Tuesday, December 22, 2009

Ginkgo Biloba FAQ

Ginkgo Biloba is frequently given to children with DS. Since it is fairly new to most families who have children with Down syndrome, it was suggested that I put some of the frequently asked questions about it up. That way everyone has one place they can go to find the answers and have one link to give to those who have questions. So, here it goes:

"What is the recommended dosage of Ginkgo Biloba?"

The recommended dosage is 5.5mgs per kilogram of body weight after 3 years of age. A kilogram is 2.2lbs.

"What form can it be given in?"

There are both liquid forms & pill forms. Depending on your child's age & ability to swallow vitamins, would decide which would be easiest to use.

"What are the best brands of Ginkgo Biloba to give?"

The best pill brand would be Nature's Way Ginkgold. If your child cannot swallow pills, you'll want to use a liquid form. It is an absolute pain to crush these pills. Ginkgold can be bought through International Nutrition. It should be available at a health food store as well.

The best liquid brand is Honeycombs Liquid Alcohol Free Ginkgo Biloba. From what I hear, this one does not taste bad! International Nutrition also carries this Ginkgo. If you order directly from Honeycombs, you can order a large bottle. But, it is quite pricey that way, so we've chosen just to buy it through INI.

"What is the best time to give Ginkgo?"

It is recommended to give Ginkgo Biloba in the morning. Give the full dose at once.

"What age can I start my child on Ginkgo Biloba?"

Trisomy 21 Research Foundation does not recommend starting GB before 3 years of age, due to a possible risk of seizures. But, there are many families who have started GB on their children who are well under 3 years old with no ill effects. Ultimately it is up to the parents and if they feel it is safe for their young child. Just make sure you do your research and make sure you are convinced it is the right thing to do at that time.

We chose to wait until my brother was over 3 years old before we even started giving him the full recommended dosage. He took some Ginkgo Biloba when he was under 3, but it was not the full dosage. We will be starting him on the full recommended dosage soon and he is almost 5 years old.

"Why Ginkgo Biloba?"

About 5 years ago, Stanford University a big problem in Down syndrome. GABA receptor, an inhibitor, was ON continuously in individuals with Down syndrome. What does this do? It doesn't allow the nerves in the memory and learning area of the brain to work properly or "fire." In other words, the nerves weren't working. To balance this problem with the GABA receptor, a GABA antagonist was used to turn it down. Because Ginkgo Biloba is a GABA antagonist, it is being used in hopes that it will turn down the GABA receptor. Ginkgo has been used for a very long time and is quite safe.

Things to consider when buying Ginkgo Biloba:

There was one thing mentioned on a DS listserv I'm on, that I thought would be good to add to the FAQ here.

When finding a good Ginkgo Biloba supplement you want to make sure of a few things:
1) low levels of ginkgolic acid
2) high levels of bilobalide
3) and that the product is standardized and not substandard

Ginkgolic acid is an undesirable part of GB, as some people can be allergic to that part. The above two products I mentioned are low in Ginkgolic acid.

Any other questions? Feel free to leave a comment here or send me an email (qf @ gotdownsyndrome . net - remove spaces) and I will try to add them onto this post.


Monday, December 21, 2009

Speech Appointment

This past Thursday was Osiyyah's monthly speech therapy appointment at Tulsa Sunshine Center. It's a new pediatric therapy building that has recently opened. They have been fantastic so far!

It had been a few months since we had seen Kim T. We had been been seeing another ST there (who is also great!), and Kim mentioned that his oral muscles are looking/feeling great. I guess we're doing something right ;).

Osiyyah made a big accomplishment while we were at therapy this past week. He held a bite block in his mouth on each side for 20 seconds. That's phenomenal! It's Bite Block #4, which is thicker than the two bite blocks I have. I only had 2 & 3, so I'm glad we were able to use a different level. Kim let us borrow their Bite block set, so hopefully we can work him through them over the next month before we see her again :)! We did the bite block again this morning and sure enough, he held it there for 20 seconds. 4 times total (2x per side). Yes, praise the Lord!

Kim gave me several other ideas and things to do with Osiyyah too, so it was a very good visit. She got to do more with him too, which was nice. The last time we saw her, she was still doing the evalution with him, so she wasn't able to work with him much.

Things like . . .

Blowing bubbles:
Getting him to say certain words:

The bite blocks!
(me showing Kim how I do it at home ;))
And blowing horns:


Wednesday, December 16, 2009

To Those Using Longvida Curcumin

I'd like to compile some data & information about those who are using Longvida Curcumin and your experience with it. If anyone using LC could please email me *PRIVATELY* that would be great. You can email me either at feargod @ atruechurch . info (remove spaces) or qf @ gotdownsyndrome . net (remove spaces).

I'd like to know:

*The dosage you are using

*Age & weight of your child

*How long you've been using it

*How long you stayed at a certain dose before increasing (if you did that)

*Any changes or lack of changes you've seen

*At what dosage you started to see changes, if you have seen any changes

*And any other experiences you may have had

*Feel free to email me also if you have just started using LC, since it would at least be nice to know you're using it ;).

I am hoping to get some data compiled over the next couple weeks. It would be nice to know and have in one spot how many people (at least on these lists ;)) are using it and what their experiences have been.

Since this is all so new, all the data & information we can get is so valuable! I'd like to compile this and then put it up on our blog or website. Your name can be kept confidential when I put the data together.

Feel free to forward this to anyone you know who may be using LC or any lists/boards who have families using it.

If someone would rather give me a call, let me know and I can give you my phone number. Or vice-versa.



Friday, December 11, 2009

M-O-M . . . A Speech Journey

Speech can be a long hard road for some children. Osiyyah's one of the kids who's weak area is speech. It always has been. He's excelled in almost every other area, but the speech is just slow in coming.

When he was a year or so old, we got some of Sara Rosenfeld-Johnson's material and tools to try to implement some of her work. We did what we could, but it wasn't easy to figure out exactly what Osiyyah needed. We started the straw hiearchy and the horn hiearchy, but more complex things like jaw instability . . . yeah, that took me a couple years to figure out.

Earlier this year, I set out on a quest to study as much as I could (we had 3 books from TalkTools, so I just needed to READ them!) and try to implement whatever oral placement therapy techniques we could.

I read through Sara's books, but the one book that solidifed everything in my mind and made me realize where we needed to start with Osiyyah's speech was the Jaw book. That book was the most valuable resource I read on speech ever. Everything was starting to make sense and it didn't seem like I had such a huge cloud of "what to do's?" hanging over me anymore.

Since reading Sara's books and emailing back & forth with Renee Hill, one of Sara's collegues, I feel we've been able to adequately start to address Osiyyah's jaw instability & weak oral muscles.

So, around February-April of this year we really started to work hard on Osiyyah's speech therapy here at home. On a typical day, I do 30-40 minutes of oral motor & speech therapy with Osiyyah. We do see a speech therapist once a month and she gives us ideas on what more we can do for Osiyyah.

We work on blowing bubbles, blowing horn #2, holding a popsicle stick (with a penny on each end) between his lips, using the chewy tube (15 chews per side), bite blocks and a few other excercises that correspond with all of those.

The consistency of working with Osiyyah on his oral motor & speech has started to pay off. It's taken a few months. There have been times of frustration, tears, triumph & joy.

Frustation & tears when I realized *how much* work he needed. He couldn't even bite & hold for a second on the bite block. It felt, for a moment, that it would take forever! But, thankfully, with much persistence & consistency, just a few weeks later he was doing bite & hold on the bite block for several seconds per side. Triumph & joy then! To see before my eyes, what I had read in the Jaw book, actually happen, was simply exciting.

Besides Osiyyah's jaw instability, he leaves off the ending consonant of most words, whether it's a sound he can say or not. Over the months we've worked hard on this also. One key word that I will use as an example here is "Mom." He always and only called Mom "Ma" because he could not get the ending sound on that word. A couple months ago, he started getting that final "M" sound at the end. And shortly thereafter, started using it in his everyday life & conversations.

"M-O-M." The full word. With every sound said correctly. And perfectly clear. Everytime I hear him say "MOM", I am so thankful. God used our diligence in oral motor therapy, speech therapy & Longvida Curcumin to help Osiyyah talk. Praise the Lord!

I never knew if we would hear Osiyyah say the full word "Mom." I was happy with him saying "Ma" everytime he called for mom. But, to hear him say "Mom" all day long is amazing.


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