?ADD/ADHD for DD6

[amesyrn]

Our DD 6 is one of the sweetest, happiest children. However since she was a baby we've noticed some things that have concerned us. For the most part I think we were in denial that anything could be wrong. My DH has been saying he thinks she has ADHD for the past 2 yrs I always blamed things on her age. Little hx is when she was 11mths old she had lead poisoning. The house we were renting was being renovated and was loaded with lead paint (we didnt know, they renovated it wrong, and the state ended up stepping in). We asked MD to test her for lead poisoning because our daughter was just acting strange she went from having a vocabularly of about 10 words to saying nothing, sleep patterns started being messed up, ect. She was treated and they were able to get her levels back down.

She was late with language not really talking at all till almost 2 1/2 and receptive language is still not very good. We homeschool her as we feel 1. she would not be able to last an entire day, and 2. she would not be able to get as much out of school, and would probably be a distraction to the other children, and 3. for other personal reasons. She tries so hard to be good, and this is one of the reasons I've been resisting the idea that something else is wrong. However I cant ignore it anymore.

Here are some things we have noticed over the past 5 yrs. She does not understand instructions very well at all. Unless you physically show her exactly what you want, and step by step. She can not sit still it's like her body just does it on its own. She'll be watching a movie or something and will just jump up and stand on the couch or move seats or do a head stand... ect. When you talk to her no matter how much you try to make her listen it's as if she just cant. As if there is some sort of wall there she;ll even make eye contact with you and make her eyes go real big to make it look like she is listening but will not be able to repeat anything you just said. She gets sidetracked sooo easily. At school (home) if there is anything within reach while I'm trying to teach she'll grab it and get super focused on that. We literally have to stop our day 10-15 times just so she can get regrouped. Also she has a hard time with social cues. DH and I will often cringe when she is playing with other kids because she doesnt know boundaries, and she doesnt read body language well at all. It's good in the way that if kids are being mean to her she has no idea... And I'm not sure if this is improtant to mention at all, but she is very sensitive to sound, and smell.

Here are the positives she is super sweet and makes everyone around her feel good. At the playground we often find her playing with the kids who look like they need a friend or will wait up for the younger sibling of whoever she is playing with. She is smart and is reading at a 2nd-3rd grade level, and loves math.

Things have gotten a lot worse lately. School last week I had to give her 3 half days, she just couldnt handle it. Now this past year has been really tough on us as a family as we have a 9 mth old who has been in and out of the hospital for half her life. Meaning DD6 has been spending a lot of time at her greandparents. Prior to the baby she never spent any time away from us. So I know some of this may be playing into why things have gotten worse.

We made an appt with her pediatrician, and would like to know if there are certain questions you would ask. Who do you recommend us asking to see as a specialist? ect. Any and all advice is welcome.

 

[redshoes]

I'm no where near an expert but having just started my journey with my DS (6), I'll give you a little insight that I've gained in the last few months . The best advice I can give you is to seek out as much information as you possibly can in regards to what could be the driving force behind what is causing some of your DD's issues.

ADHD/ADD does sometimes stand alone, but there are a lot of cases when that dx is just the tip of the iceberg. The way that you describe your DD makes me think that there might be something more going on than just a lack of attention and hyperactivity. I would dig a little deeper.

You can start with just a simple visit to your ped. and lay it all out on the table for them. If your DR is helpful at all, you can at least get some referrals of where to go from there. When I was just beginning my search, I feared telling my DS's ped. exactly what was going on with him for fear that I would be labeled as one of those "mothers". I would down play some of his issues, because I didn't want my DS's Dr to think I wasn't a good Mom or that I was making too big of a deal out of things that didn't really matter. In hindsight, I should have been more forthcoming with his behavior. Now, I know better and I'm more real about what is going on. Don't misunderstand me, I don't think that is what you are doing- that was just my situation.

I was afraid at first what the answer would be as to what my DS's issues are but in reality- whatever label is put on my DS it doesn't change the person that he is. It does help me as his Mom to figure out how to parent him better.

I hope that what little I've shared is helpful to you. I've been in your shoes just a few months ago and I'm still searching for answers about my DS but we are getting closer.

It sounds like you have a ton on your plate right now, but know that you can do this. Whatever the outcome, your DD is so lucky to have such a wonderful caring Mom like you. Please let us know what the outcome is.

 

[bookwormde]

It is a little hard to comment without knowing what her peak BLL was and how long elevated levels persisted as she was monitored. The fact that she is intellectually bright, would lead me to think that while brain developmental changes that lead can cause may be playing a part that it is not the primary source.

Kids with executive function differentials have several profiles which provides good clues as to the potential sources. If she has difficulty attending to anything at all times then it is likely classic ADD/ADHD. If she can attend much better to image based information (pictures/video) than to linear based information (speech, reading etc) then it is more of a differential than a broad based deficit. It is especially telling if she can hyper focus in image based presentation and if she has developed atypically intense areas of special interest. The fact that she is socially atypical is an important clue also as is her sensory differentials (which is very important to mention).

With your description containing all 3 of the primary characteristics I would recommend that you educate yourself about Aspergers syndrome. The primary work on this subject is by Tony Attwood called "the complete guide to Aspergers" and is available at your library or from Amazon for about $17.

When you see you pediatrician get a referral for an auditory processing evaluation and for a WPS SRS evaluation. These can be very good clues as to what it going on.
The lead incident can heighten the presentation of the items you described, but I seriously doubt it is primary.

While it could be any number of things (or combination of things) with what you know at this time, if it is Aspergers, while it creates some significant challenges it comes along with some amazing gifts, like having a heightened sense of social responsibility and exceptional non linear processing abilities and a lack of discrimination (in all things) so try your best not to get overstressed until you are better informed.

Bookwormde

 

[jodifla]

She could have Mixed Expressive Receptive Language Disorder (MERLD) or an Auditory Processing Disorder. Kids with MERLD often look like they have ADHD. There's often very weak auditory memory associated with this, so it makes sense she'd be able to do tasks when visually shown but not told.

Receptive language delays are tricky and can cause a lot of other issues. Just think how your life would be if you were missing most of what people said!

For a large message board on MERLD, you can go to

www.naturallatetalkers.com and fill out the form to join.

 

[Maggie'sMom]

Go into the pediatrician and describe the symptoms without putting a label on them. Don't start with "I think my child is ADHD." Just lay out the things you have observed about her. Make a list before you go in because it's easy to forget things when you are talking with the doctor.

I would recommend asking for a referral to a specialist. While a lot of pediatricians will prescribe ADHD meds, it doesn't mean all of them should be prescribing those meds. I believe children are better off being seen by someone with training beyond that of a regular peditrician when it comes to neurological and behavioral problems. Given the background of the lead poisoning, it might be a good idea to go to a pediatric neurologist.

 

[amesyrn]

I'm no where near an expert but having just started my journey with my DS (6), I'll give you a little insight that I've gained in the last few months . The best advice I can give you is to seek out as much information as you possibly can in regards to what could be the driving force behind what is causing some of your DD's issues.

ADHD/ADD does sometimes stand alone, but there are a lot of cases when that dx is just the tip of the iceberg. The way that you describe your DD makes me think that there might be something more going on than just a lack of attention and hyperactivity. I would dig a little deeper.

You can start with just a simple visit to your ped. and lay it all out on the table for them. If your DR is helpful at all, you can at least get some referrals of where to go from there. When I was just beginning my search, I feared telling my DS's ped. exactly what was going on with him for fear that I would be labeled as one of those "mothers". I would down play some of his issues, because I didn't want my DS's Dr to think I wasn't a good Mom or that I was making too big of a deal out of things that didn't really matter. In hindsight, I should have been more forthcoming with his behavior. Now, I know better and I'm more real about what is going on. Don't misunderstand me, I don't think that is what you are doing- that was just my situation.

I was afraid at first what the answer would be as to what my DS's issues are but in reality- whatever label is put on my DS it doesn't change the person that he is. It does help me as his Mom to figure out how to parent him better.

I hope that what little I've shared is helpful to you. I've been in your shoes just a few months ago and I'm still searching for answers about my DS but we are getting closer.

It sounds like you have a ton on your plate right now, but know that you can do this. Whatever the outcome, your DD is so lucky to have such a wonderful caring Mom like you. Please let us know what the outcome is.

Thank you. When you were talking about the label and it just being a label that she is still the same person that really hit home. I think part of my denial is that some sort of label would lessen what a wonderful kid she is. Thank you for sharing part of your story. Also I have no problems being an advocate even when I think the MD's might get annoyed. A yr ago I probably would have a hard time, but as my other DD has spent a lot of time in the hospital and we are still trying to figure everything out (ie her diagnosis). I've stopped trying to be nice and am very good at advocating for her in a respectful way.

It is a little hard to comment without knowing what her peak BLL was and how long elevated levels persisted as she was monitored. The fact that she is intellectually bright, would lead me to think that while brain developmental changes that lead can cause may be playing a part that it is not the primary source.

Kids with executive function differentials have several profiles which provides good clues as to the potential sources. If she has difficulty attending to anything at all times then it is likely classic ADD/ADHD. If she can attend much better to image based information (pictures/video) than to linear based information (speech, reading etc) then it is more of a differential than a broad based deficit. It is especially telling if she can hyper focus in image based presentation and if she has developed atypically intense areas of special interest. The fact that she is socially atypical is an important clue also as is her sensory differentials (which is very important to mention).

With your description containing all 3 of the primary characteristics I would recommend that you educate yourself about Aspergers syndrome. The primary work on this subject is by Tony Attwood called "the complete guide to Aspergers" and is available at your library or from Amazon for about $17.

When you see you pediatrician get a referral for an auditory processing evaluation and for a WPS SRS evaluation. These can be very good clues as to what it going on.
The lead incident can heighten the presentation of the items you described, but I seriously doubt it is primary.

While it could be any number of things (or combination of things) with what you know at this time, if it is Aspergers, while it creates some significant challenges it comes along with some amazing gifts, like having a heightened sense of social responsibility and exceptional non linear processing abilities and a lack of discrimination (in all things) so try your best not to get overstressed until you are better informed.

Bookwormde

Thank you for responding. DD BLL peaked at 34, we dont know how long they were that high as they had stopped working on the house when we had gotten her tested. It took almost 9 -12 mths for her BLL to get back into normal range.

She is able to pay attention when A. something interests her and B. she can take part in or see it happen. Although when a lot of people are getting the same instruction (ex soccer) forget it she gets sooo sidetracked.

I will definately purchase that book you recommend. Thank you so much for all this valuable information.

She could have Mixed Expressive Receptive Language Disorder (MERLD) or an Auditory Processing Disorder. Kids with MERLD often look like they have ADHD. There's often very weak auditory memory associated with this, so it makes sense she'd be able to do tasks when visually shown but not told.

Receptive language delays are tricky and can cause a lot of other issues. Just think how your life would be if you were missing most of what people said!

For a large message board on MERLD, you can go to

www.naturallatetalkers.com and fill out the form to join.

I have never heard of this, and will definately look more into it. Receptive language is something we have always been concerned with. Thank you.

Go into the pediatrician and describe the symptoms without putting a label on them. Don't start with "I think my child is ADHD." Just lay out the things you have observed about her. Make a list before you go in because it's easy to forget things when you are talking with the doctor.

I would recommend asking for a referral to a specialist. While a lot of pediatricians will prescribe ADHD meds, it doesn't mean all of them should be prescribing those meds. I believe children are better off being seen by someone with training beyond that of a regular peditrician when it comes to neurological and behavioral problems. Given the background of the lead poisoning, it might be a good idea to go to a pediatric neurologist.

Thank you for this advice. After dealing with younger DD illness I now always request to see a specialist. As pediatricians are great, but in our experience they have a broad knowledge about a lot of things, but are not focused on any particular thing and things can be missed or overlooked. We already have a wonderful neurologist for our other DD so maybe we could book an appt for DD6 as well. Thank you.

 

[amesyrn]

Just wanted to quickly vent/ update. So we went to see the behavioral neurologist today a much highly anticipated appointment, but feel kinda let down. The doc wouldnt get past her lead poisoning and language difficulties. Although this is a huge part of her issues she has other things as well that need to be addressed that we felt he simply wasnt listening about. He feels that all her behavioural issues are related to her lead poison and language. Does not believe she has anything on the spectrum even though after reading the book by Tony Attwood we feel it is describing her.

He is setting up some more evaluation for her such as another hearing test that will tell him more what parts of her brain are functioning with different types of noises. He really thinks that there is some correlation there. It's funny cuz she can hear a pin drop in another room, and seriously has issues with sound. Such as we walked into iParty the other day and she went from excited to pre-meltdown mode, because the sound of them blowing up balloons in the back of the room was too much for her. We were able to prevent a breakdown simply because we left the store. Apparently though she may be able to hear sound but not be able to process words? They are also having her get evaluated by a speech pathologist, and we are going to request from the school system for a core evaluation. He also mentioned a brain MRI but we think we'll hold off on that, because he said the chances of finding something on that is slim to none, and it would really be stressful for her.

So we are not exactly sure how to feel after the appointment, but hopefully we will get more answers.

 

[bookwormde]

The fact that the clinician describes himself as a "behavioral " neuroligist is quite unusual and to me concerning. Typically they are developmental neurologists which a much broader set of skills and trainings.

At a peak of 34 there was almost certainly some long term impact, but if the situation was noticed quickly and well managed it is more likely incremental that severe. If the IQ test (Wait or some other age appropriate one) showed at or above average (100) and particularly if it was above 120 or had major discrepancies between the subsections then the neurologist is way off track. If this is the case while the poisoning had an impact and likely caused underlying characteristics to appear earlier and be more pronounced the source is still the same.

Hopefully the evaluation that you are having done is an Auditory Processing evaluation. It is one of the best ways to discover EF differentials in our kids. If there are differentials, yet your child can focus on image based beyond what is typical in areas of special interest then that is a clue that the EF differences are based on Autism genetics.

If he believes Aspersers is not likely then I am assuming he did a WPS SRS rating evaluation (which you would have filled out) and all 5 subgroups were below 30. If he has not and is just "guessing" then it is find to find a better more competent clinician. He should also have done a full sensory evaluation.

He is correct to look at the poisoning as a factor, but a with virtually all clinicians with "behavioral" in their title was trained in identifying symptoms and treating them 1 at a time and lack the perspective and training to identify our kids, which is ineffective if it turns out the Autism genetics are the source of the differences.

If you want to give him more time, tell him that you are not comfortable with his dismissal of ASD as an underlying source and that you want a full evaluation, not his best guess, including the WPS SRS screening and a full sensory profile (assuming that he as already done the IQ test and Auditory processing evaluation).

I hate to say it but 90+ % of clinicians who purport to be able to "discount" ASD as a source lack the competency (and never use the basic best current tools) to even begin to evaluate our kids, I run into this every week with the parents I talk to, and when they finally get to a major medical center that specializes in high functioning kids, ASD characteristics are recognized in virtually 100% of them and most end up with a formal diagnosis.

bookwormde

 

[amesyrn]

Thank you Bookwormde. My SIL is a speech pathologist and she agrees with you. So we will probably follow up with this doc so we can get the tests he's ordered completed, but find a second oppinion as well. We thought we were all set as he was recomonded to us from our other DD neuromuscular doc. He is from Boston Childrens Hospital though.

We did not fill out any WPS SRS form...I believe the hearing test was called the auditary processing eval. Would the IQ test be completed when she sees a neuro psych doc? Would you also recommend us getting the brain MRI?

Thank you again. I was feeling a bit deflated yesterday. Sometimes docs have a hard time really listening to what you have to say, and that can be so frustrating.

 

[lovethattink]

My son was sent for neurocognitive testing in August. My son was administered the Wechlser Preschool and Primary Scale of Intelligence-3rd edition (WPPSI-III) and Developmental Test of Visual-Motor Integration-6th Edition. My husband and I were given the Conners 3 Parent Rating Scale, the Behavior Rating Inventory of Executive Function, and the Pervasive Developmental Disorder Behavior Inventory on him.

Many of the traits you describe in your child are similar to my 6 year old son. We homeschool as well. It was recommended to us to give him attention breaks every 10 minutes, if he needs it, to keep his focus. An attention break is a minute or 2 of with rest or exercise. Some days he can get through his class work and instruction straight through without many breaks. Some days, it is every 10 minutes of taking breaks. Today was one of those days.

Like you, I have to remove all distractions. He even has to have his pencil and any papers away from him if he is to listen. When he is doing seat work, he can't have any external sounds or he loses focus.

My son has Cortical Dyplasia, and is being treated for epilepsy, ADHD and Aspergers that are a result from where his area of dysplasia is located.

As for labels, my 16 year old has Mild Cerebral Palsy, but looks completely normal. All through elementary school he was reprimanded for being clumsy and lazy, because he tripped alot and his hand writing was attrocious. When he was in 6th grade he went to a neurologist for migraine headaches. After an MRI and a EEG and a bunch of tests in the office he was diagnosed with Mild Cerebral Palsy. He said it was such a relief to have a diagnosis, because he knew he was trying his best at school, and was frustrated with everyone not believing him and tired of tripping over his own 2 feet. With the proper tools he was able to excel in school and is now a highschool football player!

 

[bookwormde]

If you could get into one of the studies at Yale, a brain scan could help with seeing if the functional patterns are what is usually seen in our kids, as they are one of the few center who is on the leading edge, my son took part in one at Kennedy Krieger (Johns Hopkins). 99% of can interpreters do not have this training and would just be looking for "dead spots" and since for our kids, different parts of their brains are used for different things at different times than the neurotypical brain, they would like at best be confused, or at worst give an completely incorrect reading.
Yes an IQ test if definitely part of a Neuro evaluation, although if the clinician does not know the look for the subgroup differential and what that indicates it can be of very little value other that often they notice the discrepancy between a high overall score and what they perceive as a much lower functional capability.
I find that the "good" docs in this field always listen very closely to the parents, as they have the broadest experience with the child and that a well informed parent is the best clinical therapy that there is. If they do not that is a big red flag
Bookwormde

 

[toniosmom]

My DS5 (almost 6) has multisensory and auditory processing deficits. If you haven't already done so, I suggest that you have a sensory integration evaluation. It was a pretty detailed evaluation, lasting over an hour IIRC, and can give you insight as to why she does the things she does (head stands, movements).

My son can be sensitive to noise, but I do not believe it is the volume level, but rather just the noise itself. There are many times where he tells me to stop talking and it's not because he is being rude, but rather because he can't handle the noise. His hearing is excellent, but yet there are time where he acts like he didn't hear what I was saying to him. I think his brain doesn't interpret the sounds appropriately at times. As another DIS member suggested, I have ordered inexpensive headphones (which should be arriving any day now) which he can use when he needs a "noise break".

He also cannot sit still and while we are sitting on the couch, he is often standing on his head on the cushions and rarely (if ever) sits there on his bum like the rest of us. He is perpetual motion.

As a result, he has twice-weekly occupational therapy sessions at school. The OT has also recommended that he take breaks every 30-45 minutes throughout the school day. Yesterday was parent observation day where we could sit in the classroom for an hour while the kids do their classwork. All of the kids were focused on what the teacher was saying and my son was staring at the floor, playing with his fingers, etc., occasionally looking up and half-heartedly participating. Eventually, I could see that he was starting to lose patience and needed a change. He has a one-on-one aide now, so she took him out into the hallway for a walk. He went into the OT room, grabbed the scooter and we walked around the hallways while he scooted. When we got back about 10 minutes later, he was a new kid, ready to tackle the next task. I was amazed. I went to grammar school in the 60's and 70's and couldn't imagine being able to have such a break back then and I am so happy that his needs are being recognized.

The OT is also trying the weighted vest, which he says helps him feel better, although he can't say why. For children who have trouble sitting down and must stand, there is weighted lap pillow, which somehow "grounds" them and helps them stay seated (like at a school desk).

Your DD may need a sensory diet, but it's not something you can simply look up online. From what I've learned, no two children with sensory issues are alike and what works for some does not work for others, so a good occupational therapist can tell you exactly what will help your child.

Sorry to ramble on, but I am in the throes of trying to find out what is going on with my son as well. I have been to many doctors and I will keep seeing doctors until I am satisfied that I have exhausted all avenues and he has a definitive therapeutic program that has stabilized him.

I wish you good luck and hope that you get some answers soon.

 

[lovethattink]

99% of can interpreters do not have this training and would just be looking for "dead spots" and since for our kids, different parts of their brains are used for different things at different times than the neurotypical brain, they would like at best be confused, or at worst give an completely incorrect reading.
Bookwormde

This is soooo true!! My son would have slipped through the cracks if he hadn't had a seizure on Father's Day this summer. The CT scan at the hospital came back normal. The first MRI came back normal. The EEG showed something "not right" on the right side. Another more sophisticated MRI and MRperfusion test was done at All Children's Hospital. And the cause of the seizures was identified, which is VERY rare. Most people never find out why they've had a seizure.

Having a good neurologist who did a throrough work up in the office, he noticed deficits in muscle tone and tendon reflexes. Also noticed "abnormal" positioning of hands while performing certain tasks. And the flapping of hands when he got so excited about the knee reflex and the orange color on the instrument used to do the knee reflex. He said this is developmental delay and ordered the neurocognitive tests.

The psychologist who did the neurocognitive tests wasn't going to do the PDDBI test. Only after interviewing me first and asking many questions about his behavior did he decide to give me the questionaire. The results showed he met the criteria for Aspergers.

Had the psychologist not asked the right questions, I would have never been given the proper questionaire. And my son would have fallen through the cracks. I was expectiving a dianosis of OCD, because of how everything had to be in order and follow certain rules with him, and was shocked when given the other.

He is going to start OT and PT soon.

My son appears impulsive. He would bolt from his chair and go under the table, or run up on the couch and sit like Mork from Ork. He is very verbal and when we'd ask him why he did those things, he would say, "I had to, my brain told me to do it." Through counselling and social stories he is learning to express to us how he feels instead of acting first. Usually it is some type of sensory perception that scares him or irritates him. Maybe a lawn mower way down the street, that I never even heard; a toilet flushing; placing a lid on a pot or pan, a dog barking, a motor cycle driving by; a light flickering; a tag on his clothing rubbing against neck or lower back, not enough light in the room or too much light in the room, someone wearing perfume, or some other smell, texture of food; something in the room out of the usual place, etc. More times than not, he bolts, then explains to us afterwards what caused him to bolt. Often it's something we can do something about, and a minor change in his surrounding environment can make all the difference in the world with his behavior.

 

[amesyrn]

My son was sent for neurocognitive testing in August. My son was administered the Wechlser Preschool and Primary Scale of Intelligence-3rd edition (WPPSI-III) and Developmental Test of Visual-Motor Integration-6th Edition. My husband and I were given the Conners 3 Parent Rating Scale, the Behavior Rating Inventory of Executive Function, and the Pervasive Developmental Disorder Behavior Inventory on him.

Many of the traits you describe in your child are similar to my 6 year old son. We homeschool as well. It was recommended to us to give him attention breaks every 10 minutes, if he needs it, to keep his focus. An attention break is a minute or 2 of with rest or exercise. Some days he can get through his class work and instruction straight through without many breaks. Some days, it is every 10 minutes of taking breaks. Today was one of those days.

Like you, I have to remove all distractions. He even has to have his pencil and any papers away from him if he is to listen. When he is doing seat work, he can't have any external sounds or he loses focus.

My son has Cortical Dyplasia, and is being treated for epilepsy, ADHD and Aspergers that are a result from where his area of dysplasia is located.

As for labels, my 16 year old has Mild Cerebral Palsy, but looks completely normal. All through elementary school he was reprimanded for being clumsy and lazy, because he tripped alot and his hand writing was attrocious. When he was in 6th grade he went to a neurologist for migraine headaches. After an MRI and a EEG and a bunch of tests in the office he was diagnosed with Mild Cerebral Palsy. He said it was such a relief to have a diagnosis, because he knew he was trying his best at school, and was frustrated with everyone not believing him and tired of tripping over his own 2 feet. With the proper tools he was able to excel in school and is now a highschool football player!

The break every 10 minutes sounds like a great idea. Some days we probably wouldnt need them at all and others like today we'd need them every ten min. We can not have anything in front of Kaylie (dd) either. Then she starts playing with her toes, fingernails. ect. I find giving her a break and having her run to do something like brush her teeth, jumping jacks, or get the mail ect.

If you could get into one of the studies at Yale, a brain scan could help with seeing if the functional patterns are what is usually seen in our kids, as they are one of the few center who is on the leading edge, my son took part in one at Kennedy Krieger (Johns Hopkins). 99% of can interpreters do not have this training and would just be looking for "dead spots" and since for our kids, different parts of their brains are used for different things at different times than the neurotypical brain, they would like at best be confused, or at worst give an completely incorrect reading.
Yes an IQ test if definitely part of a Neuro evaluation, although if the clinician does not know the look for the subgroup differential and what that indicates it can be of very little value other that often they notice the discrepancy between a high overall score and what they perceive as a much lower functional capability.
I find that the "good" docs in this field always listen very closely to the parents, as they have the broadest experience with the child and that a well informed parent is the best clinical therapy that there is. If they do not that is a big red flag
Bookwormde

How would I get her into one of the programs at Yale? What kind of doc should I look at to take over her care? I think Kaylie would de really well on an IQ test, I dont know what that is indicative of though.

My DS5 (almost 6) has multisensory and auditory processing deficits. If you haven't already done so, I suggest that you have a sensory integration evaluation. It was a pretty detailed evaluation, lasting over an hour IIRC, and can give you insight as to why she does the things she does (head stands, movements).

My son can be sensitive to noise, but I do not believe it is the volume level, but rather just the noise itself. There are many times where he tells me to stop talking and it's not because he is being rude, but rather because he can't handle the noise. His hearing is excellent, but yet there are time where he acts like he didn't hear what I was saying to him. I think his brain doesn't interpret the sounds appropriately at times. As another DIS member suggested, I have ordered inexpensive headphones (which should be arriving any day now) which he can use when he needs a "noise break".

He also cannot sit still and while we are sitting on the couch, he is often standing on his head on the cushions and rarely (if ever) sits there on his bum like the rest of us. He is perpetual motion.

As a result, he has twice-weekly occupational therapy sessions at school. The OT has also recommended that he take breaks every 30-45 minutes throughout the school day. Yesterday was parent observation day where we could sit in the classroom for an hour while the kids do their classwork. All of the kids were focused on what the teacher was saying and my son was staring at the floor, playing with his fingers, etc., occasionally looking up and half-heartedly participating. Eventually, I could see that he was starting to lose patience and needed a change. He has a one-on-one aide now, so she took him out into the hallway for a walk. He went into the OT room, grabbed the scooter and we walked around the hallways while he scooted. When we got back about 10 minutes later, he was a new kid, ready to tackle the next task. I was amazed. I went to grammar school in the 60's and 70's and couldn't imagine being able to have such a break back then and I am so happy that his needs are being recognized.

The OT is also trying the weighted vest, which he says helps him feel better, although he can't say why. For children who have trouble sitting down and must stand, there is weighted lap pillow, which somehow "grounds" them and helps them stay seated (like at a school desk).

Your DD may need a sensory diet, but it's not something you can simply look up online. From what I've learned, no two children with sensory issues are alike and what works for some does not work for others, so a good occupational therapist can tell you exactly what will help your child.

Sorry to ramble on, but I am in the throes of trying to find out what is going on with my son as well. I have been to many doctors and I will keep seeing doctors until I am satisfied that I have exhausted all avenues and he has a definitive therapeutic program that has stabilized him.

I wish you good luck and hope that you get some answers soon.

What kind of headphones did you get? She usually keeps earplugs with her, but headphones might be easier. Kaylie is also always moving, she's been doing these kick stands off the couch which are pretty impressive. DH calls her our little piece of chaos.

This is soooo true!! My son would have slipped through the cracks if he hadn't had a seizure on Father's Day this summer. The CT scan at the hospital came back normal. The first MRI came back normal. The EEG showed something "not right" on the right side. Another more sophisticated MRI and MRperfusion test was done at All Children's Hospital. And the cause of the seizures was identified, which is VERY rare. Most people never find out why they've had a seizure.

Having a good neurologist who did a throrough work up in the office, he noticed deficits in muscle tone and tendon reflexes. Also noticed "abnormal" positioning of hands while performing certain tasks. And the flapping of hands when he got so excited about the knee reflex and the orange color on the instrument used to do the knee reflex. He said this is developmental delay and ordered the neurocognitive tests.

The psychologist who did the neurocognitive tests wasn't going to do the PDDBI test. Only after interviewing me first and asking many questions about his behavior did he decide to give me the questionaire. The results showed he met the criteria for Aspergers.

Had the psychologist not asked the right questions, I would have never been given the proper questionaire. And my son would have fallen through the cracks. I was expectiving a dianosis of OCD, because of how everything had to be in order and follow certain rules with him, and was shocked when given the other.

He is going to start OT and PT soon.

My son appears impulsive. He would bolt from his chair and go under the table, or run up on the couch and sit like Mork from Ork. He is very verbal and when we'd ask him why he did those things, he would say, "I had to, my brain told me to do it." Through counselling and social stories he is learning to express to us how he feels instead of acting first. Usually it is some type of sensory perception that scares him or irritates him. Maybe a lawn mower way down the street, that I never even heard; a toilet flushing; placing a lid on a pot or pan, a dog barking, a motor cycle driving by; a light flickering; a tag on his clothing rubbing against neck or lower back, not enough light in the room or too much light in the room, someone wearing perfume, or some other smell, texture of food; something in the room out of the usual place, etc. More times than not, he bolts, then explains to us afterwards what caused him to bolt. Often it's something we can do something about, and a minor change in his surrounding environment can make all the difference in the world with his behavior.

I've definately heard the "my brain told me to" as an excuse. Lol Kaylie actually is very concerned about routine. She needs 3 things before bed (which ends up being like 20) she likes to hear the order in which simple things are to be done. Like wake up put your glasses on, go potty, brush teeth, ect. If I say anything wrong she freaks.

Thank you all for your input and asvice. It's nice knowing we're not alone in all this.

 

[toniosmom]

What kind of headphones did you get? She usually keeps earplugs with her, but headphones might be easier. Kaylie is also always moving, she's been doing these kick stands off the couch which are pretty impressive. DH calls her our little piece of chaos.

I ordered these but have not received them yet. They were recommended by Maggie's Mom.

http://www.amazon.com/Peltor-97070-Junior-Earmuff-Black/dp/B000I7NX5E/ref=pd_cp_hi_1

 

[amesyrn]

I ordered these but have not received them yet. They were recommended by Maggie's Mom.

http://www.amazon.com/Peltor-97070-Junior-Earmuff-Black/dp/B000I7NX5E/ref=pd_cp_hi_1

Great thank you. I think we might order the pink ones.

 

[lovethattink]

Would they fit a child with a large head? My son is 6 but wears hats that are sized 10-12s at Children's Place and size 8 and up at Gymboree.

 

[toniosmom]

Would they fit a child with a large head? My son is 6 but wears hats that are sized 10-12s at Children's Place and size 8 and up at Gymboree.

I hope so because my son wears the same size as yours. I expect to receive mine Monday or Tuesday, so I can let you know how they fit him when I get them. The description says for children or smaller adults, so I'm guessing it should be okay.

 

[Maggie'sMom]

I ordered these but have not received them yet. They were recommended by Maggie's Mom.

http://www.amazon.com/Peltor-97070-Junior-Earmuff-Black/dp/B000I7NX5E/ref=pd_cp_hi_1

Maybe Peltor should start paying the Disboards for all the advertising we've been giving them. I bought these because I read a couple other recommendations for them here. And now I've recommended them multiple times.

Would they fit a child with a large head? My son is 6 but wears hats that are sized 10-12s at Children's Place and size 8 and up at Gymboree.

The headphones fit me so they should be fine for your son. I have a smaller sized head, but my head is still larger than a child's.

 

[lovethattink]

Thanks! Appeciate it. How do you get more than one quote in a post?