Cognitive Dysfunction ??

[PurpleAngel]

Over the past year my daughter has begun struggling more and more with school. She doesn't understand the 3rd grade math to save her life. She can read at her grade level, but she can't write very well. I have been telling the teacher that the few math problems that she is supposed to do at night turn out to be an hour struggle. I even had a meeting with the school social worker and psychologist, so both told me that they really couldn't do much as she was testing in the middle 68% of kids her age, and that Epilepsy isn't considered a disability in the eyes of getting her any additional help.

So I took her to the Children's Hospital and had them do neuropsych testing. I figured if there is a problem with her learning that it would show up there. Since her last testing in 2007, her overall IQ dropped 17 points. Her non-verbal IQ went from the 35 % to the 15% and her Verbal went from the 16% to 5 %.

The diagnoses that the Neuropsychologist gave was "Cognitive Dysfunction secondary to neuological condition." I have done some looking around, but most of the info I have found relates it to an underlying psychiatric condition. onder:

 

[Ann T.]

PurpleAngel:

Hello. You may understand the phrase "Cognitive Dysfunction secondary to neurological condition", if you take it apart. The 'neurological condition' describes epilepsy, which is the primary condition. The secondary condition is the 'Cognitive Dysfunction' which means that your daughter is having difficulty understanding the lessons being taught in school due to her epilepsy.

I would show the hospital test results to your daughter's teacher, school social worker & psychologist to see if your daughter can qualify for the Individualized Education Program (IEP) [a.k.a. Special Education] at her school so she can receive the academic attention she needs. Please remember that your daughter will stay w/ her homeroom teacher in the subjects she does fine in (example: Reading) & will be assigned to a different teacher in the subjects she needs assistance with (example: Math). I hope this explanation helps. Best Regards ~Ann T.

 

[PurpleAngel]

Thanks! All the things I read refer to the dysfunction as a symptom of either MS, Lupus or a psychiatric disorder. I don't think she has any of the above...

I left messages with all of the people whom I had the the meeting with in the beginning. I have heard from other parents (one who is a good friend and whose son has alot of learning problems) that the school system isn't real good about supporting parents. I hope that they are wrong. I figure if I give them a week to return calls and figure out a time that everyone is available, that should be plenty. If I don't hear anything I will keep calling until they get sick of hearing my voice and do what they should.

 

[Meetz1064]

You can

also take the approach of writing letters. Take a copy in, and have the secretary SIGN for it, so that you have written proof it was accepted. If you still get no response, you can start going over their heads.....

 

[RobinN]

My daughter struggled to for a while. Ever since beginning Neurofeedback, it has not only improved seizure control, but it has also improved cognitive function.
She sees improvement in note taking. Her scores on her tests are slowing improving.

She will never be the star of the class, but she is certainly holding her own.
Never could have said that if she was walking in a brain fog from medication.

 

[drarvindr]

Dear purpleangel,

what kind of epilepsy does your daughter have? some medical articles point toward cognitive dysfunction in children with certain types of epilepsy. perhaps if you found one you could show it to the school authorities. The sooner she gets special ed the better. Because epilepsy is so variegated in its presentations , those in power refuse to see it as a disability , even when it is .

Just to set your mind at ease :
Things to look out for:
Symptoms of MS:
1) early ms presents with electric shock like feeling in the patient
2)patchy loss of vision
3)numbness , tingling or fatigue in one or more limbs , gradually spreading over the body
4)difficulty controlling emotions - sudden laughing or crying at inappropriate times
diagnosis of MS requires a good quality MRI

Symptoms of lupus:
1)sudden fatigue , weight loss/gain, fever
2)painful joints( most common symptom)
3)rash over the cheeks connected over the bridge of the nose in a butterfly shape
"malar rash"
4)delirium
5) seizures ,rarely . they tend to be tonic clonic or status epilepsticus
(the test for lupus is called an ANA or anti dsDNA test , which tests for antibodies. you can get it done if you're worried)

It could be psychiatric , but you say you've already taken her to a social worker and psychologist , who should be able to spot psych diagnoses.

Hope that i've been of some help,
Sincerely ,
Arvind

 

[Zoe]

Over the past year my daughter has begun struggling more and more with school. She doesn't understand the 3rd grade math to save her life. She can read at her grade level, but she can't write very well. I have been telling the teacher that the few math problems that she is supposed to do at night turn out to be an hour struggle. I even had a meeting with the school social worker and psychologist, so both told me that they really couldn't do much as she was testing in the middle 68% of kids her age, and that Epilepsy isn't considered a disability in the eyes of getting her any additional help.

So I took her to the Children's Hospital and had them do neuropsych testing. I figured if there is a problem with her learning that it would show up there. Since her last testing in 2007, her overall IQ dropped 17 points. Her non-verbal IQ went from the 35 % to the 15% and her Verbal went from the 16% to 5 %.

The diagnoses that the Neuropsychologist gave was "Cognitive Dysfunction secondary to neurological condition." I have done some looking around, but most of the info I have found relates it to an underlying psychiatric condition. onder:

Dear Purple Angel,
There are a few other possibilities you may want to explore, one being is she too sedated on her meds? This is a question you may get help with from your daughter's pharmacist, who should be able to give or help you find information on side effects of her meds.

Thomas Bennett wrote an excellent book, "The Neuropsychology of Epilespy" directed to professionals. In it he discusses how AEDs may cause or worsen cognitive impairments. As I recall there is also information on drug induced nutrient depletions and how this may affect the ability to function normally. The book is out of print, but you should be able to get it through interlibrary loan and I found it is available [free!] on Google books.

"The Neuropsychology of Epilepsy - Google Books Resultby Thomas L. Bennett - 1992 - Medical - 316 pages
As a result, anticonvulsants may compound the cognitive difficulties and behavioral problems seen in persons with epilepsy (Bellur & Hermann, 1984;

http://books.google.com/books?id=ndSfxaDRtQgC&pg=PA73&lpg=PA73&dq="%

You may also want to do a google search on "anticonvulsants" cognitive impairment" or on each of your child's drugs and cognitive impairment.
Gluten sensitivity is another possible cause of her difficulty that is easily over looked. Celiac disease is the most recognized form of gluten sensitivity, but is not the only one. Gluten sensitivity is linked to epilepsy and many neurological disorders. Also some anticonvulsants use gluten and\or lactose as fillers, giving drugs their bulk and binding them together.
Gluten sensitivity is also linked to causing areas of diminished blood flow in the brain which can trigger seizures or changes in behavior. Left untreated the chronic inflammatory reaction to gluten can lead to white matter lesions in the brain and\or scaring and the formation of plagues or calcium deposits which could become the focus points where seizures originate.

Regional cerebral hypoperfusion in patients with celiac disease.
AU Addolorato G; Di Giuda D; De Rossi G; Valenza V; Domenicali M; Caputo F; Gasbarrini A; Capristo E; Gasbarrini G
SO Am J Med 2004 Mar 1;116(5):312-7.

BACKGROUND: Neurological and psychiatric disorders occur in approximately 10% of patients with celiac disease. Although some of these alterations respond to a gluten-free diet, the etiology of these abnormalities is uncertain. Because of a case report that cerebral hypoperfusion in a celiac patient resolved after a gluten-free diet, we studied brain perfusion changes in untreated celiac patients, treated celiac patients, and healthy controls. METHODS: A total of 15 untreated celiac patients without conditions affecting brain perfusion were enrolled; none had neurological or psychiatric disorders other than anxiety or depression. We also studied 15 celiac patients who were on a gluten-free diet for almost 1 year, and 24 healthy volunteers of similar sex and age. All subjects underwent cerebral single photon emission computed tomography examination. RESULTS: Of the 15 untreated celiac patients, 11 (73%) had at least one hypoperfused brain region, compared with only 1 (7%) of the 15 celiac patients on a gluten-free diet and none of the controls (P = 0.01). Cerebral perfusion was significantly lower (P <0.05) in untreated celiac patients, compared with healthy controls, in 7 of 26 brain regions. No significant differences in cerebral perfusion were found between celiac patients on a gluten-free diet and healthy controls. CONCLUSION: There is evidence of regional cerebral blood flow alteration in untreated celiac patients.
http://www.uptodate.com/online/content/abstract.do?topicKey=pedigast/6875&refNum=55,57,62,63
AD Institute of Internal Medicine, Catholic University, Rome, Italy. g.addolorato@rm.unicatt.it
PMID 14984816
Below are a few related links:

www.coping-with-epilepsy.com/forums/f22/gluten-docs-seizures-good-news-5464/ - 119k


Brain And Neurological Problems Affect Almost Half Of Celiacs Even ...Dec 31, 2007 ... Epilepsy is well documented but the studies are confusing enough that there is ... The Food Doc, Dr. Scot Lewey, is an expert medical doctor ...
http://ezinearticles.com/?Brain-And...eliacs-Even-With-A-Gluten-Free-Diet&id=904155

Another good web page where you can ask more questions on gluten sensitivity is http://www.celiac.com
Also this web site list some of the nutrients depleted by AEDs. Your pharmacist should be able to give you more information.
http://www.healingwithnutrition.com/edisease/epilepsy/epilepsydrugs.html

I know I was severely "cognitively impaired" when I took medication for my seizure disorder. I had brain surgery for seizures that failed. I combined a gluten free diet, behavioral therapy, supplements, neurofeedback, and yoga to manage when all drugs failed. I've been seizure free without using drugs since July of 1998.
It would be a shame to label your daughter with a psychiatric or psychological condition or learning disorder when she may simply be ill in some way.
MOST IMPORTANT is to trust your mother's instinct on your daughter's health. If she needs special education services and is not getting it, you can take some action. She has a right to special educational services under federal law. If she isn't getting the assistance in school that she needs you can contact the federal office of civil rights for your region. Your librarian should be able to help you get that information if you don't find it on the internet. Please keep us posted on how things go for your daughter.
:soap::mrt:

 

[skillefer]

Hi Purple! I'm a special ed. teacher, and Ann is right on. Please know, that your child should qualify for special ed. services under the qualifier Other Health Impaired. Here's the basic rules...

1. they can't test your child for special ed. services without your consent
2. After receiving a written request for evaluation from you, The school must send you a written notice or assessment plan w/in 15 days of your written request.
3. you also have the right to written notice from the school district if they refuse your request.
4. also, you can revoke your consent to testing, but only in writing.

Hope this helps.

 

[RobinN]

I personally am against psych testing when under the influence of heavy neuro drugs.
I do not believe you will see the true picture of your child.

My daughter is functioning at quite a higher level now since the drugs are out of her system. She would not have done well on the psych tests

The school testing is just in order to get them special services. This has been a gift in many ways to Rebecca. Teachers that are trained to understand the difficulties etc.

 

[PurpleAngel]

I'll try this again. Typed everything out so I could hit the wrong button and make it disappear.

K has "generalized seizures with absence seizures", although she does do the picking that is seen with atypical absence seizures. She is very stubborn, and refuses to cooperate with the Dr. when we do see her, so there is a TON of guesswork going on. She doesn't do it out of fear of the unknown, or anything like that. I have tried everything from asking if she is scared, unsure, not feeling well.... I have even bribed her to talk, and it worked once. Now she goes in with the attitude of unless you give me this, this and everything other thing I ask for, you aren't getting my help. Plain stubborn.

I asked the insurance company about trying neurofeedback. They would consider paying for it, after all medical routes have been exhausted. So until she has tried every drug that can be used with her type of seizures, they don't want to consider it. And the nearest center is 3 hours away.

I talked briefly to the school psychologist. She stopped me Friday after school, and wanted to meet with me right then and there. I was not prepared, nor did have any time so I told her she would have to call me sometime this week.

Her Ped. said to set up the meeting, and take copies of the Dr. reports and tell them what I want to see happen, and that the Dr's agree that the sooner they offer her the help she could use the better it will be. Ped. would like it to happen yet this year before she gets into 4th grade and the work gets harder, and K falls further behind.

 

[joan]

I think you are wise to look into a 504 plan. I wish I knew sooner that my kids were having issues. I could have made it easier for them and not been such a pain pushing them. Looking back, my son is 19 and in his second year of college, he personally maxed out on math in 10th grade. Before that he was a wiz with math. He loved it and he enjoyed the puzzle element of math. Then 10th grade advanced math came and he had issues with it. It was hard. He didnt understand it and it frustrated him. He kinda wanted to just give up on it. We ignored him and just pushed him to try harder, study better. My daughter now in 10th grade and it seems the same is happening with her. I think, and Im not a Dr, that something to do with the kind of concentration needed for math just trips in my kids and math just shuts off. They retain what they know but have little interest in going further. We are working on a 504 for my daughter and my son just got one that hopefully goes into effect shortly. I hope this puts them back on an even footing with other students. Both my kids genetic Es that we didnt know about till each hit puberty.
Hang in there and good luck.
joan*

 

[Andrew]

Hi Purpleangle,

You may be interested in the following URL:

http://emedicine.medscape.com/article/985667-treatment

I have a type of Pyridoxine (vitamin B6) Dependent Epilepsy. On 20th Feb 2009 I will have been using Pyridoxine to control my seizures for 38 years.

I have never used any AEDs. AEDs have no positive effects on my seizures.

When I was 14 years old I taught myself how to solve the Rubik's Cube.

My seizure medication now consists of B vitamins only.

Here is a question that I posted to Fermilab in 2002 and their reply:

http://www.fnal.gov/pub/inquiring/questions/blueberry.html

A high dose of vitamin B6 may cause Peripheral Neuropathy. Vitamins can also interfere with other medication(s) you may be using.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards

Andrew

 

[ziggidypoo]

Purple Angel I really feel for you.

My 1st seizure was @ 18 mos old, and I was on no meds there after, and had MUCH problems in school. A few yrs ago, I went for a hearing test and the dr said my hearing was more than perfect, but I had Adult Attention Deficiet Disorder. Looking back, I am certain I had learning disabilities, talked to my primary school friend and she said DUH, we all knew that back then. But, in the 60's they had nothing. I really hope you can get the help for your child - other kids can be cruel, I remember. My son showed the same problems and I pulled him out of public school and home-schooled him. Both of my grandchildren have learning disabilities - one has Diabetes I and epilepsy too (the 2 grandchildren are 1 from each of my daughters). My 1st daughter had learning problems. My 2nd, was borderline genious level!! She always made A's, even in college. My son barely scraped by.

Sorry, I honestly don't mean to ramble, part of my own oddities. And don't even realize I am doing it.

One more thing - back in the day when I used to drive a car in TN - I would get in the car and arrive at my destination and not know how I got there!! Scarey. OR, drive past the destination!! Freaky. (sorry, just a passing thought. If I don't write things as they come to me, I forget them.)

Thanks, ya'll for enduring me. I try to conform. Never did "fit in" anywhere in life. Temporal Lobe?? or just me??

In college, in a normal setting I barely scraped by, but in smaller classes in 2 colleges with more 1 on 1 help - I had a 4.0 GPA. Had a certificate from a computer programming school (in the 80's) and the pre-admit aptitude test tested me extremely high. Now, from all the seizures I would test below normal I am sure. But, I am still "ME"!!

Now, I'm all finished, again thanks for enduring.

Thanks.

 

[thelmonk]

Over the past year my daughter has begun struggling more and more with school. She doesn't understand the 3rd grade math to save her life. She can read at her grade level, but she can't write very well. I have been telling the teacher that the few math problems that she is supposed to do at night turn out to be an hour struggle. I even had a meeting with the school social worker and psychologist, so both told me that they really couldn't do much as she was testing in the middle 68% of kids her age, and that Epilepsy isn't considered a disability in the eyes of getting her any additional help.

So I took her to the Children's Hospital and had them do neuropsych testing. I figured if there is a problem with her learning that it would show up there. Since her last testing in 2007, her overall IQ dropped 17 points. Her non-verbal IQ went from the 35 % to the 15% and her Verbal went from the 16% to 5 %.

The diagnoses that the Neuropsychologist gave was "Cognitive Dysfunction secondary to neuological condition." I have done some looking around, but most of the info I have found relates it to an underlying psychiatric condition. onder:

Hi. My scenario is a little different. My epilepsy is the result of a head injury I incurred my first year in college. I have had epilepsy since then. Anyway, it took me a few years to get going in school again but I finished with a BA in English and minor in Philosophy.

It is always hard to examine the past without the present in mind. What I mean is, it is hard for me to try to remember what my cognitive functions were like before I had epilepsy, a scar on my brain, and was on high dosages of multiple medications. I thought I was ok and was making excuses for myself.

I had a test from a Neuropsychologist a year ago, after I had finished school, and essentially they told me that my IQ had dropped from what they believed my IQ was before my epilepsy was induced. They also told me that I should have had special resources in school: including extra time on tests, a note taker, etc. They told me that if I ever entered graduate school, like I was and am planning, I should have these special circumstances. I of course am stubborn and I force myself to learn everything, via extra time on the books and essentially spending all of my free time studying. I'm not sure that is a healthy life for your daughter but that is the way I dealt with it.

I have definitely encountered problems with recognition, name recollection, etc. and diction, but I cannot be certain whether that is a combination of the drugs I have been prescribed and the epilepsy or one of the former alone. There are instances, quite frequently, where I have to fish for things that I know in my mind and it can be frustrating. I don't know if people who don't have this disorder go through this, but I know I once was better at finding the things I lost.

I think maybe giving your daughter stimulation and finding things she is good at, areas of study that she remains strong in, will be helpful. Keep me updated.

 

[Bernard]

I asked the insurance company about trying neurofeedback. They would consider paying for it, after all medical routes have been exhausted. So until she has tried every drug that can be used with her type of seizures, they don't want to consider it.

That is so backwards. They'd rather pay $ forever on drugs than $$$ for a limited time and save money in the long run. I'm hoping this may change soon.

In any event, I'll just add my :twocents: that neurofeedback would definitely help with the cognitive deficits/impairment and seizure control.