Hi all, my friend has a cute little three year old boy, who was just recently diagnosed with Epilepsy. The doctors haven't pinpointed exactly what seizures he has other than abscent and another (I don't know the name off hand, but it is the one that he will go limp completely with slight jerking of the body - these ones do not occur very often). She has been having issues with the main pediatric neurologist because he supposedly doesn't give her any type of information when she sees him *at all*. She tells me that he didn't even tell her the side effects of the Depakote that he prescribed. I find it odd that a doctor doesn't do this, so I will assume that she is telling the truth.
She has put in with Tricare for a second opinion and was referred to UNC, the closest pediatric neurologist other than the one she is currently seeing. Here is what she posted on Facebook and has been a big problem for two months now for her little guy:
LOOKING FOR ADVICE AND/OR OPINIONS
Brian is still complaining of headaches almost daily and several times a day, even to the point of sobbing bc of the pain. Can't get into UNC to see a DR till March and no other Drs seems concerned. The motrin which he can only take 3X a week. And that's the only thing he can take per Dr's orders doesnt help. So what do I do? March 22 is a month away and I can't just sit here and watch him suffer!
Hi. My 10 yr old son has epilepsy. I will admit many of these neurologists are NOT good at explaning anything, you basically have to pry information out of them. But if her child is having headaches so bad that she's crying...she needs to insist she needs an appointment now- in my opinion.
My husband has epilepsy and has grand mal or tonic clonic seizures. He always has a headache for a day or two after having this type of a seizure. How often is Brian having seizures?
Ask about the Motrin 3xs per week - normally Motrin is once every 8 hours or no more than 3xs per day! It could be different because of possible interaction with the depakote but I really don't know. My husband takes another drug.
It sounds like she needs to write some questions down before seeing the next neurologist. I would call the current neurologist and explain the headaches and demand something - now. I also feel like we don't get a lot of answers but it depends on the questions. We don't know what causes epilepsy, we don't know why someone has it, we don't know how to predict it, so there are a lot of unknowns with this disease.
I would also suggest she find an epilepsy support group and join asap.
C.
My cousin (who is now 41) has seizures as a 4 year old. My grandmother was raising him and took him to see a chiropractor weekly for awhile and took him off of red food dyes. Hss seizures went away and never came back.
I've had adult friends do the same thing and they are able to decrease their Depakote, Lamictal,etc. by at least 1/2. One of my friend's chiros told her to take Folic Acid, since the seizure meds decrease the folic acid levels that are essential in the proper functioning of the brain and nervous system, and deficiencies of folic acid have been implicated in chronic depression and other mental disorders.
Folic acid helps the body to make RNA and DNA, the body’s genetic material that contains all the code for new cells. Because of this role, deficiencies of folic acid can have far-reaching effects, and is especially important during pregnancy, infancy and adolescence when the body is growing rapidly. Folic acid also is used in creating red blood cells and regulating the use of iron by the body. It also works closely with vitamins B6 and B12 to help control levels of the amino acid, homocysteine. Researchers suspect that elevated levels of homocysteine may be implicated in a number of illnesses and conditions, including come cancers, heart disease, diabetes and depression.
My kids gets adjusted by our chiropractor every 2-3 months and I've been adjusted since I was 2 days old. I don't suffer from headaches, but when I have one, I will go and get adjusted and it's gone within 15 minutes. When I've had chemicals (inhaled from construction) or eaten foods with chemicals in them (MSG, artifical sweeteners) my occiput "goes out" and my headache is nothing short of a migraine, so be sure they check that if you decide to take him. Make sure the chiro adjusts the occiput....many do not. You can adjust the neck, which helps, but that occiput is the icing on the cake....completely clears it up. Find someone who feels comfortable adjusting kids.
Sorry to hear. Get a book from the library or look up acupressure points on the internet. I've also had some good results with Nikken magnets (casual necklaces or spot magnets). Hydration is also key.
Another thing I've seen help migraine headaches is all natural and activates an NRF2 pathway that regulates over 3000 survival genes in your DNA. Some of the key ones are increasing antioxidant enzymes which reduces oxidative stress (free radical damage) in the body by 40-70% in 30 days. Over 200 chronic diseases are linked to increased oxidative stress which gets higher the older we get. It reduces cellular aging 40%. One of the key thing for neurological issues in the 300% increase in glutathione which can cross into the brain. It also works on the genes that control inflammation and scar tissue - both also key in disease. There are 10 published peer reviewed studies. I have lots of additional info I can share with you if you like. Watch an ABC Prime Time Live clip at www.abcliveit.com. To order it wholesale, enroll at www.lifevantage.com/livinghealthiernow. Feel free to email me back and I'll get you the info you need or connect his dr with other MDs.
My dog was having seizures and I started him on the Protandim. While I'm not around him 24/7, it is now 3 months since I've seen a seizure. The first seizure I saw was an 8 out of 10. The frequency and intensity of the seizures has been decreasing. His last seizure was just tremors. I've also been giving him an Omega 3 for brain health. Probiotics are another good thing to help him as well and all natural.
Let me know if I can get you any additional info.
Hoping for the best for him. S.
First, Yes, I am familiar with doctors who are arrogant, and really tell you nothing except your "marching orders" such as "Give depakote." After all, we are just stupid little folks with no brain. And they are busy and important and insurance does not pay them to sit around and "chat."
However, there are ways to improve that situation, such as write down questions in advance and be sure to ask them. Take a friend or family member with you to act as an advocate (unfortunately, it may be that a MALE accompanying you can elicit better treatment from some of these arrogant doctors). Another thing we can do is CALL the office with the questions. Then, of course, is the Internet with the medication sites. Many will let you pick "patient" or "physician" and clicking on the "physician" tab can get you the full information about the medication (at least as "full" as the company wishes to reveal. For the real scoop, just do a search on the med and "side-effects" and see what the masses of people taking it are really experiencing. Oh and also be sure to search on the med name and "withdrawal" as well.
Next is what to do about the headaches. Oh, poor baby!!! :(
Some things may help are cold cloths. I don't know if there is CoQ10 for toddlers. Sometimes a dietary change can help such as low carb and/or grain-free (sometimes dairy-free as well). She may want to consult with an Integrative MD who would know about natural tricks of the trade.
For now, she MUST CAL the doctor and make a pest of herself if need be. The boy is in pain. Take him to the ER if necessary!
My younger daughter used to have severe migraines starting from age 2. The pediatrician let her have pediatric liquid Advil (at that time it was prescription).
I really feel for that little boy and his mom.
Can't they see another doctor who is more interested in the patient? I found several links to that medication and it's a dangerous drug with law suits, I think they all have law suits though. I would check it out and get another opinion from someone who cares. It breaks my heart to think of this little boy sobbing from pain. Maybe he needs another drug instead of this one.
