tag:blogger.com,1999:blog-62031789964803726492024-03-13T09:55:06.399-07:00Myles and the Mighty Omegask.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-6203178996480372649.post-80630806715650139982014-01-09T08:39:00.000-08:002014-01-09T08:39:07.036-08:00Echolocation!!!<div class="userContentWrapper aboveUnitContent" data-ft="{"tn":"K"}">
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On Saturday we finished our first training sessions for echolocation with Brian Bushway from <a data-hovercard="/ajax/hovercard/page.php?id=287033672272&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/worldaccessfortheblind">World Access for the Blind</a>! Brian travels around the country helping other visually impaired people learn to use sound as a tool to navigate. <br /> <br /> Brian came<span class="text_exposed_show"> to Georgia from LA, to work with my grandson Myles and two of his friends from the Center for the Visually Impaired. <a href="http://www.cviga.org/" rel="nofollow nofollow" target="_blank">http://www.cviga.org/</a><br /> <br />
The boys did so well. Each of them made real progress during the two
days that Brian worked with them. Brian explained to us at dinner after
the first session, that the brain actually adapts and functions as if it
is receiving visual information from the eyes by using sound instead,
so you really can "see" with your ears. Testing shows that the brain can
use sound information to produce a very similar neurological response
when compared to a response to visual information. This neurological
response produces images in the brain of what your ears are "seeing". So
you can actually "see" with your ears that there is a tree, a car, or a
building. Amazing right? By the end of the day yesterday he had the
boys walking complex obstacle courses, finding hallways and alcoves,
having foam sword fights and finding a bowl or tray in front of them or
beside them just by using sound. <br /> <br /> This article tells a little about it and about Brian. There's a really cute video too. <a href="http://www.gainesvilletimes.com/section/6/article/93702/#.UsmOQubbrkU.facebook" rel="nofollow nofollow" target="_blank">http://www.gainesvilletimes.com/section/6/article/93702/#.UsmOQubbrkU.facebook</a> <br /> <br />
It was a wonderful experience. Brian is such a great role model for the
boys. He taught us all so much in such a short amount of time. We are
exhausted but so grateful. Myles is already sad that he is gone and says
he misses "his" Brian. We can't wait until he comes back this summer. I
think it's going to open up a whole new world of possibilities for the
boys. I could already see more confidence in the way that they were
traveling by the time we were finished yesterday.</span><img alt="Boys learn sensory technique to gain ability to navigate" src="http://media.morristechnology.com/mediafilesvr/upload/gainesville/article/2014/01/03/0104echo4.jpg" style="width: 100%;" /></div>
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k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-14102365324328356292013-03-23T10:30:00.001-07:002013-03-30T08:12:20.494-07:00Myles's Circus Experience/Circus touch tour<a href="http://www.myfoxatlanta.com/video?autoStart=true&topVideoCatNo=default&clipId=8536111#.UU3hOEP9pLc.blogger">Circus touch tour</a><br />
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I wanted to share this because it was so special. Ringling Bros. Circus gave Myles's preschool class from the Center for the Visually Impaired tickets to the show on March 1st. I just found this short video that was on the news. The seats were so close to the floor, it was fabulous. After the show they got to have a private hands on show. The elephant played the harmonica and Myles did his very best to slip under the rope and get to the elephant. I had to hold him back. He had such a great time and the people from the circus were so incredibly patient and kind. It really was amazing. I wish that I'd gotten more pictures, but all I had was the phone camera and a lot of them just didn't come out. </div>
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<br />k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-16595703700439458592010-06-13T18:26:00.000-07:002011-01-03T18:52:05.999-08:00Progress!!!!!More progress in the treatment for Lebers. This is not the mutation that Myles has, but progress in the treatment of the disease is wonderful and could lead to a treatment for his mutation some day<qtlend></qtlend>. <br />
<div class="blue22bold" style="margin-bottom: 4px;"></div><div class="blue22bold" style="margin-bottom: 4px;"></div><div class="blue22bold" style="color: #3d85c6; margin-bottom: 4px;">Oral medication for Leber's congenital amaurosis demonstrates biological signal in early study</div><div id="articleBar" style="color: #3d85c6;"><table border="0" style="width: 565px;"><tbody>
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</tbody></table></div><div style="color: #3d85c6;">VANCOUVER, British Columbia — Three patients enrolled in a phase 1b proof of concept study for an oral medication therapy for <a href="http://www.osnsupersite.com/searchResults.aspx?cx=&q=%22Leber%27s+congenital+amaurosis%22&client=default_frontend&output=xml_no_dtd&proxystylesheet=default_frontend&filter=0&sort=date&sa.x=0&sa.y=0&sa=Search&siteurl=www.osnsupersite.com%252Fview.aspx%253Frid%253D63440&site=Srch_OSN-SS" target="_new">Leber's congenital amaurosis</a> had vision gains and reported improvements in functional vision after 7 days of treatment.</div><div style="color: #3d85c6;">According to a press release from QLT announcing the interim study results, the three patients, age 10, 12 and 38 years, had rapid improvement in best corrected visual acuity, Goldmann <a href="http://www.osnsupersite.com/searchResults.aspx?cx=&q=%22visual+field+testing%22&client=default_frontend&output=xml_no_dtd&proxystylesheet=default_frontend&filter=0&sort=date&sa.x=0&sa.y=0&sa=Search&siteurl=www.osnsupersite.com%252Fview.aspx%253Frid%253D63440&site=Srch_OSN-SS" target="_new">visual field testing</a> and/or retinal sensitivity after initiating therapy with QLT091001, a synthetic retinoid replacement therapy. Improvements were most pronounced in younger patients, and results continued to improve over time, up to 4 months, the release said.</div><div style="color: #3d85c6;">All three patients share a common genetic mutation in lecithin:retinol acyltransferase. Future enrollment will include patients with genetic mutations at RPE65, according to the release. The study drug is a synthetic <a href="http://www.osnsupersite.com/searchResults.aspx?cx=&q=%22retinoid+replacement%22&client=default_frontend&output=xml_no_dtd&proxystylesheet=default_frontend&filter=0&sort=date&sa.x=0&sa.y=0&sa=Search&siteurl=www.osnsupersite.com%2FsearchResults.aspx%3Fq%3D%2522lecithin%253Aretinal%2Bacyltransferase%2522%26spell%3D1%26site%3DSrch_OSN-SS%26client%3Ddefault_frontend%26access%3Dp%26ie%3DUTF-8%26output%3Dxml_no_dtd%26proxystylesheet%3Ddefault_frontend&site=Srch_OSN-SS" target="_new">retinoid replacement</a> for 11-cis-retinal.</div><span style="color: #3d85c6;">"These preliminary results are very exciting, are better than expected, and provide a measure of hope that a treatment might be developed for this devastating disease," Robert K. Koenekoop, MD, PhD, the trial's principal investigator, said in the release.</span><br />
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<iframe id="qtlframe" src="" style="background-color: white; border: 1px solid rgb(236, 236, 236); display: none;"></iframe></qtlbar>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-19245228844544547132010-04-28T14:17:00.000-07:002010-04-28T14:17:31.220-07:00New pics<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizK4uv4H79C2Wu-j55Jjy8bExwGB84rqX-uNyJ7v9TxpHoYkJ4sdFG2qe0B792kkIvfsOALqMmnTfn52VYcfkcJLsnKr1h3KnQD4UDxcskEOKy2v_ZP-0gbNMvCRbhMRrCXMH3PTFRTA/s1600/Myles_Aubrey5.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizK4uv4H79C2Wu-j55Jjy8bExwGB84rqX-uNyJ7v9TxpHoYkJ4sdFG2qe0B792kkIvfsOALqMmnTfn52VYcfkcJLsnKr1h3KnQD4UDxcskEOKy2v_ZP-0gbNMvCRbhMRrCXMH3PTFRTA/s320/Myles_Aubrey5.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6wisk74N3-rCnPkCTbxKKxK_mL0mg26R8yEDtgf3uPvWyG1Y4XDpxOLSmSx3uuoFf8RMiXBxZp_ttC-ZxKegw5M6xPsd9I68sVRcypwtQGlIBMS5dK4ueVmpDHifUWdTVl-MOIGiYoQ/s1600/Myles_Aubrey2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6wisk74N3-rCnPkCTbxKKxK_mL0mg26R8yEDtgf3uPvWyG1Y4XDpxOLSmSx3uuoFf8RMiXBxZp_ttC-ZxKegw5M6xPsd9I68sVRcypwtQGlIBMS5dK4ueVmpDHifUWdTVl-MOIGiYoQ/s320/Myles_Aubrey2.png" /></a></div><br />
<qtlend></qtlend>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com1tag:blogger.com,1999:blog-6203178996480372649.post-13281495290118083782010-04-07T14:47:00.000-07:002013-03-30T08:16:09.469-07:00The Results are in...<div style="text-align: center;">
The results have finally come in on Myles's genetic testing. Although he does not qualify for gene therapy that is currently being conducted there is hope. I found this on the <a href="http://lcablog.blogspot.com/2009/08/gene-therapy-works-on-aipl1-mice.html">LCA Blog</a></div>
<h2 class="date-header">
Saturday, August 29, 2009</h2>
<a href="http://www.blogger.com/post-edit.g?blogID=6203178996480372649&postID=1328149529011808378" name="533835977903629460"></a> <br />
<h3 class="post-title entry-title">
<a href="http://lcablog.blogspot.com/2009/08/gene-therapy-works-on-aipl1-mice.html">Gene therapy works on AIPL1 mice</a> </h3>
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<i>"I'm sorry this blog hasn't been updated in a while. Now there is<br />
finally exciting news to share. A study has just been publish demonstrating<br />
that gene therapy works in mouse models of LCA caused by mutations in the<br />
AIPL1 gene! The conclusions of the authors are very encouraging, as they<br />
recommend the technique to be used in human trials! </i><i>AIPL1 is the 4th gene for which gene therapy has been shown to work,<br />
together with RPE65 (for which studies are continuing and growing on<br />
humans!) and Gucy2D and RPGRIP on animals. </i><br />
<i></i><br />
<i>Here is the abstract from Medline </i><br />
<i></i><br />
<i>Fran"</i><br />
<i></i><br />
<br />
Gene Ther. 2009 Aug 27. [Epub ahead of print]<br />
Gene therapy with a promoter targeting both rods and cones rescues retinal degeneration caused by AIPL1 mutations.<br />
Sun X, Pawlyk B, Xu X, Liu X, Bulgakov OV, Adamian M, Sandberg MA, Khani SC, Tan MH, Smith AJ, Ali RR, Li T.<br />
Berman-Gund Laboratory for the Study of Retinal Degenerations, Harvard Medical School, Massachusetts Eye and Ear Infirmary, Boston, MA, USA. <br />
Aryl hydrocarbon receptor-interacting protein-like 1 (AIPL1) is required for the biosynthesis of photoreceptor phosphodiesterase (PDE). Gene defects in AIPL1 cause a heterogeneous set of conditions ranging from Leber's congenital amaurosis (LCA), the severest form of early-onset retinal degeneration, to milder forms such as retinitis pigmentosa (RP) and cone-rod dystrophy. In mice, null and hypomorphic alleles cause retinal degeneration similar to human LCA and RP, respectively. Thus these mouse models represent two ends of the disease spectrum associated with AIPL1 gene defects in humans. We evaluated whether adeno-associated virus (AAV)-mediated gene replacement therapy in these models could restore PDE biosynthesis in rods and cones and thereby improve photoreceptor survival. We validated the efficacy of human AIPL1 (isoform 1) replacement gene controlled by a promoter derived from the human rhodopsin kinase (RK) gene, which is active in both rods and cones. We found substantial and long-term rescue of the disease phenotype as a result of transgene expression. This is the first gene therapy study in which both rods and cones were targeted successfully with a single photoreceptor-specific promoter. We propose that the vector and construct design used in this study could serve as a prototype for a human clinical trial.<br />
PMID: 19710705 [PubMed - as supplied by publisher<br />
<br />
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I haven't had time to do much research and we have not met with the specialist to go over the results yet, but so far it doesn't look like he is<qtlend></qtlend> going to have any other life altering disabilities due to this abnormality and one day, God willing, he may have a chance to have surgery that would give him at least partial vision. It's funny, I'm really ok with him being blind, but at the same time, so happy to find out there is a chance, even if it is far away, that he may one day be able to see. So for now we are praying that this is the correct information and that the research will continue to move forward. They are currently only doing gene therapy on the 1st of the 4 genes.<br />
<qtlbar dir="ltr" id="qtlbar" style="-moz-border-radius: 3px 3px 3px 3px; background-color: #ececec; cursor: pointer; display: inline; left: 205px; line-height: 100%; padding: 0pt; text-align: left; top: 897px; z-index: 999;"><br /></qtlbar>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-18488359294235511042010-03-04T10:50:00.000-08:002010-03-04T10:50:49.217-08:00Lightbox therapy<div style="text-align: center;"> I keep taking my camera with us when we go to CVI, hoping to get some pictures of Myles while he is "working" with his teacher. She is visually impaired also. He is doing really well, it amazes me sometimes. Some people never realize that he is blind and if you tell them they look at you like you are crazy or wrong. He gets around incredibly well and at times he really appears to see things. </div><div style="text-align: center;"> The first time we ever went to CVI, we didn't realize that a lot of the people who work there are blind or extremely visually impaired. There are different levels of blindness. They actually have the halls lined with images of what people with impairments are able to see. I am fascinated by them. There are even several blind artists. Some people can see only light. Some can see light and reflection, some light, reflection and movement and so on. It's like a spectrum from no vision and complete darkness to normal vision. Myles is at the end of the spectrum. He see light, some form if the contrast is good, some shape or form and movement in contrast. He can put his face in direct light and seems to enjoy the sensation, it would hurt your eyes if you have normal vision. Any way the first time we went, we did not realize the secretary was visually impaired. She looks at you like she sees you ( Myles is learning to do this) and she cocks her head and makes expressions which most blind children and a lot of blind adults do not do. This is because from the age of 18 months on most of a childs learning is visual. You mimic others. You mimic their expressions, the way they form words ... If you never saw anyone wave goodbye, how would you know to do it unless someone took you hand and showed you how. So, we did not realize she was blind and did not know until Aubrey answered her by nodding her head. After a minute the girl said, "if you answered with a nod, I can't see you. Could you speak verbally please?" She can't see your face, but with special glasses that have yellow lenses and a very large screen computer with words in high contrast she is able to read small amounts of text and type entries into the computer. So who knows what Myles will be able to do if he doesn't loose all of his vision. That's what the diet is for at this point, to help him retain what vision he has and keep his eyes healthy. They are so lovely and this disorder he has can sometimes cause whitening of the eyes due to the retinal nerves dying because it is degenerative. It's a small thing and maybe a little superficial ,but if they don't turn white he may not have to keep sunglasses on. Most people with this disorder do that, not for themselves necessarily but for the comfort of others. People find it disturbing and react to it and the blind person senses it. Any way I haven't been able to take pictures the last several times that I have tried because he is being very clingy and cries when the teacher takes him to another room. He isn't comfortable with the other kids because he doesn't know them and for every child there is an adult teacher/guide to help them. A couple of the teachers are very loud and it scares Myles. Which is pretty funny considering how loud he is. It takes a while for him to warm up and let her work with him without tears, so I will keep trying. Maybe next week I can get a few. </div><div style="text-align: center;"> In the mean time I took the ones posted while he worked with the lightbox. He loves the lightbox. He puts his face right on top of it. We are only working with a few shapes and colors to start with. He can discern between two orange circles, a green circle and a red triangle. He will bring each one to me when asked. I really didn't think he would be able to do this but he can. It's so amazing when he can do little things like this. We are also working on stacking blocks. We tried to introduce pictures to him but he either wasn't able to see the image or just didn't understand the concept. I think the image was too small, so I may get some overhead film and print my own in a much larger image to see if he is able to do it. It was a picture of a banana and then she also used a real banana. The idea is to increase his vocabulary and help him to understand an object in a two dimensional way. Later, if there are any communication issues, he can point to which thing he wants and he can do matching and set skills that he will need in school. This will also help him if he is able to use technology in order to read in the future. He will still have to do braille. It is faster and he may loose all of his sight, but they want to prepare him for any eventuality. They are wonderful and do an incredible job. I would have no idea what to do without there help. It's all about teaching him to use the vision he has as much as possible. As well as leaning to use his other senses to make up for what he can't see.</div><div style="text-align: center;">His behavior has been getting better. He stayed here all week last week and most of the week this week. He went home yesterday. He has not been screaming as much and the eye poking has decreased significantly. Now if I could just get him to stop grinding his teeth. Boy, I hate the sound. He now does it if he is stressed, like at CVI when he was upset or when I am rocking him to sleep at nap time. I just put him down at bed time but at nap time he still comes and gets in my lap to be rocked. He also seems to do it when he is bored. So I try to redirect his attention but saying something to him about it just seems to make it worse. Just one more Autistic like symptom on the list. Maybe it will only be Aspergers its hard to know at this point because the vision issues can cause some of the symptoms.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCrYCttyNP5xcdpDj_UdG7VfK9UsfbVMI-m1-IcvWCOhLEYgaaoOMPGkakuAXB0szWMXiDgdgJ5Ngjowc54t6Owr2PUnd4YZoPFPXfurH2HuZcSiwcP-6iJW53zbVXe7bFyw3kDdGLsw/s1600-h/myles2-015.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCrYCttyNP5xcdpDj_UdG7VfK9UsfbVMI-m1-IcvWCOhLEYgaaoOMPGkakuAXB0szWMXiDgdgJ5Ngjowc54t6Owr2PUnd4YZoPFPXfurH2HuZcSiwcP-6iJW53zbVXe7bFyw3kDdGLsw/s320/myles2-015.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QjOS0diGAVoBV7qnDHUMBS6pXjXCU3m4MWz-6FcYOPLqCSs1emQtttjVVy2ZjQ9h95Lq0gZmST7jv_WtNDpNY7qCo-xU11dFZXfqGB3H-wBI_vv31nNZJLwqfNHvV4LeSyIdF9lM8Q/s1600-h/myles2-019.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QjOS0diGAVoBV7qnDHUMBS6pXjXCU3m4MWz-6FcYOPLqCSs1emQtttjVVy2ZjQ9h95Lq0gZmST7jv_WtNDpNY7qCo-xU11dFZXfqGB3H-wBI_vv31nNZJLwqfNHvV4LeSyIdF9lM8Q/s320/myles2-019.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOh4L6QuwIOFvBo4LIroJ6fQZWLMN-TEWy9FT_mysgSgJpDzmIz5TbXCAalcq2IjiJcR2CTm_9qylZX3UCsTVCrkt0EGlXFSbM_yNZQLMt3EzhLNfv7xN__mIQH5C5-Be_jQIwHYGvw/s1600-h/lightbox.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOh4L6QuwIOFvBo4LIroJ6fQZWLMN-TEWy9FT_mysgSgJpDzmIz5TbXCAalcq2IjiJcR2CTm_9qylZX3UCsTVCrkt0EGlXFSbM_yNZQLMt3EzhLNfv7xN__mIQH5C5-Be_jQIwHYGvw/s320/lightbox.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_YQdywZeMDnd8Qej9jrjOwHX6KhHL_BFhSgAdkQYewZ4S3mZpLK2jmQ7Az2VZuPCXpG2aalleWh9hoXoXGF7Uc0oqZAghpAZyVct65NMrzcv4l4EKvHjTlshyrA89ELh9udIhL03F4Q/s1600-h/lightbox-2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_YQdywZeMDnd8Qej9jrjOwHX6KhHL_BFhSgAdkQYewZ4S3mZpLK2jmQ7Az2VZuPCXpG2aalleWh9hoXoXGF7Uc0oqZAghpAZyVct65NMrzcv4l4EKvHjTlshyrA89ELh9udIhL03F4Q/s320/lightbox-2.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5lN-APJx37B8OZRfC1k-CeuHKArZx9budAdoWosZYehVcuF_Ta2r2uzudwYUfBN9yHQC33aiLb8fFI7NIeGdoLsA-1ll2vrzMy4ivU9CaKzURTbKIMQRD2D7OVak0kjVq-yPiIvPMkw/s1600-h/myles2-021.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5lN-APJx37B8OZRfC1k-CeuHKArZx9budAdoWosZYehVcuF_Ta2r2uzudwYUfBN9yHQC33aiLb8fFI7NIeGdoLsA-1ll2vrzMy4ivU9CaKzURTbKIMQRD2D7OVak0kjVq-yPiIvPMkw/s320/myles2-021.png" /></a></div></div>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com4tag:blogger.com,1999:blog-6203178996480372649.post-77852861752146163142010-02-20T12:37:00.000-08:002010-02-20T12:44:35.685-08:00Say it again... and again...I kept Myles most of the time this past week. There was a lot going on and it was just better for him to stay here. My husband was out of town and so it was just me and the boys. Cyan is 14 and pretty much hibernates in his room most of the time and we didn't have school this week due to winter break. It was a hard week and I was exhausted and ready for a break, but I have to say that after the first couple of days he wasn't screaming as often and seemed to be much better behaved. I really think that he just needs more consistency and an intensely structured routine in order to get his behavior under control. The problem is that he is going in so many different directions it is almost impossible to keep things consistent. He is spending the weekend with his dad and so I am sure that Monday will be a "start again" day. Daddy loves him, but it is very much a lets just play and have fun situation when he is with him. Maybe this weekend will be different. Mom and dad are tired of me stressing structure and schedule so they just tune me out now for the most part. I get the "I know, I know, keep him on his schedule" whenever I try to remind them. There is also the "keep him on his diet and don't forget his vitamins" reminder. I feel like a Drill Sargent sometimes or maybe a broken record is a better reference. And then of course there is me telling Myles over and over again throughout the day, "please don't poke your eyes" and "please use your inside voice" or "please don't scream Myles". Now he has begun to put his fingers in his own ears before he screams. At least there wrong with his intelligence. He also learned several new phrases this week, he had now added to his repertoire, "go night-night" and "good job". But his favorite repetitive phrase is still "go outside, go bye-bye" he says it 20 or more times a day, over and over and over. So, I guess we are both broken records. LOL! Maybe it will warm up soon and we can spend more time outside and he can scream to his hearts content or till his voice gives out, whichever comes first.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com2tag:blogger.com,1999:blog-6203178996480372649.post-29731860465214439932010-02-04T16:44:00.000-08:002010-02-05T11:47:02.456-08:00Arggggghhhh!!!!!!! The Screaming.......the poking!!!!!! !<div style="text-align: center;">I may loose my mind. My grandson screams. He pokes his eyes incessantly and he ignores all my attempts to correct these behaviors. We go through phases. I get him to stop poking for a little while. Later, I get him to stop screaming for a little while. Then something will happen with his schedule or maybe nothing happens and he will start it all again. He has been screaming all day, every day, all week. We went to CVI on Tuesday and he screamed almost all the way there and then again almost all the way back, that's two hours of nearly non stop, ear piercing, high pitched screaming . He also throws things, hits, pinches and just generally behaves in a way I can only describe as "Helen Kellerish" It reminds me of the Helen Keller, pre-teacher that I read about when I was a child. It made an impression I guess and when he behaves this way I start gritting my teeth and trying every way I know to make him stop and get him under control. It usually goes better than it is currently going. My nerves are shot. My head hurts constantly. I have no patience.<br />During his non-screaming phases he only screams in unfamiliar situations like restaurants, stores, malls, anywhere there are people of course. When you look at Myles you can't immediately tell that there is anything wrong with him and people think, well I don't know what people think but they get angry. They are rude, they make comments, they tell us to control him. So, needless to say I don't take him out a lot. It is just too stressful. I have a lot of experience with kids. I have raised two kids and nearly a third. I have had a foster child. I ran a daycare/preschool with 60 kids, I worked in the school system for years, I worked in an alternative school for years, etc., etc., I love kids of all ages and I normally have an abundance of patience. But I can't control the screaming. He will not respond. I try to be very consistent. I try to be very calm. He will not stop. It is soooooo frustrating I am really pulling my hair out.<br />We worked very hard on it and he had stopped doing it at home and in the car for the most part for quite a while but since Christmas he has gotten increasingly worse. I really do know why. My daughter and her husband are getting a divorce. His whole little world has been disrupted and he is out of sorts. I just wish that I could get him to a point of feeling more secure so that he would stop because it is so hard to deal with. I can't go anywhere. If I try to talk on the phone the other person says "oh dear, I guess I'll talk to you later ", I don't blame them of course. If I could hang up on it I would too. On top of this he is poking his eyes until they are bruised. This stresses me out because it can cause damage to his eyes. Nothing I say or do will make him stop. Sometimes I just have to hold him and hold his hands down for extended periods of time until I can get him to focus on something else. So what is the point of this post you ask? I don't know really. Just a release of frustration I guess. If you have any ideas of course I am all ears. At least until I go deaf or insane.<br /></div>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com9tag:blogger.com,1999:blog-6203178996480372649.post-44566769611522300782010-01-27T11:23:00.001-08:002010-01-27T11:27:42.106-08:00Forks and SpoonsSo for months now I have been trying to teach Myles to eat with a fork or spoon. Some days are better than others, some foods easier of coarse. He can get mashed potatoes on the spoon and in his mouth at least 1/2 the time. We're still trying to come up with some sort of workable plan for potty training. I don't really want to do diapers for years and from what I have read and been told that happens a lot with children who are severely visually impaired. We're trying to figure out a way to incorporate lights and sound but I am still at a loss as far as actually making a plan.<br /><div style="text-align: center;"> <br /> Myles won't wear his glasses at all now so I don't know if that means they are no longer helping or if it is just a two year old thing. He keeps breaking them and I can't even keep them on long enough to read a book to him. So his vision may be declining. His nystagmus is worse lately and I am having to remind him more and more to use his eyes too, not just his hands. When he does actually look at something he puts it very close to his eyes and says "hmmm"or"ohhhh" so , he still sees something.<br /> <br /> We are working on Braille readiness. So we are trying to learn top, bottom, and sides, and to run his hand from left to right across the page. He loves the feel of paper, thank goodness. My son and daughter both have sensory issues with paper and I was worried that he would too. We have been encouraging him to touch it and play with it since he was 8 months old so maybe that has paid off. He still hates the feel of sand, rice, coffee grounds and grits. So I am temporarily out of ideas for the sand table play. We are supposed to hide things in one of these boxes of sand, rice, grits or coffee grounds and let him "discover them". He just refuses to put his hands in it. He will stick in one finger then pull it out and wipe it on his shirt repeatedly. As with most two year olds the things I want him to touch and play with he won't and the things I don't want him to touch and play with he goes back to constantly. The joys of the terrible twos!</div>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com3tag:blogger.com,1999:blog-6203178996480372649.post-18526965494103859542010-01-16T14:41:00.000-08:002010-01-16T16:45:29.360-08:00UpdateWe heard from the doctor from Emory yesterday. Unfortunately Myles does not qualify for the Gene Therapy that we had been hoping for. They said that the reason the testing is taking so long is because the mutation he has is more rare than we had imagined. Apparently they don't know much about this one and we will have to wait until they are able to complete a full breakdown of his genetic profile to find out what the other effects of the mutations will be. So it is news and no news at the same time. More waiting, more wondering, more confusion and the only new information really is that he does not qualify for the surgery that might have helped him to see. And so we keep waiting...<br /> ...and praying, and doing what we can through diet and therapy.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com4tag:blogger.com,1999:blog-6203178996480372649.post-25586542572028417742010-01-03T15:58:00.000-08:002010-01-03T16:02:44.838-08:00Still waiting<div style="text-align: center;">We are still waiting for genetic testing to come back. I has been about 9 months, I think. Myles has not been doing great on his diet over the holidays. Well that's what New Year's Resolutions are for!<br /></div>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com3tag:blogger.com,1999:blog-6203178996480372649.post-29351531287227209522009-11-29T13:44:00.001-08:002009-11-29T14:13:00.157-08:00Myles<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0lx7Pd_VTk0ZI3yIRxcc2Qhkk9Kf9UqNGkkisyzcXWBwlcil_9JFlIdhTfH3JOOECNmW9ptQefMpkTnjtNvaaRCB-FzLTxB4A_NRVN_HfElVWCt8JDZMrsbQAdHcFs29PpG6LkF5mVQ/s1600/11_23_09-141.png"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0lx7Pd_VTk0ZI3yIRxcc2Qhkk9Kf9UqNGkkisyzcXWBwlcil_9JFlIdhTfH3JOOECNmW9ptQefMpkTnjtNvaaRCB-FzLTxB4A_NRVN_HfElVWCt8JDZMrsbQAdHcFs29PpG6LkF5mVQ/s400/11_23_09-141.png" alt="" id="BLOGGER_PHOTO_ID_5409649525610559698" border="0" /></a><br />Myles in November<br /><br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2hvxBKtLOnbyb47aKtudl7DiJc-_Q2p9N2qmvfu78LVu9YA-dvElN7ukzia-SLXUZIUg-I-EcQy96PnB1MAngCiXLjHePAAtLBv2DlzOtlzV8w5pZaxQvMyPCsyis10PXcPZZrnqeEA/s1600/glasses.png"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 346px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2hvxBKtLOnbyb47aKtudl7DiJc-_Q2p9N2qmvfu78LVu9YA-dvElN7ukzia-SLXUZIUg-I-EcQy96PnB1MAngCiXLjHePAAtLBv2DlzOtlzV8w5pZaxQvMyPCsyis10PXcPZZrnqeEA/s400/glasses.png" alt="" id="BLOGGER_PHOTO_ID_5409649508720431266" border="0" /></a><span style="font-size:85%;">(diet week 6)</span><br /></div><div style="text-align: center;">In his silly glasses, but wearing them, yeah!<br /></div><div style="text-align: center;"><span style="text-decoration: underline;"></span><br /></div><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCQ03AwWfC1f9UxMQfOMbI5UR-pRZR6RHHHbkqbXCJ_iGwS8JuDuSCNJ-yoNdr0f6eaydhvgoThGuLNtTH8VIifwIzKLqTkDWpspRLbFckGC4Z7uIj14WN_hv_146F59_WiSSranuxtw/s1600/vision-in-August.png"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 366px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCQ03AwWfC1f9UxMQfOMbI5UR-pRZR6RHHHbkqbXCJ_iGwS8JuDuSCNJ-yoNdr0f6eaydhvgoThGuLNtTH8VIifwIzKLqTkDWpspRLbFckGC4Z7uIj14WN_hv_146F59_WiSSranuxtw/s400/vision-in-August.png" alt="" id="BLOGGER_PHOTO_ID_5409645433201677250" border="0" /></a>This is how close he has to hold something to "see" it. It also usually has to be shiny, have a light or brightly colored for him to try to see it at all.<br /></div><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigIFKCIuc8I2NDCneCWTzaB7lXoe9f7IvFVM6E-8nAPCd3jzoVutSRJcc8_stNgKhyphenhyphenLbgVWM-VPQwukBR22Ae6PDCFdkgpjtHRT8ENLT5onofHZgDur8pGty3ojfTziv-u0O8XTxPL3Q/s1600/August-keys.png"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 376px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigIFKCIuc8I2NDCneCWTzaB7lXoe9f7IvFVM6E-8nAPCd3jzoVutSRJcc8_stNgKhyphenhyphenLbgVWM-VPQwukBR22Ae6PDCFdkgpjtHRT8ENLT5onofHZgDur8pGty3ojfTziv-u0O8XTxPL3Q/s400/August-keys.png" alt="" id="BLOGGER_PHOTO_ID_5409645087335364594" border="0" /></a><span style="font-size:85%;"><span style="font-family:times new roman;">(before diet)</span></span><br /><br /></div>k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-84629105033500075322009-11-23T18:37:00.000-08:002009-11-23T18:44:33.110-08:00A NutritionistSo, my daughter has a nutritionist looking at the diet we have Myles on to make sure we are doing the best we can for him. I really think the higher dose of Vitamin A was making more of a difference and can't seem to get enough food based beta-carotene in him to make up for lowering the dosage. We go back to CVI tomorrow and will see how he does there, that should give me a better idea of how much of a difference there is in the lower dosage. It just seems as though he is not using his eyes as much this week. It's still better than before the diet, just not as good as when he was on a higher dose. We also added ExFuze seven today. My daughter has been taking it and thinks it will help so we will see.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-29246139045427037972009-11-19T10:42:00.000-08:002009-11-19T10:44:50.710-08:00waitingnothing new, in fact he seems to not be seeing as well and hasn't wanted to wear his glasses as much so, I am wondering if it was a mistake to cut back on his vitamins...k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-61978193993986877672009-11-18T05:34:00.000-08:002009-11-18T05:40:52.822-08:00CVIWent to CVI yesterday and Myles wore his glasses the whole time. It was like a whole new world to him and we have been a lot. He even saw a snack on another child's plate that he wanted. His teacher said she has a lot of parents who believe their child's vision has improved, when in reality they have just learned to use what vision they have more effectively. So, I guess I'll say again, it could just all be a coincidence and not the diet, but we will keep it up and see what happens.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0tag:blogger.com,1999:blog-6203178996480372649.post-87392595773731436962009-11-16T14:02:00.000-08:002009-11-16T16:33:23.656-08:00The dietSo about three weeks ago my mother-in-law called me and said she had heard a doctor on the radio talking about having a son with Leber's who lives here and who's son has been admitted into one of our private schools that has never had visually impaired students before. The reason this was, she said on the radio, was that though her son had been born blind, she had put him on this diet and he now has vision. My mother-in-law was very excited and I said I would try to reach this doctor. I called her office and left a message and sent her an email. Nothing, never heard from her. So, I went back and listened to the recording, believing that my mother-in-law must have had it wrong. After all, Leber's is very rare. Two people in the same town with the same diagnosis is unusual. Leber's is a congenital birth defect and a progressively destructive disorder so it was also hard for me to believe that a diet could change this. I was skeptical to say the least but as my mother-in-law said, "It's only a diet, how could it hurt to try?". So, after listening to the recorded program and finding out that she did indeed say Leber's and use the words "blind at birth", I decided I needed to figure out what kind of diet it was. She mentioned a few things like vitamins and no processed foods and I already make most of what Myles eats so I started doing my own research. I decided to put Myles on a diet used for Macular Degeneration. It is similar in many ways to Leber's and I remembered one of the doctors talking about a relationship between the two. I will post the diet after he has been on it for a little longer and after I have tweaked it a bit more. I would like to work with a doctor on it also. I am just having trouble figuring out who to go to. To make a long story shorter, I have had him on "the diet" for 3 weeks and it appears to be working. Unfortunately, I have apparently been giving him higher than the recommended limit of vitamin A though, so this weekend I cut him back to 2 multi-vitamins instead of the 3 it recommends on the bottle until I can get with a doctor and find out what is safe as an UL for his weight and perhaps, his condition. For the most part it is a simple healthy eating plan that focuses on specific vitamins that support vision and have been shown to slow the progression of Macular degeneration. These vitamins are A,D,E,K, B and C. Also Lutein, Omegas, DHA and Licopene. So, I have been giving him Yummi Bears Gummy Vitamins. The label recommends 3 per day for a 2 yrs and older which provides 2500IU per day of vitamin A. The problem is that the RDA is 2000IU/daily for a 2 year old up to 27 lbs,(Myles weighs 31 lbs) it goes up at age 4 to 3000IU/daily so what I have been giving him may be fine, I am just not taking a chance on giving him excess until I know it's ok. I have been giving him one packet per day(3-4 gummy vits) Gummy Omegalicious vitamins, these contain DHA, EPA, C, and Lycopene. I also started using Ovalteen(there is also Vitamin A in Ovalteen) in his milk instead of Hershy's syrup. He will not drink plain milk and Hershy's is made with high fructose corn syrup. From what I have read this can prevent the body from absorbing the nutrients properly because it causes them to be processed too quickly. I also use 1 tbsp of blue agave inulin in his milk to create a "good environment" for vitamin absorption. It is a pro/prebiotic. He eats yogurt every morning also. Acidophiles feeds off of the inulin aids in digestion. Everything else is food based. A balanced diet based on little to no processed foods and is somewhat higher in fat than the RDA but the fats are based on the nutrients needed for brain, eye and nerve development.<br /> <br />And it really seems to be working. This is what we have noticed so far:<br /><br />When Myles had the ERG is was determined that his retina was only working at about 2%. When he was evaluated it appeared that he was only seeing shapes, a few colors on a contrasting background, and he still has some light perception. He can see more or less based on the amount of light there is and the type of light. For example I have skylights and lots of windows without curtains. In the early morning he has trouble maneuvering and finding things and tends to eat blindly. What I mean by this is that he uses his hands and stares at the lights while he eats. He never looks at the food. Later in the day, on a clear day, he seems to see the food more and will attempt to use a spoon. He has never looked at photos, never wanting anything to do with books, etc. If he drops something he has a very short range of vision and can only find it within this range or by feel.<br /><br />So these are the things we have noticed so far, which may seem very small and could be coincidental but we don't believe that they are. <br /><br />1) on Monday he picked up a small (the size of a dime) piece of cereal that fell on the floor. There is a contrast but it was not in a well lit area and he has never been able to do this before. Then he did it again. Yes, I am sure he heard it fall, and it is possible he didn't see it but, he cocked his head as if finding a null point and seemed to be looking at it. I didn't say anything to any one about this. I wanted to wait and see if anyone else noticed anything different.<br />2) on Tuesday my husband noticed that he seemed to be seeing things in the kitchen that he usually never pays attention to and it was early morning, 7:00 am and not very well lit.<br />Also he started looking at the computer screen again. He used to love the computer and would watch slide shows I made for him over and over again, then as his vision deteriorated or seemed to deteriorate, he lost interest, now he is really looking at it again.<br />3) on Wed. he grabbed and dropped a glass of water that was "out of his normal range of vision".<br />He did this 3 more times all in different places, with things and in areas that he previously seemed unable to see. He took pictures down off the book shelf and sat and looked at them. He opened books and looked at the pages. He reached for rolls of blue ribbon from the center of a higher table and then brought them up to his face to see them more closely. Previously he seemed to not be able to see blue. He found the small pebbles in a pot of bamboo on a table.<br />4) on Thursday he found a book that I've tried to show him many times before and he had minimal interest in it. It is a braille book with textures and black and white drawings on bright yellow paper. He sat in my lap and looked at it over and over for an hour. Seriously, for an hour.<br />At home he found his glasses in his room, he hasn't worn them for about 6 months, not since the doctor said they really weren't doing anything for him and he wouldn't keep them on and we kept having to get new lenses because he would eat them. He put them on and wore them all night and cried when Aubrey took them off. He looked at a photo album for the first time.<br />5) on Friday he wore his glasses all morning. He continued finding, touching and exploring new things around the house. He sat in my lap for over an hour looking at the same book as the day before. I finally had to try to get him to do something else because his nystagmus was bothering him because his eyes were tired. I had previously taught him to put coins in a bank by feeling the opening with one hand and putting it in with the other. Today he used one hand and seemed to see the opening.<br /><br />I could keep going and I know it could be all just a coincidence. But I started thinking about the fact that most of these nutrients he was getting while Aubrey was nursing him, then she stopped and he has seemed to actually loose vision over the last 8 months. Had I known there was a chance that it could help him keep what vision he had or postpone some of the degeneration I would have been doing this all along. But I had no idea. So I will keep doing as I am doing for now, talk to the doctors and keep posting with my fingers crossed. Because if he could just keep some of his vision there is a chance he will have the right mutated gene and be eligible for gene therapy or that they will be able to do it for other genes in the future and if we can keep his eyes healthy maybe he will be a candidate. In the meantime, as long as we are careful, it can't hurt.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com2tag:blogger.com,1999:blog-6203178996480372649.post-84219858425869334312009-11-14T10:56:00.000-08:002009-11-14T11:07:15.640-08:00what this blog is aboutThis is a blog about my grandson Myles who has a rare genetic disorder called Leber's Congenital Amaurosis. It is so rare there are said to be only 3000 people who have the disease. It is a degenerative disorder that causes blindness and depending on which gene is effected a myriad of other problems. When Myles was diagnosed eight months ago we immediately began researching the disease. We had a hard time finding much other than research on gene therapy, the causes, and definition of the disease. I will post links here for other parents or anyone interested in finding out more about the disease. This site is for the most part an outlet for me and maybe a help to anyone else out there who has a child or grandchild suffering from this or similar disorders. It will be about the things we are trying to do for him and how he progresses as time goes on.k.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.com0