PA Picnic After Effects & NEW NEWS!

[Francine_Litz]

Wow! What a day! This time I chose the best seat in the house - I ushered people in and out (sorry!) of Dr. Nath's room and this way I got to meet EVERYONE!!! How cool can that be!! We started at 9 am and finished at 6:10 with a short break for a presentation and lunch. 49 kids!! Some new families were there (fortunately and unfortunately). It was so much fun watching the kids meet each other, play with each other and just have so much fun in the pool and in the Little Gym program. The weather was awful which makes it so exciting that we now have this wonderful indoor venue.

Dr. Nath announced that they have set up a relationship with Dr. DeSouza - a top doc neurologist in NJ. Dr. Nath will come to NJ 4 times a year to this office in Morristown, NJ (north jersey) for clinic and will come a 5th time to our PA picnic - so we'll have him around more! He feels that Dr. DeSouza will be a great asset to the families in this area for followup, EMG testing, therapy, e-stim, etc. He said that over the years, Dr. DeSouza has referred a great many patients to TCH and that is followup care has been exemplary and that is why Dr. Nath decided to contact him to set up this relationship.

There are a number of families who are on the message board that are already seeing him... here's his contact information:

Dr. Trevor DeSouza
Pediatric Neurology Associates, P.A.
111 Madison Avenue, Suite 310
Morristown, NJ 07960
Tel: (973) 993-8777
Office hours are Monday through Friday from 9:30 a.m. to 5:00 p.m.

We also learned about and saw 3D CT scans !!!! UNBELIEVABLE!!! It was obvious that this scan is what the kids should be having done. It gives you a COMPLETE look at what your child looks like inside.... as if you have just been handed a plastic skeleton that copies what your child looks like inside...it couldn't be any more clear than that!

With this technology Dr. Nath has learned that there is now a "structural" reason for dislocation. In our children the acromion grows too long (because nothing is stopping its growth, when a normal ball would be stopping its growth) and it gets in the way. Of course even though I've heard this explained just 2 times yesterday, I'm not totally sure I completely understand it so Dr. Nath will be writing it up for me and sending me the jpgs so I can put it on a page for all of you to see.

He said that the "fix" for this is very easy - they actually just take a bit of the end of this bone off - very simple stuff, short splinting time, etc. It's called "acromioplasty".

He was SO happy to share this news with us. I can't wait for you to see the pictures of this....the minute he gets them to me I will have them up!

Many thanks to Tom and Trish Cirino for everything!! The place was great - the food great - the clown and the Little Gym people - the crafts were great. The Cirinos do SO MUCH to get this together. And what you might not know is that they run a GOLF outing day in the summer to fundraise to make this happen. (Their fundraising helps fund the picnic and money also goes to bpi research [many facilities], and to help families in need, and more...) Although there was a cost to the picnic that covered admittance and a portion of the food costs, the Cirinos fundraising efforts payed for the rest of the food costs, the cost of renting all of the rooms and gymnasium, the costs of the clown and the Little Gym - and the costs for all those who have a bpi. There's more than you know that goes into this picnic - it's quite an event!

They don't come to the message boards -but here is their email address if you want to drop them a note.
brachial@aol.com - Tom & Trish Cirino

Also- thanks to Nancy Birk who drove the distance (from Ohio) to support the PA group and meet with families. YAY Nancy!!

Thanks to Dr. Kozin and his group that came to meet with families - they came prepared with all different kinds of splints and more to answer questions, etc.

And thanks to Dr. Nath for evaluating all the kids and especially for bringing that tiny computer of his which showed the 3D CT scans.

Hope those who came to the picnic got home safely and had a great day!

-francine

[admin]

To the Cirinos, Francine, and all who organized and helped out at the PA picnic:
A BIG THANK YOU. My family looks forward to it every year. It is a great day at a wonderful place. I can only imagine the work that goes into the event and your kindness and hard work are much appreciated.

Thanks,
The Kirklands (Bernie, Kelly, Jamie, and Matthew)

[Allison]

A big "Thank You" to Tom, Trish, and Francine! The children had a wonderful time. What a great facility. Wish we had one in Allentown. I could'nt get the kids out of the pool. Kalista had a special bond with Sparkles the clown (she wouldnt leave the poor woman alone).
We went with our 3-D CT scans, and Dr. Nath was very pleased to view them. Even though it was stressful having them done, it was well worth it. Bradley is sheduled to have the acromioplasty done in December. I feel very positive about this proceedure. Dr. Nath felt that Bradley is the perfect candidate to have this done. He once again is dislocated posteriorly. And as Francine had mentioned about the extra bone length on the acromion, he has that as well. You can see it so clearly on the scans. This proceedure is a major breakthrough in the bpi world folks. I see light at the end of this difficult path.
I most certainly will keep everyone posted as to Bradleys progress after the surgery. Dr. Nath advised me it only takes about one hour. He will be in the Caps or the Quad splint, were not exactly sure yet for 3 weeks.
I left this picnic with much hope in my heart, and a smile on my face. Can you imagine, smiling knowing your child needs another surgery? Yes that's right smiling! Crazy huh? Not really, I look at this as an opportunity for Bradley to have a better quality of life. Thank-you Dr. Nath for your never ending dedication to our children.

[JessicasMom]

We really enjoyed the picnic and the chance to meet everyone. We are pretty new to all of this -- our baby is just 4 weeks old, but it wass great to be able to meet Dr. Nath and everyone who has been through what we are going through.

We live in NJ and our pediatrcian referred us to Dr. DeSouza who came to the hospital when Jessica was born for a consultation. Our pediatrician highly recommended him and said he was the only doctor he would take his own kids to. It makes me feel great to know that Dr. Nath thinks so highly of Dr. DeSouza and will be doing these clinics with him. Personally, we have been very happy with Dr. DeSouza so far, he takes a lot of time to listen to us and answer all of our questions. I think our first visit with him lasted an hour and half and only ended when we ran out of question to ask.

Thank you so much to Francine who has been so kind and helpful answering all of our questions and making us feel welcome -- and of course, for the info. on her website that let us know about this picnic! My older son really had a blast in the pool and it was a really great day!

Thanks to everyone that put so much time and effort into this picnic, it really was great!

Michelle

[admin]

Thanks everyone for your time and efforts! My family had a great time. Dr. Nath has also recommended that Joe Joe have acromioplasty. We're looking at going around Jan/Feb. He said that this should be his last surgery and by the time he's 6, his arm should be functioning normally. I VERY HAPPY TO HEAR THIS!!!

[admin]

A great big thanks to the Cirinos, Francine and all those who worked so hard to organize such a wonderful event. What a fantastic place. What a great thing you all are doing.

thanks again,
wendy

[Francine_Litz]

Tammie - that is such great news!! Joe Joe is SO cute! So nice to see him "as a kid" and not post surgery! I hope he had fun!
-francine

[Tammie]

Thanks Francine. He did have a great time. I had to pull him out of Little Gym and Dr. Nath promised him that after he looked at his arm he could go back. That's why he came out by himself. I think he had a crush on Snow White!LOL

[Denise_Nach]

I'm a bit confused about the "new" procedure. I have new in quotes because it is also my understanding that this procedure Dr. Nath is calling new is something they have been doing for years for rotator cuff injuries. It has always been my understanding from Dr. Nath that the reason for the dislocation was because the socket hadn't formed properly. Are you saying that he is now doing this "new" procedure instead of the capsulodisis? I thought that was the fix for the dislocations. I am really confused!

[Francine_Litz]

no - he's not doing it instead of the capsulodesis - he's doing it in combination with it.... for rotator cuff injuries this bone was addressed because sometimes the reason for rotator cuff injury was spurs on the acromion - this is different - this is because the bone is overgrowing in the space where the humeral head should be - nothing is stopping it.

I am awaiting text from Dr. Nath where he will explain it in detail.

-francine