Wednesday, March 31, 2010

Our Second Opinion.

Last night we drove in to Aunt Ing and Aunt Marilyn's house in that wonderful rain storm!! It wasn't too bad until we got diverted off the Hutch and had to take a very long and scenic route. We had decided that it would be nice since the kids are on break from school to take them with us and go to the Museum of Natural History to see the T-Rex ( and other things too).

Our appointment was at 10 this morning with Dr. Jeffery Wisoff at NYU. We were EARLY!!!! I am never early, so that was pretty cool. We met with Dr. Wisoff while Jack napped the entire time on Terry's lap. We really liked him. He was very nice and informative. In his office he has a computer that faces you as you talk to him. Whatever he is looking at on his computer, you are seeing on yours, very neat. We got a somewhat similar opinion as Dr. Souweidane, but also somewhat different. Now even I'm confused!!

He wants to operate on the cyst by performing a microscopic fenestration, instead of a endoscopic fenestration. Basically, this surgery would be a little more invasive but he feels that he prefers the outcome better and has more control while doing the surgery. He also said that they are unsure of what the long term prognosis is if it is done endoscopically. So instead of just going in and putting holes in the cyst, he will go in the same place, right up by Jack's ear, and remove a piece of Jack's skull the size of a silver dollar. Then he removes the whole front of the cyst and pokes holes in the back of it. After that he also goes down through the middle of the brain to where the fluid flows, or is supposed to flow naturally, and makes sure that it is all working properly. He will replace the piece of skull that was removed and secure it with some plates that his body will naturally absorb within a year. Jack will have to spend 2-3 days at the hospital and we can stay with him the whole time. He will need subsequent MRI's at around 6-8 weeks post-op, at 6 months, 1 year and 18 months, and if all is good then that will be it!!!!
Dr. Wisoff was also a bit more honest about the PDD diagnosis. While he will not guarantee it will improve, he says that when something that big is pushing on your brain, that wasn't always so big and you reduce the pressure, then it should make a positive impact! That was the best news of the whole day!! Oh, and his brain should expand back into the empty space that will be left after the fenestration. He showed us films of other cysts, before and after, it was all VERY promising!! There is a 10% risk that he can develop fluid on his brain that doesn't drain, like it has no where to go and if that happens then he has another 10% chance that he will need that drained as well. Other then that there is about a 1% chance that anything really bad would happen, which we know isn't an option.
We decided to go ahead and schedule the surgery while we were there today. He can take us this Tuesday (after moving one surgery later). Now we just have to hope that Jack's runny nose doesn't go into anything else or we will have to postpone it. It appears that Caitlin has a little something and Liam has a cold as well. Hard to imagine that it is going to happen so fast. We have mixed emotions, but we know that it is all for the best. We need to give Jack the best possible chance at having a normal childhood and living the rest of his life with this arachnoid cyst nothing but a thing of the past.
Once we scheduled the surgery they sent us over to the hospital to have Jack's blood work done. 5 vials of blood, but he was a trooper! We had to send Aunt Ing to the museum without us because it took 2 hours for the pre-op work.
At the end of it all we got to meet Ingrid and the kids at the museum, saw the dinosaurs, the big whale and the butterfly exhibit ( with a few stops in between of course).
All 3 kids had butterfly's land on them which is a sign of good luck. We'll take it!

Thank you to everyone for all your thoughts, prayers and kind words. It is very much appreciated!

Thursday, March 25, 2010

Jack started his therapy!

Jack started his ABA therapy this past Monday!!! It is kind of exciting in a way to get it all going. So far he is only getting about half the recommended amount of ABA that he should due to lack of service providers. He is receiving 5 - 90 minute sessions a week, he should have 12- 90 minute sessions a week. His therapist is wonderful and he has really taken to her!! I think that is half the battle! Monday's are going to be the craziest day in our house I think, Jack has one 90 minute ABA session at 1, then a 60 minute speech session at 2:45, then we have parent training at 5 for 60 minutes, and to top it all off Terry has PT Monday mornings also!! And I thought we were busy before!
Other good news to report is Terry has FINALLY been cleared for his rotator cuff surgery and has a surgery date scheduled!!! He will be having his surgery April 23rd, at Hospital For Special Surgery in the city. He has waited a long time for this. It is nice that he finally has a date and he can get on with healing after being in pain for so long.
We are waiting for our next appointment at NYU with Dr. Jeffery Wisoff this coming Wednesday. It really can't come soon enough.
Enjoy the beautiful weather today! I can't believe they are calling for possible snow tomorrow!

Friday, March 19, 2010

Pictures of Jack's MRI

I was fortunate enough to get a chance to see Jack's MRI scan today. It is very disturbing. If you are upset about the images I apologize. I feel that I have committed to this blog, and will post all information as I receive it. These are 3 pictures taken with my iPhone off a computer so they are not the very best images, but you will get the point. The cyst can be seen on the left side of the skull in the photos. It is white in one photo and grey/black in the other two. The doctor says that once they fenestrate the cyst, the empty space will remain in Jack's head. His whole brain is formed and in his head, but the cyst has pushed it out of the way. So, removing it, or draining it, will stop it from growing and hopefully any pressure that it is causing on the brain will be alleviated.

Thursday, March 18, 2010

Our first opinion...

Today we went in to Weill Cornell, NY Presbyterians Children Hospital and met with Dr. Mark Souweidane. We were their nice and early this morning...... well early in the morning, but a few minutes late for our appointment!!!
Jack would have been happy just racing up and down the hallways, but he did great watching Mickey Mouse Clubhouse on the IPhone (his FAVORITE show).
Aunt Ing came with us to the appointment, we decided it would be a good to have more ears listening. What we found out was comforting in a way. Dr. Souweidane said that in a young child like Jack that is also presenting with developmental delays, he would choose to operate on the cyst. He would perform a endoscopic fenestration (fancy word for hole). Basically he would make about a 1-2 inch incision on the side of Jacks head and then poke small holes thru the skull and into the cyst. This would drain the cyst, releasing the fluid back into his body. The surgery would last 1-2 hours and he would spend 1 night in the hospital. Arachnoid cysts are filled with Cerebral spinal fluid, so draining it back into your body is ok since this is what is naturally found in your body already. Dr. Souweidane is one of only a few Neurosurgeons who performs minimally invasive (endoscopic) procedures in the skull.
The Dr. says that if Jack were older and without delays then he would not operate. They typically choose to leave these cysts alone if they are not causing any trouble. He also can't say whether Jack's cyst is causing any of his delays. It seems they will make no promise that operating on it will make any difference with his PDD diagnosis. However, the Dr. has seen a number of patients with arachnoid cysts who also had ADHD, Autism or other global delays. In other words, the procedure is sort of optional. It is all kind of confusing and trying to write it is rather difficult. What we got out of it was, they won't say it will help, but other patients who have had the same procedure and also had delays, did notice a difference, but the Dr. won't say whether it was the removal or fenestration of the cyst that did it. Given his age and the size of his cyst, it is recommended to have the procedure. We are going to see Dr. Jeffery Wisoff on the 31st for a second opinion. If he has the same answer then we will most definitely opt for him having the surgery.
The risks are obvious normal risks of surgery, but a bit more given the location of the cyst. Children with these cysts do have a higher risk of hemorrhaging but "knock on wood" this has never happened. After the surgery they will do a MRI and then a follow up MRI a few months later. After that they will do yearly MRI's for 5-10 years. Dr. Souweidane did say that he would not recommend Jack ever play heavy contact sports like football, Lacrosse or Soccer. He will always have a little more risk of injury if hit in the head, although it is only about a 10% risk. Not too bad, running or swimming sound just perfect for him!!!!

Incase anyone is wondering why we might choose to do the operation when it is not 100% necessary, well we feel that we will always be aware of the cyst. We will always worry and wonder if having the surgery would have helped him and his development. Jack fell and hit his head yesterday (very minor) and I just about had a heart attack!!! This is no way for any of us to live. So, as long as Dr. Wisoff has the same or a similar opinion, we will be moving forward with the operation.
I hope this isn't too confusing, I'm confused writing it!!! I will keep you posted on Jacks progress as it happens. He will start his ABA therapy on Monday, and we are very excited to get that all going.
Caitlin has been home sick for 2 days with a double ear infection, but seems to have made an amazing recovery. Liam, is Liam, and enjoying going to two schools and making new friends every day.

"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Unknown

Tuesday, March 16, 2010

Today I received a phone call from Weill Cornell Medical center, department of Pediatric Neurosurgery. While making a appointment for Jack yesterday they asked me to fax over his CT and MRI results so that the Doctor could review it and if need be, get him in sooner. I got a call today requesting we bring Jack in this Thursday 3/18 at 8:45 am. (in 2 days) Dr. Mark Souweidane had reviewed the reports and wants to see Jack sooner rather then later.
I have some mixed feelings about this. On one side I am happy to be getting seen sooner and will get answers much faster. On the other hand I am worried because one of the top Neurosurgeons in the country feels that Jack needs to be seen soon. Still looking on the bright side, but getting very scared. We will be traveling into Westchester to stay with Aunt Ing and Aunt Marilyn tomorrow night!! Now that is something to look forward to!

Monday, March 15, 2010

How it all began

My name is Erica, I am married to Terry and mother to Caitlin, Liam and Jack. We live in Sag Harbor, NY within close proximity to NY City and some pretty great hospitals. I am so very thankful for that! I decided to start this blog after learning that my youngest son Jack, has a arachnoid cyst in his head. I spent days googling to find very little and very conflicting information on these cysts. I am hoping by starting this blog, I can help other people out there looking for information and maybe save them some time and aggravation.
And so it began:
It is hard to even remember the beginning of Jack's journey. He was born at 39 weeks, with no complications. He weighed 7lbs. 11 oz and was 20.5 inches long. His head was 14 3/4 inches around, WOW!! Thank god he was my third! He was bottle fed from birth with no problems. At about 2 weeks old Jack developed a cough that sounded like a seal. At our next Dr. visit I mentioned it but he wasn't coughing and they said his lungs were clear. When Jack was 2 months old his head had grown too fast and we were asked to get a CT scan done to rule out hydrosephalus. I brought Jack for his scan and they said he did not have hydrosephalus, Phew!!! At almost every subsequent visit I mentioned his cough, it was not constant but happened every day. He would never cough for the Dr.!!! At one point they said he might have a soft esophagus and would grow out of it. Jack was my BEST baby, he rarely cried and was very easy. At around 8 months we started to try Jack on cheerios and puffs. He would gag and choke on them and then throw up. At his 9 month well visit they told me that he "just wasn't ready". This kept happening every time we offered Jack cheerios or puffs. At his 1 year visit (which I didn't get to until he was 14 months) I mentioned it again and they said when he wants to feed himself, he will eat. Well, that was not quite the answer I was looking for. I asked the Dr. who I would bring him to, what kind of specialist would we see. The answer, a Otolarangologist. Dr. Max April!!! He had taken our daughter Caitlin's tonsils out in March 2009, we really like him. So in October 2009, we saw Dr. April for Jack. He scoped Jack and found he had reflux. This was most likely the cause of his seal cough and the gag reflex that would make him not able to eat cheerios and the like. He encouraged us to seek early intervention for speech and swallowing immediately. He was very alarmed that Jack, at 15 months was not chewing anything.
After this appointment it was nice to hear that I wasn't crazy and that someone believed me!!! What a relief! I contacted EI and made a appointment for Jack's evaluation. A few very nice women came and did his Eval. They, at that time, did not approve him for services, but did ask us to have his hearing checked.
Back to Dr. April we went, and his hearing specialist tested Jack's hearing. Dr. April was not impressed that we were denied services by EI and he encouraged us to try again. Well, what Dr. April says to do, you do!!! We scheduled a supplemental speech eval with another specialist. This time Jack was 18 months and still not chewing or talking. Dr. Amato from North Shore Speech and Swallowing came for the evaluation. He was very alarmed by Jack's aversion to food and his lack of speech. We were finally approved for services!!! Dr. Amato recommended we get a psychological evaluation for Jack as well. He was alarmed with his delays in his social and play areas. In the meantime we started 2 hours of Speech and Swallowing therapy a week with a fantastic speech therapist, Elise Duryea.
We set up another Eval with Dr. Andrew Voughn of Up Wee Grow. He arrived to the evaluation early one Friday morning in February. Dr. Voughn spent over an hour with us that morning and when he left he shocked me with a diagnosis!! He diagnosed Jack with PDD- NOS, pervasive developmental disorder. In short it is an Autism Spectrum disorder.
Jack will start this Thursday, 3/18/10 with 18 hours of ABA a week and 2 hours of speech a week. Now if we could only find enough therapists to fill in all that time!!!
Now I have to backtrack a month. For Jack's 18 month well check I decided to switch pediatricians. I wasn't happy with our current group and heard a GREAT doctor had just started up again after having 4 kids!!
We went to visit Dr. Creighton in January and she was alarmed by Jack's large head size and his lack of speech. I told her all about his evaluations, reflux and CT scan. She recommended we see a Neurologist. We made an appointment with Dr. Gail Schuman in Stony Brook. She was very nice, and ordered an MRI (just to be safe).
On Thursday, 3/11/10 we went to Stony Brook for Jack's MRI. He had to be put under for the scan so he would stay still, poor little guy. And of course as luck would have it his outfit with NO snaps was peed on right when we got there!!! NO WAY!!! Thank God we had another outfit, with snaps, so he had to have his scan in his diaper, but they wrapped him up nice and warm with blankets. The staff were all very nice!!
The scan took about 45 minutes and then Jack napped for an hour in recovery!! Nerve Wracking!!!! Ugh, nothing like making your parents wait! He woke up pretty cranky from the scan but after some juice and milk we were on our way home.
I had to wait all day on Friday, until 5:15 pm for the Neurologist to call me with the results!
"There is an abnormality in Jack's scan", that was all I heard for a minute, I just thought he had a large head. "He has a large arachnoid cyst in his head, between his brain and his skull." Ok, I said, so is that what is causing his delays?? "No, I don't think so." said the doctor. Probably just something that happened at the same time during his development. Normally these cysts don't cause any trouble and rarely need any surgery. However, Jack's is very large and not draining back into his body properly, I need to refer you to a Neurosurgeon........
Googling was all I have done all weekend. There is some interesting information out there about arachnoid cysts, but not quite enough which is why I am starting this blog. If I can help just one other family with Jack's story, then I have succeeded.
Today I spoke to my FAVORITE pediatrician 3 times. She faxed me the MRI report, this is what it says:

There is large CSF collection noted on the right middle cranial fossa extending superiorly along the right sylvian fissure with mass effect upon the adjacent frontal and temporal lobes without midline shift. It measures about 6.1 cm in maximal transverse dimension, 9.5 cm in height and 7.2 cm in maximal AP diameter. This is likely a large arachnoid cyst. There is no diffusion abnormality. The ventricles are normal. There is no midline shift or focal parenchymal abnormality. There is no intracranial hemorrhage.

A large arachnoid cyst in right middle cranial fossa as described.

After some more googling, I have realized that this is a very large cyst. :-(
How could it not have something to do with his delays? It is pressing on the part of his brain that controls all of his issues!! Time will tell I guess.
Today I made a Neuro consult with Dr. Jeffery Greenfield at Weill Cornell Medical Center in NYC on March 26, and a second opinion appointment with Jeffery Wisoff at NYU on March 31. They are going to review the reports and maybe get us in sooner, I have my fingers crossed!! I know it will all be ok, it is just torture to wait even a day or two with no answers. But this is where the Journey Begins, hopefully all of this information can help someone out there. I will update often!