Friday, June 30, 2006

Rain, Rain, Go Away...we've had enough!! We're drowning here. It started Tuesday and has barely let up since! And it's far worse west of us. There are entire towns with feet of standing water! Part of a highway broke apart and two trucks drove into the hole and the drivers died. Poor Barbara was trying to get home from Syracuse on Wednesday and they shut the Thruway down. I spent 45 minutes on the phone trying to find her an alternate route. It seemed every road I had her turn down was closed due to flooding. She finally made it home...over 2 hours later, but home! In Albany, the Yacht Club lost it's docks with all the boats attached. There's a sight to see....a dock with 6 boats attached just floating downriver!

Gram and Buck live on the Mohawk River also. I stopped down there yesterday. It's not the worst I have seen, but darn close.

In the top left picture you can see the bike path bridge. Normally the water is about 15 feet below the bridge and only about a foot deep. As you can see, there is now only about 5 feet of clearance. In the top right picture you can see the top edge of a metal tube. This tube is about 10-12 feet in diameter. There is usually only a trickle of water running through it, but now there is only about a foot of clearance before it floods the road above it!

As I said it's not the worst I have seen, but CLOSE! Buck is hosting the family reunion on Saturday. I am hopding today's sunny weather and no rain will help the river go down a little. And Mimi...if you are listening, we need good weather for tomorrow, preferably with a breeze so I can fly my kite!!

Tuesday, June 27, 2006

Why is it so hard to get insurance coverage??? This is my dilemma these days. BlueShield is still denying Connor's visit with the neurologist in Big City in May. Below is the letter I wrote for the Level 2 grievance...hopefully this will do it since they denied my Level 1 grievance, I got smarter this time and requested a ped neuro review it...if not, it'll be $500 for our visit...ughh. Keep your fingers crossed for us.

I did not include the attachments here, but it was about 20 pages worth of research and supporting evidence. I also took out identifying info....don't want to be sued for slander!

Dear Sir or Madam:

This letter is in regards to the denial of services for Connor. The referral/case number is ####, reference number ####. I am appealing this decision. I strongly believe our situation and the medical facts support the necessity to seek Out of Network treatment at an In Network benefit level. A Family Medicine practitioner reviewed my Level 1 grievance. I feel that a Pediatric Neurologist, specializing in Epilepsy should be reviewing this case.

My family has been working with neurologists for over two years with our older son, Austin. Please let me explain his history. It was New Year’s Day 2004. We had a healthy 16-month-old little boy and I was 31 weeks pregnant with twin boys. It was supposed to be a happy time. My mother in law mentioned she noticed Austin making a strange movement. His head would dip down and his eyes would roll up. She saw it occur maybe once or twice in a 4-hour period. Within three days it was slightly more frequent and we went to see our nurse practitioner, in-network with BlueShield. She said it sounded suspicious and recommended we call a Pediatric Neurologist the next morning. She warned us that it could take a month or so to actually get an appointment. However, on the way home from the NP visit, Austin had a stronger head movement and he began to cry uncontrollably. I called the NP who suggested we go to the Emergency Room at Large Upstate Medical Center. She said we should be able to see a Pediatric Neurologist immediately.

In the Emergency Room we met Dr. KM. Until recently she was an in-network neurologist for BlueShield. She agreed his case sounded suspicious, even though we didn’t see any questionable movement at that time. Austin was admitted for an EEG the following day. The result of the EEG was a diagnosis of Atonic seizures. He was prescribed Phenobarbital and sent home. We were lead to believe this would be an easy thing to take care of and we’d have our little boy back to ‘normal’.

Within a few days, the mild, almost unnoticeable movements became violent head drops that would occur in clusters. The head drops then became full body movements. His tiny body would nearly fold in half. He soon had upwards of 100 seizures a day. He lost nearly all his speech and cognitive abilities. His MRI showed a brain lesion in his left occipital lobe. He had a spinal tap and extensive blood work. We tried changing medications multiple times. Nothing was working. The stress brought on premature labor. I was now the mom of twin boys and a 17-month-old boy that was cognitively 6 months and seizing constantly.

By March we had seen a Pediatric Neurosurgeon at Large Upstate Medical Center for the brain lesion found on Austin’s MRI. He suggested Rasmussen’s Disease and recommended we go to Big City Children’s Hospital. Dr KM agreed since she was having no luck controlling his atonic seizures. BlueShield approved our trip to Big City Children’s Hospital at an in-network benefit level.

The Pediatric Neurosurgeon at Big City Children’s Hospital felt it wasn’t Rasmussen’s Disease but an unidentified seizure disorder. He referred us to Dr. JR, a Pediatric Neurologist/ Epileptologist also at Big City Children’s Hospital (Please see attached reference material). BlueShield again approved our appointment at an in-network benefit level.

Little did we know at this time that Dr. JR would be our savior. He admitted Austin to the Epilepsy Monitoring Unit in late May 2004; almost six months after Austin’s seizures began. A week of video EEG monitoring, an MRI, a PET and two SPECTs revealed that Austin had Infantile Spasms/West Syndrome (IS), a severely debilitating form of epilepsy. The identifying features of IS are the hypsarrhythmic EEG pattern, developmental disability and seizures. (Please see the attached reference material from and Upon Dr JR’s review of Austin’s initial EEGs, it was determined that he had had a hypsarrhythmic EEG from the beginning. Dr KM and the EEG staff at Large Upstate Medical Center missed this diagnosis. With a disease like Infantile Spasms, it is critical to get an early diagnosis. The earlier the diagnosis, the better the prognosis for attaining seizure control and regaining developmental losses. However, like many neurological disorders, Infantile Spasms is not an ‘easy’ diagnosis to make, especially if the neurologist doesn’t specialize in treating Pediatric Epilepsy and Seizure Disorders. The identifying feature is the background pattern called hypsarrythmia. Most neurologists reading EEGs focus on the spikes and waves and don’t look at the background pattern. We were told this is why Austin’s diagnosis was completely missed.

Over the next two months, Dr. JR changed his medications to ones that were known for their efficacy in treating IS. By August 2, 2004, Austin had his first seizure free day in 8 months. We continued to test Austin for a possible underlying cause. In September 2004, we determined that Austin had a genetic mutation on his TSC2 gene. This gene is associated with Tuberous Sclerosis Complex (TSC), however this exact mutation has not been positively linked to the disease. Infantile Spasms, seizures and developmental delay are all symptoms of TSC. Although Austin hasn’t been diagnosed with TSC at this time, we continue to monitor him. It was eventually determined that my husband had the same genetic mutation and that there was a family history of neurological problems including seizures, narcolepsy, abnormal EEGs and brain lesions. Austin has continued to see Dr. JR for the past two years. Every time he has gone, we have obtained a referral and BlueShield has approved it. Austin is currently seizure free, but still has an abnormal EEG.

Two and a half years have passed since Austin started having seizures. Austin still receives Speech and Special Education services and will soon begin Occupational Therapy services. It has been a daily struggle to try and regain all the months of development that he lost. You can imagine the fear we felt when we realized Connor was not developing on par with his peers. Then we noticed the shakiness in his limbs. In November 2005, at 21 months of age, I took Connor to his Pediatrician’s office. She was aware of Austin’s medical history. Because we had seen no obvious seizures with Connor, we decided to pursue therapy through Early Intervention. We hoped that by giving his development a little ‘push’ things would be okay.
About a month into Speech Therapy, Connor had a major regression coupled with disturbed sleep patterns. We took him to see Dr. SB, a Developmental Pediatrician, in network with BlueShield. He determined Connor has Pervasive Developmental Disorder, Not Otherwise Specified (PDD, NOS). Dr. SB felt that in light of the family history it was important to have Connor tested for seizure disorders and Tuberous Sclerosis Complex (TSC). I have attached Dr. SB's treatment summary for your information. Seizure disorders (and other diseases, such as TSC) can lead to developmental delays and a PDD/Autism diagnosis. While we had not seen any definite clinical seizures, there are enough clinical signs to warrant looking for some of the lesser-known seizure disorders. With disorders like Infantile Spasms, and Landau Kleffner Syndrome, background EEG disorder and developmental delays can precede clinical seizures. (Please see attached report from Dr. SB and attachments on PDD from

On April 26, 2006, Connor had a 30-minute EEG at Upstate Hospital. Dr. NM read the EEG. His impression was “The EEG recording is within normal limits for age. There is no definite potentially epileptogenic activity present throughout the recording.” This says to me, that there could be something and it wasn’t clear. I sense hesitation in his findings and feel that Dr. NM may not have the clinical knowledge to accurately assess my son’s EEG (maybe I am an overly concerned mother, but I have been down this road before). Also, the report doesn’t mention if the background graphings were normal or if they were even examined. As I mentioned earlier, this is a critical element in pediatric EEGs.

According to the website for his practice, Dr. NM specializes in neuromuscular diseases. He is a participating physician with BlueShield; however, he is not approved as a Pediatric Neurologist. I have learned over the past two years that it is vitally important to see a physician who specializes in exactly what is wrong with the patient. For instance, you wouldn’t take a horse to a small animal vet. Yes they know the anatomy, and they know the basics of treatment, but they have never specialized in the care of horses. (Please see the attached reference material on Dr NM and Connor’s EEG report)

We were able to arrange a visit to see Dr JR on May 10, 2006. Austin already had an appointment scheduled and Dr. JR was able to see Connor as well. He also felt Connor’s symptoms warranted further review based on Austin’s history.

The reason I wanted Connor to see Dr. JR is I truly feel he ‘saved’ Austin. He was kind, compassionate and extremely thorough in his diagnosis and treatment. He specializes in Pediatric Neurology and is part of their Epilepsy and Tuberous Sclerosis Complex programs. He is board certified by the American Board of Psychiatry and Neurology in Child Neurology and is a professor at Renowned Medical School. He is involved in the most current research for Epilepsy and Anti-Epileptic Drug treatments. I don’t believe any of your in-network providers have credentials that match those of Dr. JR.

Dr. JR feels that there are no neurological issues at this time. However, based on family history, he recommends genetic testing and close observation. His recommendation mirrors Dr SB’s. If Connor shows any more periods of regression, a 24 hour EEG and a sleep study should be completed. It is possible that the 24 hour EEG didn’t capture night time events.
Although it appears Connor, may not have any neurological impairments at this time, I couldn’t take the chance of wasting five months of Connor’s young life having him treated by someone who isn’t aware of the family history and isn’t up to date on seizure disorders. I want Connor to receive the same level of care that you have approved for his older brother. Also, it is known that a normal EEG does not rule out Epilepsy, nor does an abnormal EEG conclude a person has Epilepsy. It requires taking all developmental and neurological factors into account as only someone specializing in this field of Pediatric Neurology can do. Please see the previous attachment from the Epilepsy Foundation’s website for more information.

I hope BlueShield will reconsider and approve Connor’s visit with Dr. JR. I wish that the Capital Region had a stronger Pediatric Neurology program. I don’t like having to travel 3 hours to receive treatment, and our family is not alone. In my two plus years experience, I have encountered many families that can’t get the neurological treatment that their children need. This is not a poor reflection on BlueShield, but a reflection on the Capital Region’s medical community as a whole. BlueShield offers 3 Pediatric Neurologists. Dr. HK is fabulous and would be my first choice. She is Austin’s secondary neurologist and specializes in Epilepsy. However, Dr. HK is not accepting new patients unless they have already been diagnosed. Even then, she only will take a secondary role because she is only in the Capital District 2 days a month. I have discussed Connor’s case with her and while she feels I have made the best decisions, she can’t ‘go on record’ as saying that because she is not Connor’s doctor. Your other two options, Dr. LV and Dr. TF, while very competent neurologists, do not specialize in Epilepsy.

No mother wishes their child has neurological/developmental issues and certainly no mother wishes two of her children have problems, however, I am facing this head on and fighting for the best care they can receive. BlueShield has always afforded our family the best care possible, please do so again. Thank you for taking the time to read through this extensive medical history. Please do not hesitate to contact me if you have any questions regarding the information I have included herein.


Tuesday, June 20, 2006

What a weekend we had!! My mom, MIL and I had a garage sale. What fun in all the heat and rain! Then I was crazy enough to offer to have the Father's Day BBQ at the house! About 30 people descended on the house about 3pm. Wouldn't have been bad if it weren't so darn hot!!

But a good time was had by all, and everyone pitched in to help. Here are some pictures. Ben is on the bouncy bounce. Aaron, Austin and Connor are in the pool. Ben refused saying the water was TOO COLD! Then there is a picture of Nana and Austin. Tried to get a picture of him with Big Papa, but by then Austin was tired and grumpy and said no.

Below is cutie Connor hamming it up in his froggy sunglasses.

I think the best part was Gram and Aunt Karen took the kids home to sleep so Jeff and I could finish clean up and unwind. It was NICE! We visited with Jeff & Nadene and Chris & Rachel. Rachel was very jealous that we had a kidless night and asked if she could share Aunt Karen with us! I said no!! Then Jeff and I went to Bumpy's. I think this is only our second trip since they've opened this season. They have the yummiest soft serve.

Below is a picture of Austin with Miss Nancy his Special Ed teacher, Mema and Nana. Today was his last day of special ed services. We are all going to miss Miss Nancy and Miss Donna. They have worked so hard over the past two years to get Austin to where he is. We couldn't have done it without them. Miss Nancy asked our family to adopt her...we're thinking about it :)

Well better run, work to do. Hope all the Dads and Grandads had a great Father's Day. Jen

Thursday, June 15, 2006

Sarah is out of ICU and doing we can only hope she makes it home for her 3rd birthday!

Wednesday, June 14, 2006

Quick update...

Austin has been approved for OT (occupational therapy) starting in the fall.

Connor had his eval and was also approved. We have decided to place him in a school program starting sometime in the fall. He will be receiving OT (and continue Speech) until then.

We are talking about also putting Ben at the school. They have a nursery school for 'typical' kids that they use as models fo the 'identified' kids. Sounds like a good idea to me. Now to work out the logisitcs of it all :)

Tuesday, June 13, 2006

Here is Ben's boo-boo. I suppose I could have cleaned his face before I took the picture :)

How cute are these two? Last night they didn't want to go to sleep and kept switching beds. Ben ended up on Austin's matress on the floor and Connor ended up in Ben's bed. Then, I went to wake them this morning and found them sharing Ben's bed :) Of course they had no blankets though!

Friday, June 09, 2006

Could everyone please say a quick prayer for Sarah...she's in the ICU on a ventilator. For more info, click on her website link to the left, sarah Carlino. Here's a pic of Austin and Sarah when she was doing better. THANKS!

So I jinxed myself...on Wednesday I said how great Ben is and that I never had anything to say about him...well he must have known I wrote that. On Wednesday we were at Gram Hill's for a cook out (well more of a cook in since it is never going to stop raining!!). Anyway, just before we are getting ready to leave he decides to 'throw himself' headfirst at a metal truck. He got a deep gash just above his right eyebrow. Luckily Fire Chief Uncle Bill was there and got the bleeding stopped, steri stripped it and off to the ER we went. 2+ hours later, they Dermabonded (aka superglued) it shut and we were on our way home. Poor kid...heck of a way to get some attention. I will try a post a pic over the weekend. He's doing fine though...he was more mad that we kept holding him down to look at it and stuff.

Connor's first day of playgroup went well. He had fun, but it was a struggle to keep him focused on what the group was doing. All part of the PDD. Hopefully with time it'll get better.

All for now...

Wednesday, June 07, 2006

Hi everyone...just a quick update and some pictures...

Austin is doing great...only two weeks to go and he is officially graduated from speech and special ed services. I can't believe how far he has come in two years. There were many times that I wasn't sure we'd get here.

Connor is talking up a storm...I actually find myself asking him to be quiet at times :) It's not always words, but we are getting there. Melissa, his speech teacher, is amazing with him. Yesterday we had a slight scare...still not sure what is going on. During his speech session, Melissa noticed a 'shiver' from him. Not sure whjat to make of it, but it sounds a LOT like what Austin did when he had his clonic seizures. We are on high alert and will keep you posted. Connor also starts his Delightful Ducks 'playgroup' today. It should be fun.

Ben is Ben...I feel bad, I never have much to say about him. He's just a cutie and my one kid with NO developmental/health issues.

Here's some new pics. Austin at his nursery school picnic and Barbara, Sharon and Abbie going to the Jr prom.

Thursday, June 01, 2006

So, as I said, it's been a busy few weeks. Going back to mid May...Cindy graduated from Delhi (, we went to Niska Day, Connor had his 6 month evaluation for therapy, we helped build a retaining wall, we met Thomas and Sir Topham Hatt and a few other things thrown in.

I'll start with a picture of baby Jessa. She's getting so big. Cindy promises she will come visit in late Summer, early Fall.

Moving along to Niska was cold and rainy, but the boys had fun. Below is a picture of Connor with the free hat they gave him. We are in trouble if he's already wearing his hats like that ;)
We got to see The Burners UK perform and then watch the $10K fireworks display. If anyone wants to check out the Burners schedule, go to, they were great! Huh Mo??

Connor had his 6 month therapy evaluation. It was depressing when I got the eval in the mail, but by the time his meeting rolled around, he had had a learning explosion. He is doing really well right now. He is making a lot more effort to talk to us and request what he wants. Also, he is learning to assert his independence (read- pushing and shoving) from his brothers. He doesn't just let them take his stuff anymore. But, he's really not strong enough to overcome them. He was trying so hard to knock Ben over, but muscle man that Ben is, barely leaned into Connor and over he went. Poor Connor...I think we need to get him started on weight training. The kid eats and eats, but he's just so skinny! So, as I said he is doing great. We have tabled the idea of putting him into a 'special classroom' setting. Instead we are putting him into a structured playgroup. The therapist, county rep and I agreed that he doesn't need the structure of a classroom, but a place of his own, away from his brothers, where hopefully he can shine. We start that next week, and Mommy gets to go!

This past holiday weekend I was fortunate enough to take some time off. I spent Thursday going through hand me downs and taking care of yard work. With all the rain we have been getting, I just can't keep up with it. Then on Friday and Sunday, we helped Jeff's parents with their retaining wall.

Saturday was the big Day Out With Thomas event at the Upper Hudson Railroad. The boys had SO MUCH fun. They got to see Thomas and meet Sir Topham Hatt. They got tattoos and played with trains and they even got to take a train ride. They had this really cool Lego Thomas also. See all our pics below.
mommy & Connor, daddy & Ben (Austin was with Mema & Bepa)

Thomas the Tank Engine

Lego Thomas

So I guess that it's for now...