Monday, June 20, 2011

News...and The News!

Hey there,
So, we have some news about Leah. The ophthalmologists came by today to let us know that they will be doing the operation on her right eye for cataracts this Thursday. They will plan to do the second eye next week. Since they are taking the lens from her eye and cannot insert another one, she will have to wear contacts. Although, because of her eye movements, if the contacts don't stay in, she will have to wear very thick glasses so that her vision can develop normally. They told us that it is a very simple procedure, they will suction the cataract out with some instruments. She will need to have a lot of eye exams and care for the rest of her life, because there is a risk for glaucoma to develop later in life.
They discontinued the Haldol today and there was a significant difference in her movements today. She still had her "dance" as we call it, but did not have the extreme dystonic movements that we saw over the weekend while she was getting Haldol. Actually, dystonic movement is one of the known side effects of that drug, so since it didn't help, it made things much worse for her. We are also planning on a having a sit down family meeting with the Neuro team to see what the next steps are for her as well as to get a list of all the tests that they've already done and what they've ruled out. That should be happening some time this week.

KTLA 5, our local channel stopped by today to interview us about Leah and all the support she's been getting from the Star Wars community on Facebook. I guess someone called them yesterday and they were going to stop by yesterday, but it was too late. Then a friend of ours, David Silva said he also called them to tell them about us. It will be airing tonight at 10 pm on channel 5 in LA. Hopefully people will see and be able to help, maybe some doctor will be able to learn more about her and her symptoms and help.

I'm so proud of my little baby, she's so strong and brave. I'm amazed that she continues to fight everyday and is trying to do all the things that babies her age do (holding her haed up, sucking her fingers, smiling) It's a little harder for her, but she tries very hard. She'll always have Zev and I, and her family all over the world now to count on.
Thanks to everyone for your well wishes and donations
Peace,
Frani

24 comments:

  1. hey me and my step brother were watching the news today and we became aware of leah's condition. My step brother has a thought of what it could be or what could've effected her to get her to the medical condition she is now. He says "since she was 1 month old when she had the seizure her brain isn't fully grown and developed at that age and the convulsions could have caused her brain to move back and forth in her head and resulting in some new kind of somewhat constant but not as severe seizure condition, I would try figure out more but they are several variables that have to be considered like if she had a fever around the time of the seizure, family history of alike conditions, things that could trigger or contribute seizures before entering the hhospital, etc.. Posting of information like this ( If possible and not to personal) would be very helpful and might help in finding out and helping little Leah"

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  2. I just saw your spot on KTLA 5 before work. I know someone whose child had mini strokes en utero that caused his problem. Maybe this could be Princess Leah's problem? I am sure that your doctors have already looked at that, but, if not, perhaps it might be a thought

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  3. PLEASE have doctors check for an Occipital Stroke!

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  4. Hi,
    Thank you for your comments and suggestions. The news report mentioned she had seizures, but she really did not have them. She has seizure-like activity, so it looks a lot like they could be seizures, but she's had 2 EEGs and no seizure activity was detected. If you'd like to read more about the details of her disease, you can go back to the first post and read all about how this started.
    Thank you so much for your support!!
    Frani

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  5. Has it been considered this little girl may be suffering from a vaccine injury, did she receive the HBV at birth, or any other vaccines prior to the onset of this mysterious illness? Just a thought...Prayers for baby Leah for a Full Recovery.

    Sincerely,Michelle Parsons

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  6. I pray your beautiful baby make a full recovery.

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  7. Prayers for your beautiful baby girl, I just saw the news right now, went ahead and a link to your site for those to follow and donate on my Blog/Facebook and Twitter

    Prayers your way ♥

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  8. Hello- I am a stranger to you. I am in Kansas and heard your story on the news. I am so sorry to hear about your situation. It sounds a lot like our though. Has genetics tested for Menkes yet? The sooner you can get that diagnosis the better (although you do not want that diagnosis!) I wish you all well and pray for a curable diagnosis for you. carsonbowman.blogspot.com is my son. (it goes back almost 4 years!)

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  9. I just saw your story on tv today. I am sure many will start following your story and life of your little one here as well. I just want you to know that I felt deeply for what you and your sweet little one are going through. My family will be praying for your little girl and your family in this journey. I hope the best in all of this.

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  10. Hi I'm so sorry ur beautiful baby girl is going thru this. I kno how hard it is to see ur baby suffer so much. My son spent so much time at UCLA the first year of his like he has seizures a rare type called infantile spasms. He started when he was 2 1/2 months old. He is now almost 2 years old and can not hold up his head, sit, crawl or do anything he should be doing. I kno how tuff things r he needs therapy and my insurance don't wanna pay. I'll be praying for you beautiful baby!! Stay strong!

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  11. You've made it to CNN.com. Your baby is beautiful. I hope that her doctors will soon know exactly what her diagnosis is and are able to treat it.

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  12. Ask you Doctor or Neurologist to see if she is having Infantile Spasma (seizures) my daughgter had those symptoms after she had her shots. she would move her eyes in that manner, move her arms and legs as if she would hug you. she wnt 6 months in and out of hospitals with no diagnosis until she came across a great Neurologist by the name of Jean Lake in Long Beach right next to Long Beach Memorial, a great hosptal too. Please see if maybe this could be her condition. I hope things work out for you and specially your baby. I know exactly what you guys are going through and my prayers are with you. its hard to see our children in these sitaitons. I hopemy infomation helps.

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  13. Hi I just saw your story on the news. It really sad whats happening to her but like you said shes a strong baby. Were going to have princess Leah in our prayers. Hope she gets better soon

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  14. @Angel805, I feel ya, my daughter went through the same thing. what state do you live in? My daughter was blessed to have all the help she needed. she also started infantile spasms at 3 months and had them for 6 months straight cause we had no diagnosis. she started walking at 2 years and 4 months and now she is is special day preschool going to special education kindergaten in the fall. is he still sezuring? I hope things get better with you too becuase i know exactly what you have and are going through..

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  15. Would like to help you out with some $. Is there a paypal account set up for Leah? I'm sure others would like to contribute as well.

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  16. Please have the Doctors look for Vaccine Neurotoxcicity..that's what this looks like to me.

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  17. I just wanted to say that I found your story through a friend of mine on Facebook. It's hard for me to read back through all the posts because, having just become a new parent myself not too long ago, it breaks my heart to read about all the difficulties you are having as a new family, but my thoughts and prayers are with you. Things are kind of tight for us right now, but as soon as I am able I will try to contribute to the funds to help. I will also be sharing your blog on my Facebook. You have a beautiful little girl and I hope that the medical team can help her.

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  18. Hello! Just wanted to let you all know that they also aired your story on the 10 o'clock news in Wisconsin. As a mother of a special needs child, I understand what you are going through and wanted you to know that my thoughts and prayers are with you. Best of luck to your beautiful little girl and to both of you. I hope you hear some news with your neuro team! Again, best wishes.

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  19. Hi! We have a son that had the eye movements that Leah has. He was diagnosed with Opsoclonus Myoclonus Syndrome (OMS). Opsoclonus is the eye movement and Myoclonus is shaking of extremities. There is a specialist in Springfield, Illinois. His name is Dr. Michael Pranzatelli. His web site is omsusa.org. They also were concerned about seizure with our son but determined he never had them. The cause of the OMS was a tumor called Neuroblastoma that was found 9 months after symptoms started. He is in remission of the Neuroblastoma now. He is receiving treatment from Dr. P and is doing well. Also, many OMS patients get missed diagnosed with Acute Cerebellar Ataxia. ACTH injections were a vital part of his treatment plus others. If you need more information, please contact us at bkkjlk@sbcglobal.net. We also were informed about an organization called NORD (National Organization of Rare Disease). They offered financial help. It may be worth it to check in to it. Good luck! We know what you are going through, we have been there! Our thoughts are prayers are with you! Ben & Jackie Kasabian.

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  20. Hi bkkjlk,
    If you go back a few posts from last month, you'll see that they had actually thought it could have been neuroblastoma at one point. She had a CT scan, an MIBG and a spinal tap which all came back negative for any sign of Neuroblastoma. Plus she got treated with IVIG anyway, and it did not do anything. Our UCLA neurology team tried to get in touch with Dr. Pranzatelli, but I don't think he ever responded

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  21. Hi Zev and Francesca,

    Keiko, the mother of Dr. Lekha Rao has just posted me the link to yours and your little daughters life situation, and it touched me to see how you are battling to bring about a help and healing to your girl.

    I am not a doctor, and I have not much to say about the treatment and progress, I just wanted to tell you what most touched me.

    Whatever the causes may be, but it feels that you daughter cannot easily focus with her eyes, is that observation right? Through the eyes much inner energy is flowing, and this energy goes out into space.

    Living our life has much to do with that we feel a precise aim why we wish to stay here and have a 'healthy and normal life'. A preparation for that is that the eyes begin to focus on something concrete, then the energy follow the direction of the eyes to focus on something like 'now I want to get healthy'....
    I hope and trust that you can follow that thought.

    Now of course a child as small and soft as your cannot do on her own will, she will follow the example of mother and father, if she gets a secure guideline.

    But normally mother and father are dependent on the experts in hospital, and they are more or less passively waiting to receive the right treatment.

    I don't know it this will work or not, it just felt to me the best way for your to be able to do something actively also in this finding.

    When you are sitting and caring for your wonderful child, next to her, maybe you just give her an example how you can focus your eyes, not in an 'active form', so that the child would be compelled to look, but do it in a passive form, just your example, your own concentration, you can keep quiet and love and concentration, and the child will love to catch the deep feeling of peace coming from you.

    To say it short. If it feels right for you, and when you are sitting with your child:
    Take five minutes silence, without speaking, doing anything, and focus your eyes, so that your energy will be an example for her:
    Close your eyes and use your strength of imagination: With closed eyes look from inside at the tip of your own nose, so that the 'looking axis' of both your eyeballs meet at the tip of the nose. Then stay like that for five minutes, just holding this concentration there, breathe quietly, don't do anything else than just concentrate like that.

    Do you understand what I mean? This is a form of helping the eyes of your child search a focus uncontrolledly, maybe she will catch the quiet of your focussed silence. And as children love to imitate what they love, she might, without consciously knowing what she does, try to feel the same way as you when you are concentrated and focussed.

    May you win the battle!
    With all my love and friendship
    Puran

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  22. Hi! I would encourage you to contact Dr. Pranzatelli yourself. I have two numbers for him. They are 217-545-7635 and 217-545-8417. In half of the patients, a neuroblastoma is never found, it is thought that half of the tumors eradicate themselves. Our son received a triple treatment to treat OMS which were ACTH Injections, IVIG and Rituximab Chemotherapy. You may need all of these to help. One on it's own may not be enough. I can't tell you how much Dr. P has helped our son. He would have no kind of life if it weren't for the triple therapy treatment. Please, please, please try to contact him again. Ask for Dr. P or his nurse Liz. Liz is great!! We will be going to see Dr. P in the middle to end of July. Take care and Leah and your family are in our prayers.

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  23. hola realmente es muy penoso que una nena tan pequeña tenga esta enfermedad que aun los doctores no encuentran la solución, ni la causa de ello, pero se que arriba hay un Dios que es padre de todos nosotros y esta aun más cerca de leah por que ella es una angelita luchadora, que nos demuestra su fotaleza y nos hace darnos cuenta del verdadero valor de la vida, yo tbn tengo una bebe de la misma edad de leah, y es mi adoración, y me imgino el sufrimiento de la familia de leah, solo tienen que seguir adelante, brindandole todo el amor que existe a esta nenita tan linda, y pedir mucho a Dios que la proteja y que la sane, el es grande y si toodos unen fuerzas de amor pidiendo por leah, el los oira, y asi va a ser, solo seguir confiando en Dios que el muy pronto curara a leah, muchas bendiciones a la familia, y sigan con esa fortaleza que es lo que le ayuda a la nena.

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  24. hola
    por favor ya no sometan mas ala pequeña a mas intervenciones ....ella puede mejorar ..ya que los medicos no encuentran la solucion prueben con la medicina natural ..que en lo personal me ah ayudado bastante ...lo digo por mi madre que ah tenido un cancer al utero en grado 2b ..ella esta hoy muy bien ..porfavor necesito enviarles informacion ..si se pueden comunicar conmigo al 4780317 en peru preguntar por elizabeth..porvaor comuniquense que veran mejora en su niña ...yo se los que les digo.o escribanme al correo elizabethavaloslimaylla19@hotmail.com

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