We are significantly worse with first IVIG...need some encouragement&#

[pandas mom]

My DD 6 (birthday tomorrow) had IVIG 6 weeks ago. She is ten times worse than before IVIG. Please let me know if your child has experienced this, too. My instinct tells me to keep going for a few more rounds. If we stop, then we'll never know if it would have helped our girl. She is due for her next treatment in two weeks, and I would be so appreciative if anyone could share like stories. Do you have a child that got significantly worse before he/she got better? Lyme and mycoplasma are also factors but both have been actively addressed for months.

Also, Harvard Pilgrim has denied coverage, so we are using any resource we can think of to fight the insurance company. Thanks to those who have shared strategies for appeal.

Thank you for any words of wisdom--

[tpotter]

My DD 6 (birthday tomorrow) had IVIG 6 weeks ago. She is ten times worse than before IVIG. Please let me know if your child has experienced this, too. My instinct tells me to keep going for a few more rounds. If we stop, then we'll never know if it would have helped our girl. She is due for her next treatment in two weeks, and I would be so appreciative if anyone could share like stories. Do you have a child that got significantly worse before he/she got better? Lyme and mycoplasma are also factors but both have been actively addressed for months.

Also, Harvard Pilgrim has denied coverage, so we are using any resource we can think of to fight the insurance company. Thanks to those who have shared strategies for appeal.

Thank you for any words of wisdom--

 

Which doctor is doing the IVIG?

 

Also, get a copy of insurance company's policy on IVIG coverage (they have to have a policy on what is covered.) I got that list, and found one of the conditions listed that my son had. BUT (and this is important), there were specific stipulations that had to be followed (e.g., I had to prove just how sick he had been from it, how it limited him, etc.) I followed the stipulations exactly (showed how sick he had been by getting the pediatricians visit records for the past 1/2 year, and found that he had been treated 8 times in 1/2 a year for bacterial infections, and that he had missed excessive days of school for the past few years (I included the attendance records that I had kept.) That's the best piece of advice I can give. We had it coded as specific autoimmune deficiency (SAD) instead of PANDAS, so I don't know if that helps, but he did qualify in the end (took a lot of fighting, and followup.)

 

Good luck. I'll keep my fingers crossed for you.

[kimballot]

I am so sorry you are going through this. It is very disheartening when this happens.

 

My DS15was MUCH worse after his first IVIG. We were fortunate that he qualified for repeated IVIG and he has had IVIG for over a year now - every 8 weeks. We started seeing some improvement around 3 months post IVIG #1, but really continued to have pretty extreme problems for several more months. We also worked with a LLMD to adjust his antibiotics and his supplements and I do believe that helped. Today, he is doing very well. He is healthy and has not had any infections in 14 months. He is going to school and passing his classes. There is still room for improvement, but he is headed in the right direction!

 

I don't know if he would have improved without repeated IVIGs - many people do see slow steady improvement with only one IVIG. We repeated due to immune deficiency.

 

Hang in there and best of luck getting insurance coverage. Do check for immune deficiencies if you've not done that already.

[pandas mom]

My DD 6 (birthday tomorrow) had IVIG 6 weeks ago. She is ten times worse than before IVIG. Please let me know if your child has experienced this, too. My instinct tells me to keep going for a few more rounds. If we stop, then we'll never know if it would have helped our girl. She is due for her next treatment in two weeks, and I would be so appreciative if anyone could share like stories. Do you have a child that got significantly worse before he/she got better? Lyme and mycoplasma are also factors but both have been actively addressed for months.

Also, Harvard Pilgrim has denied coverage, so we are using any resource we can think of to fight the insurance company. Thanks to those who have shared strategies for appeal.

Thank you for any words of wisdom--

 

Which doctor is doing the IVIG?

 

Also, get a copy of insurance company's policy on IVIG coverage (they have to have a policy on what is covered.) I got that list, and found one of the conditions listed that my son had. BUT (and this is important), there were specific stipulations that had to be followed (e.g., I had to prove just how sick he had been from it, how it limited him, etc.) I followed the stipulations exactly (showed how sick he had been by getting the pediatricians visit records for the past 1/2 year, and found that he had been treated 8 times in 1/2 a year for bacterial infections, and that he had missed excessive days of school for the past few years (I included the attendance records that I had kept.) That's the best piece of advice I can give. We had it coded as specific autoimmune deficiency (SAD) instead of PANDAS, so I don't know if that helps, but he did qualify in the end (took a lot of fighting, and followup.)

 

Good luck. I'll keep my fingers crossed for you.

 

Dr. B. is the doctor. We were able to document (with help from our pediatrician) all of our daughter's illness, but it didn't seem to matter. The only thing that mattered was that the exacerbation was not due to strep- shingles, this time. We are not giving up, though:) Thank you for the ideas- we'll likely be switching insurance companies, so I'll tuck this idea in my pocket and use it for next time!

[pandas mom]

I am so sorry you are going through this. It is very disheartening when this happens.

 

My DS15was MUCH worse after his first IVIG. We were fortunate that he qualified for repeated IVIG and he has had IVIG for over a year now - every 8 weeks. We started seeing some improvement around 3 months post IVIG #1, but really continued to have pretty extreme problems for several more months. We also worked with a LLMD to adjust his antibiotics and his supplements and I do believe that helped. Today, he is doing very well. He is healthy and has not had any infections in 14 months. He is going to school and passing his classes. There is still room for improvement, but he is headed in the right direction!

 

I don't know if he would have improved without repeated IVIGs - many people do see slow steady improvement with only one IVIG. We repeated due to immune deficiency.

 

Hang in there and best of luck getting insurance coverage. Do check for immune deficiencies if you've not done that already.

Thank you!!! I needed to hear that from someone. Next appt. with lyme dr. is just after next IVIG, so maybe he can recommend something new if she continues to decline. Glad to hear your son is doing better!!

[LNN]

My son got significantly worse for 10 weeks post IVIG. I never saw any gains, only losses, and it took a long time to get back to where we'd been the day before IVIG (about 4 months). It was incredibly hard on him and the whole family and we all vowed together to never do it again. It just didn't bring us anything and we never felt that a second would be the right thing to do. It was just the wrong treatment for my son.

 

The one bright spot was that his response led us to test for lyme and then pyroluria. It's been 20 months of lyme treatment but he's now in a better place than he's ever been in his life and we're looking at stopping abx soon to see how he does. He is currently symptom-free.

 

Not trying to say which is the right path for you. Only letting you know that with lyme, I think IVIG has the potential to provoke wicked herxing - more than the body can handle - and that it isn't the only path toward health. I feel it's a supportive therapy in many cases, but in my son's case, it did temporary damage and his did better healing-wise using other treatments. I personally feel IVIG isn't the only option, particularly for kids who have non-strep triggers but even for those who do. Makes me a minority and I'm not trying to discourage anyone or criticize anyone who feels differently. Just offering a alternate viewpoint. If you decide to proceed with the second IVIG, I'd seriously urge you to put a detox program in place prior and particularly after the IVIG. Parents on the lyme forum may have some godd ideas for this.

[ptcgirl]

Okay, maybe this is a stupid question, but why does IVIG sometimes make it worse for a while? Is it a herx? Has anyone asked one of the doctors about this? My daughter is having her first one on Monday and I'm pretty worried about what it is going to be like for her. She did have Lyme (along with Babesia and Bartonella) but went on 4 abx at once (along with a herbal supplement). She herxed BIG time. Couldn't get out of bed. Pain all the time. OCD/tics were worse. Awful. Afterwards, the pain and fatigue improved but never restored her mind to previous state. Last igenex showed no lyme bands at all or co-infections. Her immune system is worsening (according to tests) and both LLMD and Dr B think IVIG will work. I sure hope we don't regret doing it....

[PowPow]

ptcgirl:

 

my child was also treated for lyme et al and her physical symptoms improved but psych did not. In fact she worsened (maybe coincidentally). IVIG did not seem to help, though maybe it was a slow improvement- we saw a difference 3-4 months later (though that was one month after pex, so we attributed it to that) She worsened again, with good improvement a month after repeat pex a few months later.

That improvement did not last either. We are seeing some improvements now, possibly due to Augmentin 100omg XR BID.

 

Give the IVIG a shot. You will not know until you try.

[sf_mom]

The response post hdIVIG was similar to an extended herxheimer response for us. Six months after 3 hdIVIG treatments for our older son we found out we were dealing with multiple chronic infections. Had I known what I know now its very possible I might have even picked up on a cycle of increased symptoms post treatment potentially indicating how he was infected. We did see gains from hdIVIG but it was also not the answer to full remission of symptoms. Out here on the West Coast/Northern CA we do not have access to regular hdIVIG and would need to travel to Dr. B or Dr. K. For many, that is just not possible. As a result, those of us dealing with chronic infections are seeing the same small group of treating Dr.'s. What we are finding is its the right "combo" of antibiotics that cross the BBB that melt the OCD away. Granted, most of us are with an integrative Dr. and we are utilizing detox methods and looking at other things that might be creating a hyper immune response inclusive of allergies, gut issues, heavy metals, viruses, methylation, KPU, biofilms, etc. Addressing all of these additional issues has been beneficial but not the complete answer either. Unfortunately sometimes it is trail and error with the right combo of antibiotics, the herxheimer response is also counter intuitive making it extremely difficult for some parents to tell when treatment is working and even finding the combination antibiotics can be difficult. For some dealing with chronic infections it has taken a combination of four antibiotics to have success and often these children have many, many infections.

 

Anyway, If the hdIVIGs do not work just know there are other things to investigate at that might bring remission of symptoms. Wishing you all the best on your journey to recovery.

[JAG10]

6 weeks post your 1st IVIG is a little early to panick. I believe one of our beloved docs calls it the "suicide period" and he means for parents!

That being said, I think LLM and SF Mom make some great points. If it turns out that IVIG isn't the right treatment for your child or others, if over time (months) and possibly a few treatments your child's behaviors aren't trending upward toward neuro typical, you are not out of bullets to beat this beast. It is prudent to be cautious and stick with one treatment at a time, so you can document what is going on. There are no failures because even when something doesn't work, a piece to the puzzle is provided; meaning you will learn by successes and failures of treatments. But if you try treatments halfway and quit, you won't know what to rule in and what to rule out. The uptick in behaviors can be troubling, but most here have experienced that whether via IVIG or tri-abx regimen.

[ptcgirl]

Very helpful advice all around. I talked to dr b tonight and am feeling more confident about Ivig. I know I will likely be on here screaming a few weeks from now but if long term it cures.... That would be a wonderful gift from God.

[pandas mom]

Thank you for all of your responses. My instinct tells me to pursue 1-2 more treatments and put some necessary supports around her (thanks, LLM). I'm afraid if we don't follow through with this plan, then we might not be sure about the effectiveness of IVIg for our girl. Dr. B had warned that some kids really struggle between the first two treatments. I guess I just chose to hear what I wanted to hear and be hopeful. Thank you again!!!