Later emergence of symptoms?

[Cutiepie]

Hello,

I just wrote out a really long message and it disappeared. I hate when that happens!

Rather than retype the whole thing, I'm just going to sum it up and get to my question.

My 8 year old granddaughter has been diagnosed on and off the autism spectrum since she was 3 years old. Some signs have been classic, such as repetition, meltdowns, sensory issues, and delayed speech and learning.

But the reason her psychiatrist has been hesitant to truly call it autism is because she is a cheerful girl for the most part and she socializes really well. She now has a vocabulary ahead of her peers, though she is way behind in all other areas. She is also extremely perceptive and sensitive to her surroundings and the people in them. So her doc says it could be something on the autism spectrum, but it would be very atypical.

So the game plan has been to keep her mainstreamed in school, give her ritalin to help her focus, and work with the therapists.

Over the last month some new behaviors have emerged. When she gets a little overwhelmed she has started freaking out when people are around and says stuff like, "That guys staring at me. I don't want him to stare at me." She has done this even with a little friend of hers. She'll say this over and over and starts picking her lip (that's what she does before she goes into a meltdown).

Then just this week she started rocking while her mother was trying to engage her in her reading homework. She wouldn't focus and just rocked.

So my question is, can symptoms like the fear of strangers and rocking emerge so much later than the first symptoms (like 5 years later)? Can someone on the autism spectrum actually regress or go backwords (not sure how to say it) at a later age?

I hope I've communicated this okay. I would love to hear what your experience and studying has taught you about this.

Thanks,
Julie

[peglem]

Has she had any illness or infections recently? Strep, in particular can cause OCD type behaviors and melt downs.

[Cutiepie]

No, she hasn't been sick in a very long time. We can't think of anything environmentally that has changed recently. Things are on an even keel at home and at school, as far as we know.

I have wondered about blood sugar swings. Do you know anything about that?

[LIZARD]

I have wondered about blood sugar swings. Do you know anything about that?

Blood sugar swings don't involve paranoia, which is what this sounds like to me. I have always had hypoglycemia and never experienced that. I'd get a psych eval.

*hug *hug *hug


LIZARD :)

[Mother's Heart]

Did she start the Ritalin yet? If so, did that coincide with the emergence of the new symptoms?

Can they get a second opinion/evaluation on the ASD question?

[Keggy]

If she has been taking the ritalin for a period, even a few months that would be my first suspect. It can lead to feelings of paranoia. Because Ritlan will also decrease her appetite she can have a decrease in blood sugar (which if you ask me liiks like paranoia, I see it all the time) Drops in blood sugar can make you weepy, moody and easily irriatated.

You may find lots of our children are cheerful and try to socialize, and even appear to be socializing at that age. It falls under the PDD/nos (not otherwise specified pervassive developement disorder). If it was my child I would avoid the meds (which is what I did). To me the body needs to do things to work things out and when we medicate we are suprressing the bodies natural ability to heal. I feel these kids bodies are working really hard to fix the problems only to be medicated into new ones.

[Keggy]

BTW.. I have seen a number of kids on this drug go from being a bit paranoid to having hallucinations (mostly audio). Instead of stopping the ritlin and giving the body a long period of rest, the tests and drugs start to pile on. I hope this does not happen for your granddaughter. I beleive the problems she has can be helped without drugs with the help of a change in parenting style.

[Kristen (ColeysMom)]

My son fell into the atypical bucket. Some symptoms that were not typical and some typical that he lacked. He was given the PDD-NOS diag for that reason. But it turned out to be food related. It didn't all go away once we figured out what it was & removed it. He had a LOT of catching up to do, and still has some to go.

I agree with Keggy regarding the meds. I would also look closely at her diet. It may be something there.

[MaryEvelyn]

Kyle responded this way when they put him on Stratera (SP) The behaviors disappeared when we took him off of this drug.

[Cutiepie]

Thank you all so much. Excellent suggestions to follow up on, especially the Ritalin.

She will be seeing the p-doc in a couple of weeks. I'll make sure that my daughter asks about the Ritalin and possible side effects.

In an odd way, it is reassuring to know that kids on the spectrum can socialize pretty well. This is pretty much the only thing that keeps the doc from definitely saying she's on the autism spectrum. Not that I want a name for it for the sake of having a name, but I think defining it a little better helps the school specialists work with her, rather than just saying that she is cognitively delayed as they've been saying the past year.

Diet doesn't seem to make a difference. She has been on a very strict gluten/dairy/sugar free diet for quite awhile. In fact, they just took her off of it as it didn't seem to make any difference and she wasn't gaining weight like she should have been.

Thanks again and I'll check back later.

[Kristen (ColeysMom)]

It sounds like it could be related to the combo, addition of the med plus diet change. Who knows which is the larger culpret...

There was something else that occured to me after I posted, related to my other post...

One thing that I was surprised to discover is that things like toothpaste and shampoos have things in them that would affect my son as well. Before the doc discovered the fructose intolerance we had noticed stuff like tylenol and benadryl made him psycho, not hyper, certifiable... so it was a VERY rare instance when he would get that...but then after the Dx (that made sense) but we couldn't believe that brushing his teeth or putting certain lotions on him and other things would affect him as well.

I just can't believe that there is sugar in toothpaste...I mean what the heck kinda sense does that make...but there is...

Ok, so my point is that you gotta look at everything that comes in contact, not just what goes down the hatch, ya know...

I hear you on the weight gain thing too...it's a constant struggle here too...meat has become our friend here...we load him up on it BIG TIME!

The first time that he began gaining weight at a respectable rate was after we began treating him for overgrowth.

There are loads of reasons that likely contributed to an overgrowth, but I think the main reason was slow digestion. His body didn't like what we were giving him and it sat there for the microbes to feed off of, also altering his appetite. So something else to look at too, particularly if she's had antibiotics...my son only had 2 rounds of it, but one was at 3 days old!

I think that's worth looking into as well if there is evidense of food intolerances.

[RathyKay]

Things have been crazy and I haven't been posting over here lately. Some of what you posted reminds me of a girl at church. She has Turner's syndrome http://en.wikipedia.org/wiki/Turner's_Syndrome. She has a few quirks that remind me of autism, but she is quite the chatty Kathy. Anyway, I was wondering if your granddaughter has had any genetic testing?

[Keggy]

Just wanted to say if it was turners syndrom they would have known it right away. It falls under the pdd category, the only problem is that the doctors do not realize that our kids can be cheerful and socialize well (mostly because they should be dx as aspergers)

I don't think anybody answered your original question, about whether our kids can regress as they get older. They can, but it seems to be a three step forward two step backward type of thing. This could be the case with your granddaughter but, like I said before I bet her meds are playing a large part in her new behaviors.

I have two more things to add... the school will have a dx, most likely on the autism spectrum because they have so few to choose from (which most parents freak out about) and the second thing, keep in mind the doctor has drug salesmen who come to his/her office and tell them all the wonderful things their medications can help.

Doctors are trained to use medication for interventions and tend to be a bit blind to certain things, its the nature of modern medicine. Don't expect your doctor to jump on the bandwagon to say that the meds are causing the problems. Especially in this day and age, where its almost impossible to sue them for malpractice and they get such lovely incentives from the pharm manufacturers.

You can do your own research and find how many parents of kids on ritlalin you can find that have had reactions like this, won't be hard to find them either.

[Kristen (ColeysMom)]

I agree with how Keggy described the 3 steps forward 2 back...in our particular experience the 2 back has been precipetated by something. I suspect it's similar with others as well and didn't want that to sound like a mysterious event.

I our case, an illness (use of meds or fever or dehydration or low blood sugar could all be the cause alone but likely it was a combo), an over-exposure of fructose, a vaccination, or anything else that stressed him out...even a change in routine, like transitioning to preschool from EI, or meals laced with additives & chemicals (McDonalds, etc).

He will still take backward steps today, but they are not as large as they once were, and they are no where near as frequent since removing the fructose. The last major regression he had was a (doctor advised) fructose trial that lasted 2 weeks and set him back 10 months, that was at 3.5yo. Exposure to fructose used to make his blood sugar swing like a pendulum, from one exposure it used to rise & fall dramaticalyy for days sometimes weeks. The trial took place over the summer, and the following summer school wouldn't let him have it off, they felt it was partially due to the break...but at home we could see more clearly what had transired. I tend to believe that it was the BS swings more than anything...I believe they are what caused his seizures and in turn the regression...that's just my opinion though, the doctors never wanted to 'test' that idea in the hospital with electrones & things.

Today, he is tolerating fructose MUCH better and does not have these large regressions. His behavior, and even his health does seem to falter a bit from exposure, but participating in a B-day party (or whatever) does seem to have a much more positve effect than negative. This I strongly believe is related to the overgrowth treatment he's been on.

So lots of rambling, just to make a point that yes steps forward & steps back...behavioral swings, really good days & really bad days...which one is REALLY my child...type situations...but from what I have seen here, at home, and from what I've read on the forum, there does seem to be a cause or a trigger...which can vary by child.

Does everyone agree with that?

[Keggy]

There may be a cause or a trigger, or not. I just know that often these regressions and leaps are not the result of what we think they are. I went through the eliminations of foods and vitamin therapies years ago (which was just awful) etc.. with dd and saw leaps and regressions that eventually went away. It seems our kids react when *something* is being done, good and bad, its the old observer notion... if someone is watching something happens otherwise it doesn't exist.

You honestly can not be 100% on what does and does not work over the long haul. After my dd had her surgery we had a few leaps and then nothing, then suddenly a huge leap and more to follow. I suspect the surgery was the cause, but how can anybody know for certain? Some things that change can be the result of something else, and some may take a period of time to show an effect.

Plus, you have to remember that nt kids will have issues also.

[Kristen (ColeysMom)]

That's true. When we were monitoring Coley's BS, and on a prescribed feeding ritual of every 2 hours, as though he was diabetic (although tested negative to that a well as thyroid issues), when he hadn't been exposued to any known things, yet it swung anyway, we watched him painfully as he regressed...it was only in retrospect that his ped was able to determine yet another 'trigger' and that was a growth spurt.

He didn't have many of these, skinny and small...just one reason food was a challenge to us...but when we managed ALL the things we were told too, yet still we hit a bump we were stumped...then later after our routine weight/growth checks...well it was a bitter sweet thing...but yep, a 'normal' thing...but a stressor nonetheless.

[Cutiepie]

Sorry I disappeared for a week. Life is crazy!

Regarding fructose - it's not in her diet at all. Her mother is a nutrition fanatic, not only for her daughter's health, but her own (she has MS). I think it's very unlikely that the problem is dietary. As far as environmental allergies, we haven't noticed anything unusual, but how can you really tell??

I looked up the Turner Syndrome and I really don't think it is that. Thanks for the suggestion, though.

I did encourage my daughter to talk to the doctor about whether or not the medication could be causing her withdrawal/regression. She goes in tomorrow. I hope she follows through and asks the doctor.

Keggy, you said, "the only problem is that the doctors do not realize that our kids can be cheerful and socialize well (mostly because they should be dx as aspergers)." Do some of you have children diagnosed with autism who are social and cheerful? Does that throw off your child's doctor? My granddaughter's doctor just can't seem to wrap his mind around the idea that she could be social and autistic! He keeps flip flopping on the diagnosis.

Thanks again!

Julie

[Keggy]

Keggy, you said, "the only problem is that the doctors do not realize that our kids can be cheerful and socialize well (mostly because they should be dx as aspergers)." Do some of you have children diagnosed with autism who are social and cheerful? Does that throw off your child's doctor? My granddaughter's doctor just can't seem to wrap his mind around the idea that she could be social and autistic! He keeps flip flopping on the diagnosis.


Absolutely! When my daughter was young, and people started to notice something was off her pediatrican said everything was normal. I thought something was amiss, because I found her to be unusal.. gifted yet missing something, her father felt she was perfect. We had that pediatrician for at least 3 years, he never saw anything. Never even told him about her being evaluated by several other docs (psychologists) and dx. Her neurologist who worked with kids like her had a huge problem with her intelligence and friendliness, but he could see something was off as well (mostly because she had some seizure activity they could not see on eeg's)
Most adults could never see something was off, her peers picked up on it though. My dd was dx as autistic at 3, (PDD by a specialist) and that dx was changed to aspergers with a cap disorder around 14.

[LIZARD]

Do some of you have children diagnosed with autism who are social and cheerful? Does that throw off your child's doctor?

My son has always been a relatively cheerful kid, and although his social skills have always needed work, they have improved to the point where he has "autistic moments" and is, in many ways, a typical 14 yo boy. :) This is after about a dozen years of very hard work and intensive therapy, but any professional who knows enough about autism could tell that he is autistic.


LIZARD :)

[Kristen (ColeysMom)]

Are you sure fructose is not in her diet? The concept of being a nutrition fanatic and fructose free is kinda contrary to what we are taught is 'healthy.'

I have learned that a healthy diet is all relative. For my son things like fruits and vegetables and whole grains are UNhealthy, because they contain large quantities of fructose. Fructose is in everything that grows from the ground, natural sweeteners, plus in many man made things, like the obvious HFCS.

With that said though, I'm not suggesting that she has an issue with fructose per se, just making the point that it could be anything...I was completley amazed when the doctor suggested that vegetables could be causing some of his symptoms...it was like, HUH?! It just didn't make ANY sense to me. I was a nutritionist at MGH when I was younger and just could NOT comprehend what that meant. Since then I have learned, both here, and in other forums, as well as from research and in speaking with geneticists and metabolic Drs, that there are a LOT of things that can compromise the metabolic system of an individual...some temporary and some genetic and permanant.

What was essentially happening to my son is that the fructose was not being metabolized in his liver and it ended up in his blood stream, which compromised all his organ functions, including his brain...and also did some other things, like send his endocrine system into chaos as it struggled to manage the 'sugar' that doesn't respond to insulin...chain reaction from there...

Again, I'm not suggesting at all that's it's fructose, but an innocent apple or green bean is what caused my sons 'cycles' as we called them before it was diagnosed and managed.

He would literally be in his own world, depressed, OCD and nonresponsive for weeks...at this point he would be on a hunger strike as well...causing all sorts of issues there, dehydration and LBS sent us to the ER OFTEN!

Then he'd eat, and of course we'd give him something 'healthy' and BLAM, the cycle would repeat.

The ER treatment would 'wake' him and we'd see progress until his body was overwelmed and he'd go back into his world.

But just after the treatment he would be great. And sometimes we'd be able to break the cycle at home without intervention, so it was VERY confusing to us. He'd starve himself and suddenly be 'normal' or pretty close.

Finally when we removed the fructose the 'cycling' stopped.

We also discovered that fructose is in MANY meds, vaccines, things like toothpaste and shampoos, the list goes on & on...when we found every trace the rashes (well all but one) dissapeared, his on again off again relationship with his toothbrush dissapeared, etc. etc. etc.

I have learned that my son has 'behaviors' for good reason. The Drs like to heave them all into one bucket and blame it all on Autism...I tend to believe that the body will find a way to tell you when something is wrong.

Look closely at her behaviors and what has come in contact with her. It may or may not be a food. It may or may not be an environmental thing. It may or may not be an organic thing. It may or may not be something that is even 'defined' as of yet...my experience is that the inconsistency was a red flag, his body was overloaded with a 'toxic' substance. And who would have thought a broccoli spear could be 'toxic' but to Coley it is.

[Cutiepie]

Thanks for pointing out the fructose thing. You're right, she can't be totally fructose-free even when obviously sugary things aren't in the diet, but even her fruit intake is extremely limited because of the fructose. I'm not allowed to give her pure juice when she visits. I suppose it's in items that we don't even consider.

I think a formal journal would be appropriate. I don't know how else we can tell what the triggers might be (if she's reacting to something environmental).

Your stories are encouraging, especially at a time when the gap between Kaity and her peers is more obvious than ever.

I'm always blown away by how far behind she is 'formal education,' but how she's way ahead in other areas. She can read people much better than most adults can!

Thanks again,

Julie

[Kristen (ColeysMom)]

Yes Julie, that is the very best next step.

Start a journal, and put as much detail into it as possible. What she eats and amounts (ingredients when necessary), what she does, her behaviors, sleep, outputs, everything...if there is a pattern, it WILL emerge.

Plus, I think getting her into to a more specialized Dr that could potentially make a better Diagnosis.

BTW - has she seen a neuro?

[Kristen (ColeysMom)]

Oh one question. I can understand not allowing sweets...they aren't healthy.

But what is the current reason for not allowing prune juice? And why is her fruit intake low?

I'm assuming she does eat whole grains and vegetables - or are some of those avoided too, like corn? If so, why?

[Keggy]

I'm always blown away by how far behind she is 'formal education,' but how she's way ahead in other areas. She can read people much better than most adults can!



You do mean read people, not read better than people, right? Only ask because I saw a wording error in the first part of the sentence and ... well my dd is/was hyperlexic, wondering if your gd is as well.

In any case, the kids go through many changes, huge slips and leaps, as they age. When my dd was 5 a doctor told me she may be institutionalized by ten. Instead she is in college, no assistance or extra help.. doing great. Got to think positive and be their advocate.

She should have a good developmental pediatrician and use careful consideration before starting any diets, drugs, therapies etc. And of course the door is always open to you here on this board since we have all been there in one way or another and we have very strong opinions.

[Cutiepie]

Really quick....

Even the natural sugars in juice seem to intensify her ADHD. She has raisins, bananas, apples and ocassionally grapes, but no juice at all.

And yes, I did mean that she reads people. She is very sensitive and intuitive about people. She seems to understand body language quite well, perhaps better than verbal language.

I was disappointed in the outcome of the doctor visit today. He actually increased her medication as she is really struggling with concentration and is easily distracted. I don't know...I don't think it's what she needs. We'll see how it goes.

No, she has not seen a neuro. We don't have any within 400 miles of where we live. She sees a family doctor for her colds, etc., and sees the child psychiatrist for her autism (or whatever they choose to call it that day).

She is such a sweetheart. :)

Julie

[Kristen (ColeysMom)]

Oh Julie, I'm sorry!

I would suggest doing a little research into other developmental docs, perhaps ones that specifically promote the use of 'other' techniques before resorting to meds. Doesn't mean that doctor wouldn't use them, but there are some docs that feel, much like many of us here, that meds w/ kids should be explored as a last effort.

And now, given what you've said about the juice, I'm going to retract some of what I've said...I think you may want to look specifically at fructose. You don't need to take it away, but just observe her closely when she has that versus things like high protien items...like beef, fish and eggs. Try to keep them seperate so that you can see a difference.

There are other things in fruits & veggies that could be the cultpret as well...but I would focus in on specific food first before trying to identify what partical of the item may be influencing her neurology.

I'd also look into a good GI, and some probiotics. Acidopholous is good, we've found s.boulardii to be MUCH better. Using that has gone a LONG way at improving Coley's ability to process sugars. There are other things as well...vitamins and mineral...but a good GI should be able to identify whether or not they are needed and how much.

I'm assuming that your daughter is already using omega's for her concentration...is that true?

[Keggy]

That is too bad. I felt the same way about my dd, she could read people too. I figured out at some point that she wasn't getting everthing that was being said to her. I could do that by asking her about her brother (she don't have one) where was he now, or something along that line and get an answer based on my tone of voice and expression. This is a very un-autistic skill. I think in addition she was also very intuitive, actually proved that but the story was so crazy nobody can believe it.
I hope your daughter, or the doctor changes their minds about the meds. I think they should be used with great caution, they do so much. I work in a psyc hospital so I see the effect big time. The body does try to heal itself, can't do that as well with chemical interference.