RE: Re: bad experience with Neurosurgens?...and Damian K.'s story

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Wow you have been through a lot! Thank you for sharing your story.

Keri

Plagiocephaly From: sscutch@...Date: Thu, 13 Dec 2007 16:06:45 -0800Subject: Re: bad experience with Neurosurgens?...and Damian K.'s story

HI everyone! I have been busy reading all the posts and wow are there a lot! I wanted to address some of the concerns some of you have had w. nuerosurgeons. We took Damian to a cranial surgeon - I don't know if this is the same as a neurosurgeon but he was really nice- he is out of Children's Hospital Boston, so for any of you who live in this neck of the woods he is fantastic and didn't even blink when I asked him what he thought about Damian's head. But then again- Damian looks like a field pumpkin in the back and his ear sticks out! Poor little thing.

So here's his story. Damian was born full term but due sloppy care , (the drs left me in labor with my water broken, I was GBS pos) and they even put me in a hot tub any how I was in labor for over over 40 hours which resulted in Damian contracting Ecoli and it lead to sepsis, pneumonia and Meningitis. About 24 hours after delivery he was rushed to Childrens where he was intubated, had several blood transfusions, MRIs, EEGs, spinal taps etc.. and the prognosis was poor at first - they said he would either die or end up with profound nuero damage. In any event. Neither happened- our little fighter healed and spent about a month after birth in the NICU and Special Care nusery finishing up a round of antibiotics and came home around 4 weeks of age. I noticed when he got home he would only look to the right and diagnosed him myself with Torticolis- early intervention confirmed it as well as his pediatrician and nuerologists- yeah he has lots and lots of appointments!!!!. So any how- we worked on the torticolis but as a result of being on his back hooked up to monitors for 4 weeks and then developing torticolis- he developed flat spots really badly and it was a no brainer that he would need a helmet- I was really hoping that nature would take care of it and we tried to keep him off his head by putting him in his exersaucer, the bumbo seat, the baby bajorn, on his tummy but it was loosing battle. My brother would tease him about his right ear saying it was like a sonar ear- it was THAT BAD!!! His pediatrician didn't push it, he just said what ever you want to do, but make a decision by Dec. I was at the mall one day and my mom asked me how his head was doing and as I was telling her I wasn't sure but thought we may have to consider a helmet- a little girl with her grandmother strolled by and she had a helmet. My mom accosted this woman- I kid you not and asked about it. So I took it as a sign made the consult appointment with Dr. at Children's and he took one look and said- oh yeah he needs it ! So that's that. We went to NOPCO and they did the casting that day- it was pretty bad, he screamed and squirmed. We picked it up the other day and the first day was really rough and he cried and cried and CRIED!!! But bu the 2nd and 3rd day he was fine. I does get a little fussy when he realizes it's on, but he seems to be napping and eating just fine. I have a hard time cuddling him though and can't kiss his cheeks without bumping into it. And honestly I hate seeing him in it and feel so badly for him given all that he has been through in his short 5 1/2 months but I know it's for the best. I don't want the kids in school to pick on him. So that's that. I will post pictures when I get some. For those of you who have written that you are devistated about your kids having to get a helmet- I completely understand! I didn't sleep to well the night after the casting or the night before we picked it up. It's hard to see your kids go through this stuff! But hang in there - the sun will come out again. , Proud mom of Damian - the spitfire! Somerville, MA Kerica O'Dell <kerica1hotmail> wrote:

Okay so am I going to have my hands full dealing with the neurosurgeon? I took Anabel in and every time I even mentioned that I wanted her to get evaluated for the band to see if she would benefit, he would kind of blow it off. He was real nice and did seem to care, but he scared me, by saying that the ridge that Anabel has on her head could be due to premature closure of sutures...and her soft spot was a bit on the small side (which hubby and I noticed when she was born, but ped. said it was okay). The neurosurgeon even said that banding was a quite an inconvenience (I really don't care if it is and inconvenience or not, I want to do what is best for my daughter!!!!period end of story) So we will be going back on Jan 25th and my best guess is that he will want to do the CT that day, then maybe we can find out what really is going on. I am hoping that it's not suture related and I can aggressively ask for her to be evaluated for banding (please read demanding it). UGH I am so frustrated at the fact that he wanted to wait to do a CT....my question is wait for what. What will 6 more weeks actually tell us. WHat is the difference between now and then to be able to rule this out? Please, any comments would be appreciated. Keri

Plagiocephaly From: ronandjenvelezpeoplepcDate: Thu, 13 Dec 2007 17:37:37 +0000Subject: Re: bad experience with Neurosurgens?

Hello. I can certainly empathize with you. When my youngest Daughter was 3 months old (after having being diagnosed with plagio by the pediatrician) we drove about 1 1/2 hours to a neurosurgeon who was supposed to be "great" and we were hoping to get a Rx for the band at that point. Well.... he came into the room and I instantly knew I wasn't going to like him. lol. He just had this "air" about him and then looked at for about 5 seconds, said "oh, it's very minor..... I wouldn't worry about it". Then he gave me a prescription for PT for her tort, and left the room. I was very upset, as you were. Come to find out, once I got another opinion (from a craniofacial surgeon) and did a consult with an Orthotist.... 's plagio was not "minor" (like the neuro said) but she had 14mm of cranial vault asymm, which is considered high moderate. That made me realize even more that the Neurosurgon was either a jerk and/or not band friendly at all.Glad he did give you the prescription though. Good luck with everything.Jen (3 yrs), tort resolved, Hanger Band Grad (almost 6 yrs)>> Has anyone else had bad experience with neurosurgeons? > I just went to see Dr. Myseros at Children's hospital in Fairfax, VA and I cannot believe that this person deals with children on a regular basis. As soon as he walked into the office I could tell he was either in a bad mood or was a real jerk, he didn't even know what I had come in for when he came into the office and then asked me WHY I was seeing a neurosurgeon for his head shape. He treated me like an idiot after he asked what my line of work was, to which I replied "mother" and gave me a huge lecture on why I shouldn't put my child in a band, but wrote me a prescription anyway. He said I should just keep him off the flat spot, but he had nothing to suggest after I told him we had been doing repo for a month and his measurements got worse.> I have been so angry since I left his office, I was so thrown off, I didn't even get to ask any of the questions I wanted to ask. I only went to see him after my ped. asked me to see a neurosurgeon for a second opinion before banding my ds...> Kami> mom to Keenan 4 months plagio & torticollis currently repo> > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Search.>

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Hey wow- you know you hear everyday about people having babies and you think "no big deal right? WRONG!! Actually yes I was tested at 37 weeks and the strep B was positive so they did put me on antibiotics right away but that was the only thing they did right. Like you they should have put me on Pitocin but instead used cervadil. Dumb dumb move. My OB was on vacation that weekend but assured me that I was not going to be having him that weekend. SURPRISE ! And the one dr I didn't want (I had left her practice a year prior b/c she mis dx an ectopic preg. and said I was having out of cycle bleeding) Any how she was the dr on call. What luck right?! Any how- so that's that. Uhm Damian is doing marvelous! He has some delays here and there mostly gross motor skills like he's almost 6 months old but has some difficulty sitting up on his own and he was rolling from his back to his belly but since he got his helmet hasn't been. Does any one have a similar concern.

Any how- he has Early Intervention and a nuero who follow him and so far so good. his delays are most likey from the mini stroke he had while he was sooo sick. But he's our miracle baby!!!! lka_236 <lka_236@...> wrote: Thanks for sharing your story. The care you recieve sounds horrible. When they tested you for GBS around 37 weeks was that negative or positive? My sister with her first son was GBS positive but they didn't realize it until she was tested positive with her 2nd son (as you can become GBS at any point

in pregnancy...she was negative when they tested around 37 weeks with her first son but her first son had a lot of the side effects of not having the antibiotic which it sounds like your son did too). With her 2nd son, since the test at 37 weeks showed positive, they treated her in the hospital for it and he is/was totally fine. Is Damian healthy and doing well now? My sister's son (now 2) is doing fine but it was very scary in the beginning...he too was full-term (actually 4 days late) and was in the NICU at first.My water broke (on its own) and my contractions didn't pick-up. I too am GBS positive. But because of my water was broken they needed to put me on pitocin to get labor going but not too fast (they kicked up the pitocin once I got the required amount of antibiotics for the GBS). Hopefully, you have a new OB if you have more kids and MUCH BETTER care than what you recieved with Damian. I am

pregnant again and my OB said that because I was GBS positive with my first son that they will automatically treat me for GBS w/o doing another culture this time around. GBS can be very dangerous...even causing death or blindness...the doctors should have been more on top of it.Thanks again for sharing your story.>> Has anyone else had bad experience with neurosurgeons? > I just went to see Dr. Myseros at Children's hospital in Fairfax, VA and I cannot believe that this person deals with children

on a regular basis. As soon as he walked into the office I could tell he was either in a bad mood or was a real jerk, he didn't even know what I had come in for when he came into the office and then asked me WHY I was seeing a neurosurgeon for his head shape. He treated me like an idiot after he asked what my line of work was, to which I replied "mother" and gave me a huge lecture on why I shouldn't put my child in a band, but wrote me a prescription anyway. He said I should just keep him off the flat spot, but he had nothing to suggest after I told him we had been doing repo for a month and his measurements got worse.> I have been so angry since I left his office, I was so thrown off, I didn't even get to ask any of the questions I wanted to ask. I only went to see him after my ped. asked me to see a neurosurgeon for a second opinion before banding my ds...> Kami> mom to Keenan 4 months plagio &

torticollis currently repo> > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Search.>> > > > Looking for last minute shopping deals? Find them fast with Search.>

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I agree not sitting up at 6 months is normal. Reading every book I have read on the subject sitting upright unassisted is a skill found in older babies. If sitting up at 6 months is normal than my son and all his baby friends (4 born in the same month as him) are all delayed. They can sit assisted but unassisted fall over. I would not worry. Tammy hollijay2000 <hollijay2000@...> wrote: It sounds like Damian is doing fine. My son's PT says they are notdelayed unless they are 8-9 months and not

rolling or sitting.>> > Has anyone else had bad experience with neurosurgeons? > I just went > to see Dr. Myseros at Children's hospital in Fairfax, VA and I > cannot believe that this person deals with children on a regular > basis. As soon as he walked into the office I could tell he was > either in a bad mood or was a real jerk, he didn't even know what I > had come in for when he came into the office and then asked me WHY I > was seeing a neurosurgeon for his head shape. He treated me like an > idiot after he asked what my line of work was, to which I > replied

"mother" and gave me a huge lecture on why I shouldn't put > my child in a band, but wrote me a prescription anyway. He said I > should just keep him off the flat spot, but he had nothing to > suggest after I told him we had been doing repo for a month and his > measurements got worse.> I have been so angry since I left his > office, I was so thrown off, I didn't even get to ask any of the > questions I wanted to ask. I only went to see him after my ped. > asked me to see a neurosurgeon for a second opinion before banding > my ds...> Kami> mom to Keenan 4 months plagio & torticollis > currently repo> > > > > ---------------------------------> Looking > for last minute shopping deals? Find them fast with Search.>> > > > > > > > Looking for last minute shopping deals? Find them fast with >

Search.> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Mobile. Try it now.>

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HI Tammy and all- yes I agree- I think that 6 months is early and while some his cousins did sit at 6 months I think he'll catch up. I was so worried that he wouldn't roll over and then at 5 months and 3 days like a little houdini I found him on his belly! HAHAH! Kids are so funny!Tammy Sabs <princessluau@...> wrote: I agree not sitting up at 6 months is normal. Reading every book I have read on the subject sitting upright unassisted is a skill found in older babies. If sitting up at 6 months is normal than my son and all

his baby friends (4 born in the same month as him) are all delayed. They can sit assisted but unassisted fall over. I would not worry. Tammy hollijay2000 <hollijay2000 > wrote: It sounds like Damian is doing fine. My son's PT says they are notdelayed unless they are 8-9 months and not rolling or sitting.>> > Has anyone else had bad experience with neurosurgeons? > I just went > to see Dr. Myseros at Children's hospital in Fairfax, VA and I > cannot

believe that this person deals with children on a regular > basis. As soon as he walked into the office I could tell he was > either in a bad mood or was a real jerk, he didn't even know what I > had come in for when he came into the office and then asked me WHY I > was seeing a neurosurgeon for his head shape. He treated me like an > idiot after he asked what my line of work was, to which I > replied "mother" and gave me a huge lecture on why I shouldn't put > my child in a band, but wrote me a prescription anyway. He said I > should just keep him off the flat spot, but he had nothing to > suggest after I told him we had been doing repo for a month and his > measurements got worse.> I have been so angry since I left his > office, I was so thrown off, I didn't even get to ask any of the > questions I wanted to ask. I only went to see him after my ped. > asked me to see a

neurosurgeon for a second opinion before banding > my ds...> Kami> mom to Keenan 4 months plagio & torticollis > currently repo> > > > > ---------------------------------> Looking > for last minute shopping deals? Find them fast with Search.>> > > > > > > > Looking for last minute shopping deals? Find them fast with > Search.> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Mobile. Try it now.> Never miss a thing. Make your homepage.

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HI! You know what they are all little miracles and our little angels are fighters- They all have had to endure something and even the banding or helmets is hard work for them! I agree you always hope that your doctors are doing the right thing and as the patient it can be really scary! I can't beleive that your doctor ended up changing things once he came in! That is nerve racking! LISA lka_236 <lka_236@...> wrote: I am SO glad to hear that Damian is doing well. He definitely does sound like a miracle baby (but aren't they all?). It sounds

like the OB you had at the hospital doesn't know her stuff...YIKES, that isn't good at all. Misdiagnosing an ectopic pregnancy or cirvital instead of the pitocin when your water was already broken. There are about 8 doctors in my OB's practice and the way it is set is that if you give birth at night or the weekend you get the "on call" doctor....there is one doctor that I'm not crazy about and hope not to have. With my first son, we got to the hospital around 3:30am as my water had broken. The doctor that was "on call" until the new shift started did things that when my OB came on duty he changed. It is so hard when you are the patient and you trust the doctors know their stuff but then even amongst other OBS in the same practice there are differences. Any how...I am thankful for you guys that Damian is here and a fighter. >> > > Has anyone else had bad experience with neurosurgeons? > I just went >

> to see Dr. Myseros at Children's hospital in Fairfax, VA and I > > cannot believe that this person deals with children on a regular > > basis. As soon as he walked into the office I could tell he was > > either in a bad mood or was a real jerk, he didn't even know what I > > had come in for when he came into the office and then asked me WHY I > > was seeing a neurosurgeon for his head shape. He treated me like an > > idiot after he asked what my line of work was, to which I > > replied "mother" and gave me a huge lecture on why I shouldn't put > > my child in a band, but wrote me a prescription anyway. He said I > > should just keep him off the flat spot, but he had nothing to > > suggest after I told him we had been doing repo for a month and his > > measurements got worse.> I have been so angry since I left his > >

office, I was so thrown off, I didn't even get to ask any of the > > questions I wanted to ask. I only went to see him after my ped. > > asked me to see a neurosurgeon for a second opinion before banding > > my ds...> Kami> mom to Keenan 4 months plagio & torticollis > > currently repo> > > > > ---------------------------------> Looking > > for last minute shopping deals? Find them fast with Search.>> > > > > > > > > > > > Looking for last minute shopping deals? Find them fast with > > Search.> > >> > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all with Mobile. > Try it now.>

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