Need advice! TIA

[jenbug]

What precautions, if any, can you take when giving your child Motrin/ibuprofen on a regular basis (besides the obvious-food). I have decided to try this with my oldest child. My daughter has OCD/Tourettes and pulls her lashes, hair, etc. I am going to be calling Dr. K in the next few weeks too. I feel as though adding Motrin once a day along with food shouldn't be too huge of a risk.

 

I am also wondering if anyone has been to Dr. K, and if so, what does he do...like, what is the "process"? I am wondering if I sould talk to the ped first or go straight to him, and if insurance covers him ( I know it doesn't cover some stuff like IVIG though).

Edited May 31, 2011 by jenbug

[patric]

What precautions, if any, can you take when giving your child Motrin/ibuprofen on a regular basis (besides the obvious-food). I have decided to try this with my oldest child. My daughter has OCD/Tourettes and pulls her lashes, hair, etc. I am going to be calling Dr. K in the next few weeks too. I feel as though adding Motrin once a day along with food shouldn't be too huge of a risk.

 

I am also wondering if anyone has been to Dr. K, and if so, what does he do...like, what is the "process"? I am wondering if I sould talk to the ped first or go straight to him, and if insurance covers him ( I know it doesn't cover some stuff like IVIG though).

Hi,

We took our ds8 to Dr. K. about a month ago for our first consultation. We paid out of pocket, as he did not take our insurance. It was an hour long consult that you pay for. He first talked to our son and then had him wait in the waiting area while he talked with us. He will give you very specific and detailed information on PANDAS and the treatment. I would take notes, as there is so much he covers and hard to remember it all at the time. He is a little quirky, but IMO it is part of the diagnostic process he does. We felt a huge relief after our appointment, as we finally felt we were in great hands and hope for a successful treatment. We are scheduled to do IVIg with him next week. This is also not covered by our insurance, so we will pay out of pocket for that too.

As far as going to your ped Dr. first, I would just go right to Dr. K, but that is just my opinion which is based on several dead ends and lots of discouragement with other doctors not understanding and even giving us misinformation.

Sharon

[Dedee]

In regards to going to your regular doctor.....it depends on the relationship you have with your pediatrician and how open minded he is. If possible it is good for the primary doctor to know what is going on with your child. However, if you suspect this is not going to be taken seriously and may slow things down then skip it and head straight to a PANDAS specialist. Our pediatrician admits she doesn't know anything about it but has been helpful in finding someone in our area for treatment and also in working on the insurance piece. Sometimes I get the idea that she thinks I blame everything on PANDAS but actually it touches every part of my daughter's life. I just over look that because for the most part she is good to us and definately better than most. I agree that you need to do what ever is quickest. The health care world moves at a snails pace and this illness is unforgiving. Do what you have to do to get her treatment quickly. Good Luck!

 

Dedee

[airial95]

We've not gone to Dr. K, as we have a great pediatrician and have Dr. Murphy locally (and covered by ins!) so we're not on that path...

 

But as far as seeing your local ped first, I agree with Dedee, it depends on how open minded they are. It may be helpful to see them first and have them order all of the relevant bloodwork/labs, etc... ahead of time so Dr. K has more information to work with. Other parents who have seen him previously may know what lab orders he normally gives. I would think this would be helpful to do before hand, especially if you're travelling to see him...you'd want to make the most of your visit. Just a thought.

 

As for the motrin, we have always used it sparingly, and only have done a daily dosing for a couple of days at a time, when he's having a full blown strep infection. I've always been concerned about the long term use, but found it has been just as effective for us when we use it as needed. Take my thoughts with a grain of salt if you will though, since our son is only 3 1/2, and the level of daily functioning needed is far different than that of a school age child...

[jenbug]

Airial--thanks! I have started dosing my older 2 with ibuprofen twice a day. So far, it sesms as theough they are better with it than without. I am going to stop dosing this weekend for a week to see what happens. In the meantime, I called the ped and she is researching to see what we can do. We can't afford to travel to Dr. K., so she may consult with him and work that way. I also don't like the idea of longterm motrin use...tummy aches=yuck!