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See their pediatrician?
Get assessments or tests(MRIs, etc)? And what kind?
I'm just curious what services everyone else gets.
Dani is scheduled to see her ped once a month, for her Synagis shots. She only had appts with the physical medicine doctor twice so far and has another this coming January. She sees her audiologist about once a month too. IDK how often she gets tests, and idk how often she should really. She has had two evals for P/T and one follow-up MRI after leaving hospital.
She has P/T from a pro two days a week, and speech therapy once, and we do Floortime, which is designed for kids with autism, but her ped rec'd it, with her at least 20min/day.
See their pediatrician? As of now just for well-child check ups and sick ones as necessary. We didn't see her when she got her first Synagis shot. She hasn't had a second one yet due to insurance problems, and it is past 30 days too. I need to call about that.... again!
Specialist? We see the geneticist, nuerologist, and opthamologist the most frequently and that is about every 2-3 months.
Get assessments or tests(MRIs, etc)? And what kind? Depends. She just had her 2nd MRI.
P/T? 2 times a week
O/T? Well, she has one on one with an OT in her playgroup once a week for 2 hours. I guess that counts. She also sees a ST once a month.
Thanks for sharing that about the floortime. I read it briefly and will skim it over later too!
See their pediatrician? We just see the ped for check-ups and sick visits
Specialist? We generally see his neurologist and his opthalmologist every 4-6 months. I think we may need to add in a pulmonologist though
Get assessments or tests(MRIs, etc)? And what kind? This kind of just depends for us although he does have to have regular blood level checks for his tegretol and that is usually every 6 months so not bad.
Through the school system Cade gets PT, OT, ST and vision once a week. I think it is way too little. Privately he gets ST once a week, OT once a month (we pay this one out of pocket and I wish we could do it more often but it is just too expensive). We also do therapeutic horseback riding once a week when the sessions are in. We skipped the winter session though because I felt like he was just getting overwhelmed. We will pick that back up in the spring though.
See their pediatrician? 1 x per week for weight checks. Every other week we also pull blood to check her bili and electrolytes
Specialist? Pulmonologist- 1x per month; GI specialist 1-2 times per month;Rehab specialist- every 3 months- PT 2 x per month. Cardiologist (ASD and PDA)- 1 x per 3 months right now; neurologist- our first appointment is next week; opthomology- 1x per 6 months; audiology- first appointment coming up
Get assessments or tests(MRIs, etc)? And what kind? She has a full liver panel 2x per month. We're slated to have a liver biopsy maybe. We're also going to Georgetown to get put on the transplant list and who knows how many test that will entail.
The only thing I'm really not pleased with is that EI won't bring in a speech therapist until she passes her swallow study. Her appointment isn't until March.
The only thing I'm really not pleased with is that EI won't bring in a speech therapist until she passes her swallow study. Her appointment isn't until March.[/b]
This is absurd! So, if she passes, she can't get ST? You know you can insist on it, right?! That is absolutely ridiculous! Who is telling you this? Can you call the EI directior about this? Sydney's swallow study was normal and she gets ST once a month! Let me know if you need help/advice with this!
She has vocal cord paresis, and right now I am feeding her by bottle AMA. She has a g-tube that she's supposed to be getting continuous feeds out of. I use a product called "Simply Thick" to thicken her formula, otherwise anything she drinks she pukes up, even pedialyte. Now that she has the trach, although I could be mistaken, she doesn't have a risk of aspirating into her lungs, but I'm not positive about it.
We're going to be pushing the issue as come Wednesday. I only went AMA recently, 3 weeks ago in fact when they said "transplant" because she wasn't gaining weight. She wasn't gaining weight because she was only taking 450 calories per day via g-tube. I switched her to elecare 30 and worked her from 18 oz a day of 24 cal formula to 33 +ozs a day of 30 cal formula. AND.. it's working. Since I was being so bold, I decided to start giving her bolus feeds and bottles. We have to be careful about her electrolytes and stuff because she's had a significant portion of her intestines removed and can "dump". So far, so good. Our weight check is in the morning!!!!
From what I hear, we can only get speech to come out 1x per month due to staffing issues. It'll be better than nothing. Makes me want to pack up and move to Fairfax. I could go to speech in FFX since we practically live there anyway.
From what I hear, we can only get speech to come out 1x per month due to staffing issues. It'll be better than nothing. Makes me want to pack up and move to Fairfax. I could go to speech in FFX since we practically live there anyway.[/b]
You could always go the private route for ST. Our rehab doctor we saw yesterday wants us to do this, and I am happy to do it. I know she needs more, and the EI group just can't provide it. So, that is what we will do.
Ya know, we are only a few hours from one another. We were just up at Johns Hopkins to see a specialist there.
Woo Hoo, we'll have to get together one day. We'll be going to Georgetown soon to do the transplant eval thing. I may just go the private route, problem is, everything is in FFX. I need a new rehab specialist as I just got a 400$ bill in the mail because he doesn't accept my insurance and doesn't secondary bill medicaid.