Update from New York

We’ve been overwhelmed with gratitude for all of the messages from friends (and former strangers!) praying for our little girl this week, as we traveled to New York City to see a specialist and seek some answers – the latest in a six-year journey in search of hope for “The Bird.” It’s been such a wild week that neither Lana nor I have had time to share much, so I thought I would list a summary here for those who want to know, and then a detailed report below that for those who have the interest. Thank you for standing with us in prayer. God is able!

Lily Hospital NYC 1

SUMMARY:

Lily had a great visit with Dr. Najjar and his staff on Tuesday, July 16. After examining her thoroughly and looking over her existing records, he shared that he thought she was dealing with a microscopic swelling of the brain. We knew we would do some blood testing while in the City, but he was sure enough of the diagnosis that he wanted to admit her to the hospital immediately and begin testing. She has been doing that all week, and gets out of the hospital this (Friday) evening after one last sedated exam. So New York has amounted to the hospital and subway trips to and from the hotel. The “Big Girls” flew up Wednesday when we knew about the hospital so they could help out – and so our hotel on the Upper West Side didn’t go to complete waste. We have learned not to get too excited too quickly about what we hear, but there is a sense right now that this medical team has a stronger grasp on what is happening physically in Lily’s brain than anyone we have seen in her six years of life. Dr. Najjar has given us reason to be optimistic as we head home, and of course, hundreds (thousands?) of prayers have been prayed on Lily Bird’s behalf. God is up to something!

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DETAILS:

Visit with Dr. Souhel Najjar in New York, July 16, 2013

After reviewing Lily’s records and giving a thorough physical exam, Dr. Najjar expressed great optimism that what she was experiencing was not Autism. He said, “Doctors tend to lump everything into that diagnosis because of common symptoms, but it doesn’t mean she has Autism. In fact, according to her symptoms and physical indications, I don’t believe she does. Her pathophysiology is different from Autism.”

Dr. Najjar believes that Lily indicates the presence of microscopic inflammation of the brain. This does not show up on a regular MRI, but there is lots of literature on the condition. MRI’s only show gross abnormalities. There are other tests we can do to verify.

This gradual onset of inflammation since early age is causing neuromotor impairment, compromised immune system, and delays.

He saw the iGg numbers as VERY significant (something our Austin Immunologist did not address). He agreed with her that the body may be accommodating for them in some ways, but it doesn’t mean she doesn’t need them to be up. He said the low numbers are not the problem, but symptomatic of a greater problem. He also noted that the iGe’s were elevated, which causes dermatitis. She has had some sort of rash consistently for at least 5 years.

Dr. Najjar also said she has greatly elevated levels of Glutamin, which make the “nerve sells work day and night, increasing blood flow.”

He wants to see the actual report for her neurospect (a brain blood flow scan) from 2011, as he found it very significant that her blood flow varied. It should normally be “Hot” all over or less blood flow all over, depending on activity. But she had significant “hot spots” in certain areas while there was very little blood flow elsewhere. He compared it to trying to take a test with a loud person in the room. It would be very difficult. She has parts of her brain that are “on fire” and her other areas, which may be fully functioning, aren’t operating because of the distraction. The key is to have simultaneous high and low blood flow.

While our California doctor focused on the frontal lobe, he thinks that’s symptomatic of a problem in the thalamus. “If the Thalamus is broken, nothing works right.”

He has seen very similar symptoms before, and has treated the condition. He doesn’t have a name for it. In fact he said, “I’m not worried about discovering things. I’m worried about treating them. I don’t care about giving it a name.”

The results of inflammation on the brain: affected immune system, excema, hyperactivity.

He found it interesting that Lily was on Antibiotics from 5 months to 16 months, as this may have been helping. Certain antibiotics could make the infection better.

He said, interestingly that the inflammation has varying expressions. It is often falsely diagnosed as Autism in children, but as severe depression (or even psychotic behavior) in adults.

What’s Next?

– Dr. Najjar is admitting her to NYU immediately for testing. He wants to verify his suspicion about the inflammation with an additional Neurospect, a 48 hour EEG (Lord Help Us!), and a total blood work up.
– We will have the test results back in about two weeks.
– Following the confirmation, he would like to treat her with Minocycline to reduce the inflammation. This is a drug that is often given to Alzheimer’s patients. Very few drugs will work directly on the brain, because they don’t make it through the protective blood/brain barrier.

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Some other notes:

– For the most part, Dr. Najjar agreed with Dr. Goldberg (our California doctor) that it is an immune issue, that it’s not Autism, and that we have to address the infection. He felt as though the meds she’s taking now are “fine, but only addressing symptoms.”
– He wanted to know where the Dermatologist we saw was in practice. He seemed shocked that he did not investigate further with all of the indicators. (rashes, warts, calcium like deposits under the skin) He even asked whether he was affiliated with a university, as if he was going to contact them and complain.
– He was surprised that no IV IgG’s were given. When we explained that the Immunologist had done the “dead vaccine experiment” to see if the immune system was working even with the low levels he was unimpressed. He gave a lot of doctor jargon to basically say, “of course the body will adapt to a certain extent, but they are still dangerously low.” Additionally, he was shocked that, after we received three iGg injections, they just gave up. He said giving the iGg’s subdermally wouldn’t normally work anyway, and then shrugging if it didn’t work is silly.
– At the end of the visit, Dr. Najjar said, “I want to tell you a personal story. I have a son who was given a diagnosis of Autism at a young age. Even as a doctor, my wife and I were devastated. We decided to do everything we could to help. We knew that he might always be that way, but we were going to make sure that we had done everything we could first. This past year, he graduated from High School and enrolled at NYU. He is perfectly fine.”

Update from Friday, July 19

Lily has been in the hospital since Tuesday afternoon, the 16th of July. We had to change our flight to Saturday evening, because she will not get out until late tonight.

She had a Video EEG for two-and-half days. This entails 23 wires measuring impulses at different parts of her brain while they observe/ record video of her behavior during that time. They don’t necessarily think she is having seizures, but this rules that out and gives them significant data, apparently.

This morning, she finally ended the EEG and got the connectors off. She has a sedated Neuro SPECT scan at 2PM, so she’s had nothing to eat all day and an IV – which is a dangerous combination of hungry, grumpy girl and medical equipment to pull on.

Dr. Najjar called to tell us that he has reviewed the additional reports we had delivered (there were some recent blood reports and other items he wanted to see that were not delivered with the other records we sent to him). He is more convinced that we’re on the path toward identifying the specific problem. He reiterated that she has “significant deficiencies with immunoglobulin, and this is reinforcing our thoughts.” He said the SPECT scan results will get to him on Monday, and he’ll call us Monday afternoon.

Then, when all of the blood tests and other items return in two weeks, he wants to meet with us and go over treatment options. He said there are “a couple options to choose from, and we will look at the pro’s and con’s of each. But none of them are risky.” He said that we can cover most of the treatment by phone, but hinted that he might want to sit down with us when we go over the results in two weeks – back in NYC. We will go anywhere to get what Lily needs, but we’re praying for wisdom there. Dr. Najjar has a very strong accent that makes phone calls pretty challenging, and he wants to show us the results and create a treatment plan.

Finally, Dr. Najjar gave me his cell phone number and said he would be available to Lana or I “day and night” if we needed something. He said he would make it his mission to see her get better, and promised “to give her the very same level of treatment I would give my own child.”

I can’t overstate what this means. This man is sort of a legend in the field of Pediatric Neurology, and in as a “solutions-finding doctor” in New York in general. And God seems to have given him a special affection for the Bird.