Medication-induced seizures in Daughter with DS

[Nakamova]

In this case, "chelated" means that the minerals are attached to amino acids, so they are in a form that is more easily digested and absorbed by the body. Non-chelated supplements are more likely to (at least partially) end up in the kidneys pass through the system undigested.

[Marlene]

Nsakamova: Thank you. I kept seeing 'chelated' but did not know what it meant. I looked it up but still did not understand how chelated differed from any other mag. supplement. If we can keep daughter off antibiotics long enough, we're hoping that all of the involuntary movement will disappear again. After she was withdrawn from Ativan, all of the involuntary movements left, then, when she had to take so much Levaquin, they returned. She has been on one or another antibiotic practically ever since May, and her system has not had time to recover. Thanks again for the information.

[Nakamova]

I hope she can stay antibiotic-free then. Can she take probiotics (like certain yogurts)? They can help re-balance the stomach after antibiotics have thrown it off.

[Marlene]

Nakamova: She has yogurt everyday, Dannon all-natural, to try to replenish her natural flora. We've been fighting yeast due to all the antibiotics she had for the pneumonia. Since we got home from the seven weeks stay in the hospital she has had to take two more rounds of antibiotics due to a bladder issue and, most recently, an upper respiratory infection. She finished the latest on Friday a.m., so we're hoping the 'jerks' will soon disappear. She had two (what looked like) t/cs while she was on the last one, Omnicef. The movements she has had since she was withdrawn from Ativan have all occurred when she has had to take antibiotics. Prior to the reaction to the medication in May, which caused the anaphylactic pneumonia, she had not had any movement after the Ativan left her system. The reason I write (what looked like t/c) is because the neurologist said they are not true 'seizure-seizures' because they were caused by a medication, they just look like it. If they are not true seizures, I never want to see a 'true seizure.' He has never witnessed her have one of these things, but because nothing showed up on the eegs, or ct-scans he says that. I don't have a lot of confidence in the medical professions knowledge of seizure, particularly in persons who have DS. Only recently (2007) has the research been completed that proved that persons with DS already have 30% more of certain brain chemicals than they have receptors to handle. GABA is one of those chemicals and it is the reason she developed all the neurologist-muscular issues and the involuntary movement. Sorry I got off subject. A friend suggested a probiotic, but I'm hesitant to start her on anything she hasn't had before. You can tell I'm not very knowledgeable, but I do want to learn more and that is the reason I got on this site. I believe that persons who are actually coping with epilepsy/seizures know more than the med. pros.. Thanks.

[Endless]

Marlene,

I'm so sorry your daughter is going through this. It's so hard.

Probably part of the reason your doctor said what he did is that generalized (whole brain) seizures, like a tonic-clonic (convulsive), would show up on an EEG. It's the partial seizures that involve just part of the brain that often don't.

Sometimes diagnosis based on reading an EEG is a subjective thing. There's software that reads the EEG and identifies seizures, but it's still up to the neurologist to look at it and identify what really is a seizure and what isn't. The software is often wrong.

For that reason it might be good to get a second opinion. When a different doctor looks at her EEG, you might get a different answer. Your daughter has so much going on, it might be worth seeing an epileptologist (a seizure specialist). I don't know where you live, but there might be a regional epilepsy center in your area. Here's a link with the list of centers:

www.naec-epilepsy.org

I'm thinking positive thoughts for you and your little girl.

[Marlene]

Endless: Thank you. Heather has been seen by a neurologist at Vanderbilt, but that was prior to learning what had caused the involuntary mvts/seizure activity. The reason that persons with DS respond differently to benzodiazepines (which cause more gaba action in the brain) is because they are born with 30% more gaba in their brains than they have gaba receptors to handle. A gene on the extra chromosome causes the 30% more gaba situation. In the DS brain, the gaba action created by benzos causes an ion channel to remain open too long, which allows too many calcium ions to enter the channel, which in turn causes too much electrical activity and seizure activity. The extra gaba has recently also been identified as a main cause of their intellectual disability. Gaba, which is our brain's natural tranquilizer is supplied too abundantly in the DS brain. The really sad part for daughter is that she was making good recovery from the benzos, having no involuntary movements, and then she was hit with the reaction to Bactrim and the subsequent antibiotic therapy. The antibiotics interfere with her cns. We are praying that once the residual effects of the antibiotics leave, that she will return to where she was the first of May, before she got sick. The jerks keep her in a high-anxiety state, and because of her reaction to the benzos, no doctor will prescribe a tranquilizer for her. They are reluctant to prescribe for her at all, but in the case of infection, such as the recent upper-respiratory system, they have no choice but to try something. While she was taking the Omnicef, she had two what look like t/c's, and she is still jerking. We try to explain to her about the medication, and before all of this happened she would have been able to understand. She was high-functioning, read on a 6th grade lever, did fundamental math. Really the only thing we had to do for her was to drive her where she needed or wanted to go, and the fella who teaches drivers' ed here tried to get me to let him teach her to drive. I've had too many close calls driving myself, and I was not certain that she would react quickly enough in a tight spot, so she did not learn to drive in town. She drove the truck on the farm. If the jerks do not leave after a reasonable amount to time, time for the cns to settle back down, then we will make an appt. with the epilepsy dept. at Vandy. Thank you so much for the link to the list.

[RobinN]

I too would suggest a probiotic. You will never replenish the good bacteria with yogurt. You would have to eat bucket loads.

We have seen miraculous results from using probiotics (Natren - Healthy Trinity) My son's vitiligo (lack of pigment in skin cells), has returned to normal.

[Marlene]

Robin: My recent attempt at giving Heather ground flaxseed ended up giving her abdominal cramps and diarrhea. The probiotic has now been suggested by several people, so I am going to give it a try. Thanks.

[Marlene]

Robin: I read somewhere here your belief that blood-sugar plays a significant part in seizure. Early a.m. is when Heather has most of these 'jerks,' so after reading your comments, I gave her orange juice yesterday a.m. and again this a.m. On both days, the jerks stopped within minutes. My mom had diabetes, what her dr. called old-age onset, and when she felt weak and that her blood sugar was too low, she would ask me to get her a little oj. We went to Heather's pc dr. yesterday and he said the probiotics would be a good try for the yeast, and also to try the magnesium supplement. He said 500mg.. I'm overwhelmed at all the different varieties of Mag. Supplement, oxide, sulfate, sprinkles, etc.. Which one is your daughter taking? One of our disadvantages is we are a little over two hours from Nashville, the closest Whole Foods store and the WF Body Shop are located there. We're in W. Ky..

[RobinN]

The one I have settled on (and I am not receiving any payback for suggesting this) is made by Jigsaw. I buy the SR. I just received an email today that they are having a sale on their products.

The probiotic we have been using is Natren: Healthy Trinity
Though I do see that Jigsaw also carries a probiotic, so that might be useful if you want to receive the 30% off. I have not compared the micro-organisms to see if one is better.

Both can be purchased online.

Dr. Blaylock says that early morning seizures are OFTEN due to hypoglycemia. The liver does an awful lot of its work while we sleep. I do suggest that you work on ways to improve live function and insulin balance, and the only way I know to do this is to change nutritional choices.

[Marlene]

Robin,
I went to the Jigsaw site. How large are the tablets? Heather cannot swallow a very large tablet, and sice these are sr they cannot be crushed. We went thru a mucinex er event when she was in the hospital. The nice nurse crushed the pills and all the guifinesin hit her system at once. Two big seizures within four hours. The dr said never to crush anything with initials following the name. Thanks, Marlene