What to do next? ADD-inattentive or....?

[infocrazy]

DS1 is 8, 3rd grade. He has always been a daydreamer, immature, only interested in what he wants to do, he transitions fine normally although he HATES doing homework. He does not like Math and although he knows most of his math facts, still has a delay in the speed math aka does terrible on timed math tests.

Last year, in 2nd, I requested an evaluation from the school because the teacher and I thought that there might be something going in terms of processing delays and/or executive function. After a very thorough testing, he scored very well on all the analysis. I did not think that he was going to qualify for services, but I did think he would score closer to the line...he ended up well above average for all of the categories except processing speed which was ~13% (WJ-III/NU COG all other scores well above average) and Listening Comprehension was 37% (WJ-III/NU ACH). Although his teacher suspected some ADD, he somehow had a huge turn around and scored very well on the spring version of the NWEA (70% v 10% in the fall) so we thought whatever it was, he had seen the light so to speak.

Teacher Concerns:

Daydreamer--not at all a behavior problem but often "not there"
Often when answering a question in class (which is rare) he doesn't seem to make sense. For example, is there more water or land on earth, why? Land, because the sun shines on Earth.
Still writes very short sentences, scattered thoughts, no real structure. Wrote about our vacation to Disney...and only talked about the plane ride in more diary form than story if that makes sense.
He scored very low on the NWEA testing (back to <10%) and I assume the state test (no results yet).
VERY good handwriting bordering on perfectionism.



Our concerns:

Obviously school
At home, we are still dealing with maturity issues--crying, tantrums, drama for no reason--fortunately not ever at school and only in public to us although he does not seem to realize in public. For example, he would NEVER act like that for a friend's parent ("because they are nice!") but absolutely will for me.
He does have some minor sensory issues (hates waffle weave shirts, does a chewing thing when he is daydreaming at times--can stop if I mention it, for hockey must have socks pulled up and shirt tucked in, etc...)
He does stare off and it is almost like a trance. I had a history of childhood seizures so I had him tested for absence seizures but the sleep deprived EEG came back normal
I think he has problems going from the board/computer to his paper. He does not copy well in those settings.


So long story short, the school pretty much says "it" is definitely affecting his schoolwork, but since the evaluation was so high, they don't think he qualifies for services and neither of us know really WHAT he would need anyway! She suggested we go to the ped and look into ADD. Our ped, who has called 3 times after office hours!, has consulted with a pediatric psychologist and they think that he is borderline ADD-inattentive but it may be something totally different. He seems to check off boxes all over the place, but not consistently in the same categories. She definitely thinks it is not a maturity issue at this point.

In terms of ADD: he will read for hours (although he likes magazines, comic style books, he just started a Charlie Bones (?) but I asked him about it at page 109 and he didn't "want" to tell me the story), plays legos for hours, elaborate imaginative play with long time frames of play. Although he does NOT want to do homework, once he gets over the 5-10 min tantrum that occurs about 50% of the time, he will sit and do it for the most part but at times half-heartedly and god forbid I say one is wrong. He is my best sleeper and sleeps about 10-11 hrs a night--and VERY rarely interrupted unlike my 3 and 6 yo boomerangs.

I really don't feel like it is ADD, but the ADD not ADHD may just be throwing me off because I think of the H?

So, the ped thinks we have three choices at this point:
1. Medicate with a low dose stimulant.
2. Do a complete neuropsych exam.
3. Do both.

She definitely leans towards 1. She thinks we should try it and see what happens. I think that there could be a result even for kids WITHOUT ADD because isn't that why college students take it? I am probably pretty resistant to that idea. I told her I lean toward 2. He seems to check off boxes all over the place, but not consistently in the same categories. She definitely thinks it is not a maturity issue at this point.

Part of me REALLY just thinks it is a big case of not caring because it isn't fun...I don't know, maybe wishful thinking...although that would be really frustrating too.

So, if you have made it through my saga, thanks!, and thoughts? I am trying to enroll him in a Tae Kwon Do studio that has seen "great results!' with ADD kids and have a program geared to them. He did a practice class and LOVED it, but who wouldn't?

Thanks for any responses! I am just at a loss at this point and want to do right by my kid. He and I are SOOOOO different, so it is just really tough. I am very type A and struggle with not having the answers.

[crl]

I strongly vote 2.

Catherine

[smilequeen]

I strongly vote 2.

Catherine

Me too.

I have a boy with ADHD Inattentive type. Not everything you wrote resonates with me, but a whole lot of it does.

At school he was unfocused, not a behavior problem, but often just sat there, daydreaming, looking around, tapping his pencil, not getting his work done. Therefore, falling quickly behind even though he is extremely bright. He is SO much better on his meds. He caught up quickly and then some within weeks. He's so much more confident and happy and he LOVES school now. School. Not just seeing his friends every day. Huge change :)

He will spend hours doing things he really wants to do (playing lego, chess games, sports). It's hyperfocus and is a symptom of ADHD. He can not make himself focus on things he is not as excited about.

He was having a lot of meltdowns that were being attributed to maturity, but were really a result of the combination of an expressive language delay and his ADHD. He is SO much better on his meds.

We are still working on some things at home. He can't remember a series of instructions. Like go upstairs, get your pajamas on, brush your teeth. He'll get upstairs and then I'll find him 20 minutes later half dressed playing with toys. And I'll spend 10 minutes reminding him to finish getting dressed, reminding him to keep brushing his teeth, etc. Same with dinner...reminding him to keep taking bites and focus on his eating. Mornings and evenings, weekends...all unmedicated times where we are trying to work on those skills more intensely.




We did a complete neuropsych evaluation and a complete Learning Disability eval for him. He IS medicated and it has been life changing, but I would definitely want the complete, thorough evaluation and some assurance with the diagnosis before going that route. There are just too many other things that mimic ADHD and I'd want to make sure everything was covered before going the medication route. I'm clearly not opposed to meds, but there really needs to be a proper diagnosis first.

[Gena]

I would definitely go for a full nueropsych eval. I would also do an eval for Auditory Processing Disorder. APD is one of those conditions that can mimic ADHD. Since the school testing found both processing issues and listening comprehension issues, I would consider APD as a possibility.

[inmypjs]

Personally I would not medicate for ADD based on ped eval only. They are going on your reports. And it doesn't sound like you are for sure that he has ADD. I'll be honest, it really irritates me that school suggests you "look into" ADD. Lots of other stuff can be going on that is just as likely! I am not opposed to meds either, but without a diagnosis, I would not give medication and see what happens. Definitely option #2, because it will help you know what you are dealing with.

How was his working memory? Or was that tested by the school? I'm wondering if, besides processing speed, that is also low. There's a book called "The Homework Trap" written by a psychologist. He discusses that low processing speed and working memory are hidden disabilities and greatly affect school performance. He's got a lot of suggestions for accommodations.

Have you had him tested for CAPD (Auditory processing disorder)? I'm asking because it is easy to miss and almost always mistaken for ADD. Look for audiologists and SLPs, but you'll have to call them to find out if they have expertise in this area.

If you haven't looked at it, I highly recommend the book "The Mislabled Child" by the Eides. Great resource when you know there are some differences but aren't sure what they are.

Good luck.

[sariana]

I am not a psychologist or any other -ist, but it doesn't really sound like ADD to me. Maybe I am fixating on the handwriting thing--people with ADD tend to have poor handwriting.

Have you had him evaluated for autism? The trances and nonsensical answers sound a bit like detachment from reality and/or creating his own world. How are his social interactions with peers? Does he prefer same-age friends, or does he gravitate toward people older or younger than he is?

I agree with PPs about looking into processing disorders, as well.

Good luck. It is so difficult to know something is "off" and not be able to identify it--not because you need a "label" but just so you can chart a course of action to help him.

[egoldber]

I do think it could be ADHD-Inattentive. Third grade is a very typical time for it to be diagnosed. That is when the school expectations ratchet up and the homework can become overwhelming. Many kids can do well on testing when it is 1-1 because it is the evaluators job to keep them on task and focused. The problems come when the kid is in a large classroom with lots of distractions, lots of boring tasks, and no one there to keep him focused on the task.

My personal bias for evaluation is a neuropsychologist. So I would start there and see what they suggest.

[hillview]

I strongly vote 2.

Catherine
:yeahthat:

[Simon]

I also vote 2, but I am a bit biased. We just scheduled cognitive neuropsy. testing for Ds2 but no one has suggested a drug trial for us. He is much younger than your son but also checks boxes in a lot of different areas. I find it interesting that he shares some traits with your son like good sleeper, nonsensical answers at times, difficult to catch his attention and also the questions about absence seizures. CAPD/APD is very high on my personal list of possibilities, along with some sensory stuff related I think to being in groups of kids or distractions from environmental input (noise, light). FWIW, I was told that the sleep deprived EEG would be unlikely to show absence seizures at all, you need the 24-36 hour day time version. We have had one normal and now one abnormal EEG but no one is pushing for the longer EEG testing yet. You can also schedule now and then cancel if you change your mind. We couldn't get an appointment before March.

[kboyle]

ds1 was diagnosed with add-inattentive in 1st grade when it was affecting his school work. EVERYTHING you described was him. he's always in lala land (or Charlie-time as we call it), transitions perfectly fine from one thing to another, no focus at school, hard to remember directions or order of things to do, i have a post it on his school agenda or hw folder that reminds him to turn this or that in, or bring stuff home that has helped in the past two yrs (he's in 5th grade), he can focus on HOURS playing video games, drawing, or reading (he reads for over an hr every night), when he's in DEEP focus he chews his tongue in manner that drives me insane, but he rarely notices that he's doing it, he can stare for HOURS if he's extremely bored and not even notice, he used to have minor sensory issues (nothing too loud, doesn't like hair brushing, certain clothes would bother him) but not as much any more, used to have problem copying from board/computer to paper but is getting much better since it's a daily requirement now.

we medicated and it was the best thing for him. after about 2 wks of his body getting adjusted there was a major change. his school work improved because he was able to focus, he no longer was impatient with his brothers at home, he was actually able to follow simple directions, prior put your shoes away and hang your coat was too much for him to think about (yes, just those two objectives), afterward i could give him a short list of things and he wouldn't look confused (get dressed, eat breakfast, brush teeth, put shoes on) just simple daily tasks used to be confusing even though we did it daily it was like he was hearing it for the first time every morning, after the meds he knew what was expected. he hasn't increased dosage in the 4 yrs he's been on it and he is doing extremely well, he was on principals roll (straight A's) in an excelerated class. hw used to suck and now he does it w/o me asking, or it will be done by the time he gets home from school.

i didn't want to medicate either, but it was the BEST choice for my inattentive child, so don't cross it off the list without giving it a shot, it did wonders for our relationship with him, and his feelings about school. at 10 he understands what it's for and he knows how it affects him if he doesn't take it.

[maestramommy]

I am going to watch this thread because you have described my DD2 almost to a T. Esp. the part about answering questions that make no sense, although she LOVES to raise her hand. Also, she tends to be sensory seeking, picking her lips, noise, teeth, nails. I guess in your shoes I would go for option 2 first before option 1.

[mom2binsd]

I could have written your post, except that DD has terrible hand writing AND we went through a divorce when she was in 2nd grade....fast forward to last year, it became unbearable for all, and after trying many strategies with great school support we tried medication, Medadate ER, and she is doing sooooo much better. She is in 5th grade, even she noticed a difference and says she's not spaced out all the time, and no side effects, in fact if she would stop eating and growing it might be good.

I'd get the full neuropsych eval and see what they say.

[hellokitty]

OP, much of our description also fits my 4th grader to a T. I haven't pursued diagnosis, b/c they really push meds in our area, and I have friends whose kids are on meds, that suffer a lot of side effects, so it makes me really leery. The ppl I know whose kids are on meds and constantly trying new meds or adjusting doses, it just seems like even with meds aren't a perfect solution either.

[JustMe]

I really don't see many good reasons for why you wouldn't start with #2 (but of course I may be missing something).

I would definitely wonder about central auditory processing disorder or other language issues. OTOH, now that I wrote that, dd had a neuropscyh but we still had to have an additional auditory processing eval with an audiologist. Nevertheless, I would probably still start with the neuropsych.

[minnie-zb]

Start with #2.

[ladysoapmaker]

I would start with #2. DS#2 was diagnosed with ADD-Inattentive in late 2nd grade. In addition it low dose meds we also saw a behavioral therapist. I think there may be a touch of sensory issues. Now that he's hit puberty, we need to get a new eval. He's been having some issues, though I think the wrestling (daily exercise) has been helped reduce some of them.

I have never been formally diagnosed however I do know that the Sensory Integration Dysfunction & my learning disability I have can also go hand in hand with ADD. and you described me growing up almost to a T.

Jen

[egoldber]

I really don't see many good reasons for why you wouldn't start with #2

I guess it depends on how much the kid is struggling in the moment. The results from stimulant meds can be immediate and dramatic. And a neuropsych eval can take a long time to get scheduled, can take a long time to get the results, and is very expensive. My insurance at the time did not cover these at all. I can get them reimbursed as OON with my current insurance, but older DD's eval was $2000 OOP.

I guess from my perspective, I see little downside in trying a short acting stimulant. They work very quickly and wear off quickly, so it is pretty easy to see if they help or not. It is true that all people can see cognitive improvement with a stimulant, but I think there is still valuable info to be gathered from a trial.

Also, trying a stimulant does not mean ruling out a neuropsych eval. If it seems to work and you want to continue, then you just go off the meds the day before the evaluation. There is no need to taper off like with SSRI type medication.


The ppl I know whose kids are on meds and constantly trying new meds or adjusting doses, it just seems like even with meds aren't a perfect solution either.

It is true that there can trial and error. In general, it is try and get the most effective timing with the medication. Everyone metabolizes the meds differently, so a med that may last one kid through the school day may not last all day for another or may keep another kid up all night. So they can be frustrating, it isn't all roses and light. :)

[Kindra178]

I am going to throw something out there that may raise the ire of the collective BBB. Could all this be because he is young for the grade? At least one study established that the students who were born closest to the state's school cut off, regardless of where that might fall, had a measurably higher percentage of ADHD, including ADHD inattentive type, diagnoses. Is the work just hard for him so that he shuts down?

[crl]

I guess it depends on how much the kid is struggling in the moment. The results from stimulant meds can be immediate and dramatic. And a neuropsych eval can take a long time to get scheduled, can take a long time to get the results, and is very expensive. My insurance at the time did not cover these at all. I can get them reimbursed as OON with my current insurance, but older DD's eval was $2000 OOP.

I guess from my perspective, I see little downside in trying a short acting stimulant. They work very quickly and wear off quickly, so it is pretty easy to see if they help or not. It is true that all people can see cognitive improvement with a stimulant, but I think there is still valuable info to be gathered from a trial.

Also, trying a stimulant does not mean ruling out a neuropsych eval. If it seems to work and you want to continue, then you just go off the meds the day before the evaluation. There is no need to taper off like with SSRI type medication.



It is true that there can trial and error. In general, it is try and get the most effective timing with the medication. Everyone metabolizes the meds differently, so a med that may last one kid through the school day may not last all day for another or may keep another kid up all night. So they can be frustrating, it isn't all roses and light. :)


Ds actually had an ADHD dx and went on one of the stimulants. He had some side effects, including the expected eating less (for a kid who was already skinny) and sleeping less (for a kid who already had trouble sleeping). He also had a serious mood change. He was sad or angry a lot. (We took him off after two weeks.) So there are definitely downsides to the meds and I would be unwilling to accept those risks in the absence of a dx that really called for them. I would also be concerned that there might be ADHD plus another dx at play and treating the ADHD might mask the other dx and delay effective treatment/accommodations for that other dx.

Catherine

[Indianamom2]

Me too.

I have a boy with ADHD Inattentive type. Not everything you wrote resonates with me, but a whole lot of it does.

At school he was unfocused, not a behavior problem, but often just sat there, daydreaming, looking around, tapping his pencil, not getting his work done. Therefore, falling quickly behind even though he is extremely bright. He is SO much better on his meds. He caught up quickly and then some within weeks. He's so much more confident and happy and he LOVES school now. School. Not just seeing his friends every day. Huge change :)

He will spend hours doing things he really wants to do (playing lego, chess games, sports). It's hyperfocus and is a symptom of ADHD. He can not make himself focus on things he is not as excited about.

He was having a lot of meltdowns that were being attributed to maturity, but were really a result of the combination of an expressive language delay and his ADHD. He is SO much better on his meds.

We are still working on some things at home. He can't remember a series of instructions. Like go upstairs, get your pajamas on, brush your teeth. He'll get upstairs and then I'll find him 20 minutes later half dressed playing with toys. And I'll spend 10 minutes reminding him to finish getting dressed, reminding him to keep brushing his teeth, etc. Same with dinner...reminding him to keep taking bites and focus on his eating. Mornings and evenings, weekends...all unmedicated times where we are trying to work on those skills more intensely.




We did a complete neuropsych evaluation and a complete Learning Disability eval for him. He IS medicated and it has been life changing, but I would definitely want the complete, thorough evaluation and some assurance with the diagnosis before going that route. There are just too many other things that mimic ADHD and I'd want to make sure everything was covered before going the medication route. I'm clearly not opposed to meds, but there really needs to be a proper diagnosis first.

I haven't read all the replies, but I have a 9 yr. old DD with anxiety and ADHD-inattentive type, along with a lot of other checked boxes that don't fit a specific category. She is quirky but doesn't quite fit any one thing perfectly. A lot of what you wrote resonates with me as well. We don't have a definite answer (other than anxiety meds which were definitely needed) but I think ADHD fits, it's just harder to notice when it's inattentive type because the kids with this type don't cause a lot of problems in the classroom.

[egoldber]

Catherine, absolutely there can be side effects to stimulants and I hope I didn't give the impression that there weren't. However, there can also be downsides to waiting a long time for a consult. Or doing a neuropsych consult when a family could really struggle to afford it (no idea if this is the OP's case, just saying that it is a factor for many families.) That's why I said it depends in part on how much the child is currently struggling. A kid who is really struggling in school to maintain grades and master material and/or behaviorally may benefit more from an early trial while waiting for an additional consult.

I don't know what is best in the OP's case, I was responding more to what I saw as a general question of "why would anyone ever do a med trial vs. waiting for a neuropsych consult".

[crl]

Catherine, absolutely there can be side effects to stimulants and I hope I didn't give the impression that there weren't. However, there can also be downsides to waiting a long time for a consult. Or doing a neuropsych consult when a family could really struggle to afford it (no idea if this is the OP's case, just saying that it is a factor for many families.) That's why I said it depends in part on how much the child is currently struggling. A kid who is really struggling in school to maintain grades and master material and/or behaviorally may benefit more from an early trial while waiting for an additional consult.

I don't know what is best in the OP's case, I was responding more to what I saw as a general question of "why would anyone ever do a med trial vs. waiting for a neuropsych consult".


Yes, I definitely understand that point of view. I just think the downsides are too substantial to risk a meds trial without feeling confident of the dx. I think our perspectives are colored by very different experiences with the meds.

Catherine

[Melbel]

I do not have time to read all of the thoughtful responses, but wanted to weigh in based upon our experience and considerable research. The cluster of symptoms, especially the "brain fog", mood swings, wax/wane of symptoms and sensory sensitivity set off red flags for Lyme Disease. I am not saying your DC has Lyme (or those who posted with similar symptoms), but that Lyme needs to be carefully considered as part of the differential diagnosis (which rarely happens because the symptoms are presenting differently than what most doctors learned in med school).

We have seen first hand how symptoms can be subtle clusters, or completely debilitating. Many with relatively controlled Lyme will spike major symptoms during hormonal fluctuations (pending puberty around age 11 is big, pregnancy, menopause), a major stress (death or divorce are 2 big ones), another illness (mycoplasma, another tick bite with infections, EBV, and other infections), or a major injury/surgery. Both of our older children with Lyme had subtle symptoms in the earlier years, developed headaches at age 9, and spiked more symptoms at age 11. Our son's thorough neurological workup, including neuropsychiatric testing did not uncover the problem. We, along with many other similarly situated parents, have found that neurologists rarely consider Lyme and often downplay the possibility.

Symptoms of Lyme Disease in Children
At the highest risk of acquiring this debilitating disease are children, ages 5-14. Indeed, around 25% of all reported cases are children. According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections. The resulting neurologic symptoms of Lyme disease are often misdiagnosed. Lyme Disease can also be transmitted to a child during pregnancy. Lyme pediatric specialist Charles Ray Jones, MD and other leading Lyme specialists have compiled a list of common symptoms of infection in young patients:

• fatigue unrelieved by rest
• insomnia
• headaches
• mitochondrial dysfunction
• syncope, POTS or Neurally Mediated Hypotension
• nausea, abdominal pain
• seizure disorders
• impaired concentration
• poor short-term memory
• inability to sustain attention
• difficulty thinking and expressing thoughts
• difficulty reading and writing
• overwhelmed by schoolwork
• difficulty making decisions
• confusion
• outbursts and mood swings
• fevers/chills
• dizziness
• noise and light sensitivity
• increased incidence of ear and throat infections
• increased incidence of pneumonia
• irritability
• joint and body pain
• poor muscle tone
• gastro esophageal reflux
• small windpipe (tracheomalacia)
• cataracts and other eye problems
• developmental delays (language, motor)
• learning disabilities
• psychiatric problems (anxiety, depression, OCD)
• autism or Asperger's type presentation

Children do not typically have nearly all of these symptoms, but rather, a cluster of seemingly unrelated conditions that are often overlooked by pediatricians and specialists. Often times, a child is diagnosed with evolving conditions, because their symptoms and presentation do not quite "fit", but doctors believe that something is wrong.

Among Jones’ patients, 50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).

Lyme 101
As background, Lyme Disease is caused by a spirochete (spiral shaped) bacteria (Borrelia burgdorferi) and is transmitted by certain species of black-legged ticks, as well as the lone star tick commonly found in southern states. The nymphal, or immature, form of the tick, which is about the size of a poppy seed, causes most human cases. Because their bite is painless, many people do not realize they have been bitten. Furthermore, ticks harbor many other diseases that can be transmitted to humans aside from Lyme Disease, including other bacterial infections, viruses or parasites. Indeed, there are many diseases (some life-threatening) carried by ticks that can complicate tick-borne disease diagnosis, treatment and recovery, including, but not limited to Babesia, Tularemia, Anaplasma, Mycoplasma, Ehrlichia, Rocky Mountain Spotted Fever and Bartonella.

Lyme and tick-borne diseases are prevalent across the entire United States. Fewer than half of patients with Lyme disease recall a tick bite. Likewise, fewer than half of patients with Lyme disease recall any rash. Although the bulls-eye red rash is considered the classic sign to look for, it is not the most common dermatologic manifestation of early Lyme infection. Atypical forms of this rash are actually far more common. It is important to note, however, that the Erythema Migrans rash is a clear, unequivocal sign of Lyme disease and requires no further verification prior to starting six weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.

The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. Lyme is called the “great imitator,” because it can mimic ailments such as Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), fibromyalgia, lupus, chronic fatigue syndrome, Parkinson’s, Alzheimer’s, and even autism.

Infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system, including the brain, as well as the heart, joints and other musculoskeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.

Through our journey, we have learned that all aspects of Lyme Disease are controversial. There is a tremendous divide as to the appropriate standard of care. According to the CDC and IDSA, Lyme Disease is hard to catch and easy to treat with 30 days or less of antibiotics (even if the infection has become disseminated and/or there are co-infections). On the other hand ILADS trained doctors, known as Lyme Literate Medical Doctors (LLMDs) believe that persistent symptoms after initial treatment reflect on-going infection and gauge the duration of treatment by the patient's individual clinical response.

The central difficulties in the diagnosis and treatment of Lyme Disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without something as basic as markers for disease status, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment.

Due to difficulty in culturing the actual bacteria, Lyme Disease tests rely upon an antibody response. The two tier testing paradigm for Lyme Disease misses approximately 1/2 of actual cases pursuant to numerous peer reviewed studies. Due to testing unreliability, most Lyme Literate Medical Doctors (LLMDs) advise patients to skip the initial Lyme Disease ELISA screen, and instead start with the confirmatory test, the Western Blot. Many prefer to have a Western Blot through the lab iGeneX (www.iGeneX.com (http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.iGeneX.com%2F&h=aAQFZbVzV&s=1)) for three reasons: (1) iGeneX tests for multiple strains of Borrelia Burgdorferi (Bb), the bacteria that causes Lyme Disease (commercial labs such as Labcorp and Quest only test for a single strain of Bb); (2) IGeneX also considers additional highly relevant bands 31 and 34 (assuming you did not have the Lyme vaccine that was briefly on the market); and (3) iGeneX reveals intensity for specific bands (not present, equivocal, low, medium and high).

Western Blot test results will include both IgG and IgM assays. It is critically important that one not look at the NEGATIVE or POSITIVE summary result of the Western Blot test. Instead, it is important to carefully consider Lyme-specific bands (those bands that represent evidence of serological exposure to Bb). Many Lyme doctors believe that a single Lyme-specific band, along with clinical presentation, is sufficient to diagnose Lyme Disease (with an acknowledged 3% false positive rate). Likewise, in China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot. In comparison, the CDC’s surveillance criteria require a total of seven (7) positive bands; iGeneX requires a total of four (4) positive bands. The following bands are generally considered to be Lyme-specific: 18 (some sources), 22-25, 28, 30, 31, 34, 35, 37, 39, 58 (some sources), 66, 83 and 93.

[dogmom]

My first thought was definitely 2, but after some thought I can sort of see the peds point. I mean, I am not sure if you are going to get a "clean" dx. He sounds a lot like a friends child who do go through it all, waited a year, then tried meds, which made a big difference. So I can see a pediatrician wondering what you will get out of it past the wait time for eval and the expense. You will probably wind up back here again.

I guess honestly I would need to know how long the wait would be and I might try option 3 (both).

[infocrazy]

Wow, thanks everyone!!! To answer some questions:


Have you had him evaluated for autism? The trances and nonsensical answers sound a bit like detachment from reality and/or creating his own world. How are his social interactions with peers? Does he prefer same-age friends, or does he gravitate toward people older or younger than he is?

No eval for autism and I would be surprised. He is VERY social, cuddly, empathetic, and anti all the admittedly stereotypes I have with autism personalities. We only know a few kids with autism and they are deeper on the spectrum than say aspergers, and to be honest, my only frame of reference for that would be Max on Parenthood, which does not describe DS at all...but obviously not a clinical diagnosis. :bag

Socially, most of our neighbors are older which he plays with most often and of course his younger siblings. Until this year, I would have said he had tons of friends at school, but unfortunately they really keep the classes together during the day and it is a tough year for him. The other boys in his class are all sports, all the time, and are very rough/tough. DS enjoys sports, but from a recreational part, where most of these kids play travel in multiple sports, so a very different dynamic. Aside from 3 boys in the class (1 a bully), the sports boys are all in the "playgroup since birth" subset. They don't exclude, so much as not include. So it has been a rough year socially since his normal group of friends got split up. He does have a best friend and a group that he plays with at recess--the only time he can play with the other classes. If we go somewhere he always makes a friend, he always connects well at activities/teams although baseball wasn't great this year, but I could write some BP on that one so not a DS issue.


FWIW, I was told that the sleep deprived EEG would be unlikely to show absence seizures at all, you need the 24-36 hour day time version. We have had one normal and now one abnormal EEG but no one is pushing for the longer EEG testing yet. You can also schedule now and then cancel if you change your mind. We couldn't get an appointment before March.

Yes, I wondered about that. I had febrile seizures frequently as a toddler. Until last week, that is all I thought it was although I was medicated until I was ~6. I mentioned to my mom about it and she then says I was actually medicated for petit mal, which was a surprise to me. Maybe I will look into that again.


I would definitely wonder about central auditory processing disorder or other language issues. OTOH, now that I wrote that, dd had a neuropscyh but we still had to have an additional auditory processing eval with an audiologist. Nevertheless, I would probably still start with the neuropsych.

Prior to the school testing, I thought auditory processing was going to be the issue. They did a form of it though with the WJ-III/NU COG and he scored 98% on that section (98% on Sound Blending, 65% on Auditory Attention). Someone else asked about working memory--if that is the same as short term memory he was 94% for that. That really threw me off last year, and he did so much better that I just didn't think it could be the issue.


I am going to throw something out there that may raise the ire of the collective BBB. Could all this be because he is young for the grade?

Well, this has certainly crossed my mind. Our cutoff (which is now changing) was Dec 1 at the time. DS is the end of July. I NEVER even considered it since I thought he would be in the middle! Uh, no. For a variety of reasons, I know that 20% of the class was red-shirted. That said, they were primarily OCT/NOV. There was less red-shirting in what would now be the 2nd grade, and he would be the oldest by a few months if we had held him back. Although I do wonder, and it may affect our decision to start DS4, that ship has sailed. He CAN do the work, he just has NOOOOOOOO interest. I do think that the added maturity would have helped, I think we likely would be in this same scenario.

No one has suggested having him repeat at this point, and I would really HATE to do it at this point because of the social stigma, particularly since I don't think it would be effective.


I guess it depends on how much the kid is struggling in the moment.

Well, that is a good question. His first report came back better than I expected. They are "graded" on NotYet (F), 1 (D+/C-), 2 (C+/B-), and 3 (B+/A). I'm sort of guessing on the grade equivalent but that is my assumption. I think the biggest issue is that he is clearly CAPABLE of more but instead he is not doing well. He is in a pull out math group, so he had 1 there, which I anticipated. He can DO math, just not fast which is currently an issue. He also now HATES math as a result which certainly does not help. Everything else was 2, except for I THINK social studies and/or science which he got a 3. At the conference though, it is CLEAR that his teacher thinks he is really struggling. He also does not do well on standardized/computer testing which is of course their "guideline". Plus, sadly, his teacher EXPECTS his answer to be odd when he offers one--so that is obviously not good.


My first thought was definitely 2, but after some thought I can sort of see the peds point. I mean, I am not sure if you are going to get a "clean" dx. He sounds a lot like a friends child who do go through it all, waited a year, then tried meds, which made a big difference. So I can see a pediatrician wondering what you will get out of it past the wait time for eval and the expense. You will probably wind up back here again.

Yes, I DO see WHY she is suggesting it, I just think there is no guarantee that we will actually be treating the actual issue. I feel like if he responds to meds for any reason, it will Aha! We have the answer! instead of continuing on for an underlying issue.

At this point, i am going to talk to the ped tomorrow (she is off Tuesdays) and see how quick we can get a neuropsych consult. I'm hoping to get it before the end of the year before my insurance changes(!) and because really they just have 1 week before school break so if we medicate, I will likely wait until Jan to start it--thoughts on that?

A few more questions:

The daydreaming for ADD, does that literally LOOK a trance?
If you start medicating, when do you stop? If he responds, will that mean he will always need it?
I have seen fish oil supplements have helped, but then I saw the thread on prostate issues...Thoughts?
What makes up a neuropysch exam?
How about auditory processing?
Anything else?


Thank you sooooo much!

[maestramommy]

No one has suggested having him repeat at this point, and I would really HATE to do it at this point because of the social stigma, particularly since I don't think it would be effective.



Our cutoff is Sept 30, and DD2's bday is end of May, so she is well within the limits. That said, at the end of her 4s year and last year we did ask her IEP team if they thought holding her back was advisable, because of the non-academic issues she was having (never hearing/getting the directions and doing a task completely wrong), and they said no, she was definitely not a candidate for retention. She was working at or above grade level, so whatever her issues where they were not yet affecting her performance. She is still too young to be evaluated for everything you are asking about for your DS, but one thing her SLP said stuck in my mind. That is, the quirks she has and the funny way she has of looking at things, she didn't think they were things DD2 is going to outgrow, they are simply part of her. That was based on her experience with kids K-4. When DD2 gets into one of her moods/episodes you can't budge her, she is about as rational as a 4year old. Yet she can be very sweet, affectionate, is strongly bonded with her sisters and us, as well as some other grown ups and big kids in her life. I really don't know what to think, but I'm reading some literature right now our guidance counselor gave us, and it appears she may be a "spirited" child, minus the sensitivities.

DD2 also hates homework, and in particular hates drilling her math facts, at least in the current format. She cannot wait to do Xtra Math, which is math drills online, because that is what DD1 is doing, and she gets to do it without my help :rolleye0014: She is still counting on her fingers for anything bigger than 5, yet, she created her own math worksheet yesterday (because they didn't send one home) and it's a perfect representation of old and new concepts she has been working on the last month, with all the answers and everything. I don't know what to think anymore. Clearly she understands some things.

[infocrazy]

DD2 also hates homework, and in particular hates drilling her math facts, at least in the current format. She cannot wait to do Xtra Math, which is math drills online.

Yea, the Xtra math fun was VERY short lived for us! :rotflmao: It doesn't help that MY DS2 (actually 4 days older than your DD2!) is a numbers kid! He can beat DS1 on the timed Math tests and actually scored better on the Math portion of the NWEA than DS1!!! We thought maybe it would put some competition into DS1, but no, he just congratulated him :banghead: (we didn't share scores, just the timed drills I make DS1 do that DS2 does for fun!)

DS2 is a breath of fresh air for homework though! Really, it is highlights the issues with DS1 to see how different DS2 behaves with school but they definitely have different strengths. Actually, DS1 is an excellent speller, which makes the math facts issue more confusing since it should be about memorization but he can't stop calculating!!!!

[sariana]

I want to say more but can't tonight--maybe tomorrow. But I do want to note that my DS also is a good speller (and can recite things verbatim), but he CANNOT memorize his math facts. He just can't.

However, his number sense is very good. He can figure out "tricks" to solve arithmetic problems that he can't remember by rote. He understands how numbers interact with each other.

Last year in 3rd grade his teacher pegged him as a poor student. At his IEP meetings DH and I would try to point out that he should not be getting Cs, mostly to deaf ears.

We just got his first trimester report card for 4th grade--all As and A+s. what a difference a good teacher makes! DS still cannot memorize his math facts, but his teacher neverthess marked math as a strength because she recognizes his ability with numbers. (Also, thank you Common Core!)

Sometimes people get caught up in the wrong things, and that comes through to our kids. Hey struggle because they come to expect it of themselves.

I want to respond more specifically to your long post, but I can't easily pull out quotes right now. I'll try to come back to this post tomorrow.

[infocrazy]

Thanks! DS1 also recites verbatim at times. I do not have a photographic memory, but it is very very good and I can "see" the pages. I do think DS1 does this at time. Sometimes if you ask him what he read, he ALMOST seems to choose key sentences and tells the story verbatim (or close). I have wondered if he is truly comprehending what he reads or just spitting back what he saw...if that makes sense. I am sensitive to it because of my memory skills--but the math has always puzzled me! He does SEEM to comprehend what he reads, but it is sometimes difficult to drag him out of it because it was hard enough to get him to read non-entertainment type text in the first place. He scores well on the comprehension evaluations because at this point, it is just generic Q and A, but I do wonder about the future where it is read this chapter and take a test, not just what types of foods did the Indians eat--bad example but you get my drift.

[ladysoapmaker]

A few more questions:

The daydreaming for ADD, does that literally LOOK a trance?
If you start medicating, when do you stop? If he responds, will that mean he will always need it?



Thank you sooooo much!

As a daydreamer, I can't tell you what it looked like however I can tell you it drove my mom nuts. I would completely space out and miss everything that was going on around me and getting my attention was hard. Mom would literally have to come over to me and touch me to get my attention. As I got older I did get better however I will occasionally have those moments if I'm completely by myself, though any noise will snap me out of it. When he was younger DS#2 didn't really daydream as much as get distracted easily.

As for medicating, when we put DS#2 on medicine, he choose to stop about 5/6 grade as the side affects were really causing problems. Though now that he has hit puberty, we are seeing him struggle again and we are thinking a new medication to help him get through this current rough patch. I personally was on medication for about a year. I found it did help. As I have a milder version and lots of learned coping skills, I have found though as an adult, I can use the meds however I do better with caffeine and structure. I have other friends who are the same way. This is part of the reason I insisted on having DS#2 see a behavior therapist in addition to having medication. I do have another friend with ADD-Hyper version and he needs the medication daily. I think it really depends on how it affects daily life. Can it keep you from learning, getting a job, or does it help you have a different perspective on everything?

I hope this helps. I know it has helped me as we've been getting frustrated with DS#2's grades and the lightbulb came on with the discussion.

Jen

[Gena]

I'm going to preface this by saying that DS's case is very complicated. He has ASD, but also has diagnoses for APD and ADHD-inattentive. The multiple diagnosis are controversial and debated among his medical team. Some feel that the APD and ADHD are part of the ASD and should be covered in that. Other doctors like to call out each issue separate issue. (He has other issues as well, such as vision impairment and a chromosome anomaly.)

The school had been reporting that DS has attention issues for the past couple of years. He's in a special education classroom, so they can deal with it, but it was definitely an issue for them. We had DS evaluated for ADHD by his psychologist (private, not school) several times. Each time he came up as borderline, but she really felt that his difficulties were more in line with autism than ADHD. The developmental pediatrician disagreed, and felt that the autism and the ADHD were 2 separate issues. We chose to handle it through supplements, environment, and behavioral techniques.

Last year, the teacher commented several times that DS's attention problems were getting worse and that it was impacting his academic progress. By the end of the school year, he was behind grade level in several areas. Over the summer, DH and I worked with him to catch him up, but he saw firsthand how difficult it was to keep him on task. We got a referral to a child psychiatrist who works with children on the autism spectrum (not all of them do).

It was a difficult decision, but we started DS on a low dose of a non-stimulant medicine (Tenex) for the ADHD back in September. He's been doing really well on it and we've seen a big difference in his attention. His teachers have noticed too (we did not tell them we were starting medication). Stimulant meds are not an option for DS, which is one of the few things his entire medical teams agrees on. His classwork has improved tremendously since starting the medication.

Regarding math and spelling:
DS has hyperlexia, so he is a natural speller. When the school did his achievement testing in the 2nd grade, he hit the ceiling of the test, which was about the 14 grade level. He has a photographic memory. He has some strong math skills, including number sense and spatial relations. But he was terrible at memorizing his match facts. Last year, we drilled the multiplication tables constantly and it was painful for all of us. After several weeks of being on the medication, DS's arithmetic improved greatly. He's made huge progress in the past couple of months. The teacher is amazed and so are we.



Prior to the school testing, I thought auditory processing was going to be the issue. They did a form of it though with the WJ-III/NU COG and he scored 98% on that section (98% on Sound Blending, 65% on Auditory Attention).

This is not testing for auditory processing disorder. APD testing has to be done by an audiologist in s soundproof booth and is very extensive. DS's testing for APD took 2 hours. DS dis really well on a couple of areas, like phoneme awareness, and auditory attention in the presence of background noise. But he very poorly in other areas, mainly dichotic listening. Dichotic listening is the ability to attend to one conversation in an environment with multiple conversations or multiple sources of verbal input. To but that in everyday terms, think of having a conversation at a party where there are multiple groups of people talking, music in the background, etc. or think of a busy classroom during group work. This is something that is not helped by the medication, but needs to be worked on environmentally. It's a huge help to understand that in these situations it isn't that DS is not paying attention, it's that he is lost in all the stimuli.




A few more questions:

If you start medicating, when do you stop? If he responds, will that mean he will always need it?
I have seen fish oil supplements have helped, but then I saw the thread on prostate issues...Thoughts?
How about auditory processing?


Thank you sooooo much!

We've wondered too if DS will always need medication. Talking to other families, the answer seems to be you use the medication as long as it works and the child is still benefiting from it. Some kids use medication long term, some don't. I know that isn't much of an answer. For us, we decided to not stress over this point and just see how things go.

My brother was diagnosed with ADHD as an adult when he was around 30s. He had it as a kid, but was never treated for it. As an adult he has decided that he will always take medication for it, because the medication helps him function so much better.

Fish oil has been a big question mark for us lately. It was the first supplement we used with DS and I swore by it. I recommended it highly to other people. Then the prostate study scared DH and I and we started wondering about the long term effects of some of the supplements we were giving DS. Over the summer we took DS off all his supplements (he was taking quite a few) and then started over with just a few adding them very slowly. Based on DS's behavioral symptoms, we have found that his supplement needs now are very different than what they had been several years ago. At this point we have not yet added the fish oil back in, although we do still talk about it. As far as attention goes, the medication helps him far more than the fish oil ever did.

The thread about DS's auditory processing testing is here: http://windsorpeak.com/vbulletin/showthread.php?397072-Updated-Auditory-Processing-Disorder-Testing&highlight=auditory if you are interested.

[egoldber]

The daydreaming for ADD, does that literally LOOK a trance?

It can. Technically, younger DD is ADHD-hyperactive, but she has a distracted component as well when not medicated. She hyper focuses on whatever holds her interest at the time (like the TV) and it is almost impossible to get her to pay attention to you unless you physically touch her to get her attention.


If you start medicating, when do you stop? If he responds, will that mean he will always need it?

It does not mean medication is needed forever. Younger DD is extreme on the hyperactive scale and really is not capable of functioning and learning in the classroom without medication. So that is part of what made our decision to medicate very easy. It also means that she is more likely to need to be on it long term. She also needs a very long acting medication because she needs it for the entire school day AND for after school activities and homework.

Older DD I am becoming more and more convinced has ADHD-Inattentive. However, hers is not nearly as severe. I can see a scenario where she would (for example) only take a short acting medication at lunch time (her specials are in the AM and her academic core subjects are in the PM) to get her through her academic subjects, allow her to organize her papers/schoolwork to come home (currently a HUGE issue), and get through the homework hours. And I can see her needing it only to get through MS until she matures a bit more.

Many people with ADHD go long periods of time without medication and go back on it when they find that they need it for whatever reason. Also, for better or worse, school is a very artificial environment. Some schools are able to help kids with milder forms of ADHD such that they do not need medication at all. Outside of school, people are better able to structure their own worlds and create a life environment that cater to their strengths and that allows them function without medication.

So there really is not a one size fits all scenario when it comes to medication.


What makes up a neuropysch exam?

It depends on what you are testing for. With older DD, DH and I met first with the neuropsychologist. We talked about older DD and the school's concerns and our concerns. Based on that, she developed a set of tests to try and tease out those concerns. At the time we were concerned about anxiety and potential ADHD. Her testing structured around those issues. For other kids with different issues, there would be different tests. There were questionnaires to fill out ahead of time by the school and by us. The total testing time took about 6 hours. It was broken up into three 2 hour sessions over three Saturdays. The testing schedule can look different for everyone.

[JustMe]

Out of the questions you asked, I can only speak to the auditory processing piece and briefly to the neuropsych testing.

For the auditory processing, I agree that the testing you had does not cover it. The testing should be done with an audiologist.

In terms of the neuropsych and what it consists of, IME also, you meet with the neuropsychologist and that determines a lot about what testing is to be done. It helps to go in with very specific lists of concerns.

[Kindra178]

I think you need to flesh out any potential processing issues. We just had ds1 tested for CAPD. Like others said, it was done by an audiologist in a sound proof booth. Ds passed with flying colors. His next eval will be done by an SLP to rule out language processing issues.

[Indianamom2]

It can. Technically, younger DD is ADHD-hyperactive, but she has a distracted component as well when not medicated. She hyper focuses on whatever holds her interest at the time (like the TV) and it is almost impossible to get her to pay attention to you unless you physically touch her to get her attention.



It does not mean medication is needed forever. Younger DD is extreme on the hyperactive scale and really is not capable of functioning and learning in the classroom without medication. So that is part of what made our decision to medicate very easy. It also means that she is more likely to need to be on it long term. She also needs a very long acting medication because she needs it for the entire school day AND for after school activities and homework.

Older DD I am becoming more and more convinced has ADHD-Inattentive. However, hers is not nearly as severe. I can see a scenario where she would (for example) only take a short acting medication at lunch time (her specials are in the AM and her academic core subjects are in the PM) to get her through her academic subjects, allow her to organize her papers/schoolwork to come home (currently a HUGE issue), and get through the homework hours. And I can see her needing it only to get through MS until she matures a bit more.

Many people with ADHD go long periods of time without medication and go back on it when they find that they need it for whatever reason. Also, for better or worse, school is a very artificial environment. Some schools are able to help kids with milder forms of ADHD such that they do not need medication at all. Outside of school, people are better able to structure their own worlds and create a life environment that cater to their strengths and that allows them function without medication.

So there really is not a one size fits all scenario when it comes to medication.



It depends on what you are testing for. With older DD, DH and I met first with the neuropsychologist. We talked about older DD and the school's concerns and our concerns. Based on that, she developed a set of tests to try and tease out those concerns. At the time we were concerned about anxiety and potential ADHD. Her testing structured around those issues. For other kids with different issues, there would be different tests. There were questionnaires to fill out ahead of time by the school and by us. The total testing time took about 6 hours. It was broken up into three 2 hour sessions over three Saturdays. The testing schedule can look different for everyone.

Beth is so smart!! I 100% agree.