For those doing monthly IVIG

[dcmom]

Hi everyone.

 

As most of you know I have two dd's with pandas. One has had pex, the other only steroids. While they are both managing, and the one who had pex is 90% better- they both still suffer some pandas issues. They both seem to react to many illnesses, not just strep, now.

 

I am contemplating IVIG. I know from the forum that likely my kids will need more than one. I am kind of holding out to see how those who are doing monthly ivig progress in the next six months.

 

I, as I am sure many others here, would love to hear your child's journey with the monthly infusions. What is the progress like? How much better are they, and how many symptoms remain? If you could please remember to give the forum an update every three months or so, and especially at the 1 year mark- it would be so helpful to us!!!!

[sf_mom]

Our son is 5 days post his third IVIG treatment. Treatments have been through Dr. K every 8 weeks at the higher two day dose. Corsa had a sudden on-set at the end of June and presented mostly with TICS (many) and mild OCD. We believe he was sick for the 1 1/2 year prior to sudden on-set not realizing some of the low level behavior issues and cough were PANDAS. He improved immediately on antibiotics starting in August but not all symptoms were resolving.

 

First IVIG: Corsa improved rapidly and had some perfect days. We had him on and off 500 m.g. of Azithromycin due to other illnesses in the house. At six weeks post IVIG he was exposed to strep and the half life of IVIG had already expired. From weeks 6 to 8 we saw an increase in symptoms.

 

Second IVIG: Corsa immediately improved again but was lowered to 250 m.g. Azithromycin and things seem to be very bumpy (mood liability, stomach aches, headaches, mild TICs) but he still improved. At 4 weeks post second IVIG we upped the antibiotic to 500 m.g of Azithromycin per day and within 48 hours we saw a huge improvement that continued until week 7 1/2. Just prior to third IVIG we had coughing jags, a strange 'hop' as he was walking (only noticed this for about 2 or 3 days prior to IVIG), he mentioned to me that his brain was repeating things he thought about (like a broken record) once in a while, urinary frequency the night before IVIG (first time I had ever seen that symptom). Dr. K felt he might have pulled out of these symptoms had we given him more time.

 

Third IVIG: Five days post treatment, Corsa continues on the higher dose antibiotic and is 'almost' completely symptomless. I hear a slight cough here and there or a jag of coughs. This morning he did not cough at all. Says his brain is fine. No mood liability. Sleeping well. At this point, I don't want to jinx the situation and say he is 100% but I feel like we are getting close. Once the half life of the IVIG expires we will have a better idea if he can manage on his own.

 

Our plan going forward. Dr. K doesn't want to retreat him again until he is at least 12 weeks out from last treatment. He wants to see if his body can manage on his own and work through the bumps. We plan to leave him on the higher dose antibiotic this time until the cough is entirely gone and then we will SLOWLY lower antibiotic as long as symptoms do not increase. We are also going to try high dose Probiotics so he can manage ingested bacteria's in his gut prior to being distributed throughout his body.

 

Hope that helps and I will update as we move forward.

 

-Wendy

[Debbie1]

Wendy,

 

Can you remind me how old Corsa is? His symptoms were mainly tics and they have resolved with IVIG? Did you see resolution of his tics after the first infusion or did it take more than one to see results? We are considering monthly IVIG for my dd12. Her symptoms are primarily persistent tics that are not currently responding to antibiotics, although she has responded well to both antibiotics and steroids in the past.

 

Thanks,

Debbie

[sf_mom]

Corsa will be 6 in March. The TICs are resolving with IVIG and HIGH DOSE ANTIBIOTICS. We had some TIC free days with prior treatments. The third round has really helped but we are only 5 days post treatment so I am hesitant to say he is TIC free yet and won't need another treatment. I truly feel we need to be six months to year at a 100% post any IVIG treatment to feel confident this is behind us.

 

I am fairly certain Lyme is treated with IVIG. Correct me if I'm wrong.

 

-Wendy

 

Wendy,

 

Can you remind me how old Corsa is? His symptoms were mainly tics and they have resolved with IVIG? Did you see resolution of his tics after the first infusion or did it take more than one to see results? We are considering monthly IVIG for my dd12. Her symptoms are primarily persistent tics that are not currently responding to antibiotics, although she has responded well to both antibiotics and steroids in the past. She recently had a positive lyme test, so that is probably complicating things this time around.

 

Thanks,

Debbie

[P_Mom]

Lyme is treated with high dose, long term antibiotics....(depending on when the infection is caught.)

[sf_mom]

I have a friend who had undiagnosed Lyme Disease for years and was treated with IVIG. I just wasn't sure if its was widely used for all Lyme Disease cases.

 

This is what I found.

 

IVIG can be considered as a treatment option for demyelinating polyneuropathy associated with Lyme disease.

 

 

 

Lyme is treated with high dose, long term antibiotics....(depending on when the infection is caught.)

[P_Mom]

The IVIG would treat the demyelinating polyneuropathy (my mother-in -law and 3 of her siblings have it)..not the Lyme....that is why the statement said "associated" with Lyme disease..

 

If your friend had undiagnosed Lyme for years....high dose, or even IV antibiotics would be imperative in that case. The IVIG was probably used to help the affects associated with Lyme...but, IVIG would certaintly not kill all the Lyme bacteria alone.

[sf_mom]

Got it, thanks... I'm not sure about the antibiotics she is on.

 

-Wendy

[sf_mom]

DCMom: I also wanted to let you know, my friends son who had RF and is now PANDAS, had one IVIG treatment with Dr. K in late November..... his primary presentation was anxiety and OCD and is progressing well. So far, he doesn't appear to need another treatment but he is only 8 weeks post IVIG. I will update on him as he improves.

 

-Wendy