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IVIG early on - thoughts?


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My son only came down with PANDAS in March of this year. He had the "breakdown" and then got sick. Took him to the doctor, he had strep, got him on a 10 day course of abx. During those 10 days not only did the strep go away but so did most of his behaviors. Took him to see his normal pediatrician just a few days after stopping the abx, for his annual check up, and told her about it, and she said PANDAS. He went on another round of antibiotics which further cleared up his issues. Between then and June, his behavior started going down hill again. Took him in, sure enough, he had strep again. This time, I asked her to please consider a longer dose of abx but she would only do 14 days of clindimycin. Clindimycin worked amazingly and cleaned up so much better than the first abx, which I can't remember right now what it was. And it turns out it came with 17 days worth of doses . . oopsy on someones part but heaven for my son. Sure enough though, we're a week and a half out from stopping, and it's all coming back.

 

His pediatrician, who initially said PANDAS, refuses to work with us unless he has a positive throat culture. I took him back in 2 days after finishing this abx because he was starting to get bad again and the throat swab was negative so she said its not PANDAS, that PANDAS is a one time infection, and that we need to treat him for Tourrettes/OCD.

 

Not knowing what to do, I posted on an online forum and someone recommended to me to try and get into the IVIG study at Yale. We did the first screening, which he passed, and have the 2nd screening on Tuesday. He meets all of their published guidelines so I am sure he is going to get in - but . . do we really want IVIG at this point? From reading I see it is the treatment of last resort for a lot of kids. My son does GREAT on antibiotics, it's just that his pediatrician won't give him any.

 

What do you all suggest? Is it possible that if we go the IVIG route we could be fast-forwarding his PANDAS when all he really needed was the abx??

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Just my 2 cents worth--

My initial reaction is to tell you I fully understand your hesitation.

 

One wise forum advisor told me (more than once) :) that the decision to do IVIG was a very personal one. It is. We struggled, and waited, for over a year--

 

If it is Ps, you will know--as it won't go away easily.

 

IF it goes away, for awhile, or for forever (!) great--

 

However, IF it does not, then there will most likely come a time (especially if your son has serious symptoms -- as some of our kids have) that you can no longer wait and not do anything. You will fear that the symptoms will reoccur, or that they will fester, and ultimately leave you all scarred, for life. OK, so that sounds a bit melodramatic--but in many, many cases this is true.

 

We are (slowly) recovering from one year of numbing illness...I am hoping (and trusting) that we will all recover fully.

 

It is now 9+ weeks after our younger d's IVIG and we are considering the same for our oldest. Our oldest, who was very severe 3 years ago, still has continuing intrusive thoughts OCD.

 

I don't know where you are located, but if you can get in to see a Ps treating doctor that is what I would do -- to see what they would advise. IVIG is a very personal decision in the end.

Edited by T.Mom
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T.Mom...

You said your son has ocd intrusive thoughts....is he on antibiotics?....is he being treated for ocd with meds or therapy (if you don't mind me asking?)...if on antibiotics did it help at first, but then the ocd intrusive thoughts just came back again? I am asking b/c as I, myself, continue to struggle with whether or not i should force getting my daughter on antibiotics.....same situation here, our doctors will have nothing to do with long term antibiotics unless there is an infection.....which i kind of agree, but just wonder if it would help

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Thanks so much, Tmom. We are sure it's PANDAS but I would rather treat with antibiotics, which he does well on, than jump to IVIG. I'm just worried jumping to the big guns when we know antibiotics help might be overkill, and I'm honestly worried it may make things worse when he's actually not doing so bad.

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T.Mom...

You said your son has ocd intrusive thoughts....is he on antibiotics?....is he being treated for ocd with meds or therapy (if you don't mind me asking?)...if on antibiotics did it help at first, but then the ocd intrusive thoughts just came back again? I am asking b/c as I, myself, continue to struggle with whether or not i should force getting my daughter on antibiotics.....same situation here, our doctors will have nothing to do with long term antibiotics unless there is an infection.....which i kind of agree, but just wonder if it would help

 

 

Yes, my d (13) is on full strength amoxicillan (as if she had strep) and she has been on that dose for over 2 years as a "treatment" -- both to stave off any strep (hopefully) but perhaps what we believe to be an anti-inflammatory/ immune modulating effect (most importantly.) She has horrible bouts of OCD when affected, in the past these included 4 months of severe anorexia and one month of severe crippling OCD.

 

I doubt that a non-Pandas doctor will provide long term antibiotics (though you could try and ask your doctor to call and consult with Dr L, Dr B, Dr K, Dr S-- if your doctor will!)

 

Personally, I would find another doctor. This is not something to play around with and the fact that a doctor will not provide antibiotics is no longer tolerable, if it is necessary--

 

The experience that the PANDAS treating doctors are gaining, even in the last 2 years as they treat neuro-psych issues with immune modulating therapies and antibiotics, this experience is vitally important to those of us whose children have this horrible, life stealing illness. You don't want this reaction to set-in and the longer you let your child go untreated the more difficult and involved this entire picture becomes. (Certainly in our experience.)

 

During exacerbations we have switched up and to different antibiotics--nothing worked better then Amoxicillan for our oldest d.

 

Yes, she had months of counseling...months and yes, while it gave the family a vocabulary to talk about OCD with, it had little to nothing to do with her getting better--The CBT therapist, (after 5 months) apologized to us as she said she felt she had not been able to help her...Steroids and abx did the trick at the time.

 

Our daughters have not gotten better until the PANDAS was treated medically, physically addressing the brain inflammation has been critical. Hope that helps--

 

I NEVER thought I would be considering IVIG for her -- as what she is experiencing now is mild compared to where she has been in the past. However, her life is being affected. She is not able to be "free" of intrusive thoughts--and no child should bear that burden.

Edited by T.Mom
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If I had a chance to do this all over again...I think I'd do anything as immediately as possible to help prevent the downward spiral we have witnessed in our dd's life. PANDAS has taken so much from her. She has lost two years of her life...irreplaceable years. I think part of the research study is to determine the efficacy of IVIg as a rapid response treatment. But I am a science-y type person so this research appeals to me. IVIg, PEX, long term high dose abx all have their drawbacks for our children....but quality of life...that's what's a stake in my home. These are very challenging decisions indeed.

Mary

from Michigan

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If I could turn back the clock, my DS would have IVIG immediately. Unfortunatly, he went undiagnosed for a year. That's one year of all kinds of PANDAS behaviors and a very dysfunctional homelife because of it. If he had been treated early on, I feel that might have stopped PANDAS in its tracks. We finally found Dr T and DS was placed on abx for 6 months. He did much, much better. However, he never got completely back to his normal self and he endured flare ups. He had IVIG 10 wks ago. The changes in him are unbelievable. It had been so long since we had "seen" the boy our son is. This one IVIG may or may not due the trick, since DS was sick for so long. Cost is also a consideration. Our insurance covered the IVIG. Unfortunately, we have a high deductible/high out of pocket policy. It wasn't cheap, especially when you figure in the supplements, vitamins, abx scripts, the going to dr after dr, the trip to Chicago twice, one for the appt w/ Dr K and one for the IVIG. We have a follow up trip back to Chicago next month.

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Thanks, everyone. Had the second screening today and will find out Thursday afternoon if he got in. She sounded concerned about a 106 degree fever he had in January of 2010. He spent 3 days in the hospital for it, but his ped was overly cautious as my son just 2 months earlier had spent 10 days in the hospital. I hope he gets in.

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If I had that option, knowing what I know now, I'd jump on it. Have you done lyme testing with Igenex? Just wondering about the fever? Did they figure out what caused it? Any history of a tick bit or living in a lyme endemic area?

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momaine, we lived in Northern Maine before moving here to the midwest. He's never had a tick bite that I've noticed, though. And no, they haven't tested for lymes.

The ticks that cause Lyme disease are tiny and easy to miss. I've never found one on myself and yet I have lyme disease. :( And so does my dd with PANDAS. The only ticks i've pulled off her seemed like the large dog ticks, but I could be wrong. I suspect it was so tiny we never found it. Not sure though. The only thing I know now, is that lyme can cause the same symptoms and if I could do it again, i'd see a lyme specialist before doing prednisone. Hind sight is 20/20.

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I agree with momaine.

 

My son was put on 2 steroid bursts within a 2-month time frame last winter. We thought at the time we were only dealing with PANDAS. Steroids must have supressed his immune system enough that he started having physical symptoms of what we now know is Lyme, Babesia and Bartonella. Until this time, he manifested mostly psychiatric symptoms.

 

I wish one of the docs (there were 4) that gave him the PANDAS dx would have tested for Lyme. He is having a hard time recovering from the immune supression.

 

Yes, I realize that with PANDAS, immune supression is necessary; however, if there is an underlying infection, steroids are a NO-NO.

 

My hope is that it will become standard practice for docs diagnosing and treating PANDAS to test for Lyme and other TBI.

 

When/if there becomes standard practice for PANDAS :)

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If you child has PANDAS, then they have to be on antibiotics. If your physician won't give them to you, it is important to find another physician. With every exposure to strep, they get worse. We got to the point that our son was just in the same room as someone with a sinus infection, and his symptoms would get bad again.

 

We tried the antibiotic route for probably a year or so. We ultimately went with IVIG and now, three months post treatment, my son is doing unbelievably well. IVIG was our miracle.

 

The throat culture is useless. It's the antibodies that are the important indicator.

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