Long post: Near future medical costs and other questions..

[stacie_d]

Trying to keep this budget related, because of all the forums, you all seem to have the best advice/info.

My DS13 has always been uncoordinated and completely uninterested in anything physical...can't run, can't skip, can't hop, can't jump, very bad finger coordination.

Flash forward to a few weeks ago, he was starting to have bad pain in one ankle. He was walking with his foot turned almost 90 degrees with his ankle nearly touching the ground. My good friend's husband is a podiatrist so we had him in that week. It's tendonitis in his achilles tendon. That ankle is collapsing, as best I can understand, because his tendon is too tight and maybe some other problem with the ankle. Other leg, that he is not complaining about, also has the achilles tendon that is way too tight. Neither can flex beyond 90 degrees.

He is trying inserts because that is what is necessary for insurance purposes, but I got the impression by his further explanation that it would not help and that was confirmed by later conversations with my friend (waiving all HIPAA issues).

He needs to have his achilles tendons lengthened and maybe some implants to set his ankles bones right. I trust the Doc from our personal relationship, and given his demeanor, I trust his impression.

Let me add...for years I have suspected a problem...his lack of coordination couple with his hand issues have lead me to consider cerebral palsy. I have several family member with it to multiple degrees (completely unable to move to another who is excelling in college). I wonder if he might have it to some mild degree.

I don't know how we are going to manage this...but we will. He will be non-weight bearing on each foot for one month each leg, at least. I don't know that DS is coordinated enough to deal with crutches. Grandparents are already suggesting homebound schooling, but that would not be good for him. He is such a loner, he needs the interaction.

I see this being about a 6 months ordeal at least. He is being a good sport about it.

I foresee lots of medical bills, therapy bills. Not likely to be cheap. The logistics of figuring out how best to deal with this is what I would love some advice.

 

[Tink-aholic]

I am sorry about your son, but you are doing all of this on a podiatrist's say so? I worked for a pod for four years, and although he was very good at diagnosing things from the ankle-down -- I would be taking my child to the closest Children's Hospital for neurological testing.

In addition, since you have kids with CP in your family, you know that it isn't hereditary...right?

Doesn't your son have health insurance?

Good luck to you.

 

[bearloch]

I agree wven though u are friends with the doc I would seek a second opion about the hards issue too! then with whatever u find out I would call ins if have any nd find out what your co-pay/ ded will be for every step of the way! most medical places will work with u and take paymts! and keep all reciepts as u can claim hem on taxes if over a certain %

god luck! let us know what happens

 

[rangermom]

I know how you feel. My DS is having his Achilles and hamstrings in both legs lengthened in Sept. he has CP and it is mild. You need to go to a nuerologist as they are the only ones that can truly diagnose CP via a MRI. I would go to an orthopedic surgeon. He may need more than corrective surgery on his feet. He may need AFO's after the surgery so that might be an extra cost. The hospital that my DS goes to has always let us make payments on copayments. This has been an on going ordeal for us so we also have a health flexible spending account through work that helps with taxes but we claim what we spend over the account.

 

[rangermom]

I know how you feel. My DS is having his Achilles and hamstrings in both legs lengthened in Sept. he has CP and it is mild. You need to go to a nuerologist as they are the only ones that can truly diagnose CP via a MRI. I would go to an orthopedic surgeon. He may need more than corrective surgery on his feet. He may need AFO's after the surgery so that might be an extra cost. The hospital that my DS goes to has always let us make payments on copayments. This has been an on going ordeal for us so we also have a health flexible spending account through work that helps with taxes but we claim what we spend over the account.

 

[BubMunkeyBles]

I'd second the orthopedic surgeon... Podiatrists are great for toes and feet... but major stuff I'd go with the orthopedist (one who specializes in foot and ankles).

I had seven ankle surgeries including a gastroc lengthening because I was immobilized too much and lost my dorsal flexion in my ankle. I also ended up with nerve damage and needed neurectomies done (which I now need redone).

At least get the second opinion. I had numerous including going out of state to see some of the best out there.

 

[Green Tea]

First, Cerebral Palsy is not hereditary.

If his ankle is turning like that you need to see a pediatric orthopedic surgeon. Not a local podiatrist. Look at your nearest children's hospital. That might not be in your town.

Is your child in a public school? Some of the coordination issues you speak of are skills that should have been addressed by an IEP for Occupational Therapy and Physical Therapy. Has he ever had evaluations for these services?

 

[lovemygoofy]

Your son needs to be seen by a specialist especially a foot and ankle ortho specializing in surgery. It's going to be a long haul for your son's recovery and needs to be overseen by a specialist that can anticipate bumps in the road.

As for getting around instead of crutches, there is a leg caddy/scooter thing you can rent. It is a little scooter thing you rest your injured leg on and use your other foot to scoot around. It will not get you upstairs and a pain to get around sidewalks but doable. My ortho specialist had them for rent at his office.

I highly recommend a shower seat(bought one at walmart for less than 30 bucks), a cast cover protector(even if there is no cast) and a bed set up on the main floor if possible.

I had reconstructive surgery on my ankle almost 5 months ago. I was on crutches for 10 weeks and know what a hassle it can be for everyone involved.

Do you have insurance? Do you need referrals to see specialist and have surgery? Start talking to your insurance rep and see what the process is for a second opinion and additional testing. Can you diagnose both legs at once and then do the surgery one at a time? Ask the insurance company on the best way to move forward. I'm guessing you will have to start the process over for each leg. Make sure you know what surgery centers are approved and how many follow up visits to the specialist if there is a limit.

When you are thinking of questions just write them down and ask them when on the phone with your rep. They should be able to help you out or guide you in the correct direction.

 

[laughinplace199]

OP, what does your pediatrician say? He/she must be aware that your DS isn't able to run, jump, etc. Has the dr ever referred your DS to PT or OT?

I'd start with your ped and ask him/her to refer you to a specialist.

 

[phred52]

second opinion for sure! Do you have a Children's
Hospital within driving distance?

 

[lgruender]

I work with orthopedic doctors at St. Louis children's hospital and agree that you need to see a peds orthopedic doctor. Some of our doctors also work with Shriners hospital too, maybe this is something you can look into also.

 

[jaminmd]

I'm sorry for your poor son. Please also consider adding money to your flexible spending account. The money is deducted tax free and it is usually reimbursed once the expense is incurred. So if you have $5k deducted over 12 months but incur $5k of expenses in January, you'll get that reimbursed as soon as you file for it.

I would get another opinion, though. For what the poor kid will have to go through, it is definitely worth it. Best of luck to you.

 

[joanchris]

I haven't read all the replies yet, so forgive me if this has been said before.....Why not do both at the same time? You can rent a wheelchair for the month or so he'd need it, if he can't handle crutches he might need a chair anyhow for the short term. Doing it at one time would almost halve all the other related medical costs, vs doing it twice. In addition to having him be over with it sooner.
Hugs!

 

[riley2008]

Is your child in a public school? Some of the coordination issues you speak of are skills that should have been addressed by an IEP for Occupational Therapy and Physical Therapy. Has he ever had evaluations for these services?

I don't know which state the OP is in, but typically PT and OT are "related services" and only provided if the student requires them in order to benefit from specially designed curriculum. Even with an orthopedic impairment, many students don't qualify for special education, as no other services are needed to benefit from the educational system. Ex/ a student with a prosthesis - could they benefit from PT, yes; do they require it for educational benefit? no

I really don't think it's fair to say that the school "should have addressed" these issues. It appears that the student never had problems accessing the educational environment.

To OP - IMO, I would look at a second opinion, although the recommendations are likely on target from what you describe. Also, rather than homeschool, you may want to talk to your school about homebound services for a portion of the recovery time. (Again, though, he may not "qualify" if he is expected to return within a few weeks.) He should be able to get "reasonable accommodations" through your 504 program.

As surgery approaches, talk to the surgeon, anthesiologist and hospital (and whoever you can actually get the names of prior to surgery), to discuss payment plans in advance. Also, closely watch your Explanation of Benefits forms from your insurance company. Sometimes an "In-Network" hospital will use an "Out-of-Network" lab, anthesiologist, etc. Usually, you can contact the insurance company and tell them you had no choice in providers and you were at a "In-Network" facility,... This will usually increase their amounts to the other guy. Also, make sure your approved providers "write-off" the non-allowable amounts from your EOB. (They have contracts with your insurance company to provide services and have agreed in advance to these amounts. If they don't write them off/adjust bill, contact your insurance company for help.)

Finally, hospitals and surgeons can be pretty pushy wanting their $$ upfront. Have an amount to offer and stick to it. They will try to push you to using your credit cards, etc. Don't do it. (Even leave and come back if you need.)

 

[stacie_d]

Thanks for all the replies...

I was fairly vague in my initial post to get some real opinions that I think I needed, so thank you all of you.

To answer some of the questions posed....

Pediatrician had never made a comment, nor has the school...this is all on my observation/intuition. Despite his horrible hand writing, he has done well in school...not as well as I would like, but still good. Great at computers, to the point that he has been asked to help debug some websites for a local business that is friend's dad is the general manager of.

Insurance, etc., is not really an issue, well I guess except for the co pays, and fortunately that is not really an issue. I will reluctantly explain...

I wanted to post this on this board...you all seem to be the best folks for real issues. For the past decade and more, this is where I have come to look for and find answers. In full disclosure although we are still fairly young and still watching finances, Dh is an ob/gyn at the local hospital, and works for the state university which is the children's hospital. I am a defense attorney in medical malpractice. We are familiar with the medicine, as well as practitioners in the area. For me, this was more of a way of making sure that I was doing what was in the best interest of my child.

I know CP is not a heredity condition..my two cousins who have it are unique situations...oldest cousin was among the first of 10-15 babies brought to the NICU at the local university hospital when it opened 30-some years ago. She was very premature, and one of the few of those first babies still living. She is just two years younger than me. She has severe brain damage/lack of development. She has required 24 hour care since birth. My other family member is the son of my cousin who is a severe asthmatic. During her pregnancy, she had a bad attack, and was put on a ventilator and other life support measures for a while. The lack of oxygen during this time is most likely the cause of his CP. From their circumstances, I understand the condition.

I really appreciate the comments...I think I will seek a second opinion, just to be sure we are going the right direction. There is a pediatric orthopaedic surgeon that I am comfortable with that I think I will take him to for a consult.

I welcome any further comments that might help me with decisions I might need to make in the upcoming months.

 

[kellydizfan]

Sorry to hear this. I would have him tested (Brain MRI) for Ataxia. My DH has it and his issues started about that age. Sounds just like him. I hope it isn't this either as it is horrible as they get older. There is no cure. THere are 4,000 tests and about $2,000 a pop if you want to find out what type if that is it. Our insurance won't pay as there is no cure for it. Good Luck in finding out what exactly is wrong. It took us a long time to get this diagnosis with my DH. My DH was a big sports fanatic - playing football, etc at that age and it came to a screeching halt. Is there a slight speech issue? He has this also.