Reply To: 12-year old son newly diagnosed

Hi, so sorry this happened, I truly can say I know how you feel. We had about the same time frame of symptoms. We did not have hearing issues but eventually we were not able to walk, hold an item, stand or get dressed. Eventually in PICU for 10 days difficulty breathing and waiting for ivig (there was a shortage when we were dx 6 years ago) To answer your question honestly, yes you will and have to constantly watch him intil you can figure out what his relapse time is between treatment. You have an advantage over us because you are a nurse. About the dosing, it is the standard 2g/kg for a loading dose. You didnot give his weight… Load should have been weight in lbs/2.2 which = weight in kg multiplied by 2 (2g/kg) Unless they gave him an extrmeme amount over the 2 days, it sounds like he may have gotten a maintenance dose. You are a nurse, so I don’t have to tell you about prednisone, especially for a pubescent boy. I would go on the ninds site or print out info on Dr. Dyck from Mayo and give the info to your doc. Not discounting his treatment, because the ivig and steroids together are obviously working, but a proper amount of ivig alone may do the trick. Because of cost and for some patients side affects (we get the aseptic meningits reaction every time, every two weeks for six years) some docs use less ivig. If your doc is a good caring doc, he will listen to your suggestions, ideas, if not time to find a new doc. Eventually you will have to figure out how long ivig will last for your son between doses. I don’t know if you know about ivig, so please forgive me if I am telling you things you know. IVIG has a full life of 42 days, but some people need more than that because their body is producing autoantibodies at a higher/quicker rate therefore necessitating more ivig. In addition it is imperative to keep the treatments in front of the demylienation process. For instance, if your son notices weakness, tingling, pain etc before the end of the 42 days, you know he relapses before the full life. Not to mention if he is feeling it, the demylienation startedlong before. In order to let healing start (distally) you have to make sure no new process starts. We were on loads for a year and then tapered down by 10g amonth until we were at a maint dose (1g/kg) we stayed on the maint for 3 years and then tapered by 10g monthly until we were off (to see if we were in remission) We were not. Symptoms started again after about 6 months. So we loaded again for six months and tapered back to a maint and have been on one since. In total, it will be 6 years this September. We are going to the neuro today in fact to try a wean again to seeif we are in remission yet. Please pray for us. Things do get better, you will be able to understand how he responds as time goes by. Probably the best advice I can give is set the presedence early, both with your son and doc. Let the doc know you are well versed (nurse) delicately of course so as not to insult his ego and that you might have some comments, ideas. As well, let your son know you are there for him unconditionally, but…also keep in mind you will have to side boundaries regarding him taking advantage of situations. There will be a certain amount of depression regarding inabilitie/friends, treatments etc. school will be missed and things build up. It is hard to find the balance between the boundaries and the compassion. There were many days absent from school in the begining w/ hospital stays, pain pt etc. 82 days the first year, 70 or so the next and once we figured thing out, we average about 28 or so. If possible, try to get in contact with the school asap so that you can alert them of the situation and have a 504 plan started. It is an accomadation paln to allow for things he might need because of a chronic condition. TRUST ME!!! It will only help you both. Starting in middle school is helpful so that the HS will already know what works. There is a new law (last year) that no longer requires a student be absent 14 days in a row if there is a chronic condition in order to receive homebound tutoring. You can get up to 10 hours a week of homebound tutoring. We do not use the ten hours presently because we no longer miss as much now that things are stable, but in the begining, we did. Last year freshman year we used probably 20 hours total for the year. Under our plan we are allowed to turn in work as soon as possible with no penalty. Mostly the tutoring was for Math. He was able to do everything else on his own in his time frame. You have to start with the independent accountability right off the bat or habbits will develop. If the school fights you mention due process and that will straighten things out right away. If you would like to talk, let me know and I could leave my # with the foundation. Also, keep a port in mind. Good luck, things will get better.