Neuropsych testing on the horizon--some questions...

[Nancy in NH]

My 9 yr old ds has been struggling with reading. He also has trouble with spelling--not a surprise. We began investigating vision therapy and have decided to forego that option (don't get me started--it would be a long vent!). Ds has been evaluated by a developmental OD and ophthalmologist (at Children's in Boston) with convergence excess, so we know vision issues exist (MD at Children's feels all he needs is reading glasses for a time, not expensive vision therapy). While trying to sort out the vision issues and options, I became concerned that he might have dyslexia (dh, after reading about it, now believes he--dh--has it, too). Ds also has sensory issues and I'm unsure about attention issues. No doubt there are behavioral issues--he simply cannot handle it at times. To further complicate things, he suffers terrible migraines (has been seeing a neurologist for nearly 5 years with no help from meds we've tried--terrible side-effects) and has a severe congenital heart defect. This poor kid is dealing with so much and I've seen it taking a toll on his self-esteem lately. He struggles to keep up with his siblings and other kids in play, he's struggling with reading, and gets hit from out of the blue with debilitating migraines. Most days, it's difficult to know what symptom to attribute to which problem, if you know what I mean. Yes, he has sensory issues. But do attention issues stem from his vision problems? Possibly dyslexia? Do his meltdowns have to do with a behavior issue? ADD? Or simply a kid with too much on his plate? I've read and researched enough to drive me crazy. I see the connections between dyslexia, SPD, behavior, ADD, and even the vision issues. Now we just need some answers. And some help for this poor child of mine.

I met with our pediatrician today and she suggested we visit a neuropsychologist for an evaluation. We cannot afford the expensive testing, but I feel we owe it to him. Our pediatrician recommended a few NP's in our area, and we are booking an appointment with ds' neurologist to get her opinion and recommendations for an NP, also. How does one choose an NP? Would I be better served trying to find one close to us, or should I lean towards the NP's at Children's in Boston? My son already sees a neurologist there and all his cardiac records are there, too, even though we routinely visit a NH cardiologist (surgeries are done in Boston). What am I looking for in a good NP? Do you have any helpful advice on what to ask before I decide if an NP is a good fit? I'm a nervous wreck about all this. He sees so many doctors and is dealing with so much already that I worry he won't do well with hours of testing. I guess I'm just looking for some advice and encouragement. We are already worried about his heart condition right now, and his appointment in January could reveal he's reached a critical need for his 2nd open-heart surgery. And it feels like just yesterday that my older ds (11 yr old) went through open-heart surgery for his congenital heart defects (yes, that's two heart patients here). Please tell me we'll get through all this...

Thanks for bearing with me.
Nancy in NH
Mom to ds11(sinus venosus atrial septal defect and unroofed pulmonary veins, Brown's syndrome), ds9 (primum atrial septal defect, cleft mitral valve, mitral regurgitation, enlarged left atrium and left ventricle), dd7 (heart healthy!), and my angel dd (stillborn 4/12/96 at 36 weeks)

[Ottakee]

I don't have a lot to add here but wondered if you had ever tried Lamictal for the migraines. That is what they put my 11dd on 2 years ago and it has worked great. We have to do blood tests occ. to check levels but no other side effects---other than it can help attention and learning issues.

[Nancy in NH]

I don't have a lot to add here but wondered if you had ever tried Lamictal for the migraines. That is what they put my 11dd on 2 years ago and it has worked great. We have to do blood tests occ. to check levels but no other side effects---other than it can help attention and learning issues.

No, we haven't tried Lamictal. He's been through two rounds of meds--first one (can't recall the name, but it wasn't Lamictal) did not help at all, and the 2nd, depakote (valproate) had several horrible side-effects. We weaned him off depakote just under a year ago, and the neuro prescribed an anti-nausea drug to help with the nausea and vomiting. We just used it recently, and it was a disaster. Ds became so violently ill that we almost rushed him to the hospital. The very drug that was supposed to work quickly to stop the nausea and vomiting caused him severe vomiting and to shake so uncontrollably that his tiny body was shaking our entire living room. He apparently doesn't metabolize some drugs very well. The neuro suggested trying meds from the triptan group, but they have not been well studied in children. His heart condition plays a major role in our choice of meds, too. I did just look online for a detailed report of Lamictal and found that these were some reported side-effects:

Cardiovascular System: Infrequent: Flushing, hot flashes, hypertension, palpitations, postural hypotension, syncope, tachycardia, and vasodilation.


Some of the symptoms are the very ones we have to be vigilant about--palpitations, tachycardia--and he's taking a vasodilator medication, so further vasodilation wouldn't be optimal. That would lower his blood pressure to a dangerous level. I know the side-effects are often rare, but he doesn't have a good track record with meds and we are overly-cautious.

Ah, such fun in sorting it all out... I appreciate you sharing your success with Lamictal, though. We don't know if we'll try meds again, or not. His heart condition is severe, and is always front and center in how we approach treatment for other conditions.

Thanks!
Nancy

[MicheleB]

Just a quick comment before I run...

Have you tried testing through your local school system? Since you are tight on finances, I might do that first, before seeing an n.p.

We saw an n.p., but if our insurance hadn't covered it, I would have considered it a HUGE expense that told us *one* main thing (with other dx, but they were swept aside) and no help for the dx. IOW, you may end up just as frustrated at the end of testing as you are feeling now, and out of lots of dollars.

If his sensory issues are severe, I would think that would affect his attention. How can he pay attention if he is always 'bothered' by something else going on (scratchy clothes, yucky smells, too much noise, etc)?

What about an OT eval first? Have you done that? Just a thought as well.

I'm thinking I would start with the sensory issues, get them resolved, and see what happens from there. That's just my very humble opinion. But it may possibly be the least expensive route to go that would tell you the most amount of information. ???

I'm sure others will have lots more helpful info than I have. :)

[jensway]

:iagree: with what MicheleB suggests. If funds are tight look to your public school system. First step would be to contact the school where your son would be attending/ or is attending. Your will want to ask for the head diagnostician covering that school. Give them a thumbnail description of what is going on and that your pediatrician has recommended an evaluation. They should be more than will to help you.

I have found that the school system has been more helpful for us than our neuro doctor. The diagnosticians are always more that willing to talk with me and or email when I have questions. Once he is tested at the school, they will retest every 3 yrs. After the testing is complete and they have their reports done they will meet with you and go over them in detail and you can ask anything you want. They will also give suggestions as to what would be the best things to implement when teaching your son.

They are more of like a team that is on our side wanting to help anyway they can to help my son. I have not felt the same way towards our doctor.

[Paz]

If you think that dyslexia may be the problem I would suggest scheduling with an educational psychologist or neuropsychologist who performs the testing for dyslexia. My ds was tested 3 years ago by a neuropsychologist who was highly recommended. He did not have her do any writing, reading aloud or spelling. His evalution was that she was an average student, no other problems.

We had her tested again recently with an educational psychologist who usues specific tests for dyslexia. Her diagnosis was dyslexia and dysgraphia. The funny thing is that all her results and scores were similar to the other testing a few years ago but the educational psychologist did the additional tests that explained deficits that she had.

Here is a link that may explain more. Looks especially at the testing section.

http://www.dys-add.com/

[Laurie4b]

[QUOTE=Nancy in NH;610685] Yes, he has sensory issues. But do attention issues stem from his vision problems?

Attention problems are interconnected with sensory processing issues and can be connected with vision

Possibly dyslexia? Dyslexia sounds likely. ADHD and dyslexia are often co-existantDo his meltdowns have to do with a behavior issue? ADD? Or simply a kid with too much on his plate? Probably a combination of sensory processing, possible ADHD and too much on plate

I met with our pediatrician today and she suggested we visit a neuropsychologist for an evaluation. We cannot afford the expensive testing, but I feel we owe it to him. Our pediatrician recommended a few NP's in our area, and we are booking an appointment with ds' neurologist to get her opinion and recommendations for an NP, also. How does one choose an NP? Would I be better served trying to find one close to us, or should I lean towards the NP's at Children's in Boston?
I would go this route since he's known there. I'm thinking it's more likely that you'll get someone well trained.
My son already sees a neurologist there and all his cardiac records are there, too, even though we routinely visit a NH cardiologist (surgeries are done in Boston). What am I looking for in a good NP? Do you have any helpful advice on what to ask before I decide if an NP is a good fit?

Ask about their experience. Ask to what extent they will include recommendations for accomodations, instructional recommendations, etc. How much time does he or she spend on the parent interpretive? How long will it be until you get a report? Is he or she open-minded about homeschool? You want someone whom both you and your child feel comfortable with AND who is experienced.

Our np was great. Couldn't have asked for better. The evaluation was very helpful .

[Laurie4b]

Oh and definitely get an OT eval and treatment since there are processing disorders. It can make HUGE difference for the child and is typically covered by insurance.