Our son (9yrs old) has been a cancer fighter since he was 4. Some of you may remember his journey (more at http://facebook.com/prayforcoulter ).

We have had to seek treatment out-of-state after exhausting options in Texas (Texas Children's and MD Anderson) due to his rare type of brain/spine cancer that has recurred almost yearly with mild progression. We are no stranger to other Children's hospitals including St. Jude's, Wisconsin, Pennsylvania, and Georgia.

While our roots remain in College Station, it has been almost a couple years since we last surveyed the medical availability for pediatric care in the area. Back then, things like daily physical therapy or weekly blood draws/infusions from a chest port with dedicated/highly skilled staff for children was unheard of in BCS.

Only on this condition could we begin the possibility of return, where our son's (and less importantly my wife and I) heart and friends remain.

We know that pediatrics doesn't have to be a strongpoint in a town with a different array of priorities - and we 'get it' that not all towns need to be the same, loving the uniqueness of BCS and it's draw to the young professionals, sports, and old Ags.

That said, would anyone have some insight into if things have changed or are about to with regards to introducing more options for child medical attentions as mentioned above? Our son's oncologist would remain out-of-state and we'd incur monthly travel there along with MRIs in Houston, but quality of life is very good in BCS his non-treatment time.

Thank you very much.

Coulter's Dad

S&W has a new cancer center. I am not sure if pediatrics is available but I would certainly inquire and remind them every once in a while if pediatrics isn't available.

We have a friend whose son is in remission for nueroblastoma. They go to Houston for scans and followup but continue to live in B/CS. St. Josephs has a cancer clinic as well as the new Scott & White hospital in CS.

My friend is a PT-assistant who does pediatric PT, and I saw several kids at Inspire PT when I was doing PT there.

With CHI-St Joseph we have good availability of pediatric therapy services (PT/OT/ST). Specialty services continue to be pretty limited with only ENT in our group really. S&W has some specialists that come a few days a month (endo, cardio, a few others). The pedi cardiology comes to the Med now and then as well.

As far as transfusion and port access I have not been able to find anyone to help with my patients who need those same services and the families continue to have to travel to Austin, Houston, Temple, or Dallas.

It is pretty frustrating.

Thank you KidDoc and others greatly. While we would certainly make the routine Houston trips as we did when we were there, having availability of certain needs within 30 mins or less is critical for us and unfortunately the deal breaker. I thought we'd check in though from time to time. He sure misses his good friends like Brock, Tenny and the Houghtons and the wonderful environment of the KOR school. God bless you Aggieland!

I think the CSMC is building on of those Ronald McDonald house style family treatment rooms similar to TCH.

Prayers for your son !

SARATOGA said:

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I think the CSMC is building on of those Ronald McDonald house style family treatment rooms similar to TCH.

Prayers for your son !

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Yeah St Jo has a Ronald McDonald room that was finished last year. Mostly for NICU kiddos as most of our other pediatric admits are less than a week due to lack of pediatric specialists.

I have a teenager and we are counting the months until he turns 18 since peds care is so limited. My car can get to Texas Children's almost by itself after so many trips. While we are grateful to have such a good hospital within driving distance but for daily/weekly medical it sure would be nice to keep it closer to home.

We have had a fantastic experience at Inspire Physical Therapy. They accepted him at age 14 for weekly/twice weekly therapy. I don't know if they would have taken him younger or not as we quit asking questions once we laid out his special PT needs and they agreed to follow his out-of-the-ordinary plan. He started working with Michael Perkins but was transitioned to Becky during the first year and we are thrilled with the care that he has received. They are great at listening to his concerns and adjusting the care given whatever else he has going on (dislocations or tachycardia or fatigue etc).

IV fluids for a peds patient has been tougher. Much tougher. For years, we only got them locally at the ER when he was having an emergency. Of course, they can do them at TCH but it is a 2 hour drive each way so you have to want those fluids pretty badly. Recently, my son became a patient of a S&W gastoenterologist out of Temple who makes trips to College Station a couple days a month. The GI doc ordered routine/maintenance IV fluids and told us that it could be done at the new S&W hospital on Rock Prairie Rd. We were thrilled. Then, the infusion center at S&W called us to say that they would see him but they were making an exception since he was a peds patient and they don't normally do peds.

So, his geneticist, pulmonologist, endocrinologist, cardiologist and orthopedist are all in Houston. His PCP, physical therapist, allergist/immunologist, psychiatrist, counselor and gi doc are all in College Station. And we can't wait for him to turn 18 so that we can switch some of his doctors over from peds to adult care since there are so many more options.

An acquaintance is a nurse at THRIVE skilled pediatric care. This lady is very passionate about her career and patients. I know very little about what she actually does and even less about the company. However, I wanted to mention it in case they could help get you home. Best wishes.

I just looked at their website and they do not list a BCS location. The nurse I know lives in BCS and has BCS patients.

I have dealt with thrive and they do well but are mostly for the trach and g tube patients not so much infusions. Home health stuff.

While I can't contribute to the conversation, it has made me realize how lucky I am to have had my own easy access to and from the Medical Center.

Best of luck to the OP, and perhaps consider the areas outside the Woodlands? Still a stone's throw to BCS and many of the big guns at the Medical Center are opening/have opened facilities there.

How different is the process for pediatric infusions from that of adults? I get that the target is smaller, but would have expected most places to be able to do it.

KidDoc said:

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TxElsie said:

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While I can't contribute to the conversation, it has made me realize how lucky I am to have had my own easy access to and from the Medical Center.

Best of luck to the OP, and perhaps consider the areas outside the Woodlands? Still a stone's throw to BCS and many of the big guns at the Medical Center are opening/have opened facilities there.

How different is the process for pediatric infusions from that of adults? I get that the target is smaller, but would have expected most places to be able to do it.

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It is not much different but dealing with an anxious/nervous child requires a different nursing skill set and personality. In addition much of the legal and paperwork is much different under 18 vs over 18. The dosing calculations are also significantly more complex in pediatrics and many nurses are not comfortable with that because if an error is made it can be catastrophic.

Therefore you need pediatric support from all the different hospital areas. Supplies, physician, nursing, pharmacy, dietary, etc. They are not just little adults.

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This. I've seen ivs infiltrated on little ones that can cause all sorts of damage, with much less margine for error.

I think you can get some pedi infusions through S&W now.

Sea Pony 07 said:

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KidDoc said:

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TxElsie said:

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While I can't contribute to the conversation, it has made me realize how lucky I am to have had my own easy access to and from the Medical Center.

Best of luck to the OP, and perhaps consider the areas outside the Woodlands? Still a stone's throw to BCS and many of the big guns at the Medical Center are opening/have opened facilities there.

How different is the process for pediatric infusions from that of adults? I get that the target is smaller, but would have expected most places to be able to do it.

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It is not much different but dealing with an anxious/nervous child requires a different nursing skill set and personality. In addition much of the legal and paperwork is much different under 18 vs over 18. The dosing calculations are also significantly more complex in pediatrics and many nurses are not comfortable with that because if an error is made it can be catastrophic.

Therefore you need pediatric support from all the different hospital areas. Supplies, physician, nursing, pharmacy, dietary, etc. They are not just little adults.

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This. I've seen ivs infiltrated on little ones that can cause all sorts of damage, with much less margine for error.

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He's got a port. I'd have thought that would make it different. Then again, I've had folks miss my port. NOT pleasant, and it was an already miserable day (8 sticks - 6 of them missed, one missed port stick, blood transfusion and a dose dense Carbo/Taxol infusion). I couldn't imagine being a kid on a day like that.

I can definitely see the issues dealing with anxiety and such. I can also see the dosing calculations stuff. When my little one was a baby, he had some cuts that required a plastic surgeon to stitch. I was talking with my brother (who is a trauma surgeon) and he said a lot of docs don't like putting kids out because of that exact thing.

Thanks, and I mean that sincerely - these are things I've never really thought about much, and make me appreciate the OPs dilemma much more. I know getting my kids through my cancer was hard enough, I have very great appreciation for parents who must get children through their cancer.

In general - you have it right. While particularly St Jo and BSW make efforts in pediatrics, and the UPA docs work hard as well, when it comes to the specialized care you seek there hasn't been much change locally. The main reason would be the relatively low numbers of pediatric patients needing the kind of care you seek, combined by the "splitting" of the referrals for that kind of care out of the Brazos Valley. While if there was only one center getting all the kids with those kind of issues there might be sufficient demand for a satellite care center here, they get split to TCH, MD Anderson, Dell Children's and McClain at S&W Temple. That really dilutes the numbers to any of those institutions and makes putting more services here difficult to achieve. Not that it's wrong to go wherever the child, parent, and doctor think the care is best. Just that there are all sorts of issues that come into play.

we used st joe's outpatient rehab for PT and speech for a couple of years and were pretty pleased with what we got.

we also used the therapy services over at the med.

there's not an abundance of PT available but there are some decent options out there.

My wife is a SLP specializing in special needs kids and quite a few of her patients travel to Houston frequently for their care. There's definitely a need for these services in B/CS, but the market still may not be large enough to keep them here.