Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Thursday, April 3, 2014

I threw a tantrum.........

Last month we saw the Geneticist Dr T. 
I LOVE him. 
He diagnosed our Molly over 15 years ago. (Along with her child Psych Dr R we LOVE him too!). I asked Dr T if he remembered Molly/us. He did. :o) 
He wrote the nicest letter/summary of our visit with Mercy! Did I mention how much we LOVE him? :o) He is so supportive!

On his recommendation Mercy saw the Cardiologist, had a Scoliosis x-ray and a kidney ultra sound. All good! Praise God!!

We need to watch for tumors. Anything unusual- could be the sign of a tumor. Oh my how vague can that be? We pray that there are none and we pray that if there are the Lord will show us a sign from her!

Dr T did not recommend a Neuro, even tho I told him we were seeing one. He had the feeling a Neuro would not be any help. I found that interesting, because I shared with him that one Neuro had already rejected taking Mercy as a patient. But Children's Hospital said a Neuro could come there to see her. (Children's is 75 miles away, in awful traffic.) I told Dr T I was confident Children's would help us. And since the only pediatric Vascular Specialist also works at Children's- surely they could work together. He suggested we stick with Children's then.

Two of the boy's with difficult "little men surgeries" used Children's Hospital Drs and we loved them! They really understood us.

Yesterday Tom took Mercy to the much anticipated and awaited Neuro visit. And it was awful. They left at noon and returned at 7 p.m.

The Neuro suggested~ stopping Tylenol because long term use may eventually cause pain, try to figure out where the pain really is because Vascular malformations do not cause pain! When we were told by the Hematologist that they can cause pain, plus we know her Thalassemia causes her pain. Neuro suggested we try to "find" the pain first?? Neuro said we can't test for seizures because Mercy's non-verbal? Neuro said the pain may really be "behaviors" so maybe Mercy should go back on Risperidone until a Psych can see her? (The Risperidone by the last family was said to be started for sleep- but then it was upped to 3 doses a day??- she was then given 2 mental illness diagnosis' which we find not to be true.) Neuro thinks she should go to Public school instead of Homeschool getting her home based therapies- when we know school will ask us to medicate her to stop her screaming, and we don't think that is the answer. That's what Public school did with Samson after they locked him in the padded time out room and he went crazy. He never goes crazy! So we did try meds with him, but they made him sick, and there were no changes at school, so we quit the med and by the next year we decided to just take him home and we home school him successfully. 

We have lived with Mercy over a year now. Every Dr has mentioned Behaviors. Yes she has behaviors. But how can we know what the Behaviors are and what aren't Behaviors; when we can't get help with her medical concerns first!!! Goodness, we aren't making things up! Why are Drs more eager to accept "Behaviors" than our concerns?

Poor Tom- 
I'm ashamed to admit I threw a tantrum. I cried and yelled in frustration. My hopes had been too high. 
Darn it I LOVE this little girl.
And no one is listening to us. And how can we be successful in raising her without more Dr support??!!
This is not the kind of child you can raise without extended medical help!
How can these Drs use the information from her past (described as "behaviors") against her; when none of those people lived with her longer than a year. None had ever committed to caring for her, for her whole life. 

But we have. 

And we don't understand why the Drs wouldn't appreciate our determination to save a child. Why are they more ready to accept the negative past Behavior and not the positive behavior we tell them she has now when she's pain free? Why does she fall through the cracks? 

Well we do have Dr T and the Hematologist on our side. And maybe her pediatrician (who is the same age as my oldest daughter) has come to have an "understanding" with us, but she tends to side with the other Drs if she has to choose. Altho she does admit~ we are the parents. Meaning we can try things we see fit. And I appreciate that. Because we will try anything to help her.

Because we have been the last hope of a family for Mercy. We have fight for her needs, we learn/study/research everything about her conditions, we re-arranged our lives to watch her closely to "see" what she wants/needs, we listen to her non-verbal communication, we search for the best medical help for her, we saw her in pain and responded, we saw her respond to Tylenol as a huge help in relieving her pain. We continue to read and reasearch so we can tell the Dr exactly what we see, what we know/think she needs.     
We still don't have an appt with the Vascular Specialist. Right now I don't have my hopes up about his help. But Dr T did say he'll be able to tell us the seriousness of the condition or if we do not need to worry. 
Other than that Tom and I feel like we have done a lot for her with the help of the Hematologist and Dr T the geneticist. I'm thinking maybe Dr T can tell us if the Pain Center here takes children. Or if there is a Pain Center for children?

We won't give up this fight.

6 comments:

  1. you are absolutely incredible - thankfully she has you and your husband on her side advocating for her.

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  2. Praying for perseverance for you!
    God will give you the strength to keep advocating. You're doing great ;)

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  3. If you are not doing it already, I would log behaviors before giving Tylenol and after. Maybe take a few videos to show how it helps her. It makes me so mad that some doctors do not take pain seriously, even with adults who can verbalize their problems. If you can, I would also print out info about Thalassemia as well, and bring it to every doctor's visit. Make sure the info is from a reputable site, so the doctor can not give you the "you cannot believe everything you read on the internet" spiel. Hopefully when faced with logs of pain and certain behaviors going away after tylenol, how can they possibly doubt you? With rare cases like Mercy, these specialists might not have seen anyone like her before. So they just want to treat her like any other child, and they can't! I hope and pray that you will find answers and help for her soon!

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    1. FANTASTIC advice Cherbos!! After she came home we printed off the information on pain for Thalassemia and Vascular Malformations. But your video idea, of videoing her with and without Tylenol is an EXCELLENT!! Thank You!! (((HUGS)))
      And yes..... her condition is rare, the Neuro knew nothing about her Sotos, let alone the things non-Sotos related.

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  4. Love your courage and determination! I have several special needs kids but I have help at night AND they go to publec school. My life is a walk in the park compared to yours. I wish we were closer so I could help. God bless you for loving these kids.

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