Soooooo discouraged | ADHD Information

So it is never ending! Those of you who've heard my story a hundred times, know we've had nightmare (s) on stimulants. Finally stopped them and started on Desipramine in June and added Omega's and Magnesium mid summer. We've had a GOOD summer. Not great, but good. Tics are gone, anxiety is not gone but better, seems less in a "fog" has gained weight, looks healthy and less moody. We did a new private neuropsych eval a couple of weeks ago since last year was not good at school. I just go the report and we are in for more frustration and heartache I think. My daughter has co-exisitng LD (NLD and specific LD) so it's always ticky to know what's LD and what's attentional. The one recommendation the neuropsych had for me was to go for a new psychopharmocological consult . I knew it, too good to be true, that she'd be side effect free, looking healthy, but totally unable to focus and attend at schoolwork.

I dont know what to do now, we CANNOT go back to stimulants. I had already set up her 6 month appt with the psychopharmocologist for next week  so we will be seeing him anyway, but I'm not sure what we do now.

Diane V39324.2959143519

I am sooooo sorry you are having such difficulties.

Sending a .

I am sorry to hear this, I know you have had a very rough time . She's a lucky girl to have a parent so invested in improving her life. She's got that going for her, and a lot of kids don't. So pat yourself on the back and take a deep breath.

I think LD just means they are behind grade level by a certain number of months, right? Is the LD a result of ongoing attention issues or does it stand alone?

I know this is a rehash for you, but I'm just wondering about your Strattera experience. Did the doctor ramp properly? 10 mg, 18 mg, 25 mg. .. Did he/she tell you to take it in the morning with a big breakfast that included protein? And if it caused stomach aches or fatigue, were you told to take it at night instead of morning? Did she reach the target dose and then stay there for 4 weeks to see the maximum benefit while the side effects disappeared?

I think you should seek out a top notch psychopharmacologist and follow through with the consult. It doesn't mean that you have to act on it.

You also might want to explore homeopathy. It is costly, works slowly, and it does not improve all symptoms, but it does help and is totally safe.

 

(((Diane)))

    It's difficult being a parent, isn't it?  Two steps forward and one step back.  Even though your dtr can't take the stims, there are other options and as she gets older, some of them may work better.  My gs takes Concerta, I have to use the tricyclics. My 36 yr old son  takes welbutrin.  I wasn't dxed until over the age of 50!  So, your dtr may have to struggle a bit, but she will make it!.  Hopefully ,some of the new meds coming down the pike will be of help.  I wish that Shire would get the go ahead for it's long lasting guanfacine.

   As for the ld, demand  that the school do an eval in her area of weakness.  It's a good starting point.  As you know, LDs, depression, bi polarism, etc, all are possible co exisiting conditions with adhd.  Rarely does one find an adhder with out a co exhisting condition.[I hate the word co morbid]

No Tellin, thank you, no we did not properly try Straterra, and that was my thought too. She tried Stattera briefly after two failed attempts with stims at age 9. We only used the starting dose for one month as an interim plan until we saw the psychpharmocologist. He chose not to stick with it and switched us to Adderral, which was fine at the time for a bit.

We see a pediatric psychopharmocologist, very knoweldgeable and very experienced. We have been working with him for years. He is great about trying all kinds of things. I'm not sure the new Shire drug will be for us as our major issue is focus and inattention.

No her LD does not mean she is just behind. Non verbal learning disorder is quite the issue. It affects their learning in everything, not just a specific thing like Dyslexia (awful to say, but I'd be happy with Dyslexia, that we could deal with). We can deal with NLD too, it's just more complicated.

granny fran, thanks. She is now 13 and we have been trying different routes like the TCA's). She took a small amount of Wellbutrin for a bit in addition to a TCA a couple of years ago, but couldnt tolerate it at a higher dose (dizziness) in combination with the Nortryptiline.

So my thoughts are maybe Wellbutrin again.....alone.....or give Stratterra another shot doing it right this time.

Diane V39324.5215277778Huge hugs your way...I hope you get it all worked out. Stimulants were a nightmare for us as well, as my DD also suffers from anxiety. The Strattera seems to be working great, so far no side effects and her anxiety is no greater than normal either.

Best of luck.

Tina

luvmykids, thank you. You hit the head on the nail as far as the differences between Aspebergers and my daughter . At least the social difference. My daughter CRAVES relationships. Luckily she's made a few friends, one very best friend.

and thank you again for the support, I keep thinking we've got her in a good place.............then school starts . But...........we didnt used to have good summers either, soooooooo we must be moving ahead right?!!!

A NVLD is a discrepency between verbal IQ and performance IQ of at least twenty points. These kids often sound very intelligent (verbal), however they have trouble doing the little things in life that are easy for most others (from tying shoes to figuring out how to do a lock combination to figuring out how to make their desk neat and clean). Disorganization is a big symptom. Most have math problems. Some are great readers (verbal). A NVLD is very similar to Aspergers Syndrome. The only difference is that the children are more socially adept than those with Aspergers. Some professionals feel they are one and the same. 

yes you are right there is quite the debate about whether they are the same. I dont feel they are.  At least in my non professional opinion. I've read a LOT about Aspergers and PDD and my daughter does not have most of those traits. She does, however, have the NLD "stuff". When they diagnosed her originally her VIQ was 18 points higher than her PIQ. IQ scores vary widely and change with the day and the person doing the testing. We had a new one done recently, but it didnt list the PIQ/VIQ, but I think it starts to mean a little less as they get older. As you stated chldren with PDD or Aspergers can also have a large VIQ/PIQ discrepancy. She is a terrible reader, but in good part due to her ADHD getting in the way. She has the visual spatial kinds of issues though. She does not ride a bike (although she also has low muscle tone and that is a big part of that) and didnt tie her shoes until age 8. She's "quite the challenge", but she's sweet caring girl, quite naive, but not shy and does just about anything to get her way . I truly think as an adult she'll compensate, but we've got to get her there .

We still have to address her attentional concerns and hopefully with the help of an advocate and another new med plan, we can get somewhere this year.

Diane V39334.634837963

Actually, ther are vast distintions between Aspergers and NVLD and just because a profesional has an opinion doesnt make it true. This is important information for new parents in the research stage because there are more than one and very serious distinctions between the two disorders.

Children wtih Aspergers are noted for not appearing interested in forming human bonds whereas in NVLD, children are typically interested in forming human bonds even though they are clueless about how to acheive them. Chidlren with NVLD recognize you exist while they miss the subtext of what your saying. Asperger children appear behind a plane of glass as they miss the subtext of what your saying. Children with NVLD want social acceptance versers Aspergers, where the children do not apprear socially interested. While there are over laps, the distinctions are very signficant. An accurate diagnosis is determined by the distinctions, not the similarities as many disorders have overlapping symptoms.

Diane, while you have a set back right now, you do have a plan and one day you will discover a plan perfectly suited to your dd's needs. While their needs may change as they grow, with good parents like you, children have the best shot in the world in terms of acheiving and experiencing quality of life as they grow older. Good luck and hang in there!

As far as not wanting the stims again that is up to you the parent.

So sorry Diane,

Feeling your frustration.  If only they came with an operation manual.  How many times have I thought everything was great until assessment tells us that things have gone badly.  I know that feeling of sheer disappointment - cry - take a deep breath and then look for another direction! You must be feeling exhausted.  

We have an organisation  in Australia called SPELD (specific educational learning difficulties) who are wonderful with things like assistive technology. We are having much success with the diet and supplements - our son feels that the fog has lifted.  Anxiety has almost disappeared and we have been able to slowly reduce some of the meds. Focus and attention have increased and he seems more relaxed.    This has been based on work done at the Pfieffer treatment centre in the states.  Our son had huge deficits in manganese B6 zinc and high level of histamine. The diet is a little difficult but he isn't fighting it because he feels beter.  Who knows what we think maybe working may be just an illusion.  

Take care 

Oh, I didn't realize you were referring to Non Verbal Learning Disorder. If I am recalling correctly, hallmark signs are low scores on visual/spatial testing and difficulting with reading comprehension. One of the first signs is difficultly learning colors. My pediatrician said that it's a soft neurological condition and difficult to diagnose. Are you confident in the diagnosis?

Regarding Strattera, I have read that it has anti-anxiety effects as well. This is from the strattera.com website:

What about Strattera in ADHD patients with coesxisting anxiety?

Strattera does not induce anxiety in Adult ADD patients. Strattera is clinically proven to reduce ADHD symptoms in child and teen patients with ADHD and anxiety.

I don't know if this link will be deleted or not, but here are the clinical trial results on Strattera and ADHD with Anxiety: http://www.strattera.com/hcp/strattera_adhd_anxiety_medicati on.jsp.

 

 

Hi I am so sorry this has been so hard on you. I was wondering if you have ever tryed more of the behavioral treatments? This includes parent training, attentional training and lots of new stuff being done with computers. Also  since 20% of kids don't respond well to stimulants it is often plan "c". Sorry I am not sure of your background like others so I figured I would ask...granted more for my benifit. I also started taking this stuff called provigil which is amazing at reducing the more interlizing issues. Not that I am an expert in meds or anything really but I do know alot about the behavioral treatments and if you were interested could give you information. Overall I am impressed at your dedication and your abilty to keep trying when stuff seems impossible. I know how it feels more to be in your daughters shoes than yours and can say that it means alot to see parents this dedicated.

I have also heard of provigil. It's another non-stimulant, but it's not FDA-approved right?Not for ADHD but it is for narcolespy just like ritalin. However, research had also showed great results, which is why my dr used it.  Other than the fact that it is super duper expensive it is really nice. Less jittry anxious and strangly less oh we will say moody.

I am confident in her NLD diagnosis, it's been confirmed twice second grade and again this neuropsych eval. Not that I doubted it from the earlier eval. Unfortunately the inattentivenss due to her ADHD (not the NLD although both cause it) is really getting in her way. Her impulsivenss too, this is all ADHD, NLD doesn't casue impulsive behavior.

I appreciate all the information on the Stratterra and the Provigil. I would be pretty nerovus about Provigil. We had a BAD time on stims this past trial.

I'm very willing to wait out the Stratterra and try that. For now we are upping her Desipramine (she is still at a pretty low dose) and we will see him next Friday so I love all the suggestions! My doctor would for sure prescribe off label if he felt it would work. We've beens eeing him for years. He has given her TCA's and Wellbutrin and Guanfacine all of which are not approved for children. She has actually done better on all of those things than any stimulant.....go figure . At least as far as side effects go. You cant beat a stimulant for focus. Cant trade focus for a kid who's pulling out eyelashes and looking like a drug addict though.

 

I am so sorry to hear that you are experiencing a valley instead of a peak.  You were so helpful to me when I was depressed about my son ever getting "better."

After I spoke w/my son's dr., I posted that he said a new, improved Tenex is coming out in January.  He was very excited and hopeful.  Does this sound like anything you could try?  I know Jan. is so far away, but...

As far as the school experience is concerned, as a teacher I can just say that you are your child's best advocate.  Make sure she is getting all the support she can.  Small groups are great for all kids, but especially those with learning problems.  Some things can't be "fixed."  You just have to work hard, convince your daughter to never give up no matter how hard it gets (easier said then done, I know), and pray.

I'm right there with you!  You and yours are in my prayers tonight.

Cindyann

thanks Cindyann. Everyones well wishes always give you a boost! We are on a better track as we have a med plan with 2 back up plans , and I've hired an educatioanl advocate to help with her school needs. I am quite persistant, so when the neuropsych wouldnt talk to me about her report because she is contracted by the school (nice huh ), I brought her report to our psychiatrist and he interpreted for me and now my advocate will interpret for them, I dont think they're going to like our new plan. She's not going to be rocket scientist, but she's going to do what her potential is if it kills me . The higher grades arent big on "small groups" so we'll have to strongly encourage them..............