Dr Nath NJ Clinic

[Kaiden'smom]

Hi, just found this site. My son is 7 weeks now, we are driving from Michigan to NJ for Nath's clinic on the 14th.
We heard he's the best from our OT. Any comments from anyone who has already seen him?
Is anyone else going?
Anyone know what to expect?

My son has good a good grasp, and has gained a little motion in his shoulder, but that's about it. Sometimes his arm moves a little when he cries.

[Cole's Mommy]

Hi Kaiden's Mom,
I am glad that you found this site. (However, I am sorry that your son has an injury that brought you here.)
You are so good to start researching and questioning early. My son is now 8 months old and we are still making trips to find the doctor/procedures that are best for us...which could be a concern if nerve surgery is necessary. Weeks after birth, we too heard about doctor Nath and decided to have the mod quad surgery with him...however, 3 weeks before surgery, after hours of fighting, we were informed that our insurance would not cover the surgery. (Just something for you to look into before waiting like we did.)
There are many postings on this site about Nath and many other doctors. You can search the forum using key words or go to the resources link to find other doctors.
I'm sorry that you have not had any responses. You can email me personally if you would like and we can talk on the phone as well.
I have had many mommies reach out to me from here and if I can do for you a little of what they have done for me, I would love to.
Nicole

[Kaiden'smom]

Thanks, do you mind my asking why they wouldn't cover the surgery? That's a scary thought. So far mine has already tried to deny the PT, the said that the diagnosis code isn't one that the cover. The therapist said they's see if they can rebill it to get it covered. I did find out today that our state has a program called early on that covers PT & OT till they are 3, so I'm hoping he'll qualify for it. I'll be calling on Monday to set up the evaluation. I'm excited and nervous to see Dr Nath. I can't wait to get his treatment going, but I'm also nervous about what he will say and what treatments he will need.

[Mare]

Hi Kaidens Mom
Welcome I hope we can help you find the answers your need. My son frankie is 14yr old lbpi and I still get most of my info here. To be honest I think theres more info here then in a doctors office since we cover the entire US and other countries. Frankie will be seeing Dr Nath on the 13th he had mod quad in 2006 with Dr Nath and needs a recheck. While your here and have traveled such a long distance you might want to check out Dr Kozin at Children's Shriners Hospital in Philly only about 1 hr away they will give you a complete examine and you will see a whole team of doctors and its free. With Dr Nath although he is good his doesn't spend but 15 min with you just look at the schedule and its a hotel not a hospital so he can't do an MRI, EMG or any tests a new bpi baby needs. Also insurance is an issue some say there insurance doesn't cover him others say he didn't except there insurance we have AETNA and did have some problems getting it covered but Frankies PCP handled that. If you want his info you can email me at Tinny61@aol.com.

[Cole's Mommy]

BC/BS of NE said they wouldn't cover because they said that the same surgery (mod quad) was performed by many other doctors for a fraction of the cost.

In NE, birth to 3 year olds can receive services through the school district...for free! Cole has an IFSP (Individualized Family S? Plan.) That might be what your "Early On" program is...but you can also call the special education department of your school district, as well.

I know your feelings of excitement and nervousness. Taking everything one step at a time has made things a little easier for me...also enjoying our precious little ones...you can't beat that!

To find personal email addresses, just click on their blue user name... Mine is nbennett@paplv.esu3.org.

[Matt's Dad]

Kaiden's mom,

Our son has been a patient of Dr. Nath's for 6 years now.
We will be there on the 14th for a 2:30 appt.
Any questions, feel free to shoot me an e-mail.

[Adrienne]

Hi Kaiden's Mom,

You've come to the right place for support and information, and I hope I can give you a few more options. Feel free to e-mail me if you've got more questions or someone to talk to!

Our son Christopher turned 2 on Jan 1, and the injury was to his left arm/shoulder. (I'm pretty sure he had a c5, c6 and c7 injury). Fortunately, my husband and I are both rightys, so the odds of him being a lefty are slim. He always had motion in his fingers and was able to grasp, although he kept fisting, meaning he held his thumb. Through therapy, this has pretty much disappeared. When he was born, he had absolutely no motion in his arm. We started OT pretty much when he was about 2 weeks old and have been going since.

Christopher has problems reaching to the top back portion of his head, to the back (external rotation) and he keeps his arm out when he uses his hand to feed, which we're still working on.

I'll start with the history...

Although Nath is extremely popular for his BPI work, we had heard mixed reviews, from people on here, and from the other doctors we saw, and we decided to rule him out.

Originally, Christopher was scheduled for primary nerve surgery with Dr. Grossman/Price in NYC, but something sent a red flag to both my husband and I and that's what started our East Coast tour of doctors. We both felt that he was going to go in there, and do nerve transplants whether he needed it or not, and that didn't sit well with us. We saw Dr. Peter Waters at Boston Children's who we liked and said to do nerve surgery on him was a big mistake, especially since he's got movement in his fingers. His approach was to do aggressive OT and PT and he would re-evaluate him around 2 years to see if he would need surgery. (He was also very adamant about not having nerve surgery that he was going to write to Grossman to understand why he thought Christopher would need transplants, which we thought was interesting, and alarming that one doctor would advise another not to do a surgery.) My husband and I thought 2 years was an eternity away at that point, so we went to see Dr. Alan Belzberg out of Johns Hopkins. Dr. Belzberg is a neurosurgeon where Dr. Kozin, Dr. Waters, Dr. Nath are all orthopedic/plastic surgeons. We felt that if a nerve specialist said the baby would need nerve transplants, then it was inevitable. He was very patient with us and sat and watched Christopher for over 2 hours, answering each and every question, concern, worries we had, and he had a game plan, if this didn't work, then we'd go to plan b, and if that didn't work, plan c, etc. In fact, he's still tracking his progress presently. Dr. Belzberg also felt that since he had movement in his fingers, that nerve surgery was out of the question. He said that there was a "cookie test" out of Toronto to verify nerve surgery, and that if Christopher passed it, then he was out of the woods as far as nerve surgery went. He suggested botoxing the strong muscles to give the weakened ones a chance, and whether it was coincidence or it actually helped, we avoided nerve surgery, but we weren't out of the woods yet.

Christopher's shoulder was subluxed, meaning it wasn't fitting into the socket properly, and was pretty bad from what we saw on the MRI's. Again, we went back to Waters, Belzberg's plastic surgeon, Dr. Bruchart, and Kozin, based on suggestions from Belzberg. Again, Waters wanted to wait as did Bruchart. When we saw Kozin, a couple of things came into play. One, it was free because it's at a Shriner's hospital, two, he is the closest to us in Philly, we're in NJ, so if after the surgery we needed something, we could make it in a drive, and 3, based on Christopher's MRI, he felt that it wasn't going to get better, no matter how much therapy we did, and that why should we wait, which is what we were thinking, so we went with Kozin, who also spends a lot of time with you answering all questions and concerns, and he wants your kid to be as perfect as possible.

So in August, Christopher had an ACR - anterior capsule release. They made an incision in the front to loosen up the tight muscle, and tighten the weaker one to put his shoulder back into socket so to speak. He was in a body cast for about 4 weeks, and once he took this off, he raised his arm higher than we've ever seen, although still not totally upright.

At the 6 week follow-up appointment, Kozin felt that Christopher was still tight and didn't want to lose any benefit of the surgery, so he suggested we botox him again, which we did. It took about 3 weeks to kick in, and we see a little weakness in the shoulder, but our therapist sees improvement.

You have to be patient, because the improvements are slow. Although he's still not reaching up straight, he can reach the top of his head when bribed with putting food on his head, like cheese doodles or m&m's which we do as part as therapy. His external rotation is getting a little better as well.

We've been fortunate to have found an OT that specializes in Erb's Palsy and has a great rapport with Dr. Kozin, that if she has any questions as to why he's doing something, or she has a suggestion, they're both on the same page. I'd be happy to give you her information if you'd like to e-mail her or speak with her for suggestions.

We go back to see Dr. Kozin on the 16th and we'll see what he thinks. If he feels he's still tight, we may do another round of botox, and if that doesn't work, then we're looking at muscle and tendon transfers, which we're hoping and praying to avoid, but as you know, you only want the best for your child.

As far as therapy goes, I think it was somewhere around 21 months that we scaled back from OT/PT 3x a week to one time. We qualified for Early Intervention, which is state sponsored therapy. I know NJ and NY participate in it, but not sure about other states.

If you looked at him, you'd never know he was injured. He's very symmetrical which we're lucky for. He doesn't really have a drooping left shoulder, and his muscles are pretty even. He did/does wear an arm brace at night to keep him from bending his arm, which affects his shoulder.

A lot of what I do with Christopher, is give him stuff to reach up to, like a magnetic easel, we do head shoulders knees and toes, I stretch him, but I think the key is to let them to most of the work. That's how the muscles strengthen.

Christopher was very delayed in crawling and walking, and they said the injury can cause this, because he needs to push himself, and he couldn't do it with his left side. He started to walk around 20 months or so, and has been running everywhere since Our next concern is his speech because my daughter was speaking in complete sentences by 2, and my son is now just starting to say a few words, so we had a speech evaluation, and they suggested we do it once a week, but I think in a few months, we won't be able to keep him quiet!

I hope I've shed a little light on things, but if you have additional questions or worries or just need another mom that's gone through this, please don't hesitate to contact me. I'm happy to help

I also have a video, of before Kozin's surgery and after if you'd like to see. Just e-mail me and I'd be happy to send it.

Adrienne

[felicia]

Kaiden's mom,
Wow Adrianne gave you tons of great information!! When I started doing research on my daughter's injury, she was already 18 months old. I was too trusting and just went with what my pediatrician, neurosurgeon and PT said. When I began searching the internet, I found Dr. Nath. I was immediately drawn to all the information on his website and actually became consumed with it, spending hours reading and rereading it. I made an appointment at a clinic in Albany to see him and I was convinced that whatever he said I would do (again, being too trusting).
Right before clinic, I discovered (thankfully!!) this website, where I realized that I had more choices in drs who could help my daughter. When I met Dr. Nath, I was very taken aback at his suggestions. Not that I didn't like him, he was very kind, but I was surprised at how aggresive his suggestions were-2, possibly 3 surgeries, all within the year. Otherwise, he told me, "Your daughter is going to have major problems later on." He said there was no need to do an MRI, that he knew what needed to be done. Still, I was torn, so I thought about it some more. I made appointments with Dr. Waters in Boston (amazing man!) and Dr. Kozin in Philly and had an MRI done, which was just peace of mind for me to know what needed to be don. We ultimely chose Dr. Kozin in Philly to do Olivia's tendon transfer, which was done in Oct, for a few reasons:
cost, distance, and the fact that they did a week on out-patient OT after her cast came off. We are so pleased with the surgery and the staff at Shriners and the results were amazing.
Meet with as many doctors as you can. You will get a feeling as to what is right, and Dr. Nath might absolutly be right for you and your baby. You are certainly smart to start early. Best of luck to you.
Felicia, mom to Olivia 2 1/2, LOBPI

[Kaiden'smom]

Thanks for the info, we are also going to see Dr. Kozin while we are out that way. He got us in with only a weeks notice, I've heard great things about him. I think I'd also like meet Dr Waters, but we'll have to do that on another trip, hopefully I can work that it, tax season is starting so I'm gonna be super busy at work.

[Mare]

Glad to see you were able to get to see Dr Kozin also. The more opinions the better and if you can do it all in one trip its so much easier Good Luck Mare