Going off IV abx-going to try to squeeze in some fun!

[cobbiemommy]

After three months of IV claforan, DS's PICC line is being taken out tomorrow. As scared as I was to put that thing in, I'm thrilled and scared to take it out! He is physically doing so much better; he is working out to the extent that he can with a PICC line. He has lost maybe five pounds and looks much more fit. I'm scared because of the thought of a relapse, but he will still be on orals for maybe six more months. Plus, the wonderful Dr. J and his staff are still in our corner and I feel we are supported in his treatment.

 

I was thinking of some of the interventions that have been done to and for our son and the list is long...

 

1) Lazy-eye surgery (big difference, not 100%, but probably 95% better)

2) Podiatrist consult, orthotics for shoes (made a huge difference) along with tendon loosening exercises

3) Three months of IV abx

4) One steroid burst

5) Two steroid tapers (awesome)

6) Six months of Bicillin shots in his rump (horrible)

7) Two plus years of oral medications (never would have been enough)

8) Allergy shots

9) Four HD IVIg (very helpful)

10) GFCF diet, not helpful, but also not restarted after Lyme diagnosis. He would never have complied, so we just tried to eat as naturally and healthfully as possible.

 

With all that being said, we are not at 100% yet. He still talks to himself while he is on the computer and he still wants to spend too much time on the computer or game; but part of that may be learned behavior. He still needs to rebuild his stamina. I still feel that there is some autoimmune component going on, but until I can talk to Dr. J. and Dr. B, that is just my suspicion. We still have some more bloodwork to run.

 

For the next few weeks, we are going to enjoy what is left of the summer with swimming, bowling, amusement parks, and whatever else comes to mind.

[Dedee]

I am glad to hear that things are better for you. I hope you are enjoying some activities with your family. I am sure this is an exciting yet somewhat scary time for you. Hopefully you can relax and enjoy yourself.

 

Did your insurance pay for the IV antibiotics and picc line?

 

Dedee

[JoyBop]

Have a wonderful time, you both deserve it.

 

As for computer games, have you tried to put limits/conditions on it? My kid wants to be an addict but now he can only use iPod for 30 minutes at a time and only after 30 min if outdoor activity. I also had to go through his games. I had no idea that some of the apps work like crack dealers. I found out there were "online pets" that need to be fed every five hours or they die, and other games that encourage obsessions and anxieties forcing them to check in very frequently. I am horrified at the tactics the creators of these apps and games are using to gain usage. I'm sure you are already on some way to monitor.

 

You could also set the tuner and tell him he can't talk to himself for 3 minutes at a time in exchange for a certain amount if screen time. Then slowly increase the increments until he has it under control.