IVIG for over one year

[PhillyPA]

Bone marrow black with inflammation sounds very very serious. I have never heard of that before. How did you get that diagnosis? Did you have to rush him to the ER, was it his pediatrician, orthapedic surgeon, or Lyme doctor. Did he have to have it biopsied?

 

I am so sorry that your summer has been so difficult. Your experience must have been very scary.

Edited September 13, 2011 by PhillyPA

[tpotter]

Very quickly, because I have to leave for work. We are one of possibly the few who have had PEX, IVIG and abx. We have seen many of the PANDAS specialists (Dr. K, Dr. L, Dr. T, Dr. B.) We also see an LLMD, who does agree that IVIG certainly won't hurt, and as long as we've seen improvement in the past, may be helping (this is not Dr. Jones.)

 

PEX stopped my children's OCD (well, at least one of the OCD's for one of them, and then IVIG got rid of the 2nd.) IVIG helped my DS(now 18) jump approximately 5-6 years in social awareness (he is also diagnosed with Asperger's.) This was overnight just following the 2nd IVIG.

 

I stopped IVIG at the beginning of the summer, because we wanted to see if it was enough, especially with the abx cocktails we are doing for the Lyme, Bart, Babesia, Erlich, etc, We even threw in IV abx on one, because of very severe symptoms. Unfortunately, he had allergic reactions to the IV version of 2 common abx, so that had to stop (we are continuing with others, just not as helpful, and everything is oral, now.) DS18 keeps battling c-diff, so Lyme tx has all but stopped. Being 18, I can't control his diet, and unfortunately, it is a big issue for him (can't stop himself at the moment.)

 

We are currently working on getting IVIG again for them (hopefully this weekend), with our LLMD's blessing. They need the help, the bandaid, the whatever you want to call it. Personally, my belief is, that no one...not any of the docs we have seen, not any of us...know exactly what is truly at the bottom of it all for each of our children (personally, I believe each of my boys are different, and honestly, I think even DH and I may have some form of PANS/Lyme, etc), but we all try what works and what helps. There's no way I'll go williingly back to pre-PEX and pre-IVIG, because my children were completely non-functional. I think, in the end, we all have to do what we believe works for the best for each of our children.

[smartyjones]

IVIG helped my DS(now 18) jump approximately 5-6 years in social awareness (he is also diagnosed with Asperger's.) This was overnight just following the 2nd IVIG.

 

 

tpotter -- i hope your plans work out and you get the help from the IVIG.

 

certainly sounds like you have a lot on your plate now, if you find some extra time and wondering what to do (Ha!!), i'd love to hear more about your thoughts on the IVIG and the asperger behaviors -- the actual observations and your beliefs about what/how they were brought about! was there a regression in that social awareness or is it still lasting? fascinating!

 

good luck!

[sptcmom]

Bone marrow black with inflammation sounds very very serious. I have never heard of that before. How did you get that diagnosis? Did you have to rush him to the ER, was it his pediatrician, orthapedic surgeon, or Lyme doctor. Did he have to have it biopsied?

 

I am so sorry that your summer has been so difficult. Your experience must have been very scary.

 

Thank you. Actually a friend and colleague of mine is a Pediatric Oncologist. She loves my DS as a family friend and she was the one who diagnosed him with PANDAS last year. Extremely knowledgeable. When you do cancer in kids, you have to be a crack diagnostician and she is. As is Dr Jones who used to be a pediatric oncologist too. They both helped me out with the MRI and diagnosis etc. We were trying to rule out cancer, osteomyelitis and Babesia. A series of MRI's later we got everyone to agree to treat with minocycline for a broad sweep first and then for Babesia with Mepron. We chose not to go with a bone marrow biopsy.

 

No use rushing to the ER. They can't do much for this. I just gathered my docs around and we figured it out. DS is still limping with ribs hurting now from a Mepron Herx but is able to kind of get around more.

 

The bone marrow around his pelvic bone (iliac crest area), his pubic bone and the right neck of femur was all black with inflammation on MRI. I almost passed out and my heart went still for a few moments when I saw that.

 

Im very very quirky about any kind of invasive procedures. Thats just my life experiences with those have been horrible. I lost one brother to a badly infected IV line and he ended up getting encephalitis and passed away in the hospital in 2001, at the ripe old age of 42. I've just seen too many medical mistakes.

SFmom just posted about babesia being reported at bloodbanks I think.

Then my nephew's spleen burst due to a hospital acquired infection during his biweekly transfusion.

Everybody has a reason for being who we are. This is who I am. My experiences have made me what I am today.

Just doing the best I can based on my experiences.

Edited September 13, 2011 by sptcmom

[LNN]

I think, in the end, we all have to do what we believe works for the best for each of our children.

 

If all of us step back and put on the glasses we once wore pre-illness, and came to this site and lurked, we'd be thinking that every single member on here is stark raving mad. If the old me were put in a room with the current me, the old me would be very very scared! What mother in her right mind would put her kid on long term antibiotics, or a month of steroids, or drive 9 hours to put him into the ICU for 3 days of blood dialysis, or spend 2 days infusing donor blood products into his veins and being happy that he only threw up for one day afterward instead of a week, or tell him he can't play XBox until he drinks some nasty smelling herbal tincture and takes his 46 pills?

 

I don't think we need to worry about what newbies think or how they'll be influenced, whether something is phrased with an "in my experience" or stated as fact. Seriously, any newbie thinks we're all raving lunatics! And most likely, they've come here from the Pandas forum, so by now, they're absolutely certain we're all mad. And they're very worried that they're mad too! But we're here because our kids are sick and whatever we've tried up to this point hasn't given us enough relief to get the h**l off forums.

 

Whether someone chooses a strictly allopathic route (and I don't use that term in a negative way) or homeopathic, or some blend of integrative, the extremes we've all gone to on those routes is undeniable. The reason we all stay on this forum is because no "normal" person can understand us anymore. You have to live the horror to understand how any of us got here and why we try the things we try. We all have very sound reasons to hold the personal beliefs we hold. And those beliefs are likely going to change over time.

 

Trudy said it best. We shouldn't argue like this. It does nothing to help a newbie (they've long ago left this thread) and it divides the very people who can offer help. It takes weeks for the forum to put this sort of conversation behind us. So few people understand me as it is. You nut jobs are all I have left! If you all stop speaking, my poor husband will have to bear the burden of my needing a sounding board all by himself. I can't let that happen!

 

Can we bring this back to the original question of whether those who've chosen multiple IVIGs have seen benefits or reached a point where enough was enough? Did it live up to the hopes you had or in hindsight, would you have done things differently?

[sptcmom]

IVIG helped my DS(now 18) jump approximately 5-6 years in social awareness (he is also diagnosed with Asperger's.) This was overnight just following the 2nd IVIG.

 

 

tpotter -- i hope your plans work out and you get the help from the IVIG.

 

certainly sounds like you have a lot on your plate now, if you find some extra time and wondering what to do (Ha!!), i'd love to hear more about your thoughts on the IVIG and the asperger behaviors -- the actual observations and your beliefs about what/how they were brought about! was there a regression in that social awareness or is it still lasting? fascinating!

 

good luck!

 

I know you didn't ask me but since DS has Aspergers too or had Aspergers since 18 months of age, I thought I would jump in.

ALL of the Asperger symptoms have been gone for about 6 months now. Things started getting better immediately when we started treating for Bartonella last year. IVIG with Dr K in May 2010 and Bartonella treatment starts with Dr J in August 2010 and 6 months later after steady improvement DS no longer has any Aspergers. He has numerous other issues but not that one anymore.

[P_Mom]

Spctmom....

 

You may want to get a second opinion on the black MRI findings before treating your son for it.......

 

 

"Nearly every part of the body may be studied with MRI. MRI gives very detailed pictures of soft tissues like the brain. Air and hard bone do not give an MRI signal so these areas appear black. Bone marrow, spinal fluid, blood and soft tissues vary in intensity from black to white, depending on the amount of fat and water present in each tissue and the machine settings used for the scan."

[sptcmom]

Spctmom....

 

You may want to get a second opinion on the black MRI findings before treating your son for it.......

 

 

"Nearly every part of the body may be studied with MRI. MRI gives very detailed pictures of soft tissues like the brain. Air and hard bone do not give an MRI signal so these areas appear black. Bone marrow, spinal fluid, blood and soft tissues vary in intensity from black to white, depending on the amount of fat and water present in each tissue and the machine settings used for the scan."

Thanks so much for your research.But there is no mistake. I myself used to do peds neuro and the MRI has been read by one the tristate areas best peds radiologist, also Dr Jones himself, the peds oncologist and she even showed it to her peds oncologist radiologist just to quadruple check since Im a friend.

Anyways, it depends on the weighted or not signal of the MRI and how its done. This was a T2 weighted image we did without contrast- very technical but the results are final.

I wish to God it was different. I did indeed hit the good old textbooks again but nope. It is what it is. The areas are slowly beginning to clear from the edges so we know the meds are working.

Very sweet of you. Thanks so much for caring.

[P_Mom]

Spctmom...

 

It is sweet of you to thank me, but, you are giving me way too much credit. Because I had also never heard of such a finding and also found it very frightening....it was out of my own curiosity that I simply googled "MRI Black Bone Marrow" and it was the first thing that popped up. Took all but a minute...no research involved.

 

 

Anyway...

Hope all goes well with treatment!

 

 

How fortunate of you to know so many of the "big wigs" personally!!

[Bill]

Something else Dr. B. told me that sounds logical (and since I take horrible notes, I wouldn't swear he said exactly this) - he said that one (out of three) of the things that the IVIG helps to do is to shut off the incorrect autoimmune responses. This is consistent with other theories regarding Pandas and Lyme that the immune system turns on and doesn't turn back off ultimately attacking the wrong things. We have opted for IVIG for my son after 8.5 months of treatment for Lyme because if I can shorten some of this after him dealing with it for 8+ years now, I will.

 

The latest 30+ blood tests run by Dr. J. are all negative for the bugs tested but remain positive for inflammation and anti neural antibodies. Dr. J. recommended we proceed with the second IVIG based on these results (just got back).

 

And to slightly change topics - we went went the steroids this time around as my son vomited after the first time. They also slowed the transfer down. No headache, no vomiting this time. Dr. B. does not believe that short term (6 days total) steroids is harmful to a Lyme patient.

 

Just sharing....

 

bill