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:

Findings:
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.

Impression:
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!


3 comments:

  1. Erica, I think it is great what you are doing. Not only are you positive but you will be very encouraging to other families. Your family will be in our prayers. best cindy

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  2. I'm so sorry to hear all this. I wish Jack and you all the best.
    ~Pete

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  3. Erica,

    Pete sent me this. I am so sorry.

    If you all ever need a place to stay while you are taking Jack in for appointments, please don't hesitate to call! seriously, if something happens that it needs to be overnight, just call. Pete and I have an extra bedroom and bath and you're welcome.

    I hope everything is alright.

    Best,

    Angie
    alabrozzi@gmail.com
    917-455-6071

    ReplyDelete