The plan from Dr. G
Dr. G's nurse called me today to discuss the potential plan. She said we had two options: we could bring Hunter in for an appointment on Friday to meet with Dr. G, or we could do lab work first and then schedule an appointment so we could review the results. She said that in talking with Dr. E, he wanted to fill in the gaps. We have had many procedures completed, but there was one test in particular he wanted to run.
It is called NMDA. It stands for N-Methyl-D-aspartate receptor.
From the web: Patients with NMDA-receptor antibody (targeting the GluN1 [NR1] subunit of this ionotropic glutamate receptor) have a fairly stereotyped neurological disorder, as described by Dalmau and colleagues. This disorder often develops in several stages. Prodromal symptoms include headache, fever, nausea, vomiting, diarrhea, or upper respiratory tract symptoms. Shortly afterwards, patients develop psychiatric symptoms and many initially come to the attention of psychiatrists. Anxiety, insomnia, fear, delusions, mania, and paranoia frequently occur; drug-induced psychosis may be suspected. Other behavioral changes include social withdrawal and stereotyped behavior. Amnesia and an unusual language disorder (noncortical aphasia) are common. The behavioral changes in children may be less specific and include temper tantrums and hyperactivity. Neurological disorders including seizures and dystonia are frequent, and may be the presenting symptom. After these initial symptoms, in both adults and children, decreased responsiveness ensues. Movement disorders include oro-lingual-facial dyskinesias, generalized chorea, oculogyric crisis, dystonia, and rigidity.
So not all of the symptoms fit, but several do. I actually called the nurse after we initially talked, because the first article I read did not sound like Hunter at all. She said that it is a relatively new test (2007), and there isn't a ton of literature on the web. They see several children in their clinic with this receptor antibody and their behavioral changes vary significantly.
So we decided to head to Children's today for a blood draw. They also ran the ASO's for strep to see his titer levels.
I also questioned her about several other concerns. I wanted to know if Dr. G was more of a researcher, or a clinician, since the initial agreement to "take our case" raised a slight question. She said that he is primarily a clinician, but does devote a portion of his time to research. He started the Children's section of the Neuroimmunology Clinic 6 years ago due to the increased demand for child-related neuro-immunological issues.
I also questioned the use of spinal taps/PET scans for diagnostic measures. She said that they always start at the least invasive (the blood draw) to fill in the gaps. They would save those procedures for last resort.
And my final question...if the blood indicated this receptor antibody, what would we do about it? She said that in their clinic, they administer autoimmune infusions (not exclusively IVIG), but mainly the intravenous route.
She reassured me that no decision had to be made today, that we didn't have to agree to anything we weren't comfortable with (even the blood test), and said that their main goal was to help our son (I think she sensed my hesitation and skepticism).
The results will be back within 10-14 days, and we will then meet to discuss the results and possibly a plan of action.
Praying, once again, for clarity, open mindness, and trust in the doctors who have been given the gift of helping children.
"Listen closely to my words and keep them within your heart; for they are life to those who find them and health to a whole body."
Proverbs 4:20-22
It is called NMDA. It stands for N-Methyl-D-aspartate receptor.
From the web: Patients with NMDA-receptor antibody (targeting the GluN1 [NR1] subunit of this ionotropic glutamate receptor) have a fairly stereotyped neurological disorder, as described by Dalmau and colleagues. This disorder often develops in several stages. Prodromal symptoms include headache, fever, nausea, vomiting, diarrhea, or upper respiratory tract symptoms. Shortly afterwards, patients develop psychiatric symptoms and many initially come to the attention of psychiatrists. Anxiety, insomnia, fear, delusions, mania, and paranoia frequently occur; drug-induced psychosis may be suspected. Other behavioral changes include social withdrawal and stereotyped behavior. Amnesia and an unusual language disorder (noncortical aphasia) are common. The behavioral changes in children may be less specific and include temper tantrums and hyperactivity. Neurological disorders including seizures and dystonia are frequent, and may be the presenting symptom. After these initial symptoms, in both adults and children, decreased responsiveness ensues. Movement disorders include oro-lingual-facial dyskinesias, generalized chorea, oculogyric crisis, dystonia, and rigidity.
So not all of the symptoms fit, but several do. I actually called the nurse after we initially talked, because the first article I read did not sound like Hunter at all. She said that it is a relatively new test (2007), and there isn't a ton of literature on the web. They see several children in their clinic with this receptor antibody and their behavioral changes vary significantly.
So we decided to head to Children's today for a blood draw. They also ran the ASO's for strep to see his titer levels.
I also questioned her about several other concerns. I wanted to know if Dr. G was more of a researcher, or a clinician, since the initial agreement to "take our case" raised a slight question. She said that he is primarily a clinician, but does devote a portion of his time to research. He started the Children's section of the Neuroimmunology Clinic 6 years ago due to the increased demand for child-related neuro-immunological issues.
I also questioned the use of spinal taps/PET scans for diagnostic measures. She said that they always start at the least invasive (the blood draw) to fill in the gaps. They would save those procedures for last resort.
And my final question...if the blood indicated this receptor antibody, what would we do about it? She said that in their clinic, they administer autoimmune infusions (not exclusively IVIG), but mainly the intravenous route.
She reassured me that no decision had to be made today, that we didn't have to agree to anything we weren't comfortable with (even the blood test), and said that their main goal was to help our son (I think she sensed my hesitation and skepticism).
The results will be back within 10-14 days, and we will then meet to discuss the results and possibly a plan of action.
Praying, once again, for clarity, open mindness, and trust in the doctors who have been given the gift of helping children.
"Listen closely to my words and keep them within your heart; for they are life to those who find them and health to a whole body."
Proverbs 4:20-22
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