Update, sorta

[peglem]

Brought my daughter to the ped today because I thought she had a UTI- She didn't, but brought up all these other issues she's having with photophobia and for the past few days she's had "checking out" episodes, where she just kinda falls asleep suddenly for 5-10 minutes. I don't think its a seizure because when she gets up she's not disoriented or anything. And she lays down to do it. So, I gave a long description, and Allie actually had an episode right there in the office. I also mentioned that the neuro was supposed to be ordering an MRI, but I'm having trouble getting ahold of her and don't know if it has actually been ordered. And I wondered if we could culture these sores on Allie's head- that have never completely healed in many years. And I'd like to rule out NMDA encephalitis and pituitary adenoma. So, the ped said he will call the neurologist and try to make it so we can get all this done while she is under for the MRI (don't want to waste all that anethesia on just the MRI). He's also going to talk to the dermdoc about doing a biopsy of those head wounds- also while she's under for the MRI.

 

I love our pediatrician!

[PhillyPA]

I am in awe of your pediatrician. Wow. That is fantastic! Please keep us posted. Give me the profile of your pediatrician - old or young? Married? What does his wife do? I am just curious as to this saint and what he looks like and what influenced him. You are so very lucky Peg to have this man on your side. He is fighting for you. He hasn't given up.

[dcmom]

Your ped sounds great- but, Peg, it is you who continues to fight for your daughter, and continues to be such a supportive and wonderful contribution to this forum! I am in awe of your steadfast patience and determination!

[PhillyPA]

No doubt Peg continues to fight for her daughter but without a doctor willing to prescribe the tests, drugs, steroids or whatever- it would be a losing battle. In order to fight this disease we need the help of doctors, period. This is one battle we can't fight alone. So I say it again- your pediatrician is amazing!

[peglem]

I am in awe of your pediatrician. Wow. That is fantastic! Please keep us posted. Give me the profile of your pediatrician - old or young? Married? What does his wife do? I am just curious as to this saint and what he looks like and what influenced him. You are so very lucky Peg to have this man on your side. He is fighting for you. He hasn't given up.

Funny, the last thing he said as we were leaving yesterday is that his momma didn't raise a quitter. He came back in w/ the scripts after the appointment and he was tearing up, then just hung out for a few minutes. He said this was the hard part of his job- having a patient that is suffering that he's not sure how to help. I was assuring him that everything was going to be alright- and yes, letting him know how much we sincerely appreciate his efforts for my child.

 

We've been with him for 7 years, I think he's been practicing for 12-13 years, so he's like in his 30's. He is a DO and teaches pediatric classes in a DO college. He makes sure his students know about PANDAS and post infectious encephalitis/autoimmunity, since he's learned about it through treating my daughter. He has called me just to thank me for bringing it up to him and sharing research, because he's been able to help children that he is certain would have ended up on the psychiatric rollercoaster otherwise. He is married w/ 2 children. I think his wife is a stay at homer, but not sure. I know his wife and son were having some problems w/ mood kinda stuff, and ended up getting help from a DAN doctor that they could not get through the regular medical system.

 

You're right, Philly. No matter how hard I am willing to fight for my daughter- I need the help of doctors and this man has been our angel. He's really stuck out his neck to get Allie some help. I feel like he lost his medical "innocence" w/ our daughter's case. Once he started getting negative feedback from some specialists, he begin to realize that not everybody out there has the same drive to help children that he has and it gave him an appreciation for what parents of "difficult" cases are up against. I witnessed the shift in his thinking on this over the years. I also think his difficulty in getting help for his wife and son through regular medical channels has shaped his feelings on the politics of medicine. There have been times where I was profusely grateful and apologetic about problems he's had going to bat for my child. His answer: "Ultimately, I'm accountable to God for the way I treat kids." We are blessed very much to have this practitioner in our corner...he has our prayers daily.