Nervous about 1st Neurologist Visit

[Bernard]

Background: Modified Atkins Diet

One member here has posted about their experience with the diet: raubenheimerw's experience with the Modified Atkins Diet

Modified Atkins Diet social group

Some recipes

[korisue]

I have "fired" 2 neurologists, one of whom was supposedly the "best" in the western US - plain words, he sucked. He was the first to see my daughter. The second was ok, but didn't seem to worried about the underlying neurodevelopement disorder and all he wanted to do was switch drugs all the time which i think was horrible for her. She has been through the long term EEG's and all that "stuff". Our third neurologist is awesome! I was introduced to the Vagul Nerve Stimulator - which i had never even been told about by the others - and after thorough research my husband and i decided to have it implanted in our girl. It was really hard letting her go for surgery and seeing her like that after - but i have never been more thankful in my life for Dr.Kao and introducing her to that. We live 4 hours from our neurologist and make monthly trips now for adjustment to the VNS. It took a couple months, which is actually a bit early for it, to start showing improvement but WOW what a difference - She is learning again, is happy again, and currently 33 days seizure free - which for her is AWESOME!!!! (We were approached about the Keto diet, and i researched it, but she still doesn't eat solids very well so wasn't an option for her) From one parent to another i will say this - TRUST YOUR INSTINCTS! And no matter how "qualified" a Dr. may APPEAR to be - you know your child better than anyone else ever will. You will have to fight at times but do it and don't give up just because the Dr said so. You are your childs advocate in this, for me i will always be her advocate because of the learning disabilites her seizures and other problems have caused. Bottom line - if it feels wrong, it is. I will never allow her to be put thru those shots again and think they should be tossed out, but i know they have helped others. And a lot of people don't like the Depakote, but for my girl that has been the most consistent with the least amount of side effects. I too knew nothing of seizures etc until a few years ago now and i learn something new everyday about it. Anyway, best wishes on all

[CJR]

Benard~Thanks for the link list. I've made good use of it already. Ran to the library today and borrowed the Atkins book and recipe book. I'll post more about it in the Atkins group (rather than bore those who might not care about Atkins here).

Korisue~I've told the story of how my daughter was misdiagnosed originally here before. (but if you'd like to hear the whole story check out our E. blog) The second she was misdiagnosed my instinct kicked in. I didn't rest until I got a second opinion from a trusted doctor/friend. We had to wait for testing but when the results came in it was pretty conclusive that she had Epilepsy. So I completely agree with you about trusting your instincts and about being your child's advocate. Those two steps are the most important part, IMHO.

[tinasmom]

CJR - I am so happy that everything went well with the appointment. It's funny how we can become "Psychic" with help from others and the information on the internet. Luckily, we only had to go through 2 other doctors to find the right one for us. It's because of all the knowledge that I have consumed in the last year that has made me a good advocate for Nicole. I sure wish that I would have found this place sooner, but I guess that wasn't in God's plan.

[stilldancing_98]

I'll dance with you!! Yea!! Teresa

[stilldancing_98]

Depakote is given by weight, so blood levels are not always given. It may seem right for the weight but it is not right for the child. So just watch for changes in weight, dizziness, sleepiness after a few weeks. Then if you notice those things when your child should feel better, request blood levels. I was on it and now my son is. Good luck. And I am very happy for you. Teresa

[CJR]

Dr. Barkan asked for blood levels every two weeks as we are weaning from the phenobarbital and starting the Depakote. I've been watching her like a hawk and the main side effect so far seems to be sleepiness (which she was experiencing when on the Pheno by itself so it's a bit more dramatic now). And she may be a bit more spacey than normal but I've seen a decrease in her hand jerks and a slight decrease in her eye rolls. Maybe as the coverage gets better I'll see better results. Patience is not my strong suit.

[nana1]

Yes i have special glasses for my Photosensitivy. My glasses are a green tint. When i am using computer I have special glasses cause of screen plus i have a screen ( greenish blue) on top of my regular screen. This helps on brightness from computer. When i see a doctor, you now that small light they check your eyes with, that is way to bright for me. When i see eye doctor we end up fighting just to get eye test in as light bothers me i keep shutting eyes.
When i see my neurologist now, he sits there and listen and talks to me. I do like him. It has taken me 6 doctors but he is good and we can sit and talk and listen to each other. We decide what new medicine maybe i should try ( if it would go with what i take). I told him i would not go back to a hospital in Boston, ma, ( were i live) as doctor does not listen and made me cry and told me i did not have epilepsy, while i was talking to this doctor i had grand mal in front of him ( but i don`t have epilepsy) Some neurologist can be rude while some others are great, just depends on who you like and you want to be comfortable around also.
nancy

[CJR]

Nancy~

It's a shame that you have had to deal with so many Duds before finding a Darling Doc. Unfortunately, it doesn't seem to be a "rare" story. What I've found that sometimes the staff at a hospital (nurses, support staff) are sometimes much kinder then the doctors are. I don't have an option but to continue to have my daughter treated by the same hospital that misdiagnosed her because the area we live in doesn't offer any other options.

You are the first person I've been able to find that has special lenses. I'm very anxious to hear your opinion regarding these. The neurologist is "guess-timating" that my daughter will need a blue tint but we really haven't started that process yet. Feel free to tell me your true opinion...PLEASE!

[RobinN]

Is this the Irlen Therapy?
I have read about that at the EEG Institute.

[CJR]

I've been trying to research them but they are (apparently) rarely used in America. Although, if you believe this study done in Italy then these lenses should be widely used.

As far as I have learned the lenses are Cross-Polarized and custom tinted to block out the specific colored light that triggers the PPR in each individual. Our Dr. said that it was a new treatment trend when she was at the Mayo Clinic. She's only been at our hospital for a year. She says there is a local Dr. who might be able to help us order the right lenses but if not... Well, She asked if I like to travel. I'm not so concerned with all that right now, though. I'm mainly interested in trying something non-pharmaceutical (simple partial?) to help treat her environmental triggers.

[hawke86]

What is the Irlen therapy? I never heard of it.

[CJR]

Well, in trying to learn about tinted lenses to treat PPR I've learned that Irlen Therapy is the use of colored lenses or overlays to help treat ADD/ADHD, Autism, Epilepsy, Dyslexia, and Learning difficulties that can include: Poor reading, Poor comprehension, Sensitivity to high contrasts, Difficulty in judging distances, Eyestrain, Fatigue, Headaches, Poor attention span, Poor listening, Hyperactivity. The Irlen therapy does not claim to cure these conditions but it can improve posture, co-ordination, eye contact and motor activities.

Meanwhile, the Z1's in the studies I've found have been approximately 94-96% effective in either reducing or eliminating PPR. While I suppose that isn't considered a cure either for my daughter it would be a minor miracle.

[hawke86]

I don't think it will work for me. It probally won't. I don't know if I have the time to try.

[CJR]

I don't think it will work for me. It probally won't. I don't know if I have the time to try.

From what our neurologist says if you get the right lenses it's as good as an instant fix for seizures brought on due to photosensitivity. However, I have no real hands-on-knowledge yet. So, make up your own mind.

One thing I noticed is that as our Dr. sat down my daughter had a seizure (eye roll/flutter) and immediately the Dr. stood up and shut off the overhead fluorescent lights. There was a large window in the room so it wasn't completely dark but it made it much more comfortable for her. Because of her attention to detail like that I'm willing to hope that these lenses will be effective.

Besides, there's always time for Hope, right?

[hawke86]

I have transition lenses I don't if that's the way or if it works same the way.

[hawke86]

I don't know if it works the same way.

[RobinN]

Scotopic sensitivity syndrome, also known as Irlen Syndrome , approximating in some ways to Meares Irlen syndrome, and 'Visual Stress', refers to visual perceptual disorder(s) affecting primarily reading and writing based activities. Its existence is not recognized by some major medical organizations including the American Academy of Pediatrics, the American Academy of Ophthalmology, and the American Optometric Association. However, it is fair to say that it does enjoy recognition amongst a respected body of medical opinion, and has been recognised in American States and Australia, and has been studied extensively in leading research centres, including the former Applied Psychology Unit, Cambridge, UK. The Scottish Parliament has also funded a research and treatment centre at the Glasgow Caledonian University.

http://en.wikipedia.org/wiki/Scotopi...ivity_Syndrome

Research relating to the use of Irlen tinted lenses and coloured overlays for underachieves is reviewed Many of the studies were not published in refereed journals and were methodologically poor. The weaknesses of the Irlen argument arc discussed, including the absence of evidence to support the claims that these tints need to he uniquely prescribed and manufactured. Syntonics is another form of visual colour therapy that has been applied to those with a learning disability. Research on this is reviewed, and is also shown lo have procedural irregularities which preclude firm conclusions. Owing to the poor quality of much of this research the claims of the protagonists of these therapies cannot be proved or disproved. A proposed new therapy is normally preceded by a valid theoretical hypothesis: this has been lacking in the present topic. Recently, a feasible explanation has been proposed in terms of ‘pattern glare’ resulting from mild hypersensitivity to epileptogenic patterns. This, together with potential alternative theories, is discussed, In the conclusion of this review, advice is given for eye-care practitioners who may be consulted on these therapies.

http://www.blackwell-synergy.com/doi...ournalCode=opo

[skillefer]

Hmmmmm....Scotopic Sensitivity Syndrome.....wow....haven't heard that phrase in about 10 years. It's not necessarily a new idea. The idea is that some people's brains are more strongly influenced by some colors of light. I hope it works CJR. In kids with learning disabilities, it worked for some but not for all.

As for the Irlen treatments lenses working for seizures....it might for some. If for no other reason than that it would change how fluorescent lights are perceived by the brain. But then fluorescent lights are classic triggers for people who are photosensitive. And to think of how many businesses and schools have them is amazing.

[CJR]

I understand that Irlen therapy had limited results and I wouldn't consider my daughter to need that therapy for any of the reasons listed except Epilepsy. However, I don't think that what our neurologist has recommended is actually the Irlen therapy. Instead I believe that she is looking into getting a pair of Z1 lenses. These lenses have been tested and have had a good success rate. I read this in Epilepsia dated March 06:

Six hundred ten epilepsy patients were tested. Z1 lenses made PPR disappear in 463 (75.9%) patients, and PPR was considerably reduced in an additional 109 (17.9%) of them. PPR remained unchanged only in the remaining 38 (6.2%) patients. The response of PPR to Z1 lenses was not significantly influenced by the patients' age, sex, or type of epilepsy. No difference was found between pharmacologically treated and untreated patients.

That is impressive to me. Especially since I don't have to stop her drug treatments to increase the chances of the lenses being effective. I think it's worth a try. What do we have to lose by giving it a try? Right now, she still has upwards of 5 seizures a day due to photosensitivity. On a really sunny day she can have 5 in an hour! She would like to "see" a pair of these lenses but I can't find any photos of the lenses themselves so...she'll have to patient.