Were you able to do just one IVIG with Dr.B?

[Lkaanda]

Just recently had a visit with Dr. B.. We have been talking about doing IVIG for my son. We had tried to get it covered in the past through our insurance, which was denied.Each time we talked about it, my husband and I were under the assumption it was for a one time IVIG. Even this recent time we discussed the cost as being somewhere around $6000 which our insurance will not cover.

While talking with the woman at the office to make the appointment, she is reading off his prescription and mentions "every 4 weeks" in the middle of it all. Of course I ask her what that is about and she says they don't do it only one time. She said doing it only once can actually cause more harm than good. This is news to us. If someone said he would be cured after so many times of doing it, of course we would find money somewhere. But to spend all that money not knowing if it will even help is tough.

I though I have seen people on here say they have had it once or twice and some have had luck with it. Just wondering if anyone has had that experience. Dr. B. won't be back in the office til Monday so can't find info from him just yet. Thanks for your help.

[MomWithOCDSon]

I'm sure others will chime in here, and many have for more experience in this area than do I, but I wanted to make sure and keep the thread alive and can at least tell you what I've seen.

 

When IVIG was first being implemented as a treatment for PANDAS, the thought was that a single high-dose infusion, perhaps two at the most, was all that would be required; there are still practitioners who generally follow that protocol, and there are children for whom it has been a successful treatment.

 

However, for PANDAS suffers who have a documented immune deficiency (if your child has this, it should have been explained to you at some point), then regular IVIG treatments for a period of time are not atypical; but I would also think that, provided your child's blood work speaks to that immune deficiency, your insurance should cover at least a portion of the treatment.

 

In the end, I think you're going to need to speak directly with Dr. B. for a fuller, better explanation as to the treatment protocol and the reasons behind it; unfortunately, I don't think that should have been left to the scheduler or receptionist behind his front desk.

[LNN]

We did 1 IVIG with him in 2010. At that time, he was bucking the normal protocol and advocating for multiple high-dose IVIGs - generally every 8 weeks for roughly a year and then seeing where kids were at. The other clinicians were only doing one HD IVIG and I believe that remains the norm. It's what was used in the most recent Yale/NIMH research. I think it's one of those topics that you can find very strong opinions on for both sides.

 

The reason we only did 1 treatment, despite Dr B's desire to do more, was that my son had a very severe response to it. It set off 10 weeks of a very bad time. In hindsight, I think it was because he had undiagnosed lyme at the time and by boosting his immune system so strongly and abruptly, we set off a large herxheimer response. It wasn't something we felt we could put our family through a second time and we ended up leaving Dr B for a lyme-literate MD who was able to restore my son's health without additional IVIGs.

 

I initially felt a lot of pressure to do IVIG and felt I had an obligation to do everything within our financial means to help my son. This also included doing plasmapheresis 10 months prior to doing IVIG. Looking back 5 years later, I can say I shouldn't have equated the cost of treatment with being the "best" treatment. In the end, the things that got my son well were fairly low cost - combinations of antibiotics, fixing a zinc deficiency and adjusting his vitamins to match his body's individual needs (you'll find many, many posts from me on the subject of methylation, which is what I'm referring to).

 

I'm not anti-IVIG. If we hadn't done it and had a horrible response, maybe we wouldn't have found the lyme. I know lots of parents who feel it's really helpful. But...it's not the only path to recovery and if you can't swing it financially, know that there are other equally effective ways to get there. You don't have to cash out your IRAs or college funds. And the argument for multiple IVIGs has two sides. Don't let yourself be pressured into a treatment if it doesn't make sense for your family.

[tj21]

ds15 had first high dose IVIG March 2015 and we'll be doing a 2nd Nov./Dec. this year. Originally the first was to "jump start" his immune system, which I thought was the initial idea w/PANS or PANDAS. However since the half-life of IVIG is only 3 weeks, after a few months, in our case he was back to his low baseline (well, slightly higher but still low).

 

He qualifies for insurance coverage due to hypogammaglobulin.

 

We're in the middle of working w/the immunologist, ID MD, and his PANS practitioner to get on the same page, but expect to do the higher PANS protocol, not what would be used for frequent regular IVIG treatments.

Fortunately we had good results (more noticeable after about a month) with the first IVIG.

[Lkaanda]

Thank you all for replying so quickly. We came to the conclusion of doing the IVIG because we can't seem to get any relief from these tics. I know when I see what many other parents are going through I feel we are lucky that the tics are the worst part for us. But of course as he tics more and more and with school coming up so soon we feel so desperate to do anything that might help.

 

MomWithOCDSon, the woman's scheduling the IVIG says she is amazed at how many times parents get to this step with out really understanding what it's all about. I guess they need to figure out a better system for explaining it all, cause Dr. B. is so busy all the time and must assume we already know all the information.

 

One time he did show he was a little elevated for Babesia, so we are trying Mepron and Azith. So far I only see the tics getting a little worse. But then again that could just be the change in his tics and not really a sign of anything else. Still waiting for recent bloodwork. Of course even finding the results of that requires another office visit or phone consult which is a little frustrating.

 

I will look more into the methylation that you mentioned llm, and see what that is all about. We are always looking for ways to help him.

 

Tj21, when I do hear that someone has results with one that's what we were hoping for. Of course anything out of our network is not covered so this won't be covered for us. From what I understand he will not be taking any insurance starting in January so that will be tough for a lot of people.

 

Thanks again for your help!

Edited August 21, 2015 by lkaanda

[sf_mom]

When did you start the Mepron? When did his TICS increase?

 

For us, we always saw an increase in TICs after starting a new antibiotic. It is a die off response due to the increase in toxins present in the body and the bodies inability to clear those toxins. Depending on the type of bacteria they have both exotoxins (when alive) and endotoxins (when they die). Below is a description of endoxins. The die off response is commonly referred to as a herxheimer response. Older DS's TICs were the main 'symptom' of his disease. Typically the increase in symptoms (TICs, OCD, MOOD, depression) will begin within 48 to 72 hours after starting an antibiotic or an anti-malarial like Mepron. It can sometimes take weeks to see the increase in symptoms settle. Some even need to suspend treatment or lower dosages as the Herxheimer symptoms can be intolerable due to the endoxins.

 

Our son had three HD IVIGs shortly after sudden on-set 8 weeks apart. We did see improvement but it was not lasting. 6 months after his last HD IVIG he had blood in his stool and slight increase of symptoms. Rather than scope him we went to an LLMD. The rectal bleeding was ongoing for 7 weeks by the time we saw the Dr. He was able to stop bleeding within 48 hours by treating him with an anti-parastic antibiotic of Alinia. Shortly thereafter we realized we were dealing with much more than just strep. We have seen slow and steady improvement by treating for his chronic infections. Treating for Tick Borne Infection is not easy and I am all for any relief a specific treatment might provide like IVIG. However, do not be discourage either if a specific treatment doesn't provide the outcome you anticipated either.

 

 

Endotoxin, toxic substance bound to the bacterial cell wall and released when the bacterium ruptures or disintegrates. Endotoxins consist of lipopolysaccharide and lipoprotein complexes. The proteincomponent determines its foreign (antigenic) nature; the polysaccharide component determines the antibody type that can react with the endotoxin molecule to produce an immune reaction. Endotoxins are rarely fatal, although they often cause fever.

Edited August 22, 2015 by sf_mom

[Lkaanda]

When did you start the Mepron? When did his TICS increase?

 

For us, we always saw an increase in TICs after starting a new antibiotic. It is a die off response due to the increase in toxins present in the body and the bodies inability to clear those toxins. Depending on the type of bacteria they have both exotoxins (when alive) and endotoxins (when they die). Below is a description of endoxins. The die off response is commonly referred to as a herxheimer response. Older DS's TICs were the main 'symptom' of his disease. Typically the increase in symptoms (TICs, OCD, MOOD, depression) will begin within 48 to 72 hours after starting an antibiotic or an anti-malarial like Mepron. It can sometimes take weeks to see the increase in symptoms settle. Some even need to suspend treatment or lower dosages as the Herxheimer symptoms can be intolerable due to the endoxins.

 

Our son had three HD IVIGs shortly after sudden on-set 8 weeks apart. We did see improvement but it was not lasting. 6 months after his last HD IVIG he had blood in his stool and slight increase of symptoms. Rather than scope him we went to an LLMD. The rectal bleeding was ongoing for 7 weeks by the time we saw the Dr. He was able to stop bleeding within 48 hours by treating him with an anti-parastic antibiotic of Alinia. Shortly thereafter we realized we were dealing with much more than just strep. We have seen slow and steady improvement by treating for his chronic infections. Treating for Tick Borne Infection is not easy and I am all for any relief a specific treatment might provide like IVIG. However, do not be discourage either if a specific treatment doesn't provide the outcome you anticipated either.

 

 

Endotoxin, toxic substance bound to the bacterial cell wall and released when the bacterium ruptures or disintegrates. Endotoxins consist of lipopolysaccharide and lipoprotein complexes. The proteincomponent determines its foreign (antigenic) nature; the polysaccharide component determines the antibody type that can react with the endotoxin molecule to produce an immune reaction. Endotoxins are rarely fatal, although they often cause fever.

We started the Mepron about 10 days ago. His TICS seemed to increase after a couple days. Today was especially bad. Trying to get him to sleep tonight was horrible. He could not stop moving, twitching, kind of gasping for air. He almost looked like he was having convulsions. He so wants something to help make it all stop.

 

We actually reduced the amount of Mepron he was getting ourselves after reading some comments here. Especially since we couldn't get any help from the office. I mentioned what was happening to the nurse and she just suggested ibuprfren which we have tried and have not seen it help.

 

Interestingly enough we got the results back from the lab and it shows that according to his levels an antibody for Babesia was not present and mycoplasma was negative. So I am really wondering if we shouldn't just take him off the Mepron. I dont know if he could just be having a negative reaction to the Mepron itself. I won't know more from Dr. B. until our phone consult on Sept. 9, the soonest we could get.

 

Thanks for your help. Hopefully tomorrow will be a better day.

[mommybee]

First, it's shameful that a doctor who is prescribing a medication as strong as mepron won't talk to you on the phone about a possible side effect. You must be going out of your mind with worry. I would think the doctor could/should lose his license for this.

Second, repeated high dose IVIG in the absence of a known autoimmune problem is not protocol. I would probably email Dr. Swedo at he NIMH to confirm that this treatment plan is safe for your son. She has said that she's squeamish about using the treatment at all in children whose symptoms are not severe enough to be life threatening (refusal to eat or other self harming behaviors). If it are me, before proceeding down the IVIG path, I'd want to run the Cunningham panel because it seems to be able to predict which children will benefit from autoimmune modulating therapies. The website is excellent and can be accessed here. http://ihealthnow.org While IVIG can be very helpful to some children, if the issue is an unresolved infection rather than an autoimmune deficiency, IVIG may not be curative no mater how many times you do it. I'd want as much information as possible going in.

Lastly, like llm, my son was put into remission through the use of antibiotics alone. It's been a tough road with a lot of sleuth work to identify and treat a number of different concurrent infections, but my instinct to avoid IVIG was a good one. It probably wouldn't have been as effective as tackling one infection at a time until all that was left was strep which is easy to eliminate in isolation.

Best of luck.

Edited August 30, 2015 by mommybee

[sf_mom]

Gasping for air is a hallmark symptom of Babesia. The fact that your son developed this symptom shortly after starting Mepron is certainly an indication of this type of infection and would discuss your son's response in detail with Dr. B. I do think lowering the dosage was the right choice to help him clear toxin's more effectively. There is plenty of information on-line that outlines initial treatment for Babesia at lower dosages to effectively handle this type of die-off.

 

I am attaching some great symptom list for Babesia. Often only one or two symptoms are present at any given time. The big symptoms for our family were air hunger or gasping for air, night sweats (you might check your son while sleeping or his sheets just after waking), headache at base of head and shoulder fatigue, thigh pain, temperature intolerance or over heating.

 

Babesiosis

• • Chills
  • Fatigue and often excessive sleepiness
  • Night sweats often drenching and profuse
  • Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc)
  • Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud
  • Depression
  • Episodes of breathlessness, "air hunger" and/or cough
  • Decreased appetite and/or nausea, perhaps vomiting
  • Spleen and/or liver enlargement
  • Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate"
  • Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
  • Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme)
  • Dark urine
  • Enlarged lymph nodes
  • Significant memory changes
  • Struggle organizing
  • Profound psychiatric illnesses
  • Significant fatigue, daytime sleep urgency despite nighttime sleep
  • Waves of generalized itching
  • Balance problems with dizziness
  • Severe chest wall pains
  • Random stabbing pains
  • Weight loss
  • Sensitivity to light
  • Sleep in excess of 8 ½ hours per night
  • Sore throat with unproductive cough

http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

 

Another good description of Babesia like organism

 

http://www.wayneanderson.com/pages/diseases/babesia.html