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

[KristenFNJ]

{{{hugs}}} all around... there is no greater roller coaster than having a special needs kid! And mine *only* have adhd, I can imagine how much more complicated and stressful it is to be trying to identify co-existing disorders and figure out how to treat what first! My close friend's daughter has Tourette Syndrome and it's associated disorders (ADHD, OCD, Intermittent Explosive Disorder), so I have an idea of how difficult it all is.

I wanted to drop in and share some resources that I've found helpful with adhd, since I saw that was in the thread title... hopefully there will be some information that can help you as it has and continues to help me! I feel like I recall S&P being pretty strict about websites in posts, so I'm trying to play it kind of safe so I don't get kicked off! (Hopefully any mods would know this is all out of helpfulness and not trafficking or sales-driven!)

"addforums" is a huge message board covering every imaginable topic related to ADHD from medications to co-existing conditions to school/IEP issues... lots of commiseration and ideas. There is a sub-forum for Autism/ASP/PDD. There are some posts by a member who goes by "dizfriz" that are particularly enlightening when it comes to our kids and adhd (it's a "sticky" under general parenting), I recommend to seek those out even if you aren't compelled to delve into the rest of the forums. (the name in quotes is a dot com)

I also found a lot of information on "help4adhd" particularly putting layman's terms to the special education definitions. There is a message board there too, in fact that is where I read several posts from young adults stating how miserable they were throughout their childhoods when their parents wouldn't medicate them and now that they're doing well on medication they wish they could have their childhood back... of course, that's not always the case, for sure! But it certainly shed a very different light on the prospect of medicating my boys! It's a perspective that doesn't always rise to the surface, and I appreciated that. (the name in quotes is a dot org)

I also joined CHADD (Children and Adults with Attention Deficit Disorders) and took the Parent-2-Parent training. Lots of beneficial material there too. In fact, the emails I got from CHADD led me to getting myself diagnosed with ADD last year, imagine that after 38 years! (the initials plus dot org)

Anyway, I hope that there is some helpful information there as you all are wading through everything. Your kids are all so very lucky, not because it all goes right the first time, but because you all tirelessly plug away at seeking out what's best for them.

 

[JamesMom]

OP here, thanks all for reading and commenting!

New Update: Got back from the Neurologist today. I spoke with DS resource people, therapists and teacher at school and all but one saw some improvment (but could be more) while his reading resource said she saw no change (and is in fact, plateaued in his reading ability - more about this at his ARD next week). I gave all this info to the Dr who gave him the 'star' test again (Quiotient http://www.biobdx.com/products/quotient-adhd-system) and he pretty much refused to cooperate and gave the same reading as last time except for the 90 seconds when a nurse was visibly watching him and he actually did what he was supposed to!

Anyways, because of the slight improvment, the doctor is continuing with Daytrana but at 15mg now and added another medication, Risperdal, which has the label of an adult antipsychotic. The doctor says the Daytrana (ritalin) helps with focus, but the risperdal should help with processing, i.e., understanding and appreciating that when you take a test you should give it your all. It is often off-label perscribed to autistics. [ETA- actually the FDA did approve this medication for Autistic children age 5-16, but, I am not entirely convinced he is autistic or on the spectrum]
I ready (unfortunately) a few message boards and it seems to work with patients who have problems sleeping (mine sleeps just fine at night) and who have aggression issues: hitting, biting and the like (again, my son doesn't have these issues). ETA: I have read more articles and message boards that show this medication is for agression, tantrums and/or mood disorders. My kid does not fit this category so why is he being given this? Also, disturbing but minute possibilty of him developing breasts that might require surgical removal (2.5%). Uh - why is he in on this again? Does the doctor really think that refusing to cooperate for the 15 minute test constitute agression that needs to be managed with medication? Or she just so quick to jump on the Autism bandwagon that she is perscribing it out of habit? Or is she zeroing on the fact that I gave him the patch one day over spring break because he a couple of fits that morning (which are not the norm and what 6-7 yo doesn't have a meltdown occasionally?) These are the thoughts that kept me up last night, lol!]
So, of course, I am worried that this new med will attempt to fix what ain't broke. Anyone have experience with this combo?

Lastly, We are going to go broke dealing with this. My DH work has a high deductible plan which we met with my other's sons hospitalization and surgery (which we are still paying off) that cost us $10,000 (our OOP annual max) in medical bills last year not to mention his asthma maintenance meds cost around $200 a month (stockpiled last year when it was 'free'). Now with neurologist and new meds it is a princely sum: $1,000 and counting with 2 office visits and 1 daytrana perscription. Tuesday adds the $120 each I paid for the new 15mg Daytrana and 1 bottle of Respirdal (generic liquid as DS will not swallow a pill - could save 1/2 if he did - sigh). Oh, and we have a follow up in a month for another $390 office visit! Maybe I'll need an antipsychotic before all this is done, lol!

Thanks for reading!

ETA - I going to do some more research then probably call the Dr to discuss. I have him on the 15mg Daytrana this morning and will hold off on the Risperdal until I feel comfortable. I talked with my mother-in-law last night (who is a nurse) and she didn't think the Neurologist would steer me wrong. I just think the Doctor doesn't know my son! I am a little upset by all this. Any help would be appreciated. Thanks.

 

[perugiagirl]

My son was on risperdal at age 9 for a short time. It worked well for his behavior, but he gained a lot of weight on it so we took him off after a couple months. It did have a little bit of a sedating effect however. (we later figured out that the way to deal with the weight gain was to also put him on metformin)

on another note, regarding the financial drain, once we had a diagnosis on the autism spectrum, we were able to get financial help from the state under Katie Beckett insurance through medicaid. It was a pain to get approved, but was SOOO worth it because it opened up so many more services to us.

 

[of2dbeach]

My son is 19 and Autistic/Epileptic. he has bneen on Risperdal snce he was about 8 or 9 . it has worked very well for us. He was also on Ritalin and put his head through 2 windows and I made them take him off of it. He has never grown breasts, gotten fat or anything else. He also has ADHD so I think that combats the weight gain which i have seen been an issue with other kids on it.it does help him sleep through the night which was a problems before. I give it to him at 7:30 and by 9 he is asking to go to bed. He still tantrums but its not as bad and I have been working with a therapist to decrease the episodes.if you get a diagnosis of Autism it will open up other therapies for your son and some that will help you to learn to deal with his issues as well. You will also be able to get medicaid to pay for his docs, neuros and meds . That can also be used to pay for therapy.you may also qualify for SSI which is social security for special needs children but thats depends on your income.I think what you were seeing at the zoo is not a tantrum per say but a "melt down" ok this is too crouded for me i am over stimulated the heat is killing me i had enough so i will jump around and scream .. thats the difference. please listen to what i am saying. i am NOT saying he is Autistic but he could be as well. please take him to the Neuro for an evaluation not the school. We have a place here called The center for Autism and related disabilaties. they have all kinds of docs. They sat him in a room with a camera and watched him play and interact with me ( he didnt ) they really werent even in the room with us much they came in asked a few things went back out and watched him. they would ask him to do something or ask me to have him to things.he never wanted to do them but prefered to play with the baby toys in a basket. Mike was 3 when he was dx . You may want to look up The Autism Society. Whats interesting to note is April is Autism Awareness month.. Child Find is a good rescourse if you need an eval its done through the school district.if you need more help feel free to message me.

 

[JamesMom]

My son is 19 and Autistic/Epileptic. he has bneen on Risperdal snce he was about 8 or 9 . it has worked very well for us. He was also on Ritalin and put his head through 2 windows and I made them take him off of it. He has never grown breasts, gotten fat or anything else. He also has ADHD so I think that combats the weight gain which i have seen been an issue with other kids on it.it does help him sleep through the night which was a problems before. I give it to him at 7:30 and by 9 he is asking to go to bed. He still tantrums but its not as bad and I have been working with a therapist to decrease the episodes.if you get a diagnosis of Autism it will open up other therapies for your son and some that will help you to learn to deal with his issues as well. You will also be able to get medicaid to pay for his docs, neuros and meds . That can also be used to pay for therapy.you may also qualify for SSI which is social security for special needs children but thats depends on your income.I think what you were seeing at the zoo is not a tantrum per say but a "melt down" ok this is too crouded for me i am over stimulated the heat is killing me i had enough so i will jump around and scream .. thats the difference. please listen to what i am saying. i am NOT saying he is Autistic but he could be as well. please take him to the Neuro for an evaluation not the school. We have a place here called The center for Autism and related disabilaties. they have all kinds of docs. They sat him in a room with a camera and watched him play and interact with me ( he didnt ) they really werent even in the room with us much they came in asked a few things went back out and watched him. they would ask him to do something or ask me to have him to things.he never wanted to do them but prefered to play with the baby toys in a basket. Mike was 3 when he was dx . You may want to look up The Autism Society. Whats interesting to note is April is Autism Awareness month.. Child Find is a good rescourse if you need an eval its done through the school district.if you need more help feel free to message me.

Thanks for responding. We are on a wait list for a psych eval (won't be until at least September or later). I am curious about how my DS would qualify for medicaid on his own. Our family assests/income are well above the threshold for 'us' to qualify. I believe this is not an option for us, but if anyone can point me in the right direction, that would be a great relief! I do have a Dx of "encephalopathy mainfested by autism spectrum disorder" in writing from the Neurologist (wanted it to show the school for his upcoming ARD). Would this be enough to persue medicaid, if it is an option? And if you are curious, I have posted about my son's journeys with autism dx from school in my posts last year - do a search if you are really, reallly bored

My son has been on the 15mg patch for 3 days nows and his teacher has noticed that he is more sensitive to loud noises and plans to get headphones from OT for him. Also, his appetite is decreasing at lunch. Otherwise, he is doing about the same. Teacher seems pleased that he can sit in his seat and getting better about waiting his turn and not interrupting/raising his hand every 5 seconds. She told me this yesterday. I now know to get more detailed, situational examples in the future as when I asked her on Monday before his Neuro she simply said "he's better, but could be improved". Whatever that meant. Him sitting still in school is progress in my book!!
I'll get follow ups from his other 'helpers' at his ARD next Wednesday. He is also on his 2nd day of Risperadol - yeah, I started it - I calmed down . It is half of the eventual full dose he'll start next week. Haven't noticed any change, but shouldn't expect one for a few weeks. Wonder if it will help his appettite?

Thanks for reading my journey and helping me along.

BTW - Kristen, I have been hanging out on ADDforums as a lurker, very cool site. Thanks!

 

[perugiagirl]

Even with your family income, you still might be able to get approved for medicaid for your son through the Katie Beckett waiver. The Katie Beckett Laws were made to allow medicaid to help cover medical needs of disabled children when parents choose the option of raising them in their own homes rather than group homes, hospitals, institutions, etc. It is not dependent on family income. Each state is different, but I believe that nearly all of them have something like this. What state are you in? There is a bunch of paper work to fill out, and it always seems to me like they make it intentionally difficult, like they want to dissuade people from trying. I was clued into this aspect of medicaid by a friend right after my son was diagnosed with PDD-Nos at age 9, and it has been a godsend. The way it works for us is our regular insurance pays first and then the medicaid covers what they wont--it has been really helpful for prescriptions, occupational therapy, psycho-social rehab, etc.
I'm sure there are people in your area who can help you figure this out for your state.

 

[JamesMom]

Update - May 1
In case you are still following at home, lol.
DS6 had a followup appt with Nuerologist on Wednesday and he is doing much better. Compare his 4th 'quarter' report card which was essentiall all "needs improvement" to the 5th quarter with "progressing" and "satisfactory" pretty much says it all. Since starting medication he has not had a single behavior comment in his chart, his grades are improving (though his reading is stagnant - I have plans to work on this this summer). During the appointment he sat in his chair and stayed quiet for 15 minutes while the Doctor and I talked. What a contrast to the rambuncious (sp) kid who was running around at our first meeting. I feel more confident about the resperidone, too (despite its recent headlines) as I do see a decrease in meltdowns AND an increase in personal responsibility - he brushes his teeth without being told and can tell me the consequences of behavior - Wow! The doctor said this awareness is the benefit of the medication. Granted, it could be maturity, but the transformation of the last 2 months is staggering. I am quite pleased.
We have discussed med use over the summer as our family has camps/trips planned mixed with periods of brief 'homeschooling/tutoring' to help him catch up for 2nd grade (as well as maintain skills for DS9), we will continue the Resperidone daily and the Daytrana patch cut in half for the tutoring sessions as needed.
I am a skeptic turned believer. I was one of the parents who blamed parenting and lazy kids for ADHD symptoms. Now having walked in the shoes, I am thankful and much more understanding.
Still no word on when the ASD appointment will be. I still doubt he is on the spectrum, but I'll keep an open mind about that just as I have about the ADHD.
Thanks for reading!

 

[SueM in MN]

Even with your family income, you still might be able to get approved for medicaid for your son through the Katie Beckett waiver. The Katie Beckett Laws were made to allow medicaid to help cover medical needs of disabled children when parents choose the option of raising them in their own homes rather than group homes, hospitals, institutions, etc. It is not dependent on family income. Each state is different, but I believe that nearly all of them have something like this. What state are you in? There is a bunch of paper work to fill out, and it always seems to me like they make it intentionally difficult, like they want to dissuade people from trying. I was clued into this aspect of medicaid by a friend right after my son was diagnosed with PDD-Nos at age 9, and it has been a godsend. The way it works for us is our regular insurance pays first and then the medicaid covers what they wont--it has been really helpful for prescriptions, occupational therapy, psycho-social rehab, etc.
I'm sure there are people in your area who can help you figure this out for your state.

States handle it a little differently and may call it by different names.
When we were in Wisconsin, it was called Katie Beckett ( the actual little girl the original law was based on. She would have needed to live in a hospital to get her needs met without the bill being signed. ).

In Minnesota, the same program is called TEFRA.

While eligibility is based on the child's income, so almost all children qualify, states can and do have a copay system based on parent's income. You are basically 'buying into' Medicaid. If the income is low, there may be no copay or the copay may be very low. The copay goes up with the parent's income, so for parents with higher income, the cost may be more than the benefits.

Since this thread is not about trip planning, I am going to move it to the disABILITIES Community Board, which is for non trip subjects.
There will be a link on this board to the new location for about a week, then the link will go away and you will find the thread only on that board.

 

[SueM in MN]

we will continue the Resperidone daily and the Daytrana patch cut in half for the tutoring sessions as needed.

In general, medication patches should not be cut because it can cause the medication to not be released correctly.
A hint for lowering doses of patches without cutting.

Get some Tegederm - clear adhesive bandage material. Place the Tegederm on the skin and then place the medication patch over the top of the Tegederm so that 1/2 of the patch is over the Tegederm and 1/2 is directly on the skin. This will prevent the half of the patch that is on the Tegederm from being absorbed, giving you 1/2 dose.

One important point about removal of the Tegederm - it sticks VERY tightly unless you know the secret of removal. Lift a tiny corner or the Tegederm and then pull straight down to stretch it. That will remove it easily without pain. If you have ever used 3M Command adhesive products, it works the same way.

 

[JamesMom]

In general, medication patches should not be cut because it can cause the medication to not be released correctly.
A hint for lowering doses of patches without cutting.

.

OP here,

Thanks for moving the thread to the right board.

The doctor offered the advice to cut it in half, especially since we have a High deductible insurance plan where each patch costs $6, it'll be nice to save the other half for another day. We did this to use up the lower dose patches (tip: cut the patch so the backing on each half will still have two peices - first time I cut along the backing slit and it was murder getting the back off. For the 15mg which is retangular instead of the 10mg square - this will be easier to cut). I'll be monitoring his response on the patch and know if the meds are off. Thanks for the tip, though.