New Here and Need immediate help!!! PLEASE

[ashleyscott1]

Hi I am new to this website and i need some immediate assistance.

My daughter Kaitlyn will be 4 on October 10 of this year and she was born with a brachial plexus injury. Our pediatrician referred us to a neurologist and he recomended OT and when she started to improve slightly he told me that there was nothing more he could do for me and discharged her. So i went the Childrens Medical Center in Dallas to another neurologist when she was 2 and he said that she will never be 100 % but there was nothing he could do and he recomended therapy until she was 3. I wasn't pleased with this information so I did some research not knowing anything about Erb's Palsy or Brachial Plexus injuries and I came across Texas Children's Hospital in Houston. Well not knowing any different i called trying to get in to a neurologist and when they asked what the condition was, i told them and they said that they had a specific Dr at TCH that specialized in mainly Brachial Plexus injuries.

the next month i drove 5 hours from Dallas to Houston and saw Dr. Gharboui. the first visit i was pleased with he informed me that there was a long road ahead but he didn't want to do surgery on her because she was slowly making progress and also told me that i was not doing enough therapy at home. So he recommended extensive OT and would see her in 3 months. To make a long story short i have been there 4 or 5 times and it has been the same response all times, "i'm not doing enough exercises and she's not getting any better see you in 3 months."

Well she was supposed to have a checkup on Sept 24 but due to uncontrolable circumstances i called on the 23rd and had to cancel her appt and was informed that he would no longer be seeing patients there after Oct 1st and he would refer me to someone else. I was NOT happy about this news and have been stressing ever since.

my mom googled yesterday on brachial plexus injuries and came across and article in the houston chronicle talking about how the clinic new they were closing since June and it mentioned Dr. Nath's name as a specialist. I have an appt scheduled with Dr. Nath in Houston on Oct 28th but I would really like to find someone a little closer to Dallas. Also my mom sent an email to someone and he also gave the name of Dr. Marybeth Ezaki at Scottish Rite hospital in Dallas.

I am tired of getting sent from Dr. to Dr. to Dr. and getting no response as to what needs to happen. My daughter has stopped progressing and i am desparately looking for someone to help me. We have been told that surgery is not necessary but everything that i have read in the last 3 days says otherwise. Can someone please give me some kind of advice on who would be the best suitable Dr. for my child and not give me the run around.

Thanks for reading and i look forward to your responses.
sorry so lengthy.

Ashley Scott
Dallas,TX

[hbpsupport]

I just read your posting.....before I replied to the other post. Just want to tell you to stay encouraged my daughter has seen Dr. Nath since she was 2 weeks old she has had a great deal of improvement she goes to therapy 2x's a week now and she's lifting a little above 90. Unfortunately she is scheduled for the MOD QUAD surgery on Oct. 6th. I've met so many parents who's child has had the same procedure and i've seen the great results.

Personally I assure you that Dr. Nath would definaely be able to help you and your aughter, though it may be a drive from Dallas it's well worth it. Did you send a video of your child to him? I wish you and Kaitlyn the best of luck.
Plz keep us posted on her progress!!!


Shajwanda

[ptrefam]

It is important that she see a BPI specialist. Unfortunately that usually involves travel as there aren't too many. You can search the Resources link at the top of this page and find a listing of dr by state, I think. Many of the parents with children see Dr Nath, I have also seen Dr Kozin's name mentioned by many parents here. He is in Philly I think at Shriners where the treatment is free.
Sue

[lawrey]

I am so sorry to hear that you had bad experiences with doctors! From what I've learned over the 18 months of my daughters life, is that sometimes with BPI no matter how many hours you spend on therapy and exercises, (which I'm sure you do a lot of) if they don't have the movement, they're not going to miraculously get the movement! I am not saying that you don't need to work with your daughter and that it's not a LOT of work, but I wanted you to know that even doing all you can, therapy and range of motion won't give your daughter 100% movement back. The world that is BPI is undpredictable. You'll find that most of the time, BPI kids share the same deficincies ... I say most of the time because my daughter falls out of the norm (is able to suppinate, but has a harder time pronating -- just one example).

Sorry if I ramble!!

In reference to your going from Dr. to Dr. to Dr. ... Know that A LOT of people with children of BPI have to travel to see a specialist. We live in Nebraska and travel to the Mayo Clinic in MN (about an 8 hour drive for us). We have friends who also live in Nebraska that travel to Philly to see Dr. Kozin. The thing with BPI is you need a specialist and you need to find one that you're comfortable with. This may mean that you need to travel, but believe me when you find that right fit, it's worth it! Dr. Nath is one of the most highly regarded speicialist in this field, so going to him is a great step for you and your daughter. Whether or not it's the right "fit" for you or not, I can't say, but it's definitely the first step in the right direction for getting you the answers you want and need!!!

[nkjacoby]

My goodness, I can easily see why you are feeling the way you are. I agree with the other mom's in the fact that there aren't many specialist and that may require some travel for you. For example, I live in TN and travel to Boston to see Dr. Waters. I have also heard great things about Dr. Kozin in Philly. My advice is to perhaps schedule appt. with a couple of physicians and think about the advice you get from both. That way you have two doctor's to compare and perhaps you will be able to know what steps are being recommended in your little one's case. If you would like you can email me directly to ask me any questions about my experience. Hang in there. We have all felt discouraged from time to time, but that's the great thing about knowing a network of people who have experienced these things.

[Mare]

Have an appointment with Dr Waters Nov 2 we saw Dr Kozin at Shriners and Dr Cornwall at philly children's and they said there was nothing they could do maybe Dr Waters can help him I'm afraid to trust an ortho that is not regularly seeing bpi kids afraid they will do more harm then good trying to figure it all out I had one tell me bpi was like Muscular Dystrophy

[ashleyscott1]

Thanks for all the responses. I have an appt with Dr. Nath on Oct 28th in Houston the only thing is i have to come up with $250 for the initial visit because they do not take AETNA insurance.

I am not cancelling the appt my mom said she would help if i needed it but also i am going to be checking into the Shriner hospital and get some reviews on all the doctors that everyone has mentioned to me including Dr. Ezaki at Scottish Rite, Dr. Kozin at Shriner, Dr. Nath and Dr. Watson.

if anyone else happens to know anymore BPI doctors please feel free to let me know so i can do research on them.

[swhite1]

I'd like to send you twenty dollars? Please just tell where to mail it. Hell I'm going to Dallas tomorrow and again on the 8th. I'll bring it to you.
I get my SSD in 3 weeks but I have twenty right now.
Scott


Message was edited by: swhite1

[s8n]

lolol that came outta left field... what hole you come outta brother aint seen you in a long time <<<(directed at swhite) you ever gonna fly with me??

[katep]

Honestly, I wouldn't stretch too much to get the $$ for that initial appointment. What are you going to do if surgery is recommended? That is going to be a LOT more than $250. I wouldn't start down a path that is only going to cause heartache!

Kate