Websites about ADHD? Update 5/1: 2mo on Meds - Great Report card

[JamesMom]

I am back about my younger son. A first grader in special Ed has been written up in various classes regarding his disruptive and impulsive behavior. Earning/denying priveleges at home had little effect so I offered a meeting with his teacher. She called a conference with most of his support staff and the consensus was to investigate ADHD.
Background: referred by pediatrician at age 2 for early childhood intervention for severe speech delay (fewer than10 words spoken). ECI called in psychologist, OT, PT as well as speech when he displayed rigidity and sensory issues. By age 3 he was still way behind and autism was discussed but not persued. Enrolled in PPCD, special Ed, at public school-OT, pt and speech continued and he thrived. Said 'mama for first time at age 4 and gave me my first self generated hug at age 5. Kindergarten did well but school needed ,more testing to keep services. Didn't make the scale for autism, but still exhibited sensory issues. And qualified under learning disability for reading/math delay. He kept services for reading (out and in) OT and speech while in mainstream kindergarten and 1st grade.
Behavior: refusal to sit still, incomplete work (or do it at all), lack of focus-easily distracted by sounds (dislike loud). High need for sensory input and limited acclimation to stimuli. The comment that his brain goes a mile a minute in divergent directions coupled with his impulsivivity is the problem.
I fear that the school simply wants to drug him up to keep him compliant,, but if he is truly in need then I want to do what's best. And after all my research into Autism and sensory issues, i am woefully ignorant of ADHD. Can y'all direct me to some sites that can bring me up to speed. And from your experience are we doing the right thing by my kid?
Thanks for reading my novel

 

[mistysue]

Well, they hyper/can't pay attention part sounds like ADHD. Sounds to me like there is more than one thing going on. In the past have you done much in the way of supplements or dietary changes for him?

My daughter takes an over the counter supplement called "focus factor" and it helps her quite a bit. She has some sort of learning disability that has never been diagnosed, but also spoke late, has done ST forever and is mainstreamed but gets special assistance for everything but math. My sister's sons were both being looked into for ADHD and she started giving them mineral supplements- by the end of that year they were both honor roll. I wish I could promise it would be that easy. My daughter has been on the focus factor over a year and is still very behind, but if she misses a day you can tell from her behavior. If the reference helps any, she went to K twice and at the end of the second year read at a level 3. At the end of 1st grade she was a level 4... she got to the 4 within a month of starting the supplement and is now at about at 8. So we have slow progress, but better than it had been before. They wanted a 12-16 o progress to 2nd grade, so she has quite a way to go

 

[princessnpirate]

Hi,

I apologize if I make any comments that are repetitive because this is the first time I have gone on this board so I have never seen previous comments.
My DS is almost 8 and has ADHD. All the hyperactivity/lack of focus and distractibility things you describe definitely sound like it but it sounds like there is more.

As for websites...I am not sure. Start with the pediatrician if you have not and/or child neurologist or psychiatrist.

Do not be afraid of meds....the first two hours my son went on them (2 years ago) I immediately knew it was the right choice. He went from have reading/concentration issues to some of the highest grades in the class.

 

[bookwormde]

First off if the school has not done a formal evaluation for Mid to HFA/Aspergers they are in serious violation of federal IDEA regulations and any clinician who has not done referred to a full clinical evalation for HFA is grossly incompetent.

You should get a copy of Tony Attwood's "the complete guide to Aspergers" which is available on Amazon for about $16. While with the significant speech delay technically Mid to HFA would be the formal diagnosis.
There are 3 characteristics to HFA/Aspergers, First is social communication, Speech delays are one of the major areas for HFA, as lack of social impetus to be compliant. Second is Executive function differentials (ADD). There is a strong tendency for anything that is based on linear processing (speech, listening, reading and standard organization). Typically there is a sting preference for image based input such as video movies. There is also often an ability to hyperfocus on areas of interest and image based information.
Third in sensory differentials, sometimes Hyper, sometimes Hypo and often both with different senses.
All 3 must be evaluated cataloged and accommodated for and skills thought. It is a disaster for the future of these kids who get put on typical ADHD medicines and goes no further evaluation of supports.
You need to get you clinicians and school to do their jobs competently, since your child is losing critical time that cannot be made up.
Bookwormde

 

[kuhltiffany]

I have a 6 year old with ADHD. Another diagnosis which often goes along with it is CAPD (central auditory processing disorder). Here in Canada I paid for an audiologist to test for it, I was so glad I did!

Sounds like it might be useful for your little one...
http://kidshealth.org/parent/medical/ears/central_auditory.html

 

[JamesMom]

OP here,

Thanks for the repllies:

Bookwormde: i recall you commenting on a thread last year regarding my son's autism testing. The school was quite thorough (63 pages of questionaires from me, plus teachers with several observations by the autism team)with the evaluation and my son does not have autism (or asperbegers though he has some traits - not enough to say 'yes').
mistysue: Food is really BIG issue with the sensory issues as he will only eat about 10 different items and will go on a hunger strike. I buy fortified, low sugar/high fiber foods when possible and supplement with chewable vitamins to round out his diet. He won't swallow a pill.
princessnpirate : The school is going to have the teacher & I fill out a survey to determine if further examination is needed for ADHD. If the school diognostician says yes, then I will need to take him to the pediatrician for the diagnosis dertermination - the school does not diagnosis ADHD (though they do for autism, weird, huh).
kuhltiffany; I haven't heard of CAPD - I'll ask his OT about that after reading the web link you posted. Thanks!

Thanks and keep the comments coming: Any books/websites to read?

 

[JamesMom]

In the spirit of closure (sort of), I wanted to follow up on what has been going on with my DS6.
His teacher and I completed the Connor's profiles and low and behold, his scores were high so the school referred him to our pediatrician. Our pediatrician referred him to a pediatirc neurologist as they do not diagnosis ADHD either. Just got back from a 2 hour neurologist appointment. She did not like the peicemeal diagnosis he has gotten in the past: speech delay, sensory issues, ADHD, etc and prefers to put him under the umbrella of Autism Spectrum disorder. She did not classify him as such under the DSM, rather as unifying diagnosis to approch his total condition. If I want the formal diagnosis, I need to have him tested by pediatric neuropsychologist. Oh, and she dismissed the schools negative finding last year as the school parties are not 'clinicians'. The neurologist took an extensive history (30 minutes worth!) and conducted a computer exam as well as inventory and concluded as we all suspected, ADHD combo type. She recommends medication for ADHD first and then see about adding an autism medication (didn't know there was such a thing) later.
I am a little shell-shocked that Autism is back. It is comforting that she was willing to take so much time, but then again, she did no formal testing for Autism, simply grabbed that from his history and brief observation of him. Is there a difference (as she presented) between autism and autism spectrum disorder? For insurance purposes she is usuing "encephalopathy" as the insurance company will kick back autism claims. Is autism really that much of a grey area?
Thanks for reading.

 

[LWallace2012]

My daughter whom will be 14 in July has a variance of conditions. It started off with ADHD at 2 1/2 years old and by Kindergarden we added Aspergers..then to Pdd/Nos. Now we have also added odd, and this past year we added Epilepsy. I know many things run together but for insurance things to be covered doctors will generally name all possible diagnosis to cover all aspects to get treatment.
My daughters school also tested her and she tested really high in many areas and low on others, but since she did not meet the low requirements used as they define as "mentally retarded"( I hate those words") then technically she was not defined in their eyes as a issue.

 

[bookwormde]

There are 2 ways of looking at ASD. There are characteristics that indicate that Autism genetics are present, which is relatively easy to see for anyone experienced, and then there is meeting the criteria for a formal diagnosis which is highly dependent on the experience and competence of the clinician.

Also be aware that ADHD stimulant in addition to the standard side effect can have serious acute impact on a percentage of our kids, which are very obvious from rapid behavioral changes

Good luck, in about 2 years we are going to be able to do comprehensive genetic scans on our kids to see which components they have, until then it is hit and miss.

Bookwormde

 

[disney fan4]

My son stopped talking at the age of 2. We started seeing a speech therapist. He avoided everyone only minimal interaction with my husband, myself and one set of grandparents. At 4 he was diagnosed with autism. He changed to seeing a speech therapist at school and ot. I did not want him on adhd medication, but after struggling very hard his first year of school, we tried it. He finished 1st grade above average for his grade level. I work at a pharmacy but try to avoid taking medication if at all possible. But this was the right decision for my son. We take medication vacations, only taking on school days, not summer break or holidays. I have had 2 doctors who have seen him only recently tell me that they think the previous autism diagnosis was wrong, (neither had seen him when he was younger). I am not saying adhd medication can cure autism, and every child is different. I think every parent has to make the best decision they can for their child. I am just glad to have my son back.

 

[GraceLuvsWDW]

She recommends medication for ADHD first and then see about adding an autism medication (didn't know there was such a thing) later.


Is there a difference (as she presented) between autism and autism spectrum disorder?

First, there is no "autism medication". There are medications that are commonly used with autistics, but there is no medication that treats Autism, only the behavior characteristics.

Second, there currently IS a difference between an Autism dx and an ASD dx. The ADOS, for instance, has a different areas of rating on a scale of 0-5. To qualify for an Autism dx, you must score 5's. For an ASD dx, the cutoff is 3s or higher.

Also, be careful giving meds. Autistic children can be very sensitive to meds and often have the "1%" side effects. Once you understand the way he is different, and provide support and understanding, many of the behavior issues will dissipate. Anxiety and Hyperactivity can be a big part of ASD, but there are many ways to lower the anxiety and provide outlets for the hyperactivity.

 

[JamesMom]

First, there is no "autism medication". There are medications that are commonly used with autistics, but there is no medication that treats Autism, only the behavior characteristics.

Second, there currently IS a difference between an Autism dx and an ASD dx. The ADOS, for instance, has a different areas of rating on a scale of 0-5. To qualify for an Autism dx, you must score 5's. For an ASD dx, the cutoff is 3s or higher.

Also, be careful giving meds. Autistic children can be very sensitive to meds and often have the "1%" side effects. Once you understand the way he is different, and provide support and understanding, many of the behavior issues will dissipate. Anxiety and Hyperactivity can be a big part of ASD, but there are many ways to lower the anxiety and provide outlets for the hyperactivity.

Thanks for the reply. Curious about your comments regarding the ADOS (module 2) scaling for ASD ex, I checked the paperwork for his schools eval last year and he scored 4 with 12 needed for autism and 8 for spectrum. Should I have him retested? I am so confused! I don't want him treated/categorized as something he is not. But I want real answers. I fear the neurologist simply put his as autism to help her and not him since she did not do a survey but put the label because of 1) speech delay, 2) repetitive behavior (sucks fingers, bites shirts,blankets,etc) and 3)social latencies (though this has improved greatly in the last 12 months). I am seriously thinking of having a pedi psych have a look. Keep the replies coming, please!

 

[GraceLuvsWDW]

I don't know about your school specifically, but some districts purposely under rate the ADOS. They can use a diagnostician with no medical training whatsoever to do their "testing". I would only trust someone well versed in ASD such as a Pedi Psych or Neuro Psych or in some cases, a good Dev Pedi (all of which are MDs). For instance, a school diagnostician might see a "high five" as reciprocal interaction, when those more knowledgable about ASD look for the "tell tale" signs (restricted use of eye contact, lack of facial expressions, tone of voice, stereotypical mannerisms, repetitive behaviors). It is of the utmost importance to get a specialists' opinion because our kids can be quite difficult to diagnose properly.

Even those of us who live with someone with Autism and seem very knowledgable are confounded sometimes. My dd has a friend who definitey has some autistic traits (to me). She doesn't seem to hear me sometimes, is somewhat onesided in her conversation, is kindof oblivious to anyone besides herself, but then she will do or say something that shows me she has very well developed theory of mind (well beyond what could be possible in ASD). I think on a given day, if someone evaluated her for a short period, she could very well be given an incorrect diagnosis. Until we have a genetic test, you have to get a very good specialist to evaulate over more than one session with tests that encompass many different things (cognition, neurology, socialization, imagination, etc) to be sure (especially with high functioning kids).

 

[Celidh]

My son has been diagnosed with Aspergers, which is on the Autism spectrum. It is mostly a social issue for him (which is what Aspergers is). There is a lot that he doesn't understand understand about people and their behaviour and it just makes no sense to him why people would do certain things. He has also had sensory issues as long as I can remember. He is 12. He also has ADHD symptoms. This is where I get confused. The pediatrician or psychologist (I can't remember which) told me that you can't have a diagnosis of both, but you can have a diagnosis of Aspergers with ADHD tendencies.

As someone else said, there is no medication for Autism but for some, they can treat certain aspects of it. My ds is on medication for the ADHD symptoms. For the social issues, he gets extra instruction at school with respect to how to deal with people and situations as well as what is acceptable. For him, he has no issue telling someone they are fat if they are because to him, it is the truth so why not say so. He doesn't get the concept of "little white lies".

I look at it this way, he is what he is and there is no changing it. I accept him the way he is and help him understand what he needs. I do have to explain things to him and tell him he was in the wrong. It is hard because he gets upset. He is sweet and loveable and I love him to death. He is hard on my head thought sometimes! LOL

Good luck with your son.

 

[kuhltiffany]

I'm stuck at this point too. Friday we received a 20 page report which confirmed an ADHD combined type diagnosis. One of the psychologist's recommendations though, was an Autism testing session, due to DS's sensory and social issues. DS is 6, has been in school for 3 years and in 2 pre-schools, and though he's awkward, no one had ever mentioned Autism before.

We see a developmental paediatrician tomorrow about trying some meds, so I'm interested to see what she thinks...

 

[JamesMom]

Op here,

Well, we survived the first two days on the 'sticker' as DS calls it. Monday afternoon he was a chatterbox (more than usual) before the patch was due to come off! Yesterday he was more reserved. Teacher and therapist mentioned he was slowing down (helping greatly with speech) but not quite 100%. Probably need to up the dose, but we will see. I am curious to see myself how he is so I'll be giving him the medication at least 1 day next week on spring break to see. So far none of the feared 'zombie' effect I was worried about - his personality still shines. Hopefully with him 'slowing down' he can focus more on speech and reading and catch up with his classmates. Last report card was all "needs improvement" so he is lagging academically.

His teacher and speech therapist are confused about the reintroduction of the ASD diagnosis, too. I put in a call for a referral for an eval, but the our insurance in-network group of psychologists/etc. are backed up until summer (It takes 2 weeks before they'll even schedule an appointment), and his next ARD meeting is April so not sure what to do there.

[ETA: School called to set up ARD today and while they will add the ADHD diagnosis to his OHI [other health issue] designation (she said it will help keep services if and when the Learning disability is no longer appropriate), they will not consider the ASD until the Fall because he just had school testing for Autism 1 year ago. This is before I mentioned I was planning to get him evaluated this summer when there is room.]

Overall, I guess I am pleased that he has no behavior comments on his folder for 2 days in row- a feat that has been elusive for months. Still not happy about the situation, but who would be. What's best for him is what matters most.
Thanks to all of you who commented - It's a great comfort to know I am not alone.

 

[Hasil72]

Happy to see that the Daytrana is working. Medicating is always so hard, but for us, there came a point where it just wasn't fair to DS not to try. DS has been using the patch for a few years so please feel free to pm me any questions. Two heads up though, 1. rubbing alcohol on a cotton ball will help when the residue and 2. if you plan to follow through in the summer or whenever he may be swimming, be sure to use the 3M Nexcare Absolute Waterproof Tape or else the patch will come off.

 

[JamesMom]

OP here again. Can't leave this thread alone

Spring break was this week and only gave him the patch once, on Wednesday. We planned to go to the zoo that day and he had 2 fits that morning so I slapped on a patch to salvage our day. It took about 3 hours (and a couple of more fits later) to see him calm down. We had a great time at the super crowded zoo. However, on the way home a mere four hours later, he was starting up again. The patch claims to work for 9 hours, but in my son's case it is more like 5, but then it might not be a valid test since he might be overstimulated with the visit. I have a follow up with the nuerorlogist in a couple of weeks and after more reports from school, she'll adjust the dose, I guess. The rest of the week he has been off the patch and doing well, but of course, I not making him do schoolwork either

I persued the ASD thing with my insurance and providers. Made a call to the intake department and got the promised letter this week. The wait list is SIX TO EIGHT months for an appointment! Glad I'm not in a hurry! I'll bring this up at the school's ARD meeting, but it probably won't be until NEXT year (ie, third grade and he's in first now) that this will be implemented, if he indeed is on the spectrum. I'll post a follow up after the ARD in case any of you are still reading this

 

[kuhltiffany]

Definitely still reading

When we got our ADHD diagnosis the beginning of March we were also recommended to do an ASD testing as well. Luckily I'm a social worker by training and knew what to ask next. What were our options? Wait for the school to test, 1-2 year wait. Community agency, not severe enough to comment on wait. Pay out of pocket to another psychologist in the same office, 1-2 months. His appointment is April 23

I'm still so unsure of what we'll get out of this ADOS testing, no one has ever even mentioned ASD to us until now. DH is sure he doesn't have it, I just want to rule it out. He does have a few sensory issues, but also has auditory processing disorder, and from what I've read, delayed social skills are quite typical in severe ADHD...

The paediatrician we saw did not think he needed an ASD investigation. She did start him on Biphentin last week and we noted a minimal difference on the 10mg. I upped him to 15 mg. Wednesday and have noticed he's playing much more and relying less on electronics to occupy himself. I actually took him for a car ride and for the first time I can remember he actually didn't even ask for my iPhone! He's having much more side effects though, so hopefully those will die down. We're choosing to keep him on it full time, as I don't want him to feel less in control and cause him the frustration and lack of control he would have on his off-days. He already has low self esteem as it is so I'm trying to keep him on a more positive note whenever I can.

We haven't told the school he's on meds so it will be interesting to see if they notice any changes when he goes back next week (we're on Spring Break).

Thanks for keeping us updated!

 

[poohguys]

OP the patch was great when DS was on it. He is 11 now and has outgrown the highest dose. We found that it would take about 2 hours for the patch to start working. It seemed to last about 11 to 12 hrs. I am not sure what dose your DS is on now, but from what you said about it not lasting and him having meltdowns still he may need a higher dose. We recently had the same problems when we switched DS to his new meds until we got the dose right. I still think that there is more goin on with my DS than just the ADHD too. Working on getting the school to do more testing. Good luck I hope you get the answers you need.