Advice for well-child on Tuesday

[vtheartmama]

N has his well-child check up on Tuesday and I am wondering if I should mention my concerns to his pediatrician. She is the 15m. wonder doctor...5min. for sick visits. I am pretty sure she's gonna look at me and be like "are you kidding?..your baby went through OHS with flying colors and you wanna label him?"..(she's kind of a hippie). OK..so I'm a little chicken.
IF I say anything how have you all done it where they actually take you seriously?..thanks..

 

[BusynMember]

She doesn't sound too great. Kind of a hippie? I wouldn't pick that mindset to take care of my kid. If you can't even talk to her, how much can she help? On the other hand, most pediatricians are pretty clueless about childhood disorders and behavioral issues (which go hand in hand).

 

[slsh]

I think the important thing when choosing (and staying with- a pediatrician) is having one who really listens to what you say. While a "hippie" doctor would fit right in with- my particular personality, more importantly would be a doctor who listens and takes action. The best peds I've had have actually been the ones who said "hmmm, I don't know. Let's check into that." I do not expect my pediatrician to have all the answers. I *do* expect him to either research it himself or refer us on.

Also, remember that the physician works for you. He/she is part of the team, especially when you have kiddos who have special needs. I would not hesitate to find a new doctor if the one I'm dealing with discounts my concerns. I was a very needy new mom, having lost one child and having her twin with- serious medical issues. To be brutally honest, I was a wreck - an overprotective mother who probably was a royal pain in the posterior - but I found peds who got that I needed support as I figured out how to care for first my oldest and then my other kids (who I was also ridiculously overprotective of). While I think I did get a raised eyebrow when I took Boo (oldest) in for his first mosquito bite (I was sure it was some festering infection, LOL), our pediatrician really supported me and educated me, which paid off for the pediatrician in the long run because by the time kid #4 arrived, I was much more confident in motherhood.

Personally, I think the sensory issues, including his difficulties with personal boundaries, along with- the possibility of a sz, should raise a big red flag and merits a full neuro and/or developmental pediatrician evaluation. Just because he went thru the OHS does not mean he gets a free pass on other potential challenges, unfortunately. I know nothing about transposition, but I have to wonder how sick he was and is it possible he sustained a brain insult around that time? That's my personal bias kicking in, having a kid who had an anoxic injury in the first 3 weeks of life and subsequent changes in the brain - so I could be completely off the mark. But at the very least, I absolutely believe that part of a pediatrician's job is to address a parent's concerns to the parent's satisfaction.

At the end of the day, you know your kids better than *anyone*. That matches an M.D. degree any day, in my book!

 

[vtheartmama]

OK really trended off topic towards the end...sorry, I'm a rambler and fast typer...

I've had a hard time finding the right pediatrician... Dr. K told me I had to quit breastfeeding my son because it was like a milkshake so I stopped going to her, even though she was always more thorough in evaluation and question answering, I just couldn't hear one more time about my son being "obese" at the age of 9 months. And I knew damn well that breastfeeding was NOT the problem, and by 2 he has slimmed down. My daughter sees a pediatrician. from time to time, Dr. P, when her GP can't see her, but when I brought her in for a Stage 3 cast sore (gaping flesh) and she told me to come into her office because she was sure it wasn't anything exciting, and she gave me bad advice for treating it (because Shriner's gave me the opposite advice which worked GREAT) I stopped liking her so much. So that leaves Dr. Mac who ignored my sons 104.7 degree fever for 3 WEEKS while he vomited and cried and couldn't sleep because he had an ear infection so bad I finally took him to Dr. P who gave him penecillin, his fever spiked over 105 on the penecillin and they switched to augmentin. Next time I came in to Dr. Mac because I wanted his lungs listened too(bronchial infections are bad news for CHD kids), she gave him antibiotics for an ear infection he didn't have because there was an intern present and she said that when they under the age of 2 and have an ear infection antibiotics are always given.

SO if in the future you hear me rant and rave about how ****thank you our medical system is, the above is just the tip of the ice berg we've dealt with, my apologies in advance ; ) .

Dr. Mac has been with him since he was born and she's good with his heart, knows what to listen for, has 2 TGA babies she treats. That office is "supposed" to be the best in the area. Should just smack my head against the wall and move to a bigger city where my kids can get REAL medical care. So I guess my point is I'm running out of doctors! *L*

SLSH- luckily when N was born he had a VSD and Autism Spectrum Disorders (ASD) (holes in the heart) which allowed the blood to mix well, otherwise he'd be dead as the hospital he was at was not prepared for any complications (take a guess how many nurses it took to figure out how to run the oxygen incubator?..they had to call the tech, who still had trouble) His oxygen was 84% and the cardiac surgeon at Boston said that he shouldn't have any brain damage from that. Dr. Mac said the only reason she ordered an EEG (normally she would wait until there was another seizure) was because he was on the heart/lung bypass for surgery. But studies have shown that cardiac kids brains are different from birth, more white matter, and are prone to ADHD.

Maybe I should look around, when N was born they did a cystic fibrosis screening and he was found to have the Delta 504 mutation, so we had to do the sweat test the same day he was getting his first echo..luckily it came back negative, but my husband and I were shocked..CF?? I literally felt like the sky had fallen on me and I was carrying it around on my shoulders. So we of course all got tested, my daughter is also a carrier, but we learned both my husband and I are carriers (it takes 1 carrier to pass the gene on, but 2 carriers to actually make the disease)..all our children will have a 25% chance of being born with this fatal disease. It's been hard, I always wanted more kids...and we can't..when Dr. M told me she said the lab had said we'd be devestated but "I told them not to worry it was the least of your concerns!".. I'm sure she meant well and probably doesn't realize what it meant for us..but still.

Think of the odds. 1 in 10,000 for progressive infantile scoliosis- the only potentially fatal pediatric orthopeadic condition in the world, which my daughter has. 1 in 100 for congenital heart disease, the most common birth defect, my son. ..and 1 in 4 for Cystic Fibrosis, luckily neither. Would I be sick to say we were lucky?

 

[slsh]

Has he ever had a brain MRI? Again, my bias kicking in, LOL, but if changes in white matter are a common finding in kids with- heart problems, that might be helpful. I've found it to be useful to know the anatomy of my son's brain, because it's cut through a lot of pointless extra testing over the years when new docs flip out over his grossly abnormal scans.

How has your son's physical/motor development been?

I think some docs forget they're dealing with mere humans. Boo received an antibiotic in NICU that can cause deafness. We followed up with- a developmental pediatrician shortly after he was discharged the first time, and I requested hearing tests to make sure he wasn't deaf. This guy actually had the nerve to look at my gnawed fingernails, literally patted my hand, and told me I had enough to worry about - he wasn't ordering the hearing test. That was the first doctor I fired, LOL. I may have been a wreck, but I had a *valid* concern. Your doctor may have thought CF would be the least of your concerns, but he forgot to look at the bigger picture.

I've found that sometimes I have to be the voice of reason when it comes to my kids' treatment. I had one ER doctor who wanted to do yet another brain MRI to rule out a tumor when Boo had another seizure. A brain tumor??? I actually laughed at him. Poor guy was a little shocked, but I explained that given Boo's history, his documented brain injury, and the fact that there were absolutely no changes in him aside from this breakthrough seizure, I thought an MRI was not indicated, and we'd just wait for his neuro to check in before undertaking any more scans.

Bottom line, it's been a delicate balance. A doctor has to address my concerns, no matter how off the wall they may seem. I have to be open to the information that is shared and at times hand over the reins to the experts, but at the same time I have to be my kids' advocate and make sure that they are receiving the best care and are treated with- respect. I don't hesitate to fire a doctor who won't work with- me.

 

[vtheartmama]

slsh- he's never had an MRI..I'm guessing the pediatrician. would only do it if really necessary as he'd have to be sedated and it's so risky..he was delayed as a baby with his physical development and had to have PT..once he started though he was on a roll! His right side has always been weaker and he falls a lot but the old P.T didn't worry about it too much, he has a new referral for a PT as of today though. His motor development has always been on track but I noticed lately his hands have been unsteady/shaky. Also since about 8 months ago he has started to do this thing with his fingers where they are overlapped and he just walks around like that..I can't even make my fingers do it unless I physically put them in that position, his pinky goes over his ring finger, his index finger goes over his middle finger and all sorts of different combos and sometimes when he puts his hands out to show me something his fingers are contorted at all angles. So this is going to sound super bad...but I am wondering if he got some sort of brain injury- N's hit his head quite a few times, 2 falling out of bed, 2 on the door jamb while throwing a tantrum with- husband, and just recently on the hard part of the couch..

So the good news is the pediatrician. listened to me on about 75% of the things and of course by the time I get to the end of the list she's off in her own world. So we got PT scheduled for his right leg weakness, Occupational Therapist (OT) for his hands (but I don't think that will really help...she kind of blew that one off), gave me some tips for dealing with his behaviors and set up a referal for CUPS (behavioral help for 0-6 year olds), and at the beginning of the apt. had me fill out questionnaries for autism and developmental screening, and dental care, and then asked a few more questions during the appointment checking for autistic behaviors.. and she said that if he ever rolls his eyes up in his head again he needs to come in for immediate evaluation. So I forgot to mention the shaking of the hands and have his back checked (scoliosis) because she took my list from me so I didn't have it to refer to anymore..next time I'll bring 2 copies! But, it was more than I expected considering our previous experiences with her. I will try to tips she gave me on his behavior and see where that gets us..thanks for the support everyone : -) husband HATES to talk about this and we fight everytime I bring it up so it's nice to have people to bounce ideas off of : ) My daughter goes for her pysch evaluation on the 24th of Feb. so I'll let you all know how that goes...

 

[SRL]

Very good! I'm thrilled she listened to your concerns and made immediate referrals for therapy.

Dads frequently have a hard time with this. Think "Gene Pool Pride" ;-), plus often they just aren't seeing the behaviors beyond the here and now.