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Told my daughter doesn't need to see BPI specialist until 4 months old? MommyOfTwo Posted: Sep 24, 2005 6:21 AM Reply
Okay, my daughter is now 8 weeks old and our OT and ped have FINALLY contacted each other (after trying for 5 weeks! getting a bit ridiculous there). And at our OT session yesterday our OT told us that after consulting each other the two felt that with the progress my daughter has made they don't feel the need to "rush" her to a specialist yet. And for us to wait until her 4 month checkup and see if she even really needs to see one.
They thinks she has a "classic" case of Erb's Palsy where it just needs time to heal. Right now at 2 months old she can lift her arm about 1/2 inch off the floor (when laying down). She only does it when she's very aggitated or stretching after a very long nap. Aside from that I don't see much else. I do feel a good sense of muscle tone through out the arm. The OT feels that with his observation all the nerves are still attached and (again) just needs time to heal. But if that IS the case wouldnt' she be able to more her arm a bit more by now?? She can't bend her elbow at all. She has great movement in her fingers and okay movement of her wrist.
I guess both the doc and OT feel that even if we did see a specialist the specialist wouldn't be able to tell us anything different from what the doc and OT are already telling us. That we would pretty much be paying money to hear the same thing over again.
I just don't know. I want to trust them--it seems like they should know what to do since they are doctors. But then again, it's not their baby--I almost want to ask them "please, if this was your baby what would you do?" I wonder if they would give me an honest answer--or one to placate me. *sigh* A bit confused and frustrated about this whole thing.
I just don't want to NOT take her to a specialist and find out later that so-and-so would've/could've been prevented or helped by this stage. ARGH!!!
lis
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? MommyOfTwo Posted: Sep 24, 2005 6:49 AM Reply
Also, does anyone know of a BPI specialist in Oregon? I looked on the list of specialist here but there's no one for Oregon yet. Our OT recommended Dr. Mark Shih. Hasn't anyone ever seen him?
Also, I couldn't remember the term before but it has finally come to me, the pediatrician and OT thinks my daughter's injury is just a praxis (I'm not even sure how to word that-sorry) injury. But I read on this site taht it it's a praxis level (?) where the nerves are damaged but not torn, it should heal itself and we should see improvement within 3 months. Like I posted above earlier she's 2 months old now and I don't see THAT much of an improvement. I'm just wondering if they're just stalling for time or soemthing.
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? katep Posted: Sep 24, 2005 6:59 AM Reply
Lis,
If she has finger and wrist movement, they are *probably* right that it is Erb's Palsy - only upper trunk involvement - and that it will really start getting better in the next month or two. Can she straighten her elbow (if you put her on her side with the BPI arm up, does the arm just flop or can she straighten her arm?) This will help you figure out if she has C7 involvement or not. And they should be looking for good extension of her fingers, too, and what sort of fist can she make for example.
I would definitely push for a referral to at least a local orthopedic surgeon or other specialist more familiar with BPIs who can follow and track when each set of muscles come in. This information was really important to us when we did finally fly across the country to see a top specialist when our son was 5 months old and went over his whole recovery pattern in order to determine if primary surgery was warranted or not. Most OTs and pediatricians just have not seen enough kids with this injury to know all the ins and outs. You should also think about getting an appointment set up with a specialist who can peform nerve grafting (not all do). Sometimes it is hard to get an appointment, and if she clearly recovers, you can always cancel it. If you have a surgeon locally, they might suggest you come in right away. A more remotely located surgeon might suggest you keep in contact with videos or phone description and only come in if it is looking clear that she'll need primary surgery.
Given her recovery so far, I would also really look ahead and find a doctor who can help keep track of other problems that can come along with recovery after two months. Many parents have been through these boards with kids who recovered very well after two months old, so try not to be too discouraged. But there are other muscle imbalances and bone developmental complications that might be addressed early if you catch them.
I think your gut feeling that you should be doing more right now is right on.
Kate
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? katep Posted: Sep 24, 2005 7:03 AM Reply
Lis,
It's virtually impossible to tell the full extent of nerve damage until the child recovers, or they go in for surgery. That's what is SO HARD about this injury! I *have* heard of a number of kids who had rapid return starting about your child's age... so they might be right, but I don't think they can really tell yet. I believe the best approach is hope for the best, but plan for the worst. I know Dr. Hentz is in northern california, that might not be that far from you. And there is one in Washington State, I believe. Hopefully someone will come up with someone more local for you.
Kate
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? BIGJAVSMOM Posted: Sep 24, 2005 12:10 PM Reply
Lis,
I am no expert, but I understand what you are going through. Go with YOUR instinct. MAybe a specialist would tell you the same thing, but they would also order tests to be sure. Like KAte said, only surgery can tell 100%. I know it is scary. If money is an issue, you could try Shriner's Hospital, and I believe there are programs that will help you fly to Philadelphia. If this were your therapist or peds baby, best believe that they would have already been to a specialist 8 weeks ago. Once again, go with what YOU feel. Best of luck with everything.
MArlyn
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? claudia Posted: Sep 24, 2005 12:53 PM Reply
Lis:
It trully annoys me when medical professionals get together to put a mom off. They ped and the ot are not bpi specialists. If you child had a skin problem, they would send you to dermatologist. How many bpi's has your ped seen????
You need to take your child to a bpi specialist. Perhaps you are one of the lucky ones and your child will completely recover, but you should have someone who sees this regularly tell you that.
We have a medical resources page on this website. The doctors have become so wonderful about responding to parents' questions. You can email, you can call, you can even send videos to many of them.
Obviously you are not comfortable with their "decision". Go with your gut. Remember, just because they are doctors doesn't mean they know what they are doing. In the world of bpi, you have to learn to ask, ask, ask, as many questions as you can. This injury is not well understood by many and you really have to educate yourself, to help them understand.
I don't mean to be harsh, but 8 weeks is long enough without a specialists intervention. You have been very patient, now go with that "mommy intuition" and get another opinion( or 2 or 3....). I have found that "mother's intuition" is so often correct.
good luck,
claudia
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? Guest: grandma Posted: Sep 24, 2005 1:33 PM Reply
Dear Lis,
I really have a problem with a therapist saying "take it off fast" referring to your question on taping.
You are getting very good responses to seeing a BPI specialist from the moms who have been through this.
Go ahead and ask "what would you do if this was your child?" to any physician you deal with. You have to let them (doctors & therapists) know that you are going to be forceful in finding answers for your daughter's injury. Yes, the arm looks the same as the unjured arm
at this stage, except for lack of movement, BUT changes can occur IF there is not recovery of the arm
by itself. PLEASE continue in your search for a BPI
specialist. I'm a grandma who has been through this.
May God bless you in this journey,
Grandma
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? Carolyn J Posted: Sep 24, 2005 2:02 PM Reply
Hello Lis,
I agree with all who spoke above: ALWAYS go with your Mom's gut intuition. I raised a son now age 34 (non-BPI)who was born with multiple disabilities. Your life of strong advocacy begins now. I am happy you have all of us for information and support. There is no dumb question.
Also, Shriner's in Philadelhia serves children to age 21 and it is all free. There are programs to help with airline tickets, and medical discounts are good at hotels. Lots of information on their website...staff terrific to help coordinate appointments.
Keep us informed how things are going.We are here for you and we all learn from each other.
God bless you and you daugter.
Hugs,
Carolyn J
Adult LOBPI
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? Tanya in NY Posted: Sep 24, 2005 3:52 PM Reply
I for one am truly tired of "general" practitioners (in this case the peds and OT) saying they don't think you need to rush to see a BPI specialist. They aren't a specialist, so therefore they don't know all about BPI. Hmmm...let me see...that would be the BPI specialist who is more knoweldgable in that area, correct? How many cases of BPI has your pediatrician dealt with? How about the OT? Do you want to take that chance and waste the time for possible regret later? I know I am being a bit extreme in my personal thoughts, but I am just very frustrated with providers being reluctant to make that step of doing a referral or recommendation when it obviously is not an area they deal with on a regular basis. I have seen statistics that say 30% of our kids who appear to have no deficit at age 3 months will go on to have a noticeable deficit at age 5 years. I know that we were originally steared down the wrong road for our daughter and I just don't want that to happen to another child and family if it doesn't have to. I apologize for rambling and being so blunt. Guess it's a bad day for me here.
Good luck.
Tanya in NY
(Amber's Mom, ROBPI, almost 3 years)
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? Lexijason2004 Posted: Sep 24, 2005 4:16 PM Reply
Also, there are many BPI specialists who will look at a video for an initial evaluation and will email with you and/or talk on the phone. They can better help you to decide if you need a real appointment. Dr. Nath (www.drnathbrachialplexus.com) will do this and I'm sure other parents can post the other doctors who do this as well. I would say you'll have more peace of mind if you contact a specialist and feel that you've done all that you can at this point. Better to decide you don't need a specialist, than to wish you had earlier.
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? Lexijason2004 Posted: Sep 24, 2005 4:18 PM Reply
oops...didn't mention that I am mom to Jason, lobpi, 14 months.
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? kd's daddy Posted: Sep 24, 2005 4:41 PM Reply
I am wondering if your ot even is doing the correct R.O.M. exercises. And I will bet the doc probably doesnt know what bpi stands for. I agree with Claudia and Tanya completely. Go with your gut and learn all you can about bpi. Look up range of motion exercises that should be done and look at a few of the real BPI docs and they will work with ya on a plan to get you evaluated. Dont trust any Doc or PT that doesnt make you feel comfortable. I dont.
Please get a opinion from a bpi doc and just in case start gathering all your records from the hospital and doc etc.... they have a tendancy to disappear or get altered.
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? MommyOfTwo Posted: Sep 24, 2005 8:37 PM Reply
Thanks for all your responses everyone. I think my husband and I will push to see a BPI specialist. Right now I'm trying to find one near us (we're in Oregon--about an hour and a half south of Portland). The only one I can find on the list that's close to us is Dr Kit Song. Unfortunately I can't seem to find his name on our insurance provider list (double sigh). I'll be calling their office to see if they're part of my insurance.
Katep, I really like your idea of seeing a local orthopedic surgeon who can track when each set of her muscles come in. I never thought of that before. Also, does anyone know if the OT can do this too or is it better if an orthopedic surgeon does it? Like I mentioned before our OT felt that all her muscles were there (at least that's the impression he left me with).
And once again, if anyone knows of a specialist in Oregon please let me know--I'm still on the search!
Thanks so much everyone! You guys are great!
Lis
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? claudia Posted: Sep 25, 2005 1:55 AM Reply
Lis:
I love ot and pt. I think they can work wonders for our kids. But the reality is that they ARE NOT PHYSICIANS. You need to see a doctor for your child. Don't worry about where you are or they are right now. Call, email, send videos... get in touch with two or three or four of them. I know that this is a hard road. My daughter is almost 6 years old. I am still on this road. We all are.
If you need help or want to email me privately, please do... claudia@ubpn.org.
claudia
Re: Told my daughter doesn't need to see BPI specialist until 4 months old? MommyOfTwo Posted: Sep 25, 2005 5:32 AM Reply
Someone just pointed out to me that most of you travel to see your BPI specialist. I hadn't realized this yet--duh moment here
I just assumed you all happened to live close enough to them (don't we all wish?). Anyhow, this brings on another question, if you travel out-of-state (or a good driving distance) to see your BPI specialist, do you just see a local PT/OT? Or do you see the PT's and OT's at the BPI clinic too? Right now we're just going to a local children's therapy center. IF I remember right, our OT told us that he has about 4 or 5 other kids right now with this injury too--although currently our daughter is the youngest of the lot.
-Lis