WWYD? Low IgG

[bigmighty]

DS has been in PANDAS remission for nearly one year. He is on 500 mg of Augmentin 2x daily, scheduled to reduce again in a month. His labs last week showed overall IgG of 600 - not terrible enough to treat, but certainly not optimal. Other labs all okay. His team just got invited to the largest national/international HS robotics competition. It means 20 hours each way on a bus, plus three 18+ hour days at the event. If DS goes, DH also will be attending - so at least DS will be reminded to take medications. During last week's three-day robotics tournament, DS lost four pounds (bringing him down to 111 pounds at 5' 10 1/2" tall). And that was WITH DH right there force feeding the kid every three hours. DS has extreme sensory issues and only eats about two dozen foods, so finding food while on the road is problematic. Also, DS sleeps nine hours every night like clock-work. Never less. He totally needs it. On the one hand, this is a huge opportunity not likely to be repeated. At the moment, he's in fair shape and I want him to enjoy his life while this lasts. But part of me is afraid of the possible set-back. WWYD if this was your 14 yr old? Thanks.

[Missmom]

As long as either you or your dh can go along for the trip I say you should let him go. I know it is hard but sometimes you just want them to feel normal, and what a sense of accomplishment he will have after having competed in this. Your dh will make sure he eats and sleeps and takes his meds. I know that sense of fear, believe me, I panic over the slightest thing but at least I know we now have a doctor on board who is willing to help if things go bad. So glad he is on his way to recovery.

[T_Anna]

I agree. DS is so non functional at the moment, but when he was able to pull it together we encouraged him to get to team matches etc. It is definitely something that motivates them in a healthy/positive way. As far as food, can you make sandwiches of something he likes as a fall back?

 

 

T.Anna

DS14

[Hopeny]

One thing that stuck in my head from the psychiatrist is the more you can maximize the good times and happy memories the stronger the recovery. If your son wants to go I take that as a very healthy sign and would support with precautions. Maybe this is a chance to try to work thru food issues like if you go you need to eat etc. good luck.

[bigmighty]

Thanks, all. We are going to offer DS the option of 1) Flying to and from the event with DH, but rooming with the kids, 2) Taking the bus with the kids, but rooming with DH, or 3) flying and rooming with DH. Also, we have asked DS to make a serious effort to regain the three pounds he just lost, before traveling to the next event - at which he most certainly will lose it again..... Cross your fingers for him!