I have to breakup with my daughters neurologist...

Wednesday, March 16, 2016

Paloma is on her seventh neurologist in two years.  I chose our current one because she seemed open minded about not loading her up on pharmaceuticals.  She doesn't roll her eyes when I talk about using cannabis, essential oils or diet.  When I told her we were going to a naturopath in Portland she said to keep her posted on the details.

But, like them all she dismisses any concerns I have about the side effects of the meds and weaning.  When I asked her for a prescription for a pulse ox and oxygen recently she said we didn't need the pulse ox and oxygen was dangerous for at home use.  When I explained that often we end up calling 911 to check her breathing after using rescue meds and we feel we could easily do that home, she said if there are any concerns about breathing we should be calling 911.  Which I suppose I get where shes coming from, however we call so frequently and then end up in the ER for what feels like forever unnecessarily.

A month or so ago I asked her to sign off on my Make A Wish paperwork and she said, I don't know that I would call it life threatening. I was so shocked I just mumbled forget it.  She seems to have in her mind that Paloma is doing well for Dravet and therefor we are in the clear so to speak.  Meanwhile, several kids with Dravet have died recently, kids who were doing well.  She has refused to read any literature I try and give her about cannabis to educate her. She said when we began, we are on our own.  She looks the other way while we try and figure out how to do it.

I don't hate neurologist. But I don't trust them either.  After my oldest daughter suffered a traumatic brain injury and they told me she would never walk or talk again and she went on to have a complete recovery I lost faith in them.

After the first neuro we saw put Paloma on phenobarbital and looked me right in the eyes, told me it was safe and if I didn't put her on it she would have brain damage. After, the next neuro we saw told me time and again Paloma didn't have Dravet even thought I'd pointed out she had all the signs, he brushed me off for a paranoid mother.  He called me right after her first birthday and told me the news. I already knew.  After the neuro we saw in Richmond said after he found out she was on keppra, Oh I love keppra they sent my family to Disney one year, After the top neuro we saw here got angered because I refused to put her on Onfi as he suggested, because I told him many of my DS mom friends had warned me against it.  He said I shouldn't listen to them, He said it was safe.

I feel done.  What good are you to Paloma?  You write up more benzodiazepines, warn me the amount she needs now to stop a seizure could easily make her stop breathing.  Meanwhile, I research everything I can to try and not have to use them anymore. Cannabis has worked to stop them the past few times and hopefully continues. Today I used peppermint oil to stop a small one. So yeah, I'm done, I don't need you anymore.  So long...good riddance.

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