Tuesday, September 28, 2010

A helping hand

This week will begin the long road of support services for Grace. These include Physical Therapy, Occupational Therapy, an Infant Development Specialist and a Speech Therapist who specializes in feeding and swallowing. As a vendor ourselves for the Regional Center, we've been fortunate enough to choose our own case worker and the therapists who will be working with Grace. All of whom are very experienced and making accommodations to add her to their caseloads. I don't think we could of picked a better team of clinicians to service our daughter.

On Monday, we also met with two highly regarded neurologist, Dr. Asaikar and Dr. Chretien, who specialize in pediatric neurological disorders. Dr. Chretien will be our primary physician between the two, but due to the unique nature of Grace's diagnosis both doctors will be consulting with each other throughout her treatment. Dr. Chretien is more of an on-hands doctor who has a wonderful bedside manner and comprehensible way of explaining things. Dr. Asaikar on the other-hand seems more analytical and systematic in his approach. We were told by a nurse at Kaiser that Dr. Asaikar is a brilliant doctor who can look at a patient and identify the issue regardless of other supporting evidence such as labs, EEG, MRI, etc. And based on our initial experience with him I'd say that's true, he's kinda like the Seizure Whisperer. He had a very unorthodox way of examining Grace and coming up with his own ideas regardless what's been identified before. They want to look again at NKH (Non-ketotic Hyperglycinemia), which is something Holly and I felt she had a long time ago but her labs didn't support that diagnosis. And they are also considering EIEE or Corpus Callosum. I hope to get a copy of the MRI done while she was hospitalized so they can take a look at it. For us, it's all about having a second and third pair of eyes looking at everything.

How things will work with them in the future is unknown. Since they're not part of the Kaiser system, we had to pay $350 out of pocket for the consultation. They will be contacting Grace's primary neurologist, Dr. Friederich to inquire about what tests were done and the results. They may also ask Dr. Friederich to order additional test they see fit. So if he's cooperative and receptive to doing that, then I can see all three neurologist playing a role in Gracie treatment. As Dr. Chretien put it, they view rare cases like Grace's as a Fascinoma, which is medical slang for a fascinating case. So we're hoping they will take on the case at a reduce fee due to the unique nature of it.

We also had Grace's third EEG done on Monday. As expected the results were the same. She had no seizures during the test but as soon as it was over and they removed the electrodes she had one. Honestly I don't think it would of made any difference. It doesn't change the diagnosis or treatment plan.

Her seizures appear to be continuing but they're becoming harder to recognize. Due to the Topamax, an anti-convulsive, it's harder to see them now. You really have to be focusing on her face and eyes to truly see what's going on. But just because they're not presenting as they did before doesn't make them any better. They're just manifesting in a different way now.

Her alertness level has been good and she's gaining weight. I haven't told Holly yet, but she broke 9 lbs. today. So physically she seems pretty healthy.

We also learned of a disheartening complication yesterday called SUDEP (Sudden Unexpected Death in Epilepsy). It is essentially like SIDS, but in her case it would be due to the seizures. It means that there is a chance she could have a seizure and she wouldn't be able to recover from it and die. As you can imagine this was very hard for Holly and I to hear and just added to our overall stress level. It served as a sad reminder to enjoy every day we have with her.


  1. Yay for baby steps! Breaking 9 lbs. and becoming more alert is a milestone for sure! Sounds like you have an awesome team working with Gracie, and as always, I will continue to keep her close in thought and prayer. Your precious little girl has touched my heart in ways I can't even begin to explain, and she's certainly helped me prioritize and put things into perspective. Thank you for sharing her journey with me.

  2. off topic, but I love that picture of her here! She's got rainbow hair :)

  3. Wow, you are simply awe inspiring to be able to keep up with your business and continue your mission to keep Gracie moving forward. Reaching the 9lb mark is so wonderful. When I saw the picture of Gracie, I had mixed emotions. She is so beautiful and so vibrant but seeing those wires... Keep up the faith and we are following along with Gracie's daily milestones.Blessings.