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Progress
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Gene therapy has grown in the past year. Our first treatment was a Liposomal Vector injected through a shunt in the top of the head, and only penetrated what it hit. Now, with all the new technology, our next treatment, which is currently awaiting FDA approval, is going to be a Viral Vector, which is to be a thousand times stronger than the first one. With this, the doctors are going to drill 6 tiny little holes at the pin point areas of the brain and through that they will inject the new gene. It has been said that with the proper therapy and rehabilitation afterward they do not see why they would not be walking. Of course this is experimental and that is not a definite but it is a bigger hope for those families involved. Brianna's first treatment was done in March of 1998. Before the operation she was considered legally blind, glasses would not help. She had very little head control and her muscles were very tight. Since the operation she has had no further deterioration in the white matter of the brain, which is what this disease affects. She has glasses now and can see 4- 5 feet in front of her. She can lay on her stomach and lift her head up, she is not tight fisted any more, and is much happier, it seems. I feel that if the first treatment can do all this, just picture what the next one will do.
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Here are the latest test results:
BAER of 1/22/01: Interpretation: "These BAER responses are abnormal due to absence of response beyond wave I and II, suggesting abnormality of central condution at the level between the lower pons and the midbrain. As compared to the previous tracing, no significant changes have been noted."
SER of 2/5/01: Interpretation: Posterior tibial nerve somatosensory potentials are abnormal due to absence of response beyond the lumbar potential suggesting central conduction abnormalities at the level between lumbar spinal cord and the somatosensory cortezx. Compared to the previous studies, no significant changes are identified.
VER of 2/5/01: Interpretation: These flash visual evoked responses show well-defined cortical responses which are three standard deviations beyond normal. This suggests delayed conduction but does suggest some degree of integrity at the anterior visual pathways. This recording should be repeated at a later stage when the patient can be cooperative with pattern reversal visual evoked responses, which are more sensitive to underlying defect in an anterior visual pathway.
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YEAR 2000 and the FUTURE
We have had a long year. I am now taking her to South Euclid, Ohio for a low vision eye specialist, Cincinnati Childrens Hospital for Orthopedic specialist. We are also going to her neurologist, gastro doc., dietitionist, pediatric endocronologist, Getting P.T. and O.T. three times a week at home, Speech once a week at home, and Schooling 5 days a week at home. And vision therapy at home twice a month. They are seeing progress in her. The vision therapist noted her tracking one day from top right to lower left, and also warming up to her finally. The teacher has noted Brianna "talking" to her more. Loosening up easier. Tracking past midline a few times, and enjoying her crafts. P.T. is doing real good with Brianna. Brianna likes to give her a real hard time and laughs about it too. The speech teacher is getting better and better swallows from Brianna. And she is allowing the facial massages a bit more each time. Brianna is still awaiting FDA approval for Gene Therapy to continue. They re-put it on hold requesting further studies on the animals. There has been some study that the animal has a tumor now a year and a half after the treatment on it. And they need further data to determine what exactly it is from (just another loop for us to juggle through).
Yulinda
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1-9-03 2002 has shown to be a very good year. Brianna has had one hospital stay which was in May for seizure activity. We have since switched neurologist and he has taken Brianna off her Dilantin and placed her on Trileptal. She was getting 1tsp. Trileptal 2x day and 6cc Tegrotol 4x day for seizures. We seen our neurologist yesterday and he is now weening Brianna off her Tegrotol and increasing her Trileptal to 1.5tsp 2x day. Hopefully all works well. Brianna has had a couple minor colds and ear infections. Nothing major. Over all a very good year.
Gene therapy is still moving very slowly. For Brianna she had an MRI & MR Spectroscopy and these test showed severe white matter deterioration and some secondary atrophy as well. (slight deterioration in gray matter) Thus leaving the researchers very leary of treating Brianna with Gene Therapy. They fear that it would cause further complications to her. Also they are only accepting children to the age of nine and Brianna is eight. Right now they are hoping to treat 3 children in the sping of 2003. And are only planning on treating they younger children first. So long story short Brianna will no longer be able to receive gene therapy. Research for Stem Cell is still in progress but moving very slow. Still no evidence shown for human trials to be beginning. So our little ray of hope is growing dimmer and dimmer. We still have our faith that the Lord will take care of Brianna. We can only care for her the best to our ability and keep her as happy as possible. And her everyday smile and laughter shows that we are doing a great job of that. She has grown a great deal in the past year also. Weighing in at 60lbs, and reaching a height of 43.5 inches.
Brianna was finally accepted after a year and a half wait for Med waiver. They (case worker) are working on getting a wheelchair lift for my van. Having our bathroom customized for Brianna and Getting a care giver to help with every day needs. I chose not a nurse for I still want to be a major part of Brianna's care. Thus including the feeds and medication that I will do.
Thank you all for your continued support and prayers. We truly appreciate all that we get. Brianna has a PO. box set up to receive cards from her friends. And would like to hear from you as well. Feel free to write her at Brianna B. P.O. Box 1 Gibsonburg, Ohio 43431 Thank you and GOD Bless you all.
Yulinda - Donika and Brianna's mom
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June 2003-Brianna is doing very well. She is staying healthy and going strong. She recently received a new stander and she looks so good in it, BUT, we need to keep and eye on her legs for the muscles are not use to that severe of a weight bearing and have a hard time pumping blood back up to her heart. It is not dangerous for she has a good color return when touched. We just have to keep and eye on it and only leave her in for a few minutes at a time. Over time this should improve. We also got a new bolster and wedge for her to do therapy on. We love them. And horse therapy has been going really good also. This friday is our last day for the spring session then we will have a two week off and go back for summer. We had recent hip exrays done on her and they show that her 20 & 40% effaced hip subluxation has improved to where now there is no noticable hip subluxation at all. I am not sure if it is from the therapy or the horses but what ever it is I am so thankful. Brianna has had to start taking Hormone shots for her Central Precosious Puberty. She will get this shot once every 28 days. Our nurse that we did have for a couple of months just up and quite on us one day. For personal reasons I was told. SO again we are looking for a new nurse to help care for Brianna so I can go to some of Donika's games. She is in softball and has won all her games so far. She made cheerleading squad. Her pageant is coming up this next week June 12-14. She is still in 4-h, Jr. Lyo, And volunteer at a local nursing home. She is wanting to try out for volleyball also. I think I listed them all. (hehehe). Both of my girls are advancing to there next grade. Donika will be a 7th grader and Brianna will be in 3rd. Well I think that is all for now. I will write back again soon. Dont forget to sign Brianna's guest book and let her know you was here. She loves listening to me read them to her.
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July 2003 - Brianna has been having some seizures lately so we are in the process of running more test on her. We had a bunch of blood work done her medication level was real good, CBC was normal and liver counts was normal. We had an MRI and MR Spectroscopy done on Friday the 25, we are awaiting the results on that one. And on August 4, we will be having an EEG 48 hour test ran on her as well. Other than that she is dong really good. Her head control is to us improving for the fact that we can get her to hold it midline better now. I think her horse therapy has a lot to do with that. Thank you all for your continued support and prayers.
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