4-month IVIG update

[kimballot]

I thought I'd post another one month update on DS14 who had his first IVIG in February, and had an exacerbation with major depression, defiance and rages beginning two weeks later. I just read over my 3 month update (http://www.latitudes.org/forums/index.php?showtopic=13604&st=0&p=112576&fromsearch=1entry112576) and realize how far we have come this month!

 

Week 13- had difficulty getting up to go to school. Refused to do homework and I stopped pushing or asking. Rages were less frequent and shorter duration- usually involving something like throwing a remote control on the floor.... but were still present. I continued to see improvement that was first noted when we stopped singulare 2 weeks prior.

 

Week 14 - DS started on an antibiotic protocol for lyme challenge. I had been told to expect an exacerbation of symptoms around day 3 if there was lyme. He did have the worst day of the entire month beginning at the end of day 3, but I don't know if that is the lyme medication or my anxiety that triggered it. The day ended with a phone call to police, who came out, calmed him down, and reinforced my authority. I feel like a total wimp calling them, but this is the safety plan we have established and the police officers are briefed by the juvenile unit before they come out, so they know there is a medical issue that triggers neuropsychiatric symptoms. I have to say it seems to work. That was the last phone call we made. (I don't want to jinx this - but I am hoping it is the last one ever. DS said his body felt like he had a cold, which I attributed to the lyme meds.

 

Week 15- DS continued to show improved mood on doxy and flagyl. Teachers commented that he is no longer angry and the goofy kid they knew at the beginning of the school year is coming back. I don't know if it was the ABX or the supplements as I was being very regimented about supplements, and was including daily charcoal. I also added CoQ10 and B complex on the advice of the LLMD. DS had allergy flare up mid week- but that only lasted a few days.

 

Week 16- DS says he feels better than ever. Doxy and Flagyl ended at the end of the week and DS asked if he could have them back (I am putting him back on zith until we get the results of the lyme tests - then will talk to all the docs about next meds). Says he has more energy than usual and also that he is losing weight (Weight gain started 2 years ago with undiagnosed sinus mucocele). He saw ENT and the doc was thrilled with DS sinus status since IVIG - no sinusitis in 16 weeks is a record for him!!

 

The biggest problem now is that it is the end of the school year and he is completely lost in his classes. One counselor said being in exacerbation for 2 months and now trying to take final exams was like leaving in the middle of the movie to get popcorn and missing the most important part - then coming back at the end and trying to have a discussion about it! I am not pushing school and classes for now - He needs a summer break and needs to continue to heal. IVIG #3 is scheduled soon. He will see Dr. M this summer and we will see what she recommends for school - then we will meet with the school and establish a plan for next year.

 

Thank you all, again, for all of your support and courage. I hope I can continue to post improvement!

[LNN]

I'm so glad to hear all this. Such a hard, long climb back from the brink - the whole family should be proud of your collective efforts! Glad DS is feeling glimpses of good health - so sweet! Hope it continues!

[jenbug]

Glad to hear he is having progress! Keep up the hard work mom!

[lynn]

I'm so glad that things are looking up! I just wanted to add that whole process of trying to glue normal school life onto a child with PANDAS in exacerbation is just appallingly hard. However, with my son what we have seen is that if he was at school, even if he was in that state where anything a teacher or parent said about, say, geometry, appeared to mean nothing but "blah blah blah" to him, he is still actually learning. When things are a little better, the information reappears, apparently having been neatly filed under "other". For my son, the problem with bad grades is that the OCD/anxiety/ADHD fuzz makes it too hard to read and understand the questions, not that he doesn't know the answers. If your DS is like mine, you may find that he can actually sit for some of the exams when things are better, especially if your guidance counsellor is willing to do it on a provisional basis.

[JAG10]

Kim- You must be so encouraged! It is so hard to resist the urge not to want it all; the temperament, the health and the academic success....and maybe you shouldn't resist it. I draw the line with academics with my girl when she is clearly incapable due to cognitive dysfunction symptoms, but if I waited for complete remission or health, well...she might still be in kindergarten instead of sixth grade, lol. Here's praying for continued health!

[tpotter]

I am so happy for both of you. You guys have been through a lot. Here's hoping it all continues.

[lismom]

Just saw this! so good to hear! Keeping fingers crossed! kathy

[Mary M]

Hearing positive reports like this really make it so much easier to get through a day! Thanks for sharing...we can all use the hope...It is my belief that even the smallest successes are vital to any lasting effect and it looks like your ds is recognizing those successes, attributing medical care to them (wanting to continue abx means he sees the connection). All wonderfully good news!

Mary

from Michigan