[DeeVee]

Thought I'd turn to my forum friends again for some insight, and to vent.

I spent two hours at our county health department this morning with my daughter, who tested positive for exposure to TB (many of you know this and were very helpful to me a few weeks ago -- thank you again). The doctors in this area refer anyone who needs INH to the health dept. for treatment.

She will need to be on INH for 9 months, which I already knew. Here's the kicker: I have to bring her to the health department twice a week for the next nine months. They will not give me the medicine to give to her. They are telling me that this is because the CDC requires that a doctor or nurse witness the patient taking the medicine. When I questioned this (knowing that some of you are giving the medicine to your cildren yourselves) I was told, "well, that's wrong and is not really allowed. This is required by the CDC and there is no way around it." If she misses a dose, they will tack another week on. I have a four year old at home and another baby due in July. It's a half-hour one way to the health dept. from my home, plus however long I will have to wait there and then return home.

How can the CDC require this of me? This seems insane.

Thanks for letting me vent!

[JillnChris]

Dee. I am so sorry that you are going through this I know it must be really stressful. The only thing I have to tell you is that I was listening to a program on NPR the other day and they were talking about this guy here in Arizona who had TB and they ended up putting him in jail because he was not wearing his face mask.
I know this doesn't apply to you, the only reason I am sharing this is because I was completely unaware of how serious the authorities take this kind of stuff. It sounded like they do not mess around with TB. Hopefully someone else on here will have some more info. for you.

[joepegcamp]

What about visiting nurses? If a nurse authorized by the health department administered the medication at your home, would it meet CDC's requirements?

What happens if you need to go on bed rest due to the pregnancy? What do they do for the home-bound? What happens if your car dies?

And have you checked with the CDC in Atlanta to see if that's actually the case? I'd ask the CDC directly to see if there's anything that can be done.

[Cherrytex]

I have no answer for you but want you to know I feel your frustration! I hope you find some way around it. Can your Internal medicine Doctor have the meds sent to him/her to administer them? He/She could sign the record for CDC even. Just a thought!

Cherrytex

[csw]

Hi
I have heard of health dept nurses going to peoples homes..I would check into that option..
What a pain!

[DeeVee]

I already asked if our family doctor could administer the meds. They said they would check into that; no one had asked that before.

I will ask about a visiting nurse; I'm not sure about that since at the moment I clearly am not homebound. After I have my baby I will have to get friends to chip in and help me out by bringing Carolina to the Health Dept. twice weekly until I am driving again.

Thanks for the support. Y'all are the best!

[saranbr]

Wow Dee, I hadn't heard that one before. I wish I had a copy of the red book here at home so I could pull it and take a look. That is what our ped looked in and reviewed for our DD who took the INH for 9 mos as well. He just gave me a script monthly, saw her twice during the treatment and I got it at the local pharmacy. It IS commercially available in the liquid form and yes, they can bill your insurance for it. Our pharmacy was able to look it up on line and order it-- after I demanded they do so rather than sending me on a goose chase to the compounding pharm. He told me that the couple time/wk treatment was an option if I didn't think I could manage giving it to her myself, but never even suggested it was required.

If they are going to be that much trouble, I would demand a visiting nurse. Tell them it's a hardship for you, and rest assured, for TB treatment, they'll send one on over.

[mamalaura]

My daughter tested postive by skin test also and negative CXR, she had 9 months of INH liquid form. My pediatrician who specializes on the care of internationally adopted children gave me a script which I filled at a local pharmacy and refilled each month-I gave it at home without supervision...2-3 months after the 9 months were up she retested the skin test which was negative.
My pediatrician is a specialist in this area and her practice is well known and respected for the care of adopted children internationally-she consults by phone, email and in person with families needing assistance in this area. PM me if you want her contact info.
It seems excessive what you are being told...

[BrandyHagz]

Treatment of Tuberculosis American Thoracic Society, CDC, and Infectious Diseases Society of America

Check that out - it says yo can be managed my your Dr.

The CDC does recommend "DOT" (directly observed therapy) but it goes on to say, "However, given a clear understanding of roles and responsibilities, oversight of treatment may be shared between a public health program and a private physician."

It also says, "DOT can be provided daily or intermittently in the office, clinic, or in the "field" (patient's home, place of employment, school, street corner, bar, or any other site that is mutually agreeable) by appropriately trained personnel."

Of course, it also says, "DOT should be used for all children with tuberculosis. The lack of pediatric dosage forms of most antituberculosis medications necessitates using crushed pills and suspensions. Even when drugs are given under DOT, tolerance of the medications must be monitored closely. Parents should not be relied on to supervise DOT."

So, based on this sheet I read, it sounds like you're ok working with your local Dr...but if you've got a Health Department who is trying to strictly follow the CDC Guidelines, you may be required to have the medication given in the office of your Private Dr. a few times a week.

[DeeVee]

Thanks for that info, Brandy. I have a call into our family doctor to try to coordinate this at his office somehow.

Mamalaura, I'll PM you if I need that info. We do have an IA clinic here at Vanderbilt, and Carolina has seen the docs there. I will talk to them as well since they have her records.

My forum friends are the BEST! Thanks and (((hugs))).

[jeannecr]

From what I understand, your daughter doesn't have TB, she just tests positive for exposure. In that case, DOT is not necessary. The CDC only recommends that in case of actual disease. At this point, your daughter cannot spread TB to anyone else. I would get your private doctor to help fight this, because it is absolutely not required (and yes, I am a doctor)!

[mcmom]

Sorry to hear you are going through this! Can't believe you only have 3 more months to go til the new addition!

[Travelkid]

Diane,

I am so sorry to hear this! I agree, there is no reason you could not go to a doctor to have this administered. Sending many prayers and your way. Keep us posted!

[sassycindy]

Hi,

I PMed you, but wanted to pass this info along to everyone else too.

YOU DO NOT HAVE TO GO TO THE COUNTY HEALTH DEPARTMENT FOR INH!!! I tested positive for TB and was told to go to the county health dept--so i did for about 6 months and then finally got fed up with the ridiculously long wait and the absolutely horrible neighborhood (bad area of Philly) so one day i just called up the local pharmacy (after being told this wouldn't work) and the pharmacist said "sure, bring the prescription over", so i did, he filled it, charged me about $4! For the rest of my months on INH i just kept going there and never had a problem.

best of luck to all who are going through this. Don't always listen to private doctors--they don't always know, esp. if they don't deal with this stuff on a regular basis.

Cindy