*~Tina~* Posted April 14, 2011 Share Posted April 14, 2011 (edited) Our daughter has a refractory seizure disorder and some related developmental issues, and during our trip to the Cleveland Clinic a while back someone suggested a wish granting organization to us. Well. . .after waiting a month, we learned today that upon reviewing the specific criteria, her neurologists felt that she did not qualify. Now my girl is crying her eyes out. She is so disappointed and I am so disappointed for her. :crying::crying: Would you please pray for her? Her heart is broken right now. She's had such a tough time with EVERYTHING and I wanted this SO much for her - for her to have this something special just for her, to know that people care, to know that with all the struggle there are moments of light. The seemingly "hidden" disabilities seem to be discounted by the world in so many ways, but they are real and they are life altering for children and their families. Sigh. . . They did give us the name of another organization to contact, so prayers in that directions are appreciated as well. Edited April 14, 2011 by *~Tina~* too upset to spell well Quote Link to comment Share on other sites More sharing options...
Mabeline Posted April 14, 2011 Share Posted April 14, 2011 :grouphug: I'm sorry. :grouphug: I will pray for her. Quote Link to comment Share on other sites More sharing options...
OLG Posted April 14, 2011 Share Posted April 14, 2011 How disappointing and I agree with you wholeheartedly about the invisible disabilities being pushed to the bottom of the pile. So sad. So sorry for your dd. Praying that some unexpected delight comes her way! Quote Link to comment Share on other sites More sharing options...
tex-mex Posted April 14, 2011 Share Posted April 14, 2011 :grouphug::grouphug::grouphug: Sorry this happened to her. Years ago, after my son came out of a coma with some neurological deficits and was dx'ed with a rare liver disease, someone also suggested he apply to Make-A-Wish. It got declined by our specialist as his disease was not fatal. As hard as it feels, try to keep one foot in front of the other with setbacks like this. It is so hard. You both are in my prayers! Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted April 14, 2011 Share Posted April 14, 2011 I'm so sorry! I'll pray for you and your dd. :grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted April 14, 2011 Share Posted April 14, 2011 (edited) *** Edited February 19, 2023 by J-rap Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 14, 2011 Author Share Posted April 14, 2011 (edited) Thank you all. She cried herself to sleep and now she's up and excited to move ahead and try the next wish-granting place that was suggested. I LOVE her resilient spirit! Me. . .well I'm feeling a little better too. . .someone posted this Russell Crowe pic in another thread...and he seems to have some pain-numbing side effect :D Praying that some unexpected delight comes her way! Absolutely! What a beautiful thought! :001_smile: Thank you! Edited April 14, 2011 by *~Tina~* Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 14, 2011 Share Posted April 14, 2011 I was going to suggest another wish organization or talk to the doctor about this. My girls were recently both qualified for wishes. My 14dd went on her wish in March and my 15dd will likely go in Sept. or Oct. for her wish. One thing that helped me is that I have a very good relationship with the doctor's head nurse and I called her and gave her a heads up about our application, etc. My girls have rare mito issues with seizures and other issues. It is degenerative but not nec. terminal---so much is just unknown since they don't have any other kids known with the combo mine have. Quote Link to comment Share on other sites More sharing options...
plain jane Posted April 14, 2011 Share Posted April 14, 2011 :grouphug: I'm sorry to hear this, Tina. How disappointing for your dd, and I'm sure your mama heart is just aching for her. :( I'll pray that something good and wonderful will come out of this decision and that there's something better out there waiting for her... and your family. Quote Link to comment Share on other sites More sharing options...
Beatusduo Posted April 14, 2011 Share Posted April 14, 2011 :grouphug: I read your post and it just stuck a cord with me. I will pray for you and your daughter. It sounds like she has a strong spirit and she will overcome her obstacles. I am familiar with seizures and can say that you are in good hands with the CLeveland Clinic. Quote Link to comment Share on other sites More sharing options...
cjbeach Posted April 15, 2011 Share Posted April 15, 2011 Oh I am so sorry, that's heartbreaking. Prayers and hugs for her (and you)! Quote Link to comment Share on other sites More sharing options...
specialmama Posted April 15, 2011 Share Posted April 15, 2011 :grouphug: Poor sweety... praying for a special something... Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 15, 2011 Author Share Posted April 15, 2011 I'm continuing to pray for something special for her too. She had her hopes high and her "wish" in heart ready to go! Everything has been an uphill battle for her and she's been through so much over the years. It absolutely breaks my mommy heart. :crying: She's getting to the age where she realizes she won't be able to drive. In the past couple years she began to lose vision during some of her seizures, med's have not provided relief - plus she's very sensitive to them and many make it worse (not to mention many other side effects), evaluation at Cleveland revealed she was not a candidate for resective brain surgery, we've done the ketogenic diet, and I could go on and on with our journey. . .she just struggles in so many ways that impact and will continue to impact every area of her life that it's hard to reconcile with. And when others can't "see" the disability, they don't get it. Not at all, but I won't go there tonight. :001_unsure: This disappointment just revived the grief aspect of it all and I know from experience that this too shall pass. We'll keep praying for that unexpected delight to come her way! :) Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted April 15, 2011 Share Posted April 15, 2011 :grouphug::grouphug: I'm so, so sorry for your dd and for you too. How disappointing. I'm praying for both of you and for something special for her. I don't know if any of these even provide scholarships, but do you have a therapeutic riding facility near you? I think she would probably benefit greatly from this. Another thought that comes to mind is there are dogs which are specially trained, or have the natural ability, for people with seizures. They warn the person when a seizure is coming and keep watch over them. It gives someone much more freedom and independence knowing they would have warning and will not be alone. :grouphug: Quote Link to comment Share on other sites More sharing options...
5LittleMonkeys Posted April 15, 2011 Share Posted April 15, 2011 :grouphug: How frustrating for both of you. Isn't it amazing how resilient our little dc can be though. I'm with the others in praying for a wonderful surprise to come her way. Quote Link to comment Share on other sites More sharing options...
nelewaf Posted April 15, 2011 Share Posted April 15, 2011 :grouphug: My best close to my heart prayers are being said now, and many more later tonight.....have Faith ......be Strong......:grouphug: Quote Link to comment Share on other sites More sharing options...
AngelBee Posted April 15, 2011 Share Posted April 15, 2011 :grouphug: Praying Quote Link to comment Share on other sites More sharing options...
Beatusduo Posted April 15, 2011 Share Posted April 15, 2011 Tina, I can feel the frustration in your words. I can relate with your daughter, since I spent about 20 years on that journey. I was a candidate for surgery. There are so many things I wanted to reply, if only we were face to face. It is exhausting to look forward and go day to day. Sometimes your ready to face it and other times you just want to ignore the whole thing. All I can say is keep up your strength for your daughter and more :grouphug: You can pm if you want, or just know that there are others out there that do understand. :001_smile: Quote Link to comment Share on other sites More sharing options...
linders Posted April 15, 2011 Share Posted April 15, 2011 She must be so disappointed. Praying that another organization provides support! Quote Link to comment Share on other sites More sharing options...
Tammyla Posted April 15, 2011 Share Posted April 15, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
unsinkable Posted April 15, 2011 Share Posted April 15, 2011 Tina, I'm sorry! :grouphug: I hope the next org. is able to work with your DD and family. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 15, 2011 Share Posted April 15, 2011 Can you discuss with the agency what made her not qualify and maybe clarify that with the doctor? Some clarification just might help her qualify. Just like with insurance, exactly how you word things can really matter. You might also be able to reapply in a year or so, esp. if anything changes at all. I applied for my daughter when she was about 7 and she didn't qualify, at 15 though she easily qualified--some diagnosis, etc. Quote Link to comment Share on other sites More sharing options...
merry gardens Posted April 15, 2011 Share Posted April 15, 2011 Our daughter has a refractory seizure disorder and some related developmental issues, and during our trip to the Cleveland Clinic a while back someone suggested a wish granting organization to us. Well. . .after waiting a month, we learned today that upon reviewing the specific criteria, her neurologists felt that she did not qualify. Now my girl is crying her eyes out. She is so disappointed and I am so disappointed for her. :crying::crying: Would you please pray for her? Her heart is broken right now. She's had such a tough time with EVERYTHING and I wanted this SO much for her - for her to have this something special just for her, to know that people care, to know that with all the struggle there are moments of light. The seemingly "hidden" disabilities seem to be discounted by the world in so many ways, but they are real and they are life altering for children and their families. Sigh. . . They did give us the name of another organization to contact, so prayers in that directions are appreciated as well. Prayers for your daughter and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 15, 2011 Author Share Posted April 15, 2011 Can you discuss with the agency what made her not qualify and maybe clarify that with the doctor? Some clarification just might help her qualify. Just like with insurance, exactly how you word things can really matter. You might also be able to reapply in a year or so, esp. if anything changes at all. I applied for my daughter when she was about 7 and she didn't qualify, at 15 though she easily qualified--some diagnosis, etc. I emailed this morning to try and clarify why she did not qualify. The program manager told me the director was out and would contact me Monday. :tongue_smilie: I spoke to the nurse at the neurologists office yesterday who explained to me that they way the form they send them is worded there are only specific conditions noted that fit the criteria and refractory seizures isn't one of them. I'll followup and try to learn what criteria kept her from qualifying. It's so disheartening. I felt a bit better for a while yesterday, but as the night went on, my frustration grew and I woke up irritated about it this morning. Ugh. :001_unsure: Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 15, 2011 Author Share Posted April 15, 2011 :grouphug::grouphug: I'm so' date=' so sorry for your dd and for you too. How disappointing. I'm praying for both of you and for something special for her. I don't know if any of these even provide scholarships, but do you have a therapeutic riding facility near you? I think she would probably benefit greatly from this. Another thought that comes to mind is there are dogs which are specially trained, or have the natural ability, for people with seizures. They warn the person when a seizure is coming and keep watch over them. It gives someone much more freedom and independence knowing they would have warning and will not be alone. :grouphug:[/quote'] We are fortunate in that she generally has an "aura" at seizure onset (seeing flashing rainbows, spots of color, etc.) She has a Yorkie, not good at detecting anything, but loves her much :) I don't know about any therapeutic riding stables, I might check around. Tina,I can feel the frustration in your words. I can relate with your daughter, since I spent about 20 years on that journey. I was a candidate for surgery. There are so many things I wanted to reply, if only we were face to face. It is exhausting to look forward and go day to day. Sometimes your ready to face it and other times you just want to ignore the whole thing. All I can say is keep up your strength for your daughter and more :grouphug: You can pm if you want, or just know that there are others out there that do understand. :001_smile: Thank you so much. It is just as you say. My heart just aches for her. Yes, and as much as the prospect of surgery was frightening, it gave us hope there for a while. They did every test imaginable, even some in experimental stage, and just couldn't pinpoint a single focal area with enough precision to deem her a candidate. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 15, 2011 Author Share Posted April 15, 2011 Thank you all for the continuing prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
Beatusduo Posted April 15, 2011 Share Posted April 15, 2011 I will appologize in advance if I am asking too many questions. If so, please don't answer. You say that your dd has done many tests and they were unable to pinpoint the focal point. Has she gone through the 3-5 day diagnostic video/EEG test? Has she found a trigger for the seizures? Food, stress, fatigue, etc. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted April 15, 2011 Author Share Posted April 15, 2011 I will appologize in advance if I am asking too many questions. If so, please don't answer.You say that your dd has done many tests and they were unable to pinpoint the focal point. Has she gone through the 3-5 day diagnostic video/EEG test? Has she found a trigger for the seizures? Food, stress, fatigue, etc. Our local neuro thought she'd be a good candidate for surgery, which is why we traveled to the Cleveland Clinic for evaluation. However, her case was not clear cut as originally thought because the suspected place of seizure origin is in the area responsible for vision and language and they could not definitively determined a precise focal point. The neurosurgeon also said the success rate drops to 50- 55% in this particular area (occipital-temporal region), and comes with a 100% risk of loss of peripheral vision. Plus, she'd still have to takes anti-epileptic meds indefinitely. She went through extensive testing to determine whether or not it may even be an option for her at any point. During our 8-day stay, she had a continuous video EEG, baseline SPECT, MRI, CT Scan, Ictal Spect, PET Scan, visual field test, lab work, and a MEG. This information was pulled together and presented and reviewed by the patient management team. Triggers - stress (mostly seizure related!) and tom...but much more often than not, there is no identifiable trigger. Like today, we were leaving our hs group's Easter Party, she had a seizure as we were walking across the parking lot and could not see at all. Imagine how scary that is for her. :crying: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted April 15, 2011 Share Posted April 15, 2011 Make sure you tell them what you told us......8 days of testing and no treatment options available, the frequent seizures and how they affect her, her need for meds, the diets and other things you have tried. They might see the word seizures and say NO but in reality there are so many levels and types of seizures that she might qualify due to the extreme impact on her daily life and future. This is SO tough. It just doesn't make any sense (to a sane person but parents of special needs kids aren't sane :-) ) to sit here wishing that your child would qualify for something like Make A Wish. If you live it though you understand the hardships and just wanting your child to have a nice, fun filled week to forget their issues. I remember crying when they first told me that my daughter didn't qualify for a wish and then recently crying when she did. Quote Link to comment Share on other sites More sharing options...
Greta Lea Posted April 15, 2011 Share Posted April 15, 2011 How heartbreaking! Quote Link to comment Share on other sites More sharing options...
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