Hi!
I think while looking through I saw a couple other parents of kids with CP. At least one My questions is, is it normal for them to have a lot of aches and pains?

My son just turned 8 and has been complaining the last week and a half of a lot of pain in the legs, hands, and neck. The PT at school had no clue why. He is getting OT/PT through a community program but they haven't seen him for about 3 weeks now due to funding issues. OUr health insurance has refused for the past 2 years to pay for any therapy since he has a "chronic condition." So I am not sure who to ask. He is not big on doctor visit so I would rather avoid that unless it is really bad.

Anyhow, he falls all the time, but then again, he ALWAYS has, so i am not sure why suddenly he would be in pain. I've been stretching him a million times a day, massages, warm soaks. I am a little scared in the back of my mind that this is a sign that he needs to get the crutches or maybe go into a wheelchair for a greater part of the day.... Right now he does the wheelchair for distance only. He is a great kid and not a complainer, it's starting to break my heart.

Anyone out there have kids with CP that have aches and pains? Is this normal?

Thanks all and have a great weekend!
Liz

I'm sorry; I don't know much about this condition, but am appalled at something you said: Because it is a chronic condition, the insurance company refuses to pay for therapy? They would rather see the little guy suffer? That is ludicrous! Have you already worked this up the ladder? I have to all the time with my insurance company, and my situations are not as serious. I never just go with what I'm told. Even today, on two separate bills where I found out I was assessed fees that just did not make sense, I got b.s. answers and asked for supervisors. Both times, I won the fight, as they agreed with my reasoning. Your doctor and therapist should be helping you fight this. The little I do know is that it does need massage and therapy - I had a step uncle with it and saw what a lack of that therapy can do. I'm with a major insurance company, and I already figured out, verified by two separate reps, that basically, they turn down things to save money because they figure most people won't fight. It's so like that movie The Rainmaker. Most people don't have the time, energy or knowledge to fight these guys. It stinks.

Jana is only 5 but does complain about pain on occasion. It is usually after she has Botox injections or when we have overstretched her. Does your son see a physiatrist? That is the person that I would call and ask questions. Could it be growing pains or is it more severe than that? Have you tried giving him Advil or Motrin to see if that helps?? Keep us posted.

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Lori

Mommy to ggg triplets born on 1-30-01

Thanks for responding guys!

I did file a formal appeal to the insurance and was told that it was clearly stipulated in my contract that they provided X number of PT/OT visits for "acute conditions only." We had letters from doctors and research articles, the whole shebang. It went to an arbitrator and everything. I did write to my commissioners and governor and through that I was put onto a waiting list for Medicaid Waiver (probably 4 years before our turn comes up). BUT my commissioner hooked us up with this great program where our county subsidizes PT/OT for families whose insurance will not pay for services but who make too much to qualify for Medicaid. It is a grant or something and it has been good so far. The only thing is, occasionally they call me and tell me I have to miss a week or two of therapy b/c there is a funding issue. That is our situation right now and I am hoping to start up again in the next week or two.

Lori, that is a good idea about the Motrin. I guess I should start giving him something when it hurts so at least he can be comfortable. He has only had botox once and sadly we did not have much results from it. Other than the botox and continuing therapies, the physiatrist has not recommended much. She prescribed him these splints to wear on his legs at night to keep them extended straight, but they make no difference once they come off. He has some heavy-duty tone, I guess. He legs are extremely turned in and his orthopedic dr. has recommended surgery on the tibias to correct this. He has already had hip surgery and muscle releases. I am taking him to a Shriners hospital later in the year for a gait analysis so they can determine if he really needs the surgery or perhaps some other treatment. I want to keep him walking b/c that is what he has expressed to me as what he would prefer, so i want to give him that opportunity. However, the pain does concern me and honestly I am less than thrilled about another surgery to "fix" him.

Sometimes I think that the hardest part of having a child with "special needs" is that we have to make all these hard decisions for our kids. It's not our body, but we are the ones who decide if it will be operated on, medicated, injected, casted, or otherwise treated...We are so afraid of doing the wrong thing - or not doing the right thing! I don't want him to say as an adult that I did not do what was best for him. But how the heck do I know what's best for him??? LOL

Well, thanks for listening. Have a great night all.

Liz

I don't know what kind of resources you have in your state, but Lily has a DD social worker through the county, and is receiving TEFRA, which is through Medical Assistance (like Medicaid), but it's for children with disabilities. Whatever our regular insurance doesn't pay for, TEFRA does. We do have to pay a parental fee each month, but it is based on a sliding scale, and has been such a huge lifesaver for us. Once she turned 2, she no longer qualified for straight MA, and they just discontinued it, without so much as a letter to us, until it was too late. We also make too much money to qualify for MA (interesting considering we're 5 people on one income), but TEFRA is based more upon needs, not your financial situation. The interesting thing though is that when I asked our county MA worker about it, she'd never even heard of TEFRA. (I knew about it because Lily had been getting homecare nurses for 18 months while she was trached, and I'd heard of it at least.) Finally, we were put in touch with the right person, and Lily qualified for it. It pays for a lot of things our regular insurance doesn't cover.

I was also going to mention that Lily just started going to Pool Therapy, she works with a Physical Therapist in a warm pool that's really helping to increase strength and muscle tone. There's a little boy who also has CP, and his session is right after Lily's. I spoke with his mom once, and I think he's been doing this for quite some time.

I really hope you're able to find the right resources to help you and your ds! **HUGS**

Artie, Thanks for mentioning the pool therapy! What a great idea! Our new therapist for ds has mentioned that we may want to look into physical therapy for him to help his muscle tone and coordination. I think this could be a good solution, as DS is only just now getting into swimming. I also hope I can find some info on TEFRA. The copays on all this stuff alone is adding up!

Thanks, I will need to look into TEFRA here as well! DS did great with pool therapy a few years ago; in fact he was practically swimming. Now with the insurance denying services, he can't get it. The place I am getting the PT/OT grant through doesn't offer that.