Further Testing in public schools?? - CHADD's ADHD Pare...

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Further Testing in public schools??

Cjlyn profile image
27 Replies

Hi Everyone,

My son has Inattentive ADHD. He is on 10mg of Focalin RX, which I feel he needs a slow acting dose in the afternoon but as of right now he is only on the 10. My sons therapist suggested I have him evaluated for Sensory integrated dysfunction or sensory processing disorder. Has anyone done this through the school or is this something I do outside?? Any thoughts or suggestions?? He also struggles coming off the

Medicine at night very moody and agitated. Down right mean at times. Even having complete meltdowns at times. Has anyone gone through this also. Any suggestions? Is it the medication? It’s heart breaking because he is such a good kid. He is like a whole different person.

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Cjlyn
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27 Replies
Jorliss profile image
Jorliss

I also break down at night after my meds wear off. My doctor said this is very common with people taking ADHD medication. I also read a lot of threads on here of parents experiencing the same thing with their child. I take an ant- anxiety drug at night to avoid the meltdown. I am an adult so I am not sure what is good for a child. Just know your child is not alone in the proverbial crash after taking ADHD meds and is common.

ha11 profile image
ha11 in reply to Jorliss

How old are you dear

can you share wjat were your feelings when u were 6or 7 year old

and also now with adhd when u r in large group of kids or adults??🙄😢😢

Jorliss profile image
Jorliss in reply to ha11

I am 49 turning 50 very soon. I was diagnosed in 1973. I can tell you the diagnosis was spot on. I have every single symptom. I am an absolute textbook case.

I was confused as a child. My parents were confused. My parents were not told the symptoms of this disorder. Nobody knew what to expect. I got in trouble a lot.

The feelings I have now are the same exact feelings I had as a child. The only difference is I understand it and I take my anti-anxiety medication before it happens.

I became extremely irritable. My tolerance for concentrating and being in a noisy environment was minimal. Sometimes my breakdowns still happen during the day depending on the environment and the task I am doing. I now try to deal with this by having “quiet time”. Quiet time for me means pulling myself away from everyone and doing what I want to do. I can only be in large groups with noise for certain amount of time before I have to pull myself away and have quiet time. I come back to the noisy environment when I feel like I am ready.

ha11 profile image
ha11 in reply to Jorliss

First of all thanx for your response.

Now u able to manage thays great if you dn mind what sort of career u chose or your intersts .

Also the main thing of my son he is almost 7 in May coming , What about the feelings of hypeness like jumping when nothing to do and lack of focus and especially sillyness the most notable i feel in gatherings my son do

went with you???? or How at what age u started managing them .

Jorliss profile image
Jorliss in reply to ha11

Lack of focus is constant. Every second of everyday is a struggle. I lose everything I touch. I have very little memory. Everything must be written down or it doesn’t exist. My short term working memory is horrific. I still can’t add two digit numbers because I can’t hold the numbers in my head. I can comprehend a sentence as I am reading it but don’t ask me to explain it because I won’t remember what I read by the time I get to the end of the sentence.

School was a nightmare. I was still trying to comprehend the first few words of the first sentence while the teacher already moved on to the tenth sentence. I lost everything in between and therefore had no idea of what was being said/taught.

I have a Doctoral degree in Audiology. I got it from sheer determination and wanting to succeed and also having a parent who believed in me. I also searched out people who were willing to help me. For example, I spent my lunch hour with my English teacher, I spent after school at a friends house who’s father taught math.

I still bounce off the walls and act like a five year old. I embrace the child in me. It is a unique quality. My mother used to tell me to “grow up” all the time. It never helped.

I only realized the extent of my disability two years ago. Maybe it was two years ago. Time often moves differently with a person who has ADHD/ADD/EFD. Most people have some symptoms but I have them all.

ha11 profile image
ha11 in reply to Jorliss

Thankuuuu for ur time n response .

Did u get any special services at that time also if u dn mind u r male ??or female??

Also when u were able to control of urself especially immature behaviour in people around .

Thanxxx again onemore time.

Did you make friends 😊😊

You did great in studies ad well amazing.

Thanx for sharing each and every word dear it worth me alot.

Jorliss profile image
Jorliss in reply to ha11

I spent first and second grade in the principals office sitting on a wooden bench. I spent a lot of my time in special education classes from third grade up. I was then mainstreamed for some classes in high school but I was kicked out of most of those and put back in special education. I was not a bad kid. I was a silly, funny, good hearted kid with little impulse control.

I still can’t control myself and my social skills are horrible. I have an amazing support system. My coworkers help me and my boyfriend helps me. For example, my coworkers will let me know if I did something or said something wrong. My boyfriend will control my behavior by letting me know when we go out in this certain group or situation I must act like an adult and if we go into a shop with expensive things he will tell me keep my hands in my pocket. My behavior is corrected out of patience and love. They speak to me in a calm, loving and even voice. I live for praise.

Having ADHD is like having an invisible disorder. A child with ADHD looks like everyone else but their behavior is not. For example, you may see a child in a wheelchair who is multi handicapped and is moving its head back-and-forth banging his head against the head rest, kicking his legs and screaming. Can this child control it? No. Do we yell, scream and show disgust? No. Why? Because we know the child can’t or has a difficult time controlling it. Therefore, why do we yell and scream at a kid with ADHD? I know my parents did because they didn’t understand it.

I did not do well in my studies. I was horrible. I could not remember anything I read. I got frustrated very easily and I cried a lot.

The people that seek me out are true, kind and genuine and enjoy silliness and laughing. My father used to tell me “ if you make one good friend than you are doing good kid”. I think most kids ADHD or not think they must have a zillion friends and parents worry if they don’t.

ha11 profile image
ha11 in reply to Jorliss

Thanxxx alottt for sharing all details and feelings .

They are very helpful in understanding our kids .

Stay blessed and my love for u🌹👍👍😍 .

Cjlyn profile image
Cjlyn in reply to Jorliss

Thank you for sharing, hearing from others helps!

ha11 profile image
ha11

My son recently got medication and still its at pharmacy i m still in thinking process what will happen if i start meditate 10mg

My prayers and love for your son .

Wapsisandy profile image
Wapsisandy in reply to ha11

I am in the thinking processs today also. I just filled out the paper work today about the symptoms my grandson has and might send them in for an evaluation. I already know he needs something but I just know the medication will be the start. I really dont like hearing about the drug crashes.

Jorliss profile image
Jorliss in reply to Wapsisandy

I mhave drug crashes but it’s better then crashing all day for me. I take an anti-anxiety medication so I don’t crash as hard.

Jorliss profile image
Jorliss in reply to ha11

My behavior is better on medication. Medication has worked for my ADHD. I would rather be out of control at the end of the day and then all day.

Eclecticentric77 profile image
Eclecticentric77

Hi there, I also have Inattentive ADHD and have been studying ADHD for a few years now. Focalin works with the neurotransmitters Dopamine and Norepinephrine. When the medication wears off, these neurotransmitters are low temporarily, which causes the irritability and frustration. In order to combat this, I highly recommend taking the supplement N-Acetyl Tyrosine, which works by helping those exact neurotransmitters. I have been taking it an hour or 30min before my stimulant medication wears off (for 3yrs now), and it has greatly helped remove irritability and feeling down when the medication wears off.

With some stimulant medication, anxiety can be a side effect. For this I recommend L-Tryptophan, which works with the neurotransmitter Serotonin which deals with lowering anxiety and improving your mood. People with depression and anxiety have low levels of Serotonin. Also if you notice an increase in heart rate or blood pressure during a check up, the supplement CoQ10 is highly recommended to keep those two stable (in my honest opinion it is a crime that CoQ10 is not recommended when taking stimulant medication).

If you are interested, click on my profile pic to get to my profile, and on there you will find a link to helpful supplements for people with ADHD, what I take and why, and a series of videos I made for people with Inattentive ADHD and the issues they go through from elementary school through adulthood. Hope this helps.

AngelamarieQ profile image
AngelamarieQ

My daughter is on 15 mg of Focalin XL in the morning and 5 mg short action in the afternoon. It has helped a lot with her homework and extracurricular activities.

We had a complete psychoeducational testing performed by the school once they got the letter from the doctor that states she has ADHD and is entitled to 504 plan accommodations.

The test included sensory tests and the occupational therapist said she has difficulties in the sensory department. She gets very defensive when someone touches her without warning, alarms, Strong sounds, and even music distracts her and annoys her producing anxiety. She also has to wash her hands if they get dirty or sticky. She also like to work on dimmed lights.

She is very picky with her clothes. I buy her only tagless shirts. Texture is very important for her. Has to be very silky and soft. Hates jeans because they are rigid, they feel cold at touch and not expandable. She loves sweat pants.

She is in cognitive behavioral therapy. Just started yesterday. She liked the therapist. Hopefully, it will help her a lot

Cjlyn profile image
Cjlyn in reply to AngelamarieQ

Wow this sounds like my son. How is her emotions. My sons coping skills and emotional outbursts are extreme. He is very quick to get angry. His behavior is not age appropriate during this time. Usually he feels bad after or when the feeling has passed it’s like a totally different kid. Back to my sweet boy. Did you go through her school for all these assessments? How does she handle sleep? Without melatonin he struggles to fall asleep. Sometime waking up 5 times in a night. For the most part with melatonin he is fine but some nights it just doesn’t seem to do the job. Appreciate you response earlier. Always helps hearing from others! Thank you!!

AngelamarieQ profile image
AngelamarieQ in reply to Cjlyn

She has been getting more and more defiant and this last year has been really bad in school and at home and that's when I draw the line and decided to put her on medication, whether my husband agreed or not. We started with 10 mg of Focalin and when the school did the battery of tests she was on this med and she did good in her math and writing tests. So much, that she didn't qualify for the IEP plan, just the 504.

Nevertheless, the short working memory was very poor and the sensory issues were exposed. I just wonder what the results could have been if she wasn't on meds at the time of testing.... All the tests were performed during school hours by the school specialists. I was lucky to get the school to approved them as they are also watching the budget and resources. Local psychiatrists charge $2,000 for all these tests. It took about 4 weeks to get them all done and then we meet with all the specialists, teachers and principal to go over the results and accommodations recommended.

Basically, the teacher was already doing some of the accommodations for my daughter, but the important thing is that I got the tests done, the diagnosis and protocol are on record and it will travel with her for middle school, HS and college. So it is important to have these evaluations done during the elementary years. The earlier you have your kid in treatment the better the outcome when they are adults, which is when the executive functions get to the level of people of the same age, Late 20's early 30's.

My daughter is very smart, witty and funny. She can get very emotional, but we can still control her. I have to be very firm with her to snap out of her nasty behavior and use reverse psychology most of the time. Although, she is now telling me " are you using reverse psychology on me?". She is beyond her 11 years. She has always been very mature. She is an avid reader and her vocabulary is above superior. She goes into hyper focus behavior when it comes to books that she likes. She is reading 500 pages in 2 days. But when it comes to writing, forget it. She doesn't like to write and her penmanship is lousy as she writes carelessly to get it over with asap. In math, she just makes silly mistakes because of her lack of attention and distractibility. But with the meds, she is doing her math exercises and tests very good. We are pleasantly surprised.

We had sleep problems with her since she was a baby. She had night terrors, she will wake up with scratches all over the sides of her back, sleepless, never tired always going... Can't fall asleep early and if she does, she is coming down with a cold or flu. So I started using melatonin for the last 3 years. It has worked somehow. Not everyday is the same. She still wakes up here and there but not like before. She had separation anxiety so one of us had to put her to bed, very night. Tiring.... :-( Nobody slept well in our house.

Every child is different. Try other supplemts. Maybe your son doesn't metabolize melatonin well. So you might need another supplement.

I recommend checking out Dr. Amen books on ADHD. There are, according to him, 7 types of ADD. He has clinics in NYC, LA, and other major metropolis. I'm thinking of going to his clinic in NY to have a more in depth evaluation to get to the best treatment in the long run. I liked what eclecticentric77 had to say as it goes along the line of Dr. Amen research and treatment. The side effects of Focalin are showing up with lack of appetite and once the med wears off, she gets very moody and unpleasant and she is going into puberty. So we have to be ahead of the game. Best of luck!

Cjlyn profile image
Cjlyn in reply to AngelamarieQ

Wow your daughter sounds like my sons twin on every little part. I still lay with him to fall asleep. It is absolutely exhausting but I do some way love it too because it’s my time to just relax with him. I will check into that doctor thank you! I am in the middle of listening to a seminar from Dr. Russell Barkley. So far I have been amazed. He is right On target. Thank you for sharing.

AngelamarieQ profile image
AngelamarieQ in reply to Cjlyn

You're welcomed

Jorliss profile image
Jorliss in reply to AngelamarieQ

I can relate. I can’t be tapped. I hate when people tap my arm when they talk. I have to tell them I can’t be tapped. The first tap makes my anxious its going to happen again, the second tap I tell them I can’t be tapped, the third tap I move away so they can’t touch me. I hate loud sounds too. Alarms irritate me and I cover my ears. I also can’t be sticky. I start saying over and over again sticky sticky sticky and the anxiety builds until it’s off me. Clothing texture is everything and also how it fits. I wear jeans but it must be the soft stretch type.

AngelamarieQ profile image
AngelamarieQ in reply to Jorliss

yeah! just like my daughter. She used to have these tight fit pJ's that were size 6 and she was 10. She finally accepted the fact that they are too tight and we are moving on to loose clothing. I have to use a lot of reversible psychology to convince her of things that are just plain "not acceptable" for lack of a better word.

Same thing goes for food. She is so keen on all her senses. If I switch her milk, she would no the difference right away. If I cooked with garlic she won't eat the food unless is roasted garlic but she won't eat the garlic. She just likes the smell and flavor it gives food. Has a long term memory above superior but her short working memory is very poor :-(

This is a long journey but I'll do whatever it takes to help my sweet baby.

anirush profile image
anirush

Funny how kids react differently to this illness. My younger grandson had to have everything tight fitting when he was younger. Had lots of problems with socks too. But he still won't wear any kind of shirt except the silky athletic ones.

Jorliss profile image
Jorliss in reply to anirush

I can relate to your grandson. I am the same way. I mostly have to wear cotton t-shirts and it has to fit a certain way. My clothes must be tight at night. I have so many other sensory issues.

Cjkchamp profile image
Cjkchamp

My son was seen by both a neuropsychologist and an occupational therapist. Occupational therapists are also in our school district. They seem to provide more “support” than services. Check with you insurance for occupational therapists. We were on a waitlist for six months.

My son is also on 10 mg Focalin XR. I do notice he has trouble at night now, which I didn’t see when he was on 5 mg.

Cjlyn profile image
Cjlyn

When he was on the 5mg how did he do in school? My son has been doing well in regards to attention, focus, being engaged in class discussions and overall less stress and overwhelmed but at night easily agitated, can be aggressive and down right angry if he’s thrown off his routine or if he feels he is not ready for bed. His responses are completely not appropriate nor age appropriate. I feel the Focalin helps these emotions during the day but at night it’s down hill. Did you pediatrician ever speak about adding a midday short reacting dose?

Cjlyn profile image
Cjlyn

I am having an sensory evaluation done at the school found out today they offer services and I am also going outside the district evaluation. I haven’t been too impressed with the special Education in my sons school.

Jorliss profile image
Jorliss

My behavior is better on medication. Medication has worked for my ADHD. I would rather be out of control at the end of the day and then all day.

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