Monday, May 9, 2011

Q & A: Ginkgo biloba and eye surgery

Since there were a few questions, I’ll put them here and answer them openly in case anyone else was wondering… (Oh, and the sale is even BETTER now… if you’re still wanting to pick up some GB for your house. It’s not just for kids with DS, lots of adults use it for memory and sharpness. I keep thinking I should use it myself. We just recently started M on it, as it is said to help with dizziness/vertigo, which plagues him occasionally. And it seems to have helped. We'll see how it goes as we move forward.)

Regarding ginkgo--
My biggest question..how is this pronounced? :) geeng-ko bill-o-buh is how I understand it to be. Other opinions welcome.

How much do you give Braska? Braska gets just about 0.3 mL each day of the liquid. The liquid we use is 500 mg per mL. Some of the popular brands are only 80 mg per mL. The dosing instructions in general, as found here, are for 5.5 mg per kg (2.2 lbs). For Braska that would be about 60 mg, which would be just a few drops of our brand of liquid extract. I’ll be honest, we give her a bit more than that equation recommends. At first it was simply because I didn’t understand the different strengths of the various brands, and then it was because she does really well on the dose she takes, so I’m not going to mess with it much. There are a lot of different thoughts among families who use it and developmental pediatricians about how much is really the ideal dose. Many recommend more mg than we use. I have heard many say that it’s more accurate to use a tablet version for milligram purposes, but with the g-tube situation in our house, liquid always works better. The bottom line for me is that it is not something that is dangerous and must be taken to the exact mg amount, so I’m comfortable that we’re within the proper range.

ETA: My friend Tricia and I spent a while last week looking over links and Googling dosing and strengths of different types. We came up with some good info and some residual confusion. But I feel comfortable after reading quite a few things that we're within an acceptable range for Braska.

Just out of curiosity, did you tell her teachers what was likely causing the difference? If so, what was their response? After we had received reactions from teachers, therapists, and other caregivers, I did talk with most of them about it. (I can’t remember which conversations I had with whom back then, very honestly.) But I do believe I let her teachers know that we had started this and that I felt that was helping with her ability to cooperate and pay better attention, participate better in group times at school, etc. I can’t know for sure, of course, which elements were due to GB, but I do know that the days she seems “off” or “out of it” a little bit, as the teachers or therapists might mention when I pick her up, those days are often days that she didn’t get her dose in the morning or even for two days in a row. We try hard not to let that happen, but life interrupts my plans sometimes. I don’t remember anyone have anything negative to say about her taking it. The consensus seems to be that if it is helping her, they are all for it!

The biggest thing holding me back has been the issues I have heard about sedation/blood issues and ginkgo...did you have any concerns about that?
I’m assuming you mean the issue with the blood thinning quality that can be part of ginkgo’s effects. I am not worried about this, specifically. Most everything I can find on this particular element of GB simply states that as long as the GB is stopped 36 to 48 hours before a sedation or procedure, and started at least 24 hours following the procedure, there are no problems. Braska will be having her eye surgery in a couple weeks, and we’ll be stopping her GB a couple days before and restarting it probably 2 days after.

Also, there were some questions asked of me about what our doctors felt about it. Our pediatrician generally has the “if it doesn’t hurt, go ahead” philosophy, and though I don’t think she is necessarily recommending GB to her toddlers, she didn’t have any problem with us doing it. The doctor at the DS Center at StL Children’s said she hadn’t seen enough evidence to really solidify GB’s positive effects in her mind, but that she had known of many families who use it and have reported great improvements.

I’ll just close this part by saying that there are a lot of other supplements and formulas out there that people swear by. That’s ok, but this is the only one I’m currently interested in. I’ve thought a little about Longvida Curcumin lately, read some interesting things about it, but for now, we’ll stick with our current regimen.

Regarding eye surgery--
How did they initially diagnose this? We have been seeing vision specialists, both of the therapeutic and medical varieties, since Braska was just a few months old. She has had the tilt up, with her chin in the air and looking down her nose at things, for about 3 years, I’d say, with some less frequent periods of it even before that. We’ve seen the pediatric ophthalmologist at least every 6 months since we started with them at Braska’s 6-month check in May 2007. The combination of her crossing and her strange head positions have been discussed at almost every visit.

Initially, the crossing was determined to just be a symptom of her farsightedness, as she struggled to focus on closer things and then crossed from the difficulty. This was when glasses were prescribed for her at 12 months old. It did correct the crossing for a while, but when she was about 2 1/2, the crossing was really seeming to come back in the left eye. Even with her glasses, that eye would sometimes drift inward.

As the head posturing got to be more consistent and more annoying, quite honestly (to me, not to her), we brought it up again with the eye team, and they really felt like it was not visual in nature for a while, probably a year. They looked at many possibilities and examined her several times, but everything pointed to her being able to see ok. We had her, in turn, checked out by PT and OT for this, asking her therapists to see if they thought it was “stacking” or a strength issue that caused her to slouch and rest her head on her upper back. After looking at it from several different angles, everyone felt like the source had to be a vision issue.

So this past year I pushed a little harder with the eye center, asking for more research to be done to look at possible reasons for this. The hang up kept coming in that Braska presented differently every time they would check her eyes. One time they would see this, the next time they would see that. We were told that if it were one or the other, it could be repaired, but they didn’t want to aggravate one by working on the other. Etc, etc, etc. It really became frustrating.

After a few diagnostic tests, including a Cardiff acuity test and some limited video recording of her eyes to study the patterns of the nystagmus, it was finally determined that this Manifest Latent Nystagmus was her proper diagnosis, along with the esotropia (turning inward) strabismus. Part of the element of the MLN is that it looks different at times, so it caused them to be “stumped” (their word) for a while in firming up a diagnosis.

If you’re looking at Braska’s symptoms and seeing something familiar at your house, I’d definitely bring up these diagnoses and see if maybe they fit. I’m NOT saying that they will, but these things are rare enough that it might have been a while since the opth has seen a case, I suppose.

…our dr. is doing some research, but I'm thinking I'm sending her some info on this diagnosis as it seems to be very familiar...do you have any other sources or websites you have found useful? I don’t have very many websites, honestly, to refer you to specifically, but here’s a few I found that refer to the Manifest Latent Nystagmus and the head tilt element. Since we now believe the tilt to the side to be due to the strabismus and the tilt up (chin in the air) to be due to the MLN, there are two separate lines of both diagnosis and treatment for each individually. Our doctor does think that the first surgery may help the second problem as well, but he feels it will not make full correction. So we’ll probably be looking at a second procedure in the early fall.

MedHelp topic
AllAboutVision
American Optometric Association

Feel free to ask any other questions you might have… it is amazing how much we can learn from each other as we all encounter new challenges.

6 comments:

  1. My head is spinning with all this information. Probably easy peasy for you. So glad all this medical technology is available. But...

    It seems so much for such a little girl.

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  2. You're a gem!! Thanks for the additional information!! So very interesting! Got my wheels turning! :)

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  3. Thanks for the good summaries. Excuse me, I need to go take my ginkgo...

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  4. I've found the dosing for liquid ginkgo to be sooo confusing. It is different for each brand. What is says on the bottle can be different than how much active gingko it contains. Your post spurred me to do a little more digging and I realized that I've been giving Goldie less than I thought. I think it's time fore me start looking into the powdered version.

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  5. I haven't had the time to keep up on blogs for a while. Looks like I have some catching up to do! Ginko and surgery, hmmm. Thinking of you guys.
    ---Jen

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  6. Thanks for posting the link/info about GB. I bought a bottle of liquid BG a couple of months ago, fully intending to start Kayla on (I'm really hoping it will help with her attention span and concentration) but didn't really find a clear answer as to the dosing - hope I can figure it out with what you posted.

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