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help with diagnosis

Posted: Tue Sep 07, 2004 6:03 pm
by admin
I'm very new to the idea and understanding of BPI. My 2 1/2 yr old has a lot of complications. She was rotated 180 degrees as she was born. She was going to be a posterior delivery and was good and stuck! She had no movement in her right arm for many months. She also couldn't look over to her right side until she was close to 6 months old. She could however look over her left shoulder more then a normal person. At 6 months she learned to sit up and seemed to "notice" the right side of her body and started moving that hand and looking to her right side. No one ever mentioned BPI to me. She learned to crawl at 13 months. She had cronic ear infections from 10 months to nearly 19 months when she got tubes in her ears. She was in physical therapy from 15-18 months from low muscle tone. She walked at 19 months.

Now at 2 1/2 she is quite delayed. She's been in speech therapy that doesn't seem to be doing any good. Physically she doesn't seem to have any symptoms on her right side. She can even eat with chopsticks when we get takeout! Her head has also leveled out and it rotates normally. I'm worried about her speech and behavior the most. She's always been an extreme child from before she was born. She's very intense and very bright. She was recently tested at almost a yr behind in expressive speech and behind about 6 months in receptive speech.

Does anyone have any ideas that might help me. I feel like there is something wrong, but I can't find any answers. I've taken her to two pediatricians (neither one could answer why she didn't move her head to the right or move her right arm) and to two pediatric audiologists. I don't feel like I'm going anywhere and I need to advocate for my child. I've got an appt with her Ped. on Friday to discuss the BPI issue, but I don't know what could have caused the head issue. I assume its related to the BPI but I can't find any info on it.

Any help would be so appreciated! I need to help my little girl and don't know where to start!

Laura :)

Re: help with diagnosis

Posted: Tue Sep 07, 2004 7:15 pm
by admin
So sorry to hear of the troubles with your daughter, sounds like you are a strong advocate for her though! I'd suggest looking for a "BPI specialist" in your area. In my experience, pediatricians don't know much about BPI and all it encompasses. You might also consider going to a pediatric neurologist.

Did your child have a lot of trauma during the delivery?

Re: help with diagnosis

Posted: Tue Sep 07, 2004 7:23 pm
by cinanina
Hi!
Have you contacted a BPI specialist? There are many doctors and centers specialized in this type of injury. You have a list of hospitals and doctors at http://ubpn.org/weblinks/
I think in some cases you can send a videotape of your child to get a diagonosis.
Some pediatricians seem to be very much unaware of this particular injury. We were lucky because the ped who attended my baby at the hospital where he was born, was informed about bpi and sent us immediatly to a specialist.

Re: help with diagnosis

Posted: Wed Sep 08, 2004 10:18 am
by admin
Hi Laura

I don't post often on here but pop in occasionally. I have a little girl now nearly 7 who had similar issues with her left side namely arm, ear, eye and cheek she also has low muscle tone which has gradually improved she has speech and learning issues. I agree with the others regarding getting yr daughter to a BPI specialist.

We did when she was 1(following research and support from the UK group) after professionals saying they had no answers or no idea why she had these issues despite knowing she had a rough birth(shoulder dystocia) and it was just one of those things.

Our daughter had a CAT Scan also to rule out a stroke and or hemoplegia(although leg unaffected)to see if there was any evidence of brain damage. Scan was clear.

By the time she was 3 all prior issues with her eye, ear, face and arm had gone.


We are left with the learning issues(development delay)but she continues to make steady progress in all areas.

I hope u get some answers

J


Re: help with diagnosis

Posted: Wed Sep 08, 2004 10:31 am
by Kimberlee
Hi Laurie, My name is Kimberlee and my son Joseph was born with a BPI injury. We took him to a nuerologist and was diagnosed with Erbs Palsey. He then got us in contact with a Dr. Nath in Texas. You can read all about my son in other topics but feel free to ask me any questions you may have. kimberlee_3333@yahoo.com
Where are you from? I am in NJ and can refer you to the doctor we take Joey too.
Please have hope and know there is help ou there for you and your family.

Re: help with diagnosis

Posted: Wed Sep 08, 2004 3:51 pm
by admin
Thank you so much for the support! It means so much to me! Christine's birth was not what I would call traumatic. It was a short labor, but very long pushing phase. She was posterior and the OB turned her head as I pushed. She came out relatively quickly after she was rotated. My second childs delivery was very traumatic and she is fine now luckily.

I can't seem to find anyone in my area that can help. I live in UT and don't have the means right now to travel to another state as my husband is completing his last yr of college. I'm mostly worried about complications that occured. Her arm seems to be fine although she is about 6-8 months behind in gross motor skills. Her fine motor skills are excellent for her age.

I'll get in contact with the specialists up at Primary Childrens hospital in Salt Lake City and see if they can help. What sickens me is I did have an appt with a specialist and was on a 7 month waiting list that I cancled 2 months before the appt. Christine appeared to be making a great recovery and was using her right arm and her head was centering. Hindsight is always 20/20!

Laura :)