Update 5 months out from IVIG

[mom md]

We went to see the immunologist this week. We are now 5 months out from our IVIG. We did one in January and one in March. We see VERY minor things (for example an exaggerated fear of bees for a few days, a little more hyper, mild insomnia...but the last two could also be excitement over school but I think at this point my maternal instinct is right). She was thrilled we were doing so well 5 months out, but wanted to do one more IVIG in the next month because we are seeing mild signs and his titers are still high(ASO=390, and antiDnaseB 1:460...that is MUCH better for him). Her plan at this time is IVIG every 6 months until puberty. We can do it sooner if needed or next time if he is doing well, push it out a while. We will be doing the rest of his treatments at home.

 

I showed her the NIMH release this month saying PANDAS existed and she was thrilled. She said with the two studies and that she could easily go into battle if needed. So far BCBS has paid but they did deny it last time and then covered it after we faxed them all of his records. She said she had no clear data to support her puberty theory but she is very optimistic. She said if we keep his immune system under control until then the immune system somewhat "resets". She said they have to repeat allergy testing on any child after puberty. That, along with the BBB closing should work in our favor.

I left feeling so good. We finally know the enemy and what works for tretament. If we have to do a few treatments a year, we can handle that. This fall(Nov) will be the true test. For the last three years that is when we spiral down. We did have a strep exposure (his sister) in June though and seemed to get through it well. This summer he went to spend the night camp (unbelievable), has taken up rock climbing(this is the child who would not go on anything elevated), and tonight has a friend to spend the night. We are healing and getting back to our "new normal".

[forjpj]

So happy for you!! I'm crying tears of joy!! We will be having ivig next week. I'm praying it goes half as well!! I'm starting to get nervous about the after-effects and the worsening of symptoms!! Hearing your story will help me get through those moments!!

[Mary M]

Thank you for sharing. Your success with IVIg and a doctor who seems very invested in your child's future is heartening!

[mom md]

I think one of the reasons we only had 10 days of things getting worse after IVIG is that we did PEX 6 months before. I think the antibodies we were targeting had only been in his system for 6 months. If we had not, I shutter to think of how bad it would have been. We did not have a clear idea of when PANDAS started but I think it was when he was he was a toddler. His Camkinase was 201, his ASO was 950 and his antiDNase B 1750. He was in full chorea before we connected the dots. At first when he relapsed after PEX I wondered if we should have just done IVIG. Now I think we helped speed up our recovery and make our IVIG treatment better.

[mom md]

I wanted to add though that we did PEX because we were desperate and Dr. L also helped guide us in that direction. I don't want to imply at all that anyone should do PEX before IVIG like we did. I think IVIG is definitely a great choice. If things get worse that is usually a sign that it is doing its job.

[Johnsmom]

Wow. Rock climbing? You give me so much hope! I am ecstatic at your progress. Keep us posted.

Johnsmom

[Worried_Dad]

AWESOME news, Mom MD!!! Out of curiosity, what abx (kind and dose) is your ds on now?

[mom md]

He takes azith 250mgqd. The pediatric infectious disease doctor said the strep prevention properties are not as great as penicillin but the immune modulating factor is worth it right now. She wants to reserve the cephlasporins and augmentin in our back pocket if we get strep. At some point we may change to penicillin but I do not want to change anything now because it seems to be working. She did want us to check his hearing twice a year. Very rarely the macrolide drugs can cause hearing loss. Typically it is clrithromycin but she wants to be safe.

[Fixit]

He takes azith 250mgqd. The pediatric infectious disease doctor said the strep prevention properties are not as great as penicillin but the immune modulating factor is worth it right now. She wants to reserve the cephlasporins and augmentin in our back pocket if we get strep. At some point we may change to penicillin but I do not want to change anything now because it seems to be working. She did want us to check his hearing twice a year. Very rarely the macrolide drugs can cause hearing loss. Typically it is clrithromycin but she wants to be safe.

 

there are so many little nuances that need to be remembered...ie red dye, calcium blocking absorbtions etc....

 

thanks for the update...can you refresh my memory...how old is ds..how many years before you started to treat and think he had onset...

 

Thanks MOMmd

[mom md]

My son is 9. He started with svere ear infections the first year of life, then night terrors at 16-18 months. VERY high maintenance child. At 4-5 yrs he had rages and mild OCD, axiety. At 5-6 he started with ADHD type behavior(poor impulse, mood swings, hyperactivity, inability to sit still, sleep issues). This all waxed and waned and then at 7 he started with tics and then chorea. We had the diagnosis at 7, started azith then, did PEX at 7 1/2, IVIG twice age 8. He turned 9 in April. It has been a marathon. We saw 14 doctors in two years before we figured it out. We were given risperadol, clonidine, SSRI's, klonipin, clonidine,adhd meds, parkinson's drugs, etc. I was given perscriptions for many that I never filled. I keep saying, "I am not giving this to my child because we do not know what we are treating. We are treating the symptoms, not the problem." Now he is normal on an antibiotic and some supplements. He takes nothing else.

[bubblegum]

Hi mom md,Could you e mail or pm me?Thanks!

[momaine]

Awesome! Thanks for sharing your success.

 

I just want to add one more thing to those worrying about the worsening of symptoms post IVIG. I was scared because of what I had read on here. It really wasn't that bad though. (at least for us) Yes, some symptoms worsened, but some got better right off the bat. So, even though my dd was repeating more, she wasn't even a tenth as anxious about it. She didn't rage or cry or want to die. She just repeated, sort of matter of factly. She'd have some moments where she got more emotional, (last night she was a bit frustrated, we are 4 days post 2nd ivig) but she got over it quickly and went to sleep. The difference in my child post IVIG is astounding. I cannot wait to see what the next few weeks bring.

Instead of dreading them, I am looking forward to them. I have more hope than I've had since we started this journey.