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IVIg Success Stories?


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Our DD11 will be having her first (and hopefully only) IVIg treatment in 10 days. I read so much on here about remissions that I'm wondering if anyone has had true and lasting success with IVIg therapy? To what degree did your child improve? How quickly after IVIg did you see positive effects? I'm looking for some hope and the knowledge that we are on the right path!

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I hope that you will get to hear some positive stories from other people and I hope that your story will be positive as well. Just wanted you to prepare yourself that it gets worse before getting better. So its not an instantaneous miracle... But hopefully you will see quick positive results.

Good luck!

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AdvocateMom--perhaps those coordinating the www.pandasnetwork.org could put you in contact with parents for whom IVIG has been helpful. You might want to try that avenue.

 

Many parents who have children who ARE now better/healed healthy and whole may no longer use this forum--

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My son has lasting improvement with each of his ivig's. His first one was in May, second in July, and third in August. He is at this moment, getting his fourth ivig. Lasting improvement has held after each one. However, he was very sick for a long time before a diagnosis (2.9 months). He didn't receive ivig until three years after the start of his sickness (pandas). I feel that that his a long time to be sick without treatment and it will take a long time to get better. I would not be doing a 4th ivig if his improvement wasn't noticeable afterwards. As a matter of fact, his doctor has order a high dose ivig every 6 weeks for 6 months to blast his immune system.

 

 

Things may get worse after the ivig but you will get glimpses of good things to come.

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I know you were asking for "lasting" or long term resolution, but thought I would post anyway-

My son had his first IVIG (low dose) on Jan. 6. By then, his disorted body image and all the obsessions/compulsion attached to it had gotten much worse, even scary. Also, in November, he developed a new OCD which involved having to re-read sentences. This worsened until just over a week ago, when he got "stuck" on letters, causing him to stutter aloud, when he had been reading silently! This was very scary too. However...

 

As of last Friday, EVERYTHING IS GONE! He HAD been asking me dozens and dozens of times per day if he was fat, if the food he was eating would make him fat, if his clothes made him look fat, and he spent hours examining his arms, legs, neck, face, belly for "fat." He has been reading normally since Thursday or Friday- no re-reading! He himself told me that his problem was "fixed."

 

This is exactly two weeks post IVIG #1!

Edited by Phasmid
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My DD14 has had great success with HD IVIg (1.5 g/kg) and adverse effects with lower doses (1 g/kg and under). With her first HD IVIg infusion she was in remission for 1 year. After 10 weeks with no improvement we saw a 75-80% reduction in severe motor and verbal tics, 100% reduction in violent rages, she started sleeping in her own bed for the first time in 10 years, grades went from Cs and Ds to all As, and she started making REAL friends for the first time ever. Within 12 months 100% of the tics went away and never came back. 

 

Then my DD went into severe exacerbation and the rages came back for a few months until she was hospitalized. In hindsight, I now know that she was not on the right abx (she was taking 250 mg Pen VK bid). Also, her vitamin D levels were catastrophically low. And we later found out she had another co-infection in addition to PANDAS/PITANDS. DD went on Augmentin XR 1000 bid, 50,000 IUs vitamin D3, and did another HD IVIg infusion. Again, we did not see any improvement for 10 weeks and then, just like before, the rages disappeared. It's been 10 months since she went into remission the second time and she is doing well.

 

However, I must add that while the IVIg helped enormously with her tics, rages, mood dysregulation, hyperactivity, social skills, and ability to focus, it did not help at all with her anxiety and scrupulosity (OCD). In fact, it kept getting worse. 

 

This led me to have DD tested for Lyme disease through IGX and sure enough, she was IgM positive. Also IgG positive for mycoplasma. It has been 3 months since we started treatment for Lyme (she is now on Augmentin XR, Azyth, and Tindamax). 

 

We are now doing a series of 3 HD IVIg infusionsto see if it will help with the anxiety and OCD now that she is being treated for Lyme. The first of the series (1.5g/kg) was at the end of November.  As DD was doing pretty well (this was the first infusion while she was still considered "in remission") I did not know what to expect during the 10 weeks post infusion.  With the first two HD infusions we had a difficult 10 weeks post infusion. This time was very different. No "turning back of the pages" or regression. I do not yet know if it will help with the anxiety or OCD as it has only been 7 weeks. If we see anything I expect it will be at the 10-week mark like before. We doing another infusion tomorrow, this time 2g/kg. And another 7 weeks after (also 2 g/kg). The reason we are doing three in 3 months is because our insurance provider only approved IVIg for 3 months. This is after they covered the infusions for 1 1/2 years and stopped. Then I appealed for several months. It was Dr. B who finally got the approval for us.

 

My guess is that time, continued treatment for the Lyme, and clearing of any other possible co-infections will ultimately distinguish the anxiety and scrupulosity. I don't know how much more we can expect from IVIg.

 

Having said that, I do firmly believe that the key to helping my DD was/is/will be (1) high doses Augmentin XR

(and she will be on this for years to come), (2) increasing her D levels, (3) HD IVIg infusions, and (4) clearing the Lyme and other co-infections. 

 

Nancy 

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I know you were asking for "lasting" or long term resolution, but thought I would post anyway-

My son had his first IVIG (low dose) on Jan. 6. By then, his disorted body image and all the obsessions/compulsion attached to it had gotten much worse, even scary. Also, in November, he developed a new OCD which involved having to re-read sentences. This worsened until just over a week ago, when he got "stuck" on letters, causing him to stutter aloud, when he had been reading silently! This was very scary too. However...

 

As of last Friday, EVERYTHING IS GONE! He HAD been asking me dozens and dozens of times per day if he was fat, if the food he was eating would make him fat, if his clothes made him look fat, and he spent hours examining his arms, legs, neck, face, belly for "fat." He has been reading normally since Thursday or Friday- no re-reading! He himself told me that his problem was "fixed."

 

This is exactly two weeks post IVIG #1!

 

Fantastic Phasmid!!!!!! YEY!!!

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I consider us an IVIG success story even though we have had three treatments this year. Each treatment has brought us back to normal and each time we have flared post-IVIG it has been with milder and milder symtpoms. We have had 2gm/kg over two days in January and then again in March just to be safe. We went all the way to August without any symptoms. My son is thriving in school and with friends. Within 4-5 days of treatment he is always much better. We have gone from severe chorea to down the spectrum and last time just anxiety and OCD. It has saved our life. We will plan to do it at home again every 4 months for a year and see if we can avoid symptoms all together. Some may say it is not a success because we have had to do it again but I can tell you it has worked for us. My son has started playing the guitar, spending the night out, rock climbing, and went to spend the night camp this past year. Our bad days have been few and tolerable. I am still not sure exactly what our enemy is, but IVIG has worked for us.

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I consider us an IVIG success story even though we have had three treatments this year. Each treatment has brought us back to normal and each time we have flared post-IVIG it has been with milder and milder symtpoms. We have had 2gm/kg over two days in January and then again in March just to be safe. We went all the way to August without any symptoms. My son is thriving in school and with friends. Within 4-5 days of treatment he is always much better. We have gone from severe chorea to down the spectrum and last time just anxiety and OCD. It has saved our life. We will plan to do it at home again every 4 months for a year and see if we can avoid symptoms all together. Some may say it is not a success because we have had to do it again but I can tell you it has worked for us. My son has started playing the guitar, spending the night out, rock climbing, and went to spend the night camp this past year. Our bad days have been few and tolerable. I am still not sure exactly what our enemy is, but IVIG has worked for us.

 

 

I'd say about the same for us. We have had 4 HD (2gm/kg) since July. Last one in Oct. Got way worse for 2 mos before getting better. I actually took her off abx for 2 mos she was doing so well- in retrospect, probably shouldn't have- got a fever and relapsed, but not as drastic. She is back on abx now, holding ok, still some OCD and tics but pretty manageable- rage is WAY down, and that was the worst for us. Doing well in school, and just signed up for softball. We just did ALOT of blood tests that weren't done at the start of this- been waiting to discuss with Dr for last 2 days...... still waiting. Depending on those results, we may go for another ivig. We suspect she has had this for several years, with the very severe exacerbation last April. I feel like even though the ivig hasn't taken away all the abnormal things, it has brought her personality back to normal between the tics and ocd. She is now the sweet little girl I knew at 3 yrs, It was subtle, but looking back, I can see that she was sicker than we knew for a long time- because she just wasn't herself. I truly feel the ivig has helped us/her regain alot of happiness, balance in our lives.

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Our son had 3 hdIVIGs September 2009, November 2009 and January 2010. We are over one year post our last hdIVIG. In August of 2010 we discovered all of our children have congenital Lyme Disease inclusive of PANDAS son. Prior to Lyme protocol our son was achieving many great days. Since treating for Lyme we have had some temporary resurgence of symptoms with rotation of antibiotic protocol due to herxhiemer reaction.

 

Right now our son's only remaining symptoms are frequent urination and a mild cough mostly at bedtime. Both these symptoms are new and cropped up when we added an additional antibiotic 23 days ago. We do not believe further hdIVIG will be warranted and we hope to have him fully off antibiotics in the next year to year and half.

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Advocate Mom,

 

I remember how you are feeling so here's our story. Our dd12 had her one and only (so far) 1.5g/kg 12 hour infusion of IVIg June 14 and 15, 2010. Prior to IVIg our dd had experienced all but 2 of the "symptoms" on the PANDAS list so we were convinced it was PANDAS. She had eleveated ASO and AntiDNase B titers, was on augmentin 875 twice per day, and had a CAm Kinase II of 166. She had had 4 normal functioning years prior to this exacerbation. She had had an extreme exacerbation at age 7.5. Ped had thought it was PANDAS but at that time the symptoms abated before any real idea of what to do about it became evident. Not so in 2010. Things just got worse and worse. Thankfully, she had eleveated titers this time (not at age 7.5) to prove it to a doctor or two, and the CAm Kinase II to reassure us (the doctors are less than interested it seems in the research end).

 

By the time IVIg rolled around our dd was quite dysfunctional across the board--not sleeping, not eating, unable to read or write, unable to interact with others, and yet, at the surgical center...day 1-she was pretty functional in front of the staff. Day 2 was another story. The doctor said that was good, he said it meant the IVIg was working.

 

Improvements:

After day 2--she slept.

She ate.

These two things helped us make it through to more improvement. I've read that the brain heals slowly, over a long period of time. This was quite true for us.

We had five long, challenging weeks and then things began to slowly and gradually improve.

 

We are now 7 months post IVIg. In mid Nov 2010 dd got "strep", culture was negative but clinically the ped thought it had all the signs of strep. Back to 875mg aug twice per day for 20 days. By the end of the 20 days, dd was the best she'd been in more than a year.

SO back to 500 mg aug once per day.

DD has been symptomatic 3 times since then all due to exposure. The symptoms are less intense than pre-IVIg, the duration is much less than pre-IVIg.

 

Although IVIg has not "cured" our dd, IVIG has decreased symptom intensity and duration.

And I can say without hesitation that I'll choose IVIg again to see the major symptom improvement it has brought our precious daughter.

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we do 1g every 21 days and have had 18 infussions.2 days after each is not great but after that its very good.Dans 16 and has had this for 13 yrs so were in a different boat than some others here Do what your Dr says!!

 

Melanie

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