IVIG 1-month update

[kimballot]

Ok.. DS 13 (now 14) finished IVIG 4 weeks ago. I've not posted about this because he did SO well the first couple of weeks that I did not want to jinx it... and he then took a nose dive the next two weeks... so here is the post-

 

Week 1 - Had HDIVIG on Mon & Tuesday. We prepped him well with benadryl, prednisone, ibuprofen and lots of water starting the day before (prednisone started 2 days before). He had benadryl and prednisone in his body 1/2 hour before IVIG started. He drank like a champ. He had a slight headache a couple of times during infusion, but the nurses were amazing and they slowed down the drip, increased the fluids, and gave him whatever meds he was able to take. There was no post infusion headache and he was only tired after the infusion. We drove home (8 hours) after the second infusion with no problem. He did not go to school that week- mainly due to fatigue. He also had a very bad nosebleed on Thursday night, which we attributed to my very attentive ibuprofen dosing every 6 hours for 5 days and his typical pattern of small nosebleeds due to his sinusitis.

 

Week 2- he happened to have winter break and there was no school that week, so anxiety and demands were low. He was pleasant and fun and really seemed to be doing well. Eye blink tics were gone, anxiety was down, and he was sleeping with his door closed and his lights off (that was new). He sat down to do his homework and he could read his handwriting. He said "Mom - Does IVIG help with handwriting?". He drew pictures of little cartoon characters with tiny, detailed eyes - because he could. He had color in his face and no dark circles around his eyes.

 

Week 3- I started to see hints of depression. I had not seen this in many years. He went through a very bad bout of depression 7 years ago - just before having his tonsils removed. A return of this symptom was my greatest fear. This was NOT a page I wanted to turn back to. I emailed the teachers and counselors and called the pediatrician. At first no one else saw it, but by the end of the week the teachers were exhausted as it had progressed to opposition and defiance. Very scary for me. That weekend was horrible - spent mostly in bed in the dark with the covers pulled up over his head.

 

Week 4 - Depression / opposition peaked at the start of week 4. Facebook posts became very dark and scary. Friends were asking what was going on. Family members noticing the change. School wondering if he started using drugs due to the very sudden change in personality. Me checking on him all the time to make sure he was not hurting himself. Rages were up - tried to run away at the start of week 4. Asked to go to a foster home. It was ugly. I thought I was prepared for this, but when it hit so suddenly I realized how ill prepared I was. (I now have a plan in place - know all the community supports, who/what to ask for if I have to call the police, the best number to call for teens in crisis, and local family members who can run over and help talk him down if I am not effective).

 

Gradually, the depression and opposition started to fade toward the middle of week 4, and I started to see traces of my son again. Right now, he is having lots of trouble with focus and learning in school, but the depression is opposition is down to about 60 percent of his waking day. Still seeing some rages - swearing and calling me names that would never be tolerated - and my biggest fear now is that this will develop into a learned pattern.

 

He also developed a cold toward the end of week 4. I took him to the pediatrician today and he is thinking it is "just" a virus I do have to say that it seems to be running its course like a cold does in most kids - and not turning into a sinus infection like we have always seen with my son. I don't know if the virus could have triggered some of what we saw at the start of week 4... but it certainly does not seem to be negatively impacting him now as he is getting better each day.

 

Plans: The pediatrician was primed before our visit today and he spent some time talking with my son about his feelings today. That seemed to work as my son left and asked me about finding someone for him to talk to. This is very good as I really want him to have someone to talk to regularly as his symptoms change.

 

Also, we started working with a new neuropsychologist just before IVIG. She has a team consisting of herself (she works mainly with parents), and two teachers (one acts as an academic coach in the home and one works as an organizational coach in school). She specializes in kids with medical conditions and in kids with anxiety. She has never worked with a child with PANDAS before (I bet she has but no one knew it!).... but everything she has to offer seems to be perfect for my son. We are waiting for all the team members to have time in their schedules, but he should be starting in the next couple of weeks. Hopefully the depression and opposition will be down by then so they will have something good to work off of!

 

So - that is my PANDAS update! It was one year ago this week when the first PANDAS doctor confirmed that my son had PANDAS... what a journey it has been!

 

Thanks so much to ALL of you who have shared your experiences and helped me be as prepared as I could be for this. You all are the BEST and I am so happy to be a part of this forum!

 

EDIT:I posted an 8 week update here http://www.latitudes.org/forums/index.php?showtopic=13259&st=0&p=109926&fromsearch=1entry109926

Edited June 18, 2011 by kimballot

[dabel]

I know too well the depression that you are talking about. This is a HUGE and SCARY issue for my one son. I pray that your son's depression continues to lift and that he heals quickly and completely. The post IVIG time can be tough because we put so much hope in that little glass bottle! We tend to watch our kids like hawks fearing the worse and hoping for the best! I am sorry what you feared most you saw. Hopefully that part of this journey is behind him and he will continue on a positive trend. Hang in there!

[SSS]

Loved your post, thank you for sharing. I, too, am in the post IVIG and it's been some of the hardest days yet.

Your story was very helpful to me.

You are a fantastic Mother--your son is lucky to have you.

[3boysmom]

We are considering IVIG for our ds11. He has improved very much with antibiotics over this year and a half...my fear is that we have turning back of the pages that does not reimprove to wheee we currently are. Has your son returned to the baseline that he was at before IVIG or are things still worse than right before IVIG? I hope the depression continues to lift....it is heartbreaking to see! Prayers to you and your precious son,

Linda

[peglem]

Wow, Kim, what a roller coaster ride! As I read, I kept switching from happy for you to concerned and ohno! Prayers that you see continued improvements with no more of those backward steps. Asking for "someone to talk to" is HUGE!

[norcalmom]

Great summary. I would say that ABSOLUTELY that cold effected your child. Also, healing post ivig is not linear - it an odd presentation of symptoms that come and go. Its so hard to sit back and "wait" for the healing. Its like watching grass grow - and every once and a while someone comes in and mows the lawn. I know some docs lower or remove antibiotics post IVIG - we did not do this (I did it for about 3 weeks, and in the face of returning to school in Sept - went back up to regular dose azith). Its still cold an flu season - so my only advice would be to try to keep him as healthy as possible. My son still reacts to colds - but it is much shorter (only about as long as the cold) and not nearly as accute.

 

Best wishes for continued healing!

[JAG10]

:lol:

 

Love that analogy of watching grass grow and then someone mows the lawn!!!

 

Very clever!

 

Hang tough, Kim!

Edited March 16, 2011 by JAG10