Rapid deterioration of skills

[AimeeM]

Autumn is 10. We are repeating the fourth grade this year. She still doesn't know her multiplication tables and is a horrid speller/writer. She is dyslexic, seemingly reads fine (although she hates to read and I think she does so by sight; although she used to be able to decode). Brilliantly scientific and artistic.

I just don't understand. She was reading by age three, doing basic math by 2/3, writing shortly after (legibly). Tested highly gifted at 7. Never had any problems until the middle of second grade when I started getting notes and calls that she couldn't pay attention, had difficulty reading and constructing letters. Teacher suspected dyslexia but said it was too early to tell. By third grade she was emotional about her school work (though fine emotionally at other times), hated school, and was falling behind. Last year (fourth grade; first in public as she was previously in private) was a COMPLETE wash. Like it never happened.

I'm doubting the diagnosis, to be honest. Dyslexia, APD, and ADD don't just "appear" where they never were before. Do they?

 

 

 

Now we have my 2 year old son. At two he is verbally behind (lung condition; he will always be small and has some making up to do in the physical milestones department), but cognitively.... seems wonderful. He knows his letters by sight (Nico, find me the "A"), beginning phonics; his numbers by sight, his colors, shapes, patterns. Everything that they are working on in our local private school (Prek 4) class, he has already mastered (other than fine motor skills like cutting and pasting).

But I worry. Is it going to happen to him too? Is he just going to wake up one day and not know this stuff?

I'm serious. It seems like Autumn just progressively deteriorated with academics (except in the visual skill department where she is flourishing and excelling) almost over night.

[chiguirre]

Have you taken her to a neurologist? I hate to sound alarmist, but losing skills is a big red flag that something's going on. Just to through something out there because it sounds a bit similar to someone I know IRL, could she be having absence seizures?

 

I hope you find an answer soon.

 

:grouphug:

[PeterPan]

Aimee, there are of course two options. Either she was all these things before and her incredible strengths masked them, OR she experienced something that caused the damage. There actually is drug-induced dyslexia, autism after vaccines, that sort of thing. It's not like that's outside the realm of possibility. I'm just taking what you're saying very literally and saying that's a way to get there. In two other threads I asked you about her eyes, and you said you had them checked. Was that by a developmental optometrist? I'm asking again, because you said she turned out to have reversals, etc. I'm not meaning to pry, but I can't fathom our developmental optometrist walking away from that one, as it's so easily correctible. Properly working eyes are essential for proper development of visual perception and visual perception is of course a huge chunk of how school work happens).

 

If she has *mild* issues with her eye function, they can translate into increasing problems on the schoolwork as she ages, giving the perception of increasing problems. For instance, if someone has the visual perception skills of a 2 yo in certain categories, then at age 4 it would be less noticeable than when the child is *10*. The gap widens when there is no therapy intervention. So I go back to my question about eyes, since you mentioned she has reversals and since that could explain her symptoms.

 

Next, when I reviewed your posts, I saw you mention LearningRX. So your current diagnoses of dyslexia, APD, and ADD are from them? That just sort of seems odd to me. Not meaning to diss the value of LearningRX, but did they do all the tests a neuropsych would do??? They don't even use dyslexia now as the DSM coding. She'd get reading disorder and disorder of written expression, and you'd get subtests and explanations of everything. Did you go to an audiologist for the APD? Have you pursued any separate therapy for it?

 

It is my opinion, and this is just me, that it's extremely hard to use curriculum to replace good therapy. I'm not saying therapy replaces everything or can't become a rat race or that there aren't crooks out there. I'm just saying curriculum can't solve everything.

 

Also, if indeed she actually is dyslexic, then probably what was happening all these years were that her incredible strengths (that profoundly gifted diagnosis she got) was covering it. Have you compared her age 7 and age 10 test scores? Is there anything that has happened with supplements, shots, medicines, etc. to explain the changes?

 

I'm going to say this, and I don't mean to be blunt, but at some point you have to accept who your kid is. I went through a stage of this (notice my girl is a couple years older than yours) where my abilities and conceptions of what she ought to be able to do were the standard. So not to meet my standard was a defect. Now I've embraced her as someone totally ELSE. The book "The Dyslexic Advantage" by the Eides was really instrumental in that for me.

 

We're getting our neuropsych results back Thursday btw. We'll see how that goes. I'm hoping he'll find some things we can work on proactively. But some of it will just be quantifying and putting labels to things. So I'm totally with you in the idea of helping her be all she can be, finding things you can work on with therapy or targeted curricula, etc. But at some point you have to wrap your head around the idea that she's just NOT gonna look normal. A profoundly gifted dyslexic doesn't homeschool junior high and high school the way a regular kid does. Go search the boards and spend an evening reading posts by people on the high school board who have gifted dyslexics. Don't read everybody's posts, just the ones teaching dyslexics. Start to see the patterns. They're the people who end up going WAY out of the box, because their kids are different. If you want them to blossom, that's what you do. I'm saying that, because it's possible to do the opposite and try really hard to shove the kids into a box that says "this is what you must do, WTM and the school system said so" and your result is squashed flowers. But it took me a long time to wrap my brain around that, around the idea that my really smart kid isn't going to look in high school like the other really smart kids I read about on the boards.

[PeterPan]

Have you taken her to a neurologist? I hate to sound alarmist, but losing skills is a big red flag that something's going on. Just to through something out there because it sounds a bit similar to someone I know IRL, could she be having absence seizures?

 

I hope you find an answer soon.

 

:grouphug:

 

Absolutely, and the neuropsych would be another one who should catch that there is something physical behind the problems and refer you off.

[AimeeM]

Her diagnosis was made by Learning Rx, which is why I'm confused. I think that maybe they just wanted the several thousand dollars we were ready to put down to "cure her" there.

They did an IQ test at Learning Rx. It was below average! Compared to one done not three years previous (performed by a child psych) that was highly gifted? I don't understand.

 

She had a test for seizures once, long ago. They didn't find anything, but she was only 6 or so at the time and they said that because it was only a semi sleep deprived test, it wasn't going to be conclusive.

 

She is so intelligent. I'm so tired of her feeling inferior. She wants so, so badly to go back to school. I just don't think it's possible. I want her to wait. It want this to be our trial year. I want to find what works for and what doesn't; instead I feel rushed and I'm running around like a chicken with my head cut off trying to get her "ready" to return to an incredibly neuro-typical catholic school environment next year.

 

I just want to cry...

but that may just be the pregnancy hormones :tongue_smilie:

 

An example: we tried EVERY math program out there. I kept putting off Singapore because everyone said it couldn't work for a child with working memory and dyslexia issues. Finally ordered it because I'd tried everything else. Spiral, like they said would be best. She's flying through Singapore like math suddenly makes SENSE to her (that and Key to Fractions).

Aimee, there are of course two options. Either she was all these things before and her incredible strengths masked them, OR she experienced something that caused the damage. There actually is drug-induced dyslexia, autism after vaccines, that sort of thing. It's not like that's outside the realm of possibility. I'm just taking what you're saying very literally and saying that's a way to get there. In two other threads I asked you about her eyes, and you said you had them checked. Was that by a developmental optometrist? I'm asking again, because you said she turned out to have reversals, etc. I'm not meaning to pry, but I can't fathom our developmental optometrist walking away from that one, as it's so easily correctible. Properly working eyes are essential for proper development of visual perception and visual perception is of course a huge chunk of how school work happens).

 

If she has *mild* issues with her eye function, they can translate into increasing problems on the schoolwork as she ages, giving the perception of increasing problems. For instance, if someone has the visual perception skills of a 2 yo in certain categories, then at age 4 it would be less noticeable than when the child is *10*. The gap widens when there is no therapy intervention. So I go back to my question about eyes, since you mentioned she has reversals and since that could explain her symptoms.

 

Next, when I reviewed your posts, I saw you mention LearningRX. So your current diagnoses of dyslexia, APD, and ADD are from them? That just sort of seems odd to me. Not meaning to diss the value of LearningRX, but did they do all the tests a neuropsych would do??? They don't even use dyslexia now as the DSM coding. She'd get reading disorder and disorder of written expression, and you'd get subtests and explanations of everything. Did you go to an audiologist for the APD? Have you pursued any separate therapy for it?

 

It is my opinion, and this is just me, that it's extremely hard to use curriculum to replace good therapy. I'm not saying therapy replaces everything or can't become a rat race or that there aren't crooks out there. I'm just saying curriculum can't solve everything.

 

Also, if indeed she actually is dyslexic, then probably what was happening all these years were that her incredible strengths (that profoundly gifted diagnosis she got) was covering it. Have you compared her age 7 and age 10 test scores? Is there anything that has happened with supplements, shots, medicines, etc. to explain the changes?

 

I'm going to say this, and I don't mean to be blunt, but at some point you have to accept who your kid is. I went through a stage of this (notice my girl is a couple years older than yours) where my abilities and conceptions of what she ought to be able to do were the standard. So not to meet my standard was a defect. Now I've embraced her as someone totally ELSE. The book "The Dyslexic Advantage" by the Eides was really instrumental in that for me.

 

We're getting our neuropsych results back Thursday btw. We'll see how that goes. I'm hoping he'll find some things we can work on proactively. But some of it will just be quantifying and putting labels to things. So I'm totally with you in the idea of helping her be all she can be, finding things you can work on with therapy or targeted curricula, etc. But at some point you have to wrap your head around the idea that she's just NOT gonna look normal. A profoundly gifted dyslexic doesn't homeschool junior high and high school the way a regular kid does. Go search the boards and spend an evening reading posts by people on the high school board who have gifted dyslexics. Don't read everybody's posts, just the ones teaching dyslexics. Start to see the patterns. They're the people who end up going WAY out of the box, because their kids are different. If you want them to blossom, that's what you do. I'm saying that, because it's possible to do the opposite and try really hard to shove the kids into a box that says "this is what you must do, WTM and the school system said so" and your result is squashed flowers. But it took me a long time to wrap my brain around that, around the idea that my really smart kid isn't going to look in high school like the other really smart kids I read about on the boards.

[wapiti]

.

[AimeeM]

She was literally excelling until later in second grade. She skipped a year at one point (school's idea) and we were the ones to pull her back to normal grade level because of maturity issues (she couldn't sit still and the teachers were disciplining her because, at almost 2 years younger than most of the children, she simply didn't have the maturity to cope with the expectations).

 

Now we are holding her back a year. It's become that serious.

:iagree: with the others. I'd wonder about the vision, I'd think about the accuracy of the diagnoses if they were from Learning Rx rather than a neuropsych, and I'd also wonder about other, unrelated physical causes if you are seeing a real, true deterioration, as opposed to, say, problem skills not developing on pace with grade level expectations.

[AimeeM]

Also, thanks for the rec.

I will ask her ped to refer us out to a neuropsych.

[PeterPan]

Yes, you need the neuropsych eval. I can't FATHOM accepting those kinds of labels without the proper practitioners doing the diagnoses.

[AimeeM]

No kicking the horse while it's down :glare: Lol.

 

Honestly, it simply hasn't compared to my son's very serious, life threatening medical problems and we had entertained that she was having problems because of what was going on with her beloved brother. I've never seen a more dedicated, devoted big sister. She was so distraught over his lung surgery that she couldn't function while we were in the hospital. We had my mother stay home with her and keep her out of school.

Yes, you need the neuropsych eval. I can't FATHOM accepting those kinds of labels without the proper practitioners doing the diagnoses.

[AimeeM]

On that note; why am I a "larvae" again?

[PeterPan]

Nobody's kicking you. We're just telling you straight. I think you ought to get a np eval anyway, just so you can get more guidance on how to handle her. There's a 2E email list, have to see what it's called. It's not tagmax but more of a notification list. Anyways, they sent out a link to np's for 2E evals. That might be especially helpful to you. There was a Sylvia Rimm on there that was sort of off the deep end to my tastes but might suit you. She has a lot of neat, very positive, books btw. I'll see if I can dredge up that list/link/whatever it was.

[ElizabethB]

:grouphug:

 

If she was doing some decoding but mainly reading by sight, you could see what looks to be a deterioration but is actually the "4th grade slump" this is hit when you reach a level of reading when there are too many words to read by sight. Also, with more difficult reading selections you have to decode multi syllable words, so you have to also be able to divide words into syllables, a skill that some children need to be explicitly taught.

 

If you give her the MWIA, you can compare her pattern of errors and speed of reading each selection to find out if that may be the case. Give the MWIA level II if she is reading at the 2nd grade or above on the NRRF reading grade level test. If she is reading at the 1st grade level or below on the NRRF test, give the MWIA level I.

 

http://www.thephonicspage.org/On%20Reading/readinggradeleve.html

 

I have also seen deterioration from children who were taught a bit of phonics but then put in school where sight words and guessing strategies were taught.

[sbgrace]

Have you seen any health declines/changes in that same time period? Fatigue?

 

It sounds like she's been under a lot of stress in that time period. Still, that level of decline does sound serious and worrisome to me. My son lost skill with a metabolic condition that had been undiagnosed. Your son who has the lung condition--does he have other signs of things amiss and is the lung condition a stand alone type diagnosis? You don't have to answer. There are some metabolic conditions affecting mitochondrial function that cause a multitude of presentations in various body systems and can/often do have regression with them.

[Pippen]

They did an IQ test at Learning Rx. It was below average! Compared to one done not three years previous (performed by a child psych) that was highly gifted? I don't understand.

 

 

A lot of things can impact IQ test results but one possibility here is that very different IQ tests were used. Shorter, general tests can yield marked differences from longer tests with subtests in specific areas.

 

What has been the response of her pediatrician to your concerns about deteriorating skills?

[choirfarm]

Im sorry, but Learning RX is a money making place. Take her to a doctor!!! I am going to agree with the 4th grade slump in reading. That is when many reading issues show up. You need to take her to REAL doctors to truly evaluate her.

[AimeeM]

The lung condition was only found because of a heart condition (hole in the heart; which resolved itself by 12 months old). Lung condition is congenital and stands alone. They have ran every test under the sun to make sure of it. It has an odd pathology, for the specific condition, and presents differently than usual in our son; but stand alone nonetheless. He is otherwise fine.

 

Autumn has been complaining of headaches and fatigue (as well as frequent stomach aches) for over a year now. We've had tests ran. Her last urine test showed increased protein; but, as in years previous, when they ran a second urine test two weeks later, it was clean.

 

Now that Nico is over the worst of his problems, we are looking for a new ped. I know it sounds horrible of us, but we couldn't switch mid stream with him. I am hoping that I can get a ped to look at Autumn with a new set of eyes - not relying on her medical records.

Have you seen any health declines/changes in that same time period? Fatigue?

 

It sounds like she's been under a lot of stress in that time period. Still, that level of decline does sound serious and worrisome to me. My son lost skill with a metabolic condition that had been undiagnosed. Your son who has the lung condition--does he have other signs of things amiss and is the lung condition a stand alone type diagnosis? You don't have to answer. There are some metabolic conditions affecting mitochondrial function that cause a multitude of presentations in various body systems and can/often do have regression with them.

[AimeeM]

The test she scored high on was a longer test. I remember that she was with the psychologist for HOURS (they did take breaks frequently).

 

A lot of things can impact IQ test results but one possibility here is that very different IQ tests were used. Shorter, general tests can yield marked differences from longer tests with subtests in specific areas.

 

What has been the response of her pediatrician to your concerns about deteriorating skills?

[AimeeM]

All well and good; but I didn't know which real doctor to take her to until this thread (neuropshych).

Her pediatrician doesn't deal in learning differences and if it doesn't show up in an MRI or CBC, she doesn't touch it.

Yes, we're switching.

Im sorry, but Learning RX is a money making place. Take her to a doctor!!! I am going to agree with the 4th grade slump in reading. That is when many reading issues show up. You need to take her to REAL doctors to truly evaluate her.

[prairiewindmomma]

Based on what you share, I wonder about:

*difficulties happening now that schoolwork is becoming more complex: vision tracking, working memory, encoding/decoding in memory

*absence seizures or other organic issues (metabolic, mitochondrial, etc.)

[AimeeM]

Would a neuropsych test for those; or a neurologist?

Based on what you share, I wonder about:

*difficulties happening now that schoolwork is becoming more complex: vision tracking, working memory, encoding/decoding in memory

*absence seizures or other organic issues (metabolic, mitochondrial, etc.)

[Misty]

Does she have any other symptoms like headaches, skin rashes, frequently sick, fatigue, bowel issues, constipation, etc? There could be an autoimmune issue going on. There are several autoimmune diseases common in children that affect the brain.. PANDAS is one.. Celiac Disease is another. Celiac disease is what caused deterioration in skills here.. My daughter was doing mental multiplication and reading at age 4. She was very advanced. She suddenly deteriorated a few years ago and began working at grade level, despite an IQ in the 140's. We didn't catch her Celiac disease until age 8. She's 10 now.

 

Lyme disease is another thing to consider.

[AimeeM]

Headaches, fatigue, stomach upset and yes, rashes actually. She has one on the back of her neck right now.

But wouldn't a blood test uncover that? She's had several CBCs. We have a heavy family history of autoimmune, so I'm always insisting her doctor check on that. According to her ped, all is well on that end.

 

Does she have any other symptoms like headaches, skin rashes, frequently sick, fatigue, bowel issues, constipation, etc? There could be an autoimmune issue going on. There are several autoimmune diseases common in children that affect the brain.. PANDAS is one.. Celiac Disease is another. Celiac disease is what caused deterioration in skills here.. My daughter was doing mental multiplication and reading at age 4. She was very advanced. She suddenly deteriorated a few years ago and began working at grade level, despite an IQ in the 140's. We didn't catch her Celiac disease until age 8. She's 10 now.

 

Lyme disease is another thing to consider.

[AimeeM]

I should mention, though, that her ped seems convinced her fatigue and headaches are indicative of starting puberty.

[Rebecca VA]

My daughter (13 last year) had Lyme Disease starting around last Christmas. The ladies on this board diagnosed it immediately, but the doctor didn't catch it until May. She was on heavy-duty antibiotics all summer. She ended up repeating eighth grade (her grades were very good, but she wasn't able to complete every subject, plus she was so depressed that I put her into private school to cheer her up). She also failed to make the ballet company because the Lyme caused to her lose strength and coordination. So in a way she did regress.

 

Apparently the standard test for Lyme isn't very sensitive, and many cases are missed. If you really think it could be Lyme, you're probably best off going to a Lyme-aware doctor.

[lisamarie]

All well and good; but I didn't know which real doctor to take her to until this thread (neuropshych).

Her pediatrician doesn't deal in learning differences and if it doesn't show up in an MRI or CBC, she doesn't touch it.

Yes, we're switching.

 

Headaches, fatigue, stomach upset and yes, rashes actually. She has one on the back of her neck right now.

But wouldn't a blood test uncover that? She's had several CBCs. We have a heavy family history of autoimmune, so I'm always insisting her doctor check on that. According to her ped, all is well on that end.

 

This concerns me. The headaches and fatigue, rashes, stomach upset. I think I would want that MRI of her head. Just saying. Especially with her learning loss. I totally get the not dealing with it because you were focusing on your DS. I'm like that--one crisis at a time please. But now I think it's time to get a new dr to check her out, specialists, not GPs. You need someone who will run tests and dig.

[prairiewindmomma]

--

Edited November 10, 2021 by prairiewindmomma

[Tiramisu]

:grouphug:

 

Sympathy here.

 

With one of my dc, I have seen something of a regression, nothing specific really, but an overall sense that she's wasn't what she once was and somehow not keeping up with her peers, though she's quite bright. I worried about what would happen with my next one around that fourth grade time, but she's progressing well every day, so don't go there.;)

 

At the time these things really became an issue as far as school went was at the start of high school, and then another child was diagnosed with a spinal disorder so I really couldn't do anything about my concerns about the first child. So I really see the parallels between your situation and mine.

 

Because of the spinal problem and insurance issues with the surgery, we couldn't switch peds. right away either. But once we did, we found a winner. So there's hope for you, too!

 

Another parallel: autoimmune family history.:glare:

 

I wish I could give you an answer because we're still searching.

 

The advice I can give is to get recommendations and then go around and interview pediatricians. Find one that will support you and will be tenacious in getting the tests you need and communicating with the specialists and the insurance company. I remember when one specialist wouldn't do a peer-to-peer with the insurance company to get a necessary test. When I told our new ped. about it, she said, "I'll do it. I like to fight." Wow!

 

When you go to specialist, find the best place. We are near a world class children's hospital, but we actually found better care at another children's hospital that is less well-known. From experience, I would not just go in the neighborhood.

 

Whatever you do, get on it. :)

 

Because we are on the brink of a possible diagnosis, I'm starting to wonder how I feel if I get an answer, how I'll feel about all the years I gave dd a hard time, getting on her case, telling her to work harder, to not waste time, to just listen for once. I may soon find out there was a specific reason for all this. If I had an answer years before, it may have saved us all so much heartache. I would like to spare you and your family what we've gone through by finding answers sooner rather than later.

 

:grouphug:

[deacongirl]

Possibly relevant:

The Eides on Stealth dyslexia:

http://www.davidsongifted.org/db/Articles_id_10435.aspx

[mommymonster]

:grouphug: I was also wondering if you had an MRI of her head/spine done?

 

I'm a bit sensitive when I hear vision problems, tiredness, and regression of skills, as my son had the same issues. If you haven't already had an MRI, it sounds like your current pediatrician could take care of ordering one (while you look for someone new).

 

The diagnostic phase of figuring out issues makes me absolutely bonkers. Trust your instincts and don't settle for pats on the head and condescension.

[AimeeM]

If the ped won't refer me out, who do I go to? A new ped or a neurologist?

This concerns me. The headaches and fatigue, rashes, stomach upset. I think I would want that MRI of her head. Just saying. Especially with her learning loss. I totally get the not dealing with it because you were focusing on your DS. I'm like that--one crisis at a time please. But now I think it's time to get a new dr to check her out, specialists, not GPs. You need someone who will run tests and dig.

[AimeeM]

She had an MRI many, many years ago. Around the age of 5 or 6, I believe. The same time she was tested for seizures. I think. MRI was clean, test for seizures was inconclusive because it was only semi sleep deprived. I think. Frankly, my mind's a blur right now. I have a difficult time keeping straight the tests she had very young -vs- the testing her brother had for his lung/heart.

 

Now, though, she is 10. We could probably have the tests performed again with more conclusive results.

 

Did I mention she's a great girl? I always feel at my wit's end with her. I don't want to give the idea that she's less than wonderful. I've never met a more compassionate child. This is her second year volunteering her allowance to buy for a child who would otherwise not have a Christmas. Last year the only thing she asked for was a healthy baby brother (she did, however, get other things, lol). She is passionate about family, friends, art, and science. She can't keep a clean room for the life of her, but when I yell over it, she hugs me instead of getting defensive. She's close to perfect. Heaven sent. I'm afraid of making her feel less than wonderful. I don't want her to think we are trying to "fix" her somehow.

 

Right now she's entertaining her little brother because he wants to nurse and I'm trying to wean (pregnant and my son is 2 1/2, still nursing). She's doing so voluntarily because she ran from her room when she heard him calling.

 

I don't want her to think she needs to be fixed :001_huh:

:grouphug: I was also wondering if you had an MRI of her head/spine done?

 

I'm a bit sensitive when I hear vision problems, tiredness, and regression of skills, as my son had the same issues. If you haven't already had an MRI, it sounds like your current pediatrician could take care of ordering one (while you look for someone new).

 

The diagnostic phase of figuring out issues makes me absolutely bonkers. Trust your instincts and don't settle for pats on the head and condescension.

[sbgrace]

Hmmm...I think you've got signs this is a medical condition. You've got good suggestions of angles to look at. I'll include information about mitochondrial/metabolic conditions. http://www.mothering.com/community/t/734501/mitochondrial-disorder-information-and-video I made that post about signs when my son was diagnosed. Fatigue is a hallmark as is loss of skills. I mention this specifically not because it's the only possibility but because it's probably the most difficult to find a doctor who knows enough to spot it, test effectively, etc. I can try to help with that if you think it's a possibility.

[PeterPan]

Well the headache and fatigue can be from eyes. To distinguish that from something like Lyme look at how she feels when she doesn't do school. If she does no school, does she feel fine? Then it's something that's happening with school like eyes. If it continues even when she doesn't do school or close-up work, then it's something else.

 

That rash plus the fatigue and headaches needs to be sorted out. No matter what, sounds like you need a new ped. They really vary, even in the same practice. I have no experience with Lyme or anything to help you sort that out, but you definitely should read the boards here (do a google search with your terms and site:welltrainedmind.com in the box) as well as googling your symptoms to see what you can find.

[Misty]

Headaches, fatigue, stomach upset and yes, rashes actually. She has one on the back of her neck right now.

But wouldn't a blood test uncover that? She's had several CBCs. We have a heavy family history of autoimmune, so I'm always insisting her doctor check on that. According to her ped, all is well on that end.

 

Oh dear Lord.. Another clueless pediatrician.. You've just solved the mystery as far as I'm concerned.. Gluten intolerance.. If you have a heavy family history of autoimmune disease, plus she has all those symptoms, along with deterioration in skills.. This points directly at a gluten intolerance, possibly full blown Celiac disease, but not necessarily.. I could be way off base, but in my experience.. And I've been researching the effects of gluten for a while now.. Your daughter has all the symptoms of a classic case of "under the radar" gluten intolerance. I would do a gluten-free trial and see if anything improves. If you want information on blood testing, I can provide that.. Just keep in mind that Celiac testing is not 100% accurate.. Lots of false negatives. A CBC will shed light on none of this. If your doctor will not run some simple allergy tests and do a Celiac blood test on her, then you need a new doctor. Just PLEASE keep in mind that Celiac testing is not 100% accurate..Especially for those who have a non-Celiac gluten intolerance. An elimination diet could shed some light.. Put her on a strict gluten-free diet for a minimum of 3 months and see what happens.. If she improves, then you have your answer.. Please let me know if you have any questions.

 

Some helpful articles by Dr. Mark Hyman..

 

On gluten: http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/

 

On autoimmune disease: http://drhyman.com/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease-1778/

Edited November 30, 2011 by Misty

[AimeeM]

She's had an allergy test! A couple years ago. Slight allergy to cats is the only thing that came up (this was done by an allergist, not her ped. She was having some asthmatic symptoms (that seem to come and go with cold weather), so we saw someone who specialized in asthma and allergies for a short time. She (along with me and my son) is also allergic to hydrocodone products. It was determined that her allergies were so minor that a ped could handle it (allergist determined, not myself).

 

Does it matter that while autoimmune runs in the family, Celiac definitely does not? Nobody. We have MG and Lupus running heavy handed; as well as thyroid issues.

Oh dear Lord.. Another clueless pediatrician.. You've just solved the mystery as far as I'm concerned.. Gluten intolerance.. If you have a heavy family history of autoimmune disease, plus she has all those symptoms, along with deterioration in skills.. This points directly at a gluten intolerance, possibly full blown Celiac disease, but not necessarily.. I could be way off base, but in my experience.. And I've been researching the effects of gluten for a while now.. Your daughter has all the symptoms of a classic case of "under the radar" gluten intolerance. I would do a gluten-free trial and see if anything improves. If you want information on blood testing, I can provide that.. Just keep in mind that Celiac testing is not 100% accurate.. Lots of false negatives. A CBC will shed light on none of this. If your doctor will not run some simple allergy tests and do a Celiac blood test on her, then you need a new doctor. Just PLEASE keep in mind that Celiac testing is not 100% accurate..Especially for those who have a non-Celiac gluten intolerance. An elimination diet could shed some light.. Put her on a strict gluten-free diet for a minimum of 3 months and see what happens.. If she improves, then you have your answer.. Please let me know if you have any questions.

 

Some helpful articles by Dr. Mark Hyman..

 

On gluten: http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/

 

On autoimmune disease: http://drhyman.com/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease-1778/

[AimeeM]

She is fatigued at random times, not just during school work. Frankly, we've been taking a school-lite approach the last couple months. While she is fatigued, she has significant trouble sleeping, so she takes Melatonin. Last night she was still tossing and turning with a headache until after midnight. She used to fall asleep by 9. She is on Vyvanse, but the pharmacist instructed us on when to give it to her (time release) so that it wouldn't bother her sleep like the non-time released Adderall did. I don't think it's the Vyvanse causing her sleep problems because she has them even when she skips her medication.

Well the headache and fatigue can be from eyes. To distinguish that from something like Lyme look at how she feels when she doesn't do school. If she does no school, does she feel fine? Then it's something that's happening with school like eyes. If it continues even when she doesn't do school or close-up work, then it's something else.

 

That rash plus the fatigue and headaches needs to be sorted out. No matter what, sounds like you need a new ped. They really vary, even in the same practice. I have no experience with Lyme or anything to help you sort that out, but you definitely should read the boards here (do a google search with your terms and site:welltrainedmind.com in the box) as well as googling your symptoms to see what you can find.

[AimeeM]

Anybody with experience:

 

While they keep saying it's no concern, I worry about the weird urine tests. What would cause, year after year (for the past few), urine tests to first come back "bad" (protein in urine), but then to come back clean a couple weeks later? Anything, or am I overthinking?

[Misty]

She's had an allergy test! A couple years ago. Slight allergy to cats is the only thing that came up (this was done by an allergist, not her ped. She was having some asthmatic symptoms (that seem to come and go with cold weather), so we saw someone who specialized in asthma and allergies for a short time. She (along with me and my son) is also allergic to hydrocodone products. It was determined that her allergies were so minor that a ped could handle it (allergist determined, not myself).

 

This is a different type of allergy I'm talking about.. Their called cyclic, or delayed onset.. Or if she has Celiac disease, then that's not going to show up on allergy testing either. My daughter has sensitivity to gluten, casein, and soy.. None of these showed up on her traditional allergy test that they do at an allergy clinic. Doctors are still learning about these "delayed onset" allergies and they are also still learning about how gluten intolerance is way more prevalent than previously thought. Bottom line.. You most likely won't find answers at an allergy clinic. We tested through Great Plains Labs http://www.greatplainslaboratory.com , but you can also test through Alletess http://www.foodallergy.com . You want the IgG food allergy blood serum test.. Or you can just do an elimination diet and skip the testing.

 

Does it matter that while autoimmune runs in the family, Celiac definitely does not? Nobody. We have MG and Lupus running heavy handed; as well as thyroid issues.

 

Yes! It matters.. In fact, Lupus is often times just Celiac disease in disguise! Same with thyroid issues.. The thyroid issues are real, but it's the gluten intolerance that caused the thyroid issues.. Know what I mean? Google "lupus + Celiac" and "thyroid + Celiac" and "MG autoimmune + Celiac" and you'll have enough reading material to last the end of this year. It sounds like your family has a gluten issue that has gone undetected.. That's exactly what happened in my family.. So many issues running rampant in my family.. Fibromyalgia, chronic fatigue, migraines, anxiety, skin rashes, etc.. We finally learned we are all just a bunch of Celiacs.. :tongue_smilie:

[Mom22ns]

:grouphug:

 

You are not over thinking, you are just thinking. Find a ped that will do a thorough eval of your precious daughter. An allergy test doesn't detect celiac any more than a CBC. There are just too many symptoms to ignore. There are many possible explanations, celiac or gluten intolerance is just one. You need to start working with someone who will help you and will keep looking or referring until you get answers.

 

I'm so sorry your dd is suffering and you are having to deal with so much. I'm glad your ds is improving. It is your dd's turn to take over for awhile.

 

I hope you find answers.

[AimeeM]

Lol. Thanks! Off to google.

This is a different type of allergy I'm talking about.. Their called cyclic, or delayed onset.. Or if she has Celiac disease, then that's not going to show up on allergy testing either. My daughter has sensitivity to gluten, casein, and soy.. None of these showed up on her traditional allergy test that they do at an allergy clinic. Doctors are still learning about these "delayed onset" allergies and they are also still learning about how gluten intolerance is way more prevalent than previously thought. Bottom line.. You most likely won't find answers at an allergy clinic. We tested through Great Plains Labs http://www.greatplainslaboratory.com , but you can also test through Alletess http://www.foodallergy.com . You want the IgG food allergy blood serum test.. Or you can just do an elimination diet and skip the testing.

 

 

 

Yes! It matters.. In fact, Lupus is often times just Celiac disease in disguise! Same with thyroid issues.. The thyroid issues are real, but it's the gluten intolerance that caused the thyroid issues.. Know what I mean? Google "lupus + Celiac" and "thyroid + Celiac" and "MG autoimmune + Celiac" and you'll have enough reading material to last the end of this year. It sounds like your family has a gluten issue that has gone undetected.. That's exactly what happened in my family.. So many issues running rampant in my family.. Fibromyalgia, chronic fatigue, migraines, anxiety, skin rashes, etc.. We finally learned we are all just a bunch of Celiacs.. :tongue_smilie:

[Misty]

I should also mention that 97% of Celiacs are walking around undiagnosed in this country. That's HUGE.. Most people have no idea that they have it. I didn't know until I went on a gluten free diet (because my kids had to) and suddenly everything that was wrong with me went away.

[Ottakee]

Anybody with experience:

 

While they keep saying it's no concern, I worry about the weird urine tests. What would cause, year after year (for the past few), urine tests to first come back "bad" (protein in urine), but then to come back clean a couple weeks later? Anything, or am I overthinking?

 

I would try to get into a neurologist ASAP. This could be seizures but many of the things you mention point to mitochondrial issues---the urine tests certainly fit with that as they can come and go (like flare ups), the fatigue, loss of some skills but not all, headaches, etc.

 

You will likely need good neuropsych testing as well but a neurologist should be able to run the test for mitochondrial/metabolic issues (mostly blood tests--but LOTS of tubes of blood).

 

We have POLG 1, TK 2 and LHON here at our house.

[Tiramisu]

This is a different type of allergy I'm talking about.. Their called cyclic, or delayed onset.. Or if she has Celiac disease, then that's not going to show up on allergy testing either. My daughter has sensitivity to gluten, casein, and soy.. None of these showed up on her traditional allergy test that they do at an allergy clinic. Doctors are still learning about these "delayed onset" allergies and they are also still learning about how gluten intolerance is way more prevalent than previously thought. Bottom line.. You most likely won't find answers at an allergy clinic. We tested through Great Plains Labs http://www.greatplainslaboratory.com , but you can also test through Alletess http://www.foodallergy.com . You want the IgG food allergy blood serum test.. Or you can just do an elimination diet and skip the testing.

 

 

 

Yes! It matters.. In fact, Lupus is often times just Celiac disease in disguise! Same with thyroid issues.. The thyroid issues are real, but it's the gluten intolerance that caused the thyroid issues.. Know what I mean? Google "lupus + Celiac" and "thyroid + Celiac" and "MG autoimmune + Celiac" and you'll have enough reading material to last the end of this year. It sounds like your family has a gluten issue that has gone undetected.. That's exactly what happened in my family.. So many issues running rampant in my family.. Fibromyalgia, chronic fatigue, migraines, anxiety, skin rashes, etc.. We finally learned we are all just a bunch of Celiacs.. :tongue_smilie:

 

When we took a younger dd to a pediatric GI doctor, she was very interested in all the autoimmune issues in our family. I do not have the genes for celiac, so I thought dd may be "safe", but the GI doctor said "no." Dd could get one gene for celiac from my husband and with the autoimmune stuff from me, and that would be enough. She also took non-celiac gluten intolerance seriously.

 

The thing about celiac is, because it's an autoimmune disease, it can pop up at anytime. You can have the genetics for it and not have it until something triggers it. It would make sense that you'd see a regression in that case, or it could be the longer-term effects starting to show themselves. If headaches, rashes, and add-like symptoms are there, I'd consider celiac, too.

 

Just as a warning, celiac blood tests are unreliable, especially in children. You could try it if your having blood drawn anyway, but as Misty suggested, it may be worth cutting out gluten and seeing how she does. From friends' experiences, I've had the impression that children can respond to the gluten removal very quickly, when adults may take a little longer to show improvement.

Edited November 30, 2011 by NJKelli

[prairiewindmomma]

The urine stuff does make me start to think along the lines of Ottakee.

There's just enough of something going on with your dd that maybe I'd make neurology my first stop and put off the neuropsych testing onto the 2nd burner.

 

FWIW, most traditional docs do not believe in IgG testing. Most ped allergists (or ped GIs) use a blood test for an initial screening and then will do a tissue biopsy (which is the gold standard test). We chose just to stop eating gluten for a couple of months to see if we saw improvement. We didn't. (And in the labs my rheumatologist ran later on me only, I was negative.)

 

Going glutenfree is easy enough to do on your own; you could give 'er a go and see what happens.

[littleWMN]

I have Celiac and one of my dds (adopted) is sensitive to gluten. I had no GI symptoms. It can skip generations because you can have the gene but not Celiac Disease. It can develop at any time. You need a blood teat to test specifically for Celiac. I was diagnosed at 33.

[Lizzie in Ma]

Autumn is 10. We are repeating the fourth grade this year. She still doesn't know her multiplication tables and is a horrid speller/writer. She is dyslexic, seemingly reads fine (although she hates to read and I think she does so by sight; although she used to be able to decode). Brilliantly scientific and artistic.

I just don't understand. She was reading by age three, doing basic math by 2/3, writing shortly after (legibly). Tested highly gifted at 7. Never had any problems until the middle of second grade when I started getting notes and calls that she couldn't pay attention, had difficulty reading and constructing letters. Teacher suspected dyslexia but said it was too early to tell. By third grade she was emotional about her school work (though fine emotionally at other times), hated school, and was falling behind. Last year (fourth grade; first in public as she was previously in private) was a COMPLETE wash. Like it never happened.

I'm doubting the diagnosis, to be honest. Dyslexia, APD, and ADD don't just "appear" where they never were before. Do they?

 

 

 

Now we have my 2 year old son. At two he is verbally behind (lung condition; he will always be small and has some making up to do in the physical milestones department), but cognitively.... seems wonderful. He knows his letters by sight (Nico, find me the "A"), beginning phonics; his numbers by sight, his colors, shapes, patterns. Everything that they are working on in our local private school (Prek 4) class, he has already mastered (other than fine motor skills like cutting and pasting).

But I worry. Is it going to happen to him too? Is he just going to wake up one day and not know this stuff?

I'm serious. It seems like Autumn just progressively deteriorated with academics (except in the visual skill department where she is flourishing and excelling) almost over night.

 

Just throwing this out there, has she been tested for Lyme? Undiagnosed Lyme can have a ton of neurological and cognitive issues involved.

http://www.canlyme.com/patsymptoms.html

[AimeeM]

She hasn't that I'm aware of. That will definitely be first on my list. I think it only requires a lab appointment at the office.

Just throwing this out there, has she been tested for Lyme? Undiagnosed Lyme can have a ton of neurological and cognitive issues involved.

http://www.canlyme.com/patsymptoms.html

[Misty]

I have Celiac and one of my dds (adopted) is sensitive to gluten. I had no GI symptoms. It can skip generations because you can have the gene but not Celiac Disease. It can develop at any time. You need a blood teat to test specifically for Celiac. I was diagnosed at 33.

 

This is true. My gene was turned on at age 22, when my first daughter was born.. That's when my rashes started and my weight issues (I'm underweight) as well as my panic disorder. (you can be overweight and still have Celiac though)

 

One thing to keep in mind though, is when you have a silent Celiac gene that has not yet been triggered, you might still have a gluten intolerance.. My friend has the gene for it, but it has not yet been turned on.. she considers herself to be gluten intolerant and does not eat gluten at all. Her husband has the gene for it too and his has been turned on. Their daughter has had full blown Celiac since birth as well as a wheat allergy, though this wasn't diagnosed until age 4.. This child can't so much as smell gluten or she breaks out in rashes and starts running in circles, won't sleep, etc.

 

Someone mentioned that mainstream doctors don't believe in IgG allergies.. This is starting to change, slowly.. There is more and more evidence that these things are affecting people so they are starting to sit up and take notice.. Mainstream doesn't heal people though.. They stick band-aids (pills) on everything.. So I tend to listen to those who actually heal, which would be the naturopaths and homeopaths and/or functional medicine doctors and integrative medicine doctors.. These are all great doctors who really know how to treat issues from a functional, whole body viewpoint. Not just prescribing this cream for that rash, this pill for that headache, this pill for those sleep issues, etc. etc.. A good doctor will figure out why you have all these problems, and treat the cause, not just put patches all over you and send you on your way until you need another patch. Ridiculous medicine, IMO.

[AimeeM]

We will definitely see as many MDs as necessary to get an answer. We do not plan to use alternative or homeopathic medicine. I respect the views of those who do use this type of diagnostic and treatment tool; but it isn't for us.

This is true. My gene was turned on at age 22, when my first daughter was born.. That's when my rashes started and my weight issues (I'm underweight) as well as my panic disorder. (you can be overweight and still have Celiac though)

 

One thing to keep in mind though, is when you have a silent Celiac gene that has not yet been triggered, you might still have a gluten intolerance.. My friend has the gene for it, but it has not yet been turned on.. she considers herself to be gluten intolerant and does not eat gluten at all. Her husband has the gene for it too and his has been turned on. Their daughter has had full blown Celiac since birth as well as a wheat allergy, though this wasn't diagnosed until age 4.. This child can't so much as smell gluten or she breaks out in rashes and starts running in circles, won't sleep, etc.

 

Someone mentioned that mainstream doctors don't believe in IgG allergies.. This is starting to change, slowly.. There is more and more evidence that these things are affecting people so they are starting to sit up and take notice.. Mainstream doesn't heal people though.. They stick band-aids (pills) on everything.. So I tend to listen to those who actually heal, which would be the naturopaths and homeopaths and/or functional medicine doctors and integrative medicine doctors.. These are all great doctors who really know how to treat issues from a functional, whole body viewpoint. Not just prescribing this cream for that rash, this pill for that headache, this pill for those sleep issues, etc. etc.. A good doctor will figure out why you have all these problems, and treat the cause, not just put patches all over you and send you on your way until you need another patch. Ridiculous medicine, IMO.