diagnosed with a host of environmental allergies which we began to control for (dust, cat hair etc) and we also did a restrictive diet gf/cf.

 

He was diagnosed with PDD-NOS at 8 almost 9 as at that time, it was much easier to put it all together, that he had shades of a classic "spectrum" diagnosis but not enough to qualify for the full diagnosis...hence PDD-NOS.  Since, he was also academically "smart" and had no "stims" and no classic fixed interests it was easier to "miss" his spectrum behavior of inability to read social context and poor understanding of pragmatic language since many very young children are also at different levels of understanding and learning of these skills.  He could blend in with other active boys and be silly and playful despite being socially confused by behaviors and language.  This got harder to do as he got older and his friends gained skills and self mastery but he did not.  That is why a diagnosis is easier to flesh out around age 8.  My son had had 4 previous neuropsychs before being diagnosed.

 

Best wishes
 

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Old 08-02-2013, 07:36 AM
 
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You do have an IEP in place, yes?  I was assuming so, but, if not that would be a BIG and important step.  Were there any learning and education recommendations from testing?  It sounds to me as if your child could benefit from Occupational Therapy ( gross motor and other sensory issues) and time out of the classroom for support in mood regulation and social skills support.

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Old 08-02-2013, 08:58 AM
 
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I just want to chime in here - I love everything the previous posters have said.  I wanted to offer some insights from my own experiences with my (now 17 year old) who has been diagnosed with ADHD, OCD, and Bipolar disorder.  (He's currently doing great with no medication and therapy twice a month, but it was a long, rough road to get there).

 

I wouldn't rule out ADHD just because of the puzzle - ADHD is like a coin with two sides.  On one side, ADHD kids have difficulty concentrating on things that don't hold their attention.  On the other side, they "over-concentrate" on things that absorb them, to the exclusion of all else - picture a teenager playing a video game, for example.

 

Some of what you're saying sounds like OCD.  OCD is a form of anxiety disorder, and the rituals (pants must be done just so every time), intrusive thoughts (excessive worrying about school), trouble with changes in routine, etc. sound familiar (I have it, and so do my kids - it's lovely :eyeroll).  Because it's an anxiety disorder, this could be contributing to his problems regulating his emotions.  OCD gets worse when you're stressed out, which makes you more stressed out, which makes your OCD worse...The intrusive thoughts can be a lot more overwhelming than people know - it's like your brains says, "Hey, let's think about all the bad things that might possibly happen, and play it like an unending movie in your head...let's do that.  And the more upset you get, the worse the movie gets."

 

He's bright, as you say - perfectionism might be playing a part here.  Gifted kids are frequently crippled by perfectionism. I teach gifted classes, and this is very typical problem.  The motor development could be related to giftedness, as well - your brain only has so much processing power.  If it's putting a lot of resources into intellectual development, then it's going to lag behind on some other areas, such as physical, social, emotional, etc.  Also very typical of gifted kids - it's called "asynchronous development."

 

Then there's your son's problems with regulating his mood.  Back when my son was going through his troubles, they were exploring a new diagnosis for children instead of Bipolar - something called "Temper Disregulation Disorder."  Basically, it means they get "stuck" in a feeling - too happy, too frustrated, too sad, too excited, etc, in comparison to what the situation warrants.

 

All of these things together can make for a pretty raw time.  The medicines for one set of problems will aggravate another set.  For example, the stimulants prescribed for ADHD would help my son focus but make his problems regulating his mood uncontrollable, so we had to let the ADHD go - no more gifted or Pre-AP classes, but at least his mood was stabilized.

 

I guess my advice is not to look for one magical diagnosis that will explain every behavior - he could have a number of things going on.  So my actual advice is this:  once you get a proper diagnosis (I do second a PP, in that he needs further testing from someone skilled in diagnosis when he's a little bit older), then focus on whatever his "primary problem" is and let the rest of it ride until that problem becomes more manageable.  

 

Good luck, mama - and hug2.gifto you - this is rough.  Some of this stuff just can't be "fixed" - all that is left to you sometimes is to love and support him as he grows and learns to manage himself, with your help.  It usually does improve with age - all R's friends from elementary school and Boy Scouts, all the other weird, quirky, medicated, IEP kids, are all teens now, and they are weird, quirky teens, but happy and successful, too - fun, interesting young men.

 

Holly 


So...I'm 43 and pregnant with #3 - how'd that happen?  

 

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Old 08-02-2013, 09:10 PM - Thread Starter
 
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Originally Posted by melissa17s View Post

I think you need to get some medical tests done. Eyes, hearing, talking with ped about symptoms because might test for Pandas or do other bloodwork, and an EEG. Sometimes medical issues appear to be psychiatric, but although outward symptoms look similar, they do not have same treatment.

Thanks Melissa, I tried calling our dr today and she's on holidays until next week. I will be getting him in to see her.

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Originally Posted by livinglife View Post

I would add to Melissa17's suggestion that you get tests run:  vision testing from a developmental opthomologist (trained to spot vision problems in children and treating with either glasses or vision therapy), get a full panel of allergy testing done (the discomfort from which can cause a host of behavioral and learning problems) and begin your OWN journal at home, documenting day by day, what your child eats, vs, their noted behavior.  Was it a good day, and if so, what made it different?  After a bit of time considering this, take out suspected behavior and mood "triggers" from your child's diet and see if within a couple of weeks you and his teachers notice improvement in behavior and learning.

From our experience, 2nd grade was a hold on tight and don't forget to breath kind of year.  Please take care of yourselves and try not to worry too much that there is no clear diagnosis.  Hopefully you have an IEP in place to support your child regardless.  If your child is 7, and entering 2nd grade, it just may be a year when you work very closely with the teacher to figure out the best ways to structure his day and encourage optimal learning. 

On the school end of things, make SURE your child is matched to the best possible teacher for them, and given a peer group in class that is tolerant and where there will be at least potential for friendships.  Provide a great deal of support this year to your child in providing down time, social skills classes outside of school and lots of exercise to get out excess energy. 

I stress this, because, often a diagnosis for very complex hard to figure out children, doesn't occur until they are eight.  Since your child has recently been evaluated and nothing is clear yet, if it was a neuropsychiatric evaluation, they actually have to wait one full year, before another evaluation can be done.  So all you CAN do at this point is hold on for another year. 

So, hold tight....provide lots of support to your child, and, see if you can figure out if your child has food or environmental "triggers" that can when eliminated improve behavior, and, see if they have any "hidden" problems that contribute to poor functioning.  Then, in another year, a diagnosis will, most likely, be much more clear.

Just to give you our personal example, my child was diagnosed with Irlen syndrome at age 8 (statistically 1/2 of all children with learning and behavioral problems have Irlen.  Google and read about it....it's a really helpful thing to treat.....) and with corrective lenses his chronic headaches went away (improving learning and mood).  He also was diagnosed with a host of environmental allergies which we began to control for (dust, cat hair etc) and we also did a restrictive diet gf/cf.

He was diagnosed with PDD-NOS at 8 almost 9 as at that time, it was much easier to put it all together, that he had shades of a classic "spectrum" diagnosis but not enough to qualify for the full diagnosis...hence PDD-NOS.  Since, he was also academically "smart" and had no "stims" and no classic fixed interests it was easier to "miss" his spectrum behavior of inability to read social context and poor understanding of pragmatic language since many very young children are also at different levels of understanding and learning of these skills.  He could blend in with other active boys and be silly and playful despite being socially confused by behaviors and language.  This got harder to do as he got older and his friends gained skills and self mastery but he did not.  That is why a diagnosis is easier to flesh out around age 8.  My son had had 4 previous neuropsychs before being diagnosed.

Best wishes

 
Thanks so much for all your thoughts. I have made very weak attempts at recording his diet and behaviours in the past but never stuck with it for long...I will start doing that again. I will also be asking our dr about testing.

You have me so scared by your description of grade 2!! That was basically what grade 1 was for us. We do not have an IEP, and no one at the school has even brought this up. I will be looking into that, thank you. Unfortunately next year our school is doing all split classes, so DS is in a 2/3 split AND he has two different teachers, one in the morning and the other in the afternoon. There is only one child that DS knows from his grade 1 class that will be with him next year. It's very hard to know how this will go....I imagine at first okay, until the "newness" wears off.
I will try my best to take your advice and not worry so much just yet about a proper diagnosis!
Quote:
Originally Posted by KnockedUpButtercup View Post

I just want to chime in here - I love everything the previous posters have said.  I wanted to offer some insights from my own experiences with my (now 17 year old) who has been diagnosed with ADHD, OCD, and Bipolar disorder.  (He's currently doing great with no medication and therapy twice a month, but it was a long, rough road to get there).

I wouldn't rule out ADHD just because of the puzzle - ADHD is like a coin with two sides.  On one side, ADHD kids have difficulty concentrating on things that don't hold their attention.  On the other side, they "over-concentrate" on things that absorb them, to the exclusion of all else - picture a teenager playing a video game, for example.

Some of what you're saying sounds like OCD.  OCD is a form of anxiety disorder, and the rituals (pants must be done just so every time), intrusive thoughts (excessive worrying about school), trouble with changes in routine, etc. sound familiar (I have it, and so do my kids - it's lovely :eyeroll).  Because it's an anxiety disorder, this could be contributing to his problems regulating his emotions.  OCD gets worse when you're stressed out, which makes you more stressed out, which makes your OCD worse...The intrusive thoughts can be a lot more overwhelming than people know - it's like your brains says, "Hey, let's think about all the bad things that might possibly happen, and play it like an unending movie in your head...let's do that.  And the more upset you get, the worse the movie gets."

He's bright, as you say - perfectionism might be playing a part here.  Gifted kids are frequently crippled by perfectionism. I teach gifted classes, and this is very typical problem.  The motor development could be related to giftedness, as well - your brain only has so much processing power.  If it's putting a lot of resources into intellectual development, then it's going to lag behind on some other areas, such as physical, social, emotional, etc.  Also very typical of gifted kids - it's called "asynchronous development."

Then there's your son's problems with regulating his mood.  Back when my son was going through his troubles, they were exploring a new diagnosis for children instead of Bipolar - something called "Temper Disregulation Disorder."  Basically, it means they get "stuck" in a feeling - too happy, too frustrated, too sad, too excited, etc, in comparison to what the situation warrants.

All of these things together can make for a pretty raw time.  The medicines for one set of problems will aggravate another set.  For example, the stimulants prescribed for ADHD would help my son focus but make his problems regulating his mood uncontrollable, so we had to let the ADHD go - no more gifted or Pre-AP classes, but at least his mood was stabilized.

I guess my advice is not to look for one magical diagnosis that will explain every behavior - he could have a number of things going on.  So my actual advice is this:  once you get a proper diagnosis (I do second a PP, in that he needs further testing from someone skilled in diagnosis when he's a little bit older), then focus on whatever his "primary problem" is and let the rest of it ride until that problem becomes more manageable.  

Good luck, mama - and hug2.gif to you - this is rough.  Some of this stuff just can't be "fixed" - all that is left to you sometimes is to love and support him as he grows and learns to manage himself, with your help.  It usually does improve with age - all R's friends from elementary school and Boy Scouts, all the other weird, quirky, medicated, IEP kids, are all teens now, and they are weird, quirky teens, but happy and successful, too - fun, interesting young men.

Holly 

Thanks Holly, it is encouraging to hear stories of very positive outcomes with kids who were much like DS. It's so hard not think about where he'll be with this when he's 17...25...30, etc. that is fantastic that your son is doing so well.
I agree about your comment about ADHD and the puzzle. DS can also concentrate for hours at a time on art projects, to the point of tuning all else out. And if he's really absorbed in something, it's almost magical how suddenly the fidgety/hyperactive behaviours disappear.
OCD and anxiety are definitely on the table as well. I have anxiety (and so does most of my extended family), as well as a lot of ADD symptoms, and it seems that DH has some OCD like tendencies (though not enough to interfere with his/our life).

Thank you again for the replies, this is really helpful!! smile.gif

Erin

Mama to DS 02/15/06, and DD born 08/31/09!
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Old 08-02-2013, 09:25 PM
 
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This sounds very much like either PANDAS or PANS to me. We went through everything you're going through before figuring this out with my son. Biomedical treatments have been hugely positive for him and we are no longer dealing with the oppositional, OCD, crazy anxiety, quirkiness that we struggled with since he was a baby. I don't come on mdc much anymore, but feel free to pm me if you want additional resources. You do not need to meet 100% of criteria to get a pans/pandas diagnosis. A MAPS physician would be the best person to help you.
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Old 08-03-2013, 05:33 AM
 
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I was going to suggest PANDAS. Work with a good biomedical physician can do so much good for kids with OCD and spectrum issues.

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Old 08-03-2013, 05:33 AM
 
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Hi APToddlermom, I'm so glad you found your way to further help.  How old is your son now?  I'll add to your suggestion for the poster, because I think it is a wonderful idea to test for strep levels with a Maps doctor.  We never went that route ourselves to "officially" treat my son  or Pandas but we periodically treat him with the homeopathic strep nosode and that works brilliantly for us.  If you may remember from many of my posts, we are a family who uses homeopathy really well, and we found that treating for strep alleviated irritability, mood lability and periodic facial tics.  But, we also used a lot of other nosodes as well, specifically vaccine nosodes.  Strep lives in the body at all times and when a persons resistance and natural immunity is low due to poor digestion and or other chronic infections, the person may live with a certain amount of chronic strep, which never rises to the level of a full blown infection, but nevertheless, the body has been unable to successfully regain balance of good bacteria to bad.  It's like living with a chronic fungal infection...which you can see on the skin.  A chronic strep infection can sometimes appear on the skin, other times, through behavior.

 

I will put my plug in for homeopathy (it really works!)  as well as the suggestion for a MAPS doctor.  If you use homeopathy or want to learn more about it don't work with a classically trained homeopath but someone, like a cease practitioner, who is trained in Isopathy as well as the use of nosodes.  Cease homeopaths are wonderful and I used a fantastic one for a number of years.

 

Good luck!!
 

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Old 08-03-2013, 09:40 AM
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Tics and OCD often go together.  


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Old 08-03-2013, 09:27 PM - Thread Starter
 
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Thanks so much for all the replies. I am just typing from my phone so can't respond to each of you right now, but will be back.

I have never heard if PANS/PANDAS before, and I have read so many books, website articles and so on. For those that have mentioned this, can you say what it is that makes you think PANS/PANDAS, rather than OCD/anxiety/ADHD?
From what I have read so far it seems the most important part is the sudden onset of symptoms. I would say with DS it has just been a slow, steady increase in certain symptoms, and some that are always changing. He has challenged us since the day he was born. smile.gif Can this be true of PANS/PANDAS?

To add to the mix: I think he may have had a reaction (hives) to red food colouring tonight. I've suspected behaviour changes from ingesting red dye before, but have never seen hives. (He got some food colouring on his fingers while making a volcano experiment).

Erin

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Old 08-03-2013, 10:49 PM
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Thanks so much for all the replies. I am just typing from my phone so can't respond to each of you right now, but will be back.

I have never heard if PANS/PANDAS before, and I have read so many books, website articles and so on. For those that have mentioned this, can you say what it is that makes you think PANS/PANDAS, rather than OCD/anxiety/ADHD?
From what I have read so far it seems the most important part is the sudden onset of symptoms. I would say with DS it has just been a slow, steady increase in certain symptoms, and some that are always changing. He has challenged us since the day he was born. smile.gif Can this be true of PANS/PANDAS?

To add to the mix: I think he may have had a reaction (hives) to red food colouring tonight. I've suspected behaviour changes from ingesting red dye before, but have never seen hives. (He got some food colouring on his fingers while making a volcano experiment).

Erin

 

I think you're right.......PANDAS has a very sudden onset.  It doesn't sound like what you are dealing with.

 

If you suspect dyes are part of the problem, you may want to look into the Feingold diet.  And how much sleep does he get?  At least 10--11 hours per night?  Sleep deprivation can be a big problem, too.


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Old 08-03-2013, 11:09 PM
 
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Erin,  You might ask about a sleep study.  Whether he has a sleep apnea related to a physical problem or a brain issue that is severely affecting his sleep patterns, it could make sorting out his symptoms all the more easy to establish.    

 

Maybe somebody who has been down this avenue can weigh in on how helpful it is.  At this point it does sound very possible that there is more than one thing going on and a process of careful elimination is going to take time and patience.  

 

I too think occupational therapy would be great when you are a bit closer to establishing the roots of what is going on,, especially with a therapist who is experienced with "sensory defensiveness". It basically is supposed to help him tolerate change of most kinds a lot better. 

 

Sometimes a sensory perception disorder can cause severe anxiety and behavioral symptoms, particularly in a child that age.  

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Old 08-04-2013, 07:35 AM
 
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Along the lines of Livinglifes thoughts on allergies, have you ever kept a food diary? Just document what was ate and also note some of the following behaviors. You might also note description of where behaviors took place, mood, etc. Even if you do not isolate an allergy, you might find by documenting different things that trigger a behavior. A pattern could emerge that could help better direct testing.
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Old 08-04-2013, 08:07 AM
 
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FYI- It took a long time for the traditional medical community to even acknowledge panda's.  While the "traditional" and "conventional" approach says that pandas are sudden onset after a case of strep, in fact, while not acknowledged by doctors, children and adults can be effected by chronic low grade strep that the body never mounts an effective immune response to. 

 

You can google a great deal of helpful information on the subject at alternative health sites.  It is worthwhile exploring because conventional medicine can take a while to decide whether a phenomena is real or not, meanwhile a great deal of suffering can be ameliorated if you do your own research and find doctors willing to think outside the box like Dan doctors and Maps doctors.

 

I am sorry to hear that you don't have an IEP.  Your child NEEDS an IEP.  Maybe that needs a separate thread for folks to weigh in on since there are many here who are experienced in advocating for their child.  I am very surprised that he doesn't.  You need to find out what your child's rights are and what your rights are as their parent.  The school is obligated to provide educational and neuropsychological testing, as well as occupational testing (which is sounds like he sorely needs) in order to provide a determination if support in school is warranted and then a plan to provide that support.  Off the top of my head I can think of a number of things that the school can do to help your child modulate their sensory experience of school, learn social skills, and help him learn executive functioning skills in managing his emotions.  I hope that others weight in too here.
 

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Old 08-04-2013, 05:22 PM
 
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Winnie, to answer your question about why people think you should consider Panda's, it's because you mentioned in your description that your child has tics.
 

 

Of course, with everyone's suggestions, your head may be spinning!  I hope that you can sort all this out.  I had a "complex" kiddo as well, and I know how overwhelming all this is.  He's now 11 and while I trust he's not completely "sorted" we understand him very well now.  It's worth it to dig in.  You do come out the other side with this, seeing improvements.

 

Let us know if you need any more clarification or if you need to, start another post on IEP's....

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Old 08-04-2013, 09:09 PM - Thread Starter
 
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Thank you. I have had to re-read all the responses several times to try to absorb it all.
Last year it didn't seem that DS was in need of anything else at school because at that point we were only dealing with his usual quirkiness and adhd stuff. His teacher helped him so much, and he often spent time with the counsellor working on social stuff. It wasn't until the last month of school that all this anger and aggression began. We met with the school once with just 2 weeks left. So, I will research IEPs and talk to them about that in September.

Tonight DS punched me very hard in the stomach. I just don't know what to do anymore. I want my sweet little boy back.

Mama to DS 02/15/06, and DD born 08/31/09!
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Old 08-04-2013, 11:25 PM
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Winnie, to answer your question about why people think you should consider Panda's, it's because you mentioned in your description that your child has tics.
 

 

 

 Tics are much more commonly caused by genetic factors.  


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Old 08-07-2013, 11:01 PM
 
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No, tics are definitely not much more likely caused by genetic factors unless you mean to
say genetic factors that cause one's immune system not to function properly and tics to develop as part of the autoimmune process.

PANS is separate from PANDAS in that strep does not have to be present. My son goes into PANS flares from any bacterial or viral illness. Understanding of these autoimmune conditions is growing, and it is true that you do not need to have a very sudden onset for PANS/PANDAS to be the cause of your child's issues. My son was difficult from the day he was born, literally. In hindsight, I can recall things he did as a baby that were OCD. It was not until he developed a brand new tic and his handwriting went downhill overnight that I finally realized what was going on. However, he had been dealing with PANS for literally his whole life. My son is also sensitive to food dyes, many foods, etc. This is common with these kids. Their immune systems are not functioning properly because of any number of environments assaults on their developing bodies (vaccines, metals, gmos, pesticides, emf, etc). Many times that results in allergies and intolerances too.

We have had tremendous relief from the horrible day to day problems we had with my son (severe OCD, anxiety, aggression, tics) by taking the biomedical approach. I did most of the research myself and later started with MAPS doctor. I am part of several Facebook groups that may be helpful to you. Pm me if you'd like and I can give you the information. They're closed private groups. You don't have to suffer like this and neither does your kiddo.
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Old 08-08-2013, 12:17 PM
 
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OP, are the evaluators using standardized instruments in their evaluations?  The rule out for an ASD should be "does not meet criteria according to ___ tool" rather than a narrative remark.  Same with ADHD; look up hyperfocus.

 

I agree with others to investigate medical causes, along with processing issues (eyes, ears, sensory).

 

The exact etiology of tics is varied as I understand. Could be PANS, could be genetic, could be a drug-reaction, could be psychological, could be an under-developed basal ganglia, or other.


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Old 08-08-2013, 01:40 PM
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No, tics are definitely not much more likely caused by genetic factors unless you mean to
say genetic factors that cause one's immune system not to function properly and tics to develop as part of the autoimmune process.
 

 

So, Tourettes is an immune-system dysfunction?  

 

I have a child with tics.   I think we do our kids with tics a great disservice to try to find the "Holy Grail" that will fix them instead of just loving them for who and how they are.  My 2 cents.  (Of course I agree with feeding him good food, etc., but I don't expect it to change him.) 

 

PS.  I see similar parallels with this and the Autism debate............some people accept it as genetic and don't try to change their kids, whereas others insist it is environmental and do everything under the sun to change it.   I just wanted to let the OP know that there are, in fact, two (or more) camps of theory on tics, and not just the PANS/PANDAS one.  


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Old 08-08-2013, 03:17 PM
 
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I have done a great deal of my own soul searching about such questions.  At the risk of sounding deep here, I think for me, it makes sense to live with the uncertainty about the actual root causes.  What does it really matter?  In fact it likely is all of the above!  I believe the cause of many modern epidemics are multifactoral.  I believe it can and is true that tourettes, autism, cancer, what have you, is caused by BOTH genetic predisposition AND, environmental toxins, AND dietary deficiencies AND immune dysfunction AND heavy metal exposure ETC.

 

I am a proponent of living with that kind of uncertainty because I don't NEED to know the answer.  I also believe it is possible to accept my child but do everything possible to allow his "BEST" self to unfold.  I would suggest that that is not "fixing" but restoring him to a physical and intellectual state more ideal for growth and development. 

 

Who grows best full of heavy metals, poor digestive flora, exposure to pesticides and fed foods that have little nutritional value?   As long as I don't pretend to "know" what his "BEST" self is, just, help him be healthy, strong and happy, I am allowing his unfolding, not controlling it, the way any mother does for their child.  That these kind of changes in life style can make a very big difference for children with developmental disorders is well discussed here and in other places where parents gather.  But, I think, inherent in the difficult process of raising such a child,  is a real grief we all share, no matter how we go about raising our child.  We have to reestablish love and acceptance for who they are, at every stage of raising them.  There is no argument about that.  I have no idea WHO my son will become but I will always try my best to love and accept him while I do everything I know to help him be strong and healthy.    That is duality, paradox....parenting for me, as spiritual practice....

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Old 08-08-2013, 05:53 PM
 
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I have a child with tics.   I think we do our kids with tics a great disservice to try to find the "Holy Grail" that will fix them instead of just loving them for who and how they are.  My 2 cents.  (Of course I agree with feeding him good food, etc., but I don't expec Do you need side walls or bug screen? t it to change him.) 
Treatment can change everything in some situations. I would hesitate to stop searching this early on. The op's ds has more going on than tics, so I hope they keep working with drs and psych to find best course for her ds.
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Old 08-08-2013, 06:37 PM
 
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Wow...you must be so overwhelmed.  I have a few thoughts.  My DS has ADHD mixed type, he has bursts of anger when things do not go his way, he hates changes to the schedule and needs frequent cueing to cope with those changes.  He can be very impulsive, and frequently makes impulsive decisions without thinking.  He is also very smart, so it took us a while to figure out what was going on since he only struggles in writing (his brain seems to move faster than his hand and then he gets lost and frustrated).  However, he can easily become engrossed in activity for hours (especially Legos), to the point of distraction.  You have to physically touch him to get his attention (and then give him cues to how much time he has left).  We have an IEP in place that allows for shortening of tests & assignments (so he does not get bored).  He can also be pulled to be in a room alone.  We worked a lot last year on him being able to verbalize that he needed to be alone to get himself together.  This was a huge step for us, and he has gotten much better at processing his feelings and not reacting so badly.  He also has periods where he hates leaving the house, but once we get out, we can string together several activities.  I suspect it is because he feels more in control at home.  

 

A good match for teachers is essential.  There are fantastic teachers out there, but not all of them are good for my DS.  So we talk at the end of each year with the AP about what we need in a teacher and what really worked for us the previous year.  For us, that means that the right teacher takes precedence over being in the GT class.

 

I would definitely recommend some medical testing.  At minimum a dilated eye exam by a pedi opthomologist (not an optometrist) and a complete hearing screening by an audiologist (not just the screening they do in the pediatrician's office).  I would also ask for a neurology work up, since there are tons of neuro issues that could be causing these problems.  

 

In school our kids sit in groups, but DS had a desk off to the side where he can work if he is feeling distracted (or just annoyed by people).  He has a cardboard divider he can put up that blocks the visual distractions.  Our therapist suggested noise cancelling headphones, but we want to use that as a last resort.


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Old 08-09-2013, 09:20 AM
 
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I have done a great deal of my own soul searching about such questions.  At the risk of sounding deep here, I think for me, it makes sense to live with the uncertainty about the actual root causes.  What does it really matter?  In fact it likely is all of the above!  I believe the cause of many modern epidemics are multifactoral.  I believe it can and is true that tourettes, autism, cancer, what have you, is caused by BOTH genetic predisposition AND, environmental toxins, AND dietary deficiencies AND immune dysfunction AND heavy metal exposure ETC.

 

 

I can understand how the overwhelmed mother doesn't need to focus on the bigger questions because her job is to love and accept the child she is gifted with ultimately.  But, the idea of accepting it as a matter of philosophy just doesn't make sense to me.  Most people I know who were sick in some way had to really crusade for themselves to figure out the root cause, and hence, the best treatment.  Children like my nephew have been allowed to linger with problems that needed therapy following this philosophy.  It takes courage to ask the questions.  There are ever increasing success stories for children with obscure health and developmental problems in our culture because of the very fact that we don't just accept, we challenge and ask questions.  

 

I do however see very strongly the point that a child needs to not feel that something is "wrong" with them, and that there is a fine delicate line between helping them and turning them in to projects.  I think the more we normalize this for all children, the better individuals will come to feel about it.  This facet of treating children alone needs a great deal more consideration.

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Old 08-09-2013, 10:42 AM
 
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I haven't read all the replies, but it sounds like your son might have sensory processing disorder (apologies if it has already been mentioned). Good luck mama :)
 


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Old 08-10-2013, 10:56 PM - Thread Starter
 
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Sorry I haven't gotten back to this thread sooner...thanks so much to everyone for all of your thoughts and suggestions.
Although I certainly do love and accept my son for who he is - he is very unhappy, angry even, and I want to help him so that perhaps we can make some aspects of his life easier and more enjoyable.

From my reading I think he fits SPD, anxiety/OCD, and ADHD. However SPD could possibly be causing the anxiety, aggression, and hyperactivity. None of these really cover any social stuff though...the fact that he rambles on about a single topic without pause, and doesn't seem to understand the give and take of a conversation. Hmm.

Mama to DS 02/15/06, and DD born 08/31/09!
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Old 08-11-2013, 07:49 AM
 
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The "uncertainty" I feel comfortable living with related to the root causes of my son's issues, comes from the reality that we live in a world that respects the "scientific method" and not anecdotal evidence, parental wisdom and age old wisdom about the body from other types of healing practitioners like homeopaths, acupuncturists etc.  Most parents I've met, and I include myself in this, have doubted my own knowing and second guessed my own questioning because it is contradicted by the doctors I encounter.  There is also an disconnect here on Mothering where parents question the validity or help from dietary interventions or heavy metal detox because it hasn't been "proven" to be helpful by rigorous medical studies.

 

We are not disagreeing quite to the contrary.  I just want to be understood....because while I am now comfortable living with the disconnect that comes from having a pedi for my children who does not agree with my parenting choices,  many other parents are struggling and will continue to struggle with this disconnect and will give in to the society group consensus. 

 

To me, this is a spiritual practice, continually reminding myself, and coming back to myself....saying, what do I believe to be true, does it hold meaning for "me" and how to do I hold fast to my beliefs when other would try to dissuade me?  I live in this kind of "uncertainty" in that do I trust what I know even if there is no "proof" in the conventional sense. 

 

To the original poster who is asking "what is going on" for their child, and what kind of diagnosis fits, I wanted to remind her that she wrote this post saying that her child was so complex that no diagnosis has been clarified yet so she is living with a great deal of uncertainty not just about what is going on but how to help.

 

Please focus on asking the school to evaluate him for an IEP so that even without a diagnosis he can be supported in the classroom in a structured goal oriented way.  While you have to wait another year to get a neuropsych you don't have to wait to get him help, so, you can also look into private speech (for social skills groups) and private OT.

 

Good luck.
 

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Old 08-11-2013, 09:59 AM
 
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Sorry I haven't gotten back to this thread sooner...thanks so much to everyone for all of your thoughts and suggestions.
Although I certainly do love and accept my son for who he is - he is very unhappy, angry even, and I want to help him so that perhaps we can make some aspects of his life easier and more enjoyable.

From my reading I think he fits SPD, anxiety/OCD, and ADHD. However SPD could possibly be causing the anxiety, aggression, and hyperactivity. None of these really cover any social stuff though...the fact that he rambles on about a single topic without pause, and doesn't seem to understand the give and take of a conversation. Hmm.

Kids with those diagnoses often have social communication and self-regulation issues.  There's so much going on internally that it's hard to pick up on and respond appropriately to external information.   They live like the radio is blasting loudly, everything feels like sand paper, and they can hear the lights humming and the kid four seats back clearing his throat.  That doesn't leave a lot of attention and judgement available to deal with the social world or think before responding or to feel settled. 

 

Anxiety is frequently secondary to a primary diagnosis, an outcome of the child's confusion and frustration navigating their world with their unique processing challenges.  OCD can be a primary diagnosis, but it can also be an extreme approach to trying to make the difficult world work for you by trying to control it.

 

It is also pretty common for complicated kids to not settle into a diagnosis until they're 8-10, and to have diagnoses change over time.

 

I found this book very comforting when my son was around your child's age:  When the Labels Don't Fit.

http://www.whenthelabelsdontfit.com/Site/Sample%20Strategies.html

 

You might also like the Eides' work.  There's a lot of detail, but they address all sorts of processing issues (ie SPD, also ADHD).

http://www.amazon.com/MISLABELED-CHILD-UNDERSTANDING-LEARNING-SUCCESS/dp/B0016IYQV4/ref=sr_1_1?s=books&ie=UTF8&qid=1376236610&sr=1-1&keywords=mislabeled+child

 

Even if your son doesn't have SPD, the approaches in the book The Out of Sync Child Has Fun can help keep his engine running "just right" so he feels better.  We all have sensory issues, so these approaches can help even if our sensory system isn't past the threshold of a diagnosis. 

http://books.google.ca/books?id=JrSiX9ZWxAkC&printsec=frontcover&dq=out+of+sync+child&hl=en&sa=X&ei=hrMHUvWGFIrmiALM3ID4Aw&redir_esc=y#v=onepage&q=out%20of%20sync%20child&f=false

 

This is an interesting read:

http://www.thenewatlantis.com/publications/the-mislabeled-child

 

I really like the materials by Garcia Winner, and your son might really enjoy Super Flex, which is a comic-book style curriculum for social thinking and self-regulation:

http://www.socialthinking.com/books-products


Mom to a teenager and a middle schooler.

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Old 08-11-2013, 02:23 PM
 
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The "uncertainty" I feel comfortable living with related to the root causes of my son's issues, comes from the reality that we live in a world that respects the "scientific method" and not anecdotal evidence, parental wisdom and age old wisdom about the body from other types of healing practitioners like homeopaths, acupuncturists etc.  Most parents I've met, and I include myself in this, have doubted my own knowing and second guessed my own questioning because it is contradicted by the doctors I encounter.  There is also an disconnect here on Mothering where parents question the validity or help from dietary interventions or heavy metal detox because it hasn't been "proven" to be helpful by rigorous medical studies.

 

 

I have seen a lot of kids and people die in countries and villages where they have decided their age old wisdoms and anecdotal evidence demanded priority.   We can call most  doctors arrogant and short-sighted, but they aren't all like that.  I agree there is a disconnect, but it comes from both sides not listening to each other. It's not one-sided.

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