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Need help with a HUGE decision


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My daughter has been in a major flare since November. We started Azith cream three weeks ago. When we went to see Dr. M. in Florida last week we had seen no improvement from the Azith cream (daughter won't take meds by mouth) and our lives were falling apart. Over the past four days we have started to see improvement in her behavior like we haven't since this started. (I know, you guys told me it might take two weeks) We went to the ped neuro this afternoon and he is ready to set her up for IVIG. He shot me down on the PEX thing. He did ask me if I wanted to wait and see if the improvement continues and hold off on the IVIG. I told him to go ahead and start getting it started (insurance approval, etc..) Dr. M. told him what diagnosis to use to get the insurance to pay. So my question to you all is.....Would you continue to move forward or should I wait and see if the Azith will get her close to 100%? We have probably seen about a 30% or more improvement in the last four days. I have heard some say that their kids got worse with IVIG. We have a positive IgG and positive IgM mycoplasma. Strep titers barely elevated. I don't want to make the wrong decision here. I'm afraid if I wait I won't be able to get the doctors to agree later. You know how hard it is to get everyone on board.

 

Please help me here guys. I need to do the right thing for my daughter and for my family. There has been so much stress and upheaval in our home. These last few days have seemed like a mini vacation. I just want to stay on the right road......the road to recovery. I really appreciate all input and opinions. Thanks so much.....

 

Dedee

Edited by Dedee
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Dedee,

My first piece of advice is to realize there is no "right" or "wrong" decision. You do your best. That's it. Then you enjoy or manage the outcome, however it plays out.

 

I am probably one of the more "lop sided" parents on here, having endured a 10 week post-IVIG nightmare last summer. BUT we had an undiagnosed chronic infection (lyme/bartonella) and didn't know anything about detox in such a situation. So my son and I promised each other we'd never do it again, because the gain wasn't worth the pain. However, that doesn't mean I'd tell others not to do it.

 

You know about the infection ahead of time. Your life is already he** and you need a life preserver, given your unique medication hurdle. It is possible things could get bad/worse for a period after IVIG. But if you get a good detox plan in place and if IVIG enables you to get to a point where you can administer abx, then I'm not sure if you have much to lose and possibly much to gain.

 

I know several parents who feel IVIG has helped their kids fight their underlying chronic infections. And even families like us, who endure a rough recovery without much lasting gain, still didn't end up with permanent set backs. We learned from the experience and moved on. Even on a lyme path now, we still endure herxing and setbacks. I'm not sure there's any way around rough patches on any road to recovery.

 

No one can tell you what to do. Only you know that. But even from my side of the pendulum, where I'd urge caution in some circumstances, I think in your particular situation, the potential gains outweigh the potential downside. My only suggestion would be to make sure you have an emergency plan in place (family members/friends who can help, time off from work, DR M's cell number J.) so that if you do hit a few weeks of severe behaviors, you can keep your daughter and family safe and sound.

 

Best of luck with the tough decision, but try not to second guess yourself. You're a warrior. Trust your instincts.

Laura

Edited by LLM
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LLM has very good advice for you. We are one of the families with very long term illness, and our children are older. Because of that, we decided that we really didn't have any time left to play the wait and see game. We did get PEX last year for both boys, and it was a wonderful, almost 6 month reprieve. We could not get another PEX, and were offered IVIG. It took us 8 months to get the IVIG in place, and wouldn't you know...we found out about Lyme and possible bartonella just when we got the approval for IVIG.

 

I thought for one day only, and decided that since this is also an autoimmune disorder, both my boys do test positive for a specific ID, that as long as they were also getting treated for LD, I would go ahead with the IVIG. But, remember, we are dealing with very long term illness (at least 8 years for one, and at least 12 years for the other...possibly 18 years for that one), they are 15 and 18 years old.

 

I truly haven't regretted it, although I will still say that for US, PEX worked better, but that it definitely should have been followed by at least one IVIG. We are still also continuing on the LD treatment. And, we do have mycoP (all 4 of us.) But, IVIG has definitely helped a lot, and I have it documented and videotaped.

 

So, my suggestion? Do what you feel in your heart is really the right decision (use that "Mother's intuition"). There is no right or wrong answer.

 

I have followed my gut, and so far do not feel that I have been wrong.

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I agree with what the others have said. Go with your mother's instinct - there is no right or wrong answer.

 

I thought I'd share our experience.

 

Our ds also has high myco p titers, both IgG and IgM. I have been hearing more and more that myco p is not responding as well to azith. DS started treatment for myco p and his tics went through the roof for 12 weeks. After that he was doing quite well. He caught his first cold in years and it caused a big setback.

 

He had finally started to put weight back on and we needed to increase his dose. When his dosage was increased, again we saw a lot of old symptoms come back. Scary ones. We were alarmed and my first thought was oh no, it's not working anymore!! I reminded myself of all my notes and what I have read. It's a long and very bumpy road and it's going to take time.

 

Myco p is not an easy fix. It's a stealth, stubborn infection and in our experience, it has been far underestimated by a lot of Dr's. One of our Dr's has suggested IVIG multiple times, 2 other Dr's have said no way.

 

DS has had his titers checked 3 times now. IgG and IgM are still high, but the numbers are coming down, but very slowly. His symptoms are improving. It's been a long rough road getting to this point. I can honestly tell you, I cried nightly wondering if we were doing the right thing - what if we were wrong etc. Then I'd see a glimpse of my old son coming back - we'd see signs here and there to let us know we were on the right track.

 

He'd flare every 6 weeks and you could set your calendar by it. As time has gone on, his flares are less and less severe.

 

He still has bleeps along the way and every time it happens, I panic inside. We continue to hold the course on antibiotics. DS is now having more symptom free days than not. We still have a long way to go though, I can still tell that much. But it is working for us. His titers are dropping, his symptoms are less.

 

No one can tell you what to do, I'm sorry you are in this position. I wish none of us were here having to make such decisions. I just thought I'd let you know what seems to be helping our DS.

Edited by NewBeginnings
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Well you are right, I don't have a detox plan. I really don't know much about detox. I suppose I should investigate that subject more. I have prayed and worried about this decision all night. On one hand she is much better. However, she has other issues emerging that we haven't seen before. She has started having extremely hyper behavior. Not just active, but jumping off the walls hyper. I do prefer this to the rages, but it is nerve racking none the less. Last night I noticed a new throat clearing tic. Very subtle, but a new tic.

 

The doctor is supposed to call me this afternoon to let me know what he has found out about scheduling the IVIG. Still not sure.......

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Hello,

I was so scared to do our first ivig for our dd she was 5ish then

but we went to dr.k in Chicago and it was the best thing we had ever done!!

we did need to do it twice we had ivig done again in Feb almost 1 year to the date

Ivig helped alot for sure and I can say that she went back to 100% both times

but that is us,and the first months are hard.

I dont know the doc that you are going to, just make sure to do all of the tests first because

I dont think ivig helps if you have lymes or something else.

does the doc that you are going to talk to Dr k about ivig?

We have just went to dr.k so that is the only Doc we know.

I stoped looking for help in our town,my dd doc did help us out a little but not much and we got tired of waiting

so we just did it,we did not wait for insurance or anything we just did it and paid everything all off

but our insurance paid for the ivig but not the doctor or the office visit.

so it is expensive for us because we had to fly,hotel,rent a car,food...

but I will do it again if we need to..but I pray that # 2 will be the last.....

Best of luck to you

Tracie

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I can't type as eloquent as others, but just wanted to say: When we did daily Azithromycin for the first month, it was incredible- huge Wows! for us.

But at week 5-6, we had a huge backslide- we tried other antibiotics, made things worse, or did nothing. We did a short steroid burst, did not pull us anything close to out.

That is why we finally went to IVIG.

I don't regret that decision for a second.

We were in dire straights. There was no way it was going to get better (my belief.)

Good luck in your decision----

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Oh my dd can't take pills,so I crush up he abx and put it in a spoon full of choc pudding..:) whatever works!

 

Tracie

 

Hi Tracie,

This is my first post as my 8 year old son was recently diagnosed last week with PANDAS. I am very uplifted by your post and am hoping you could tell me more. We too are going to schedule the IVIG with Dr. K. in Chgo, so any info. you could share about how your child is doing or what to expect or anything would be greatly appreciated!! I have been a nervous wreck about this until I found Dr. K. who seemed to really have good results with IVIG...

Sharon

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I wish there was one right path, one right answer with this disease, but there's not.

 

What actually set off PANDAS for us was a tonsillectomy. If I could go back, I'd never have done the tonsillectomy, but I can't. We did about a year of abx and other supplements. We had some good results from bacteria-fighting supplements for a little while, and some positive results from Insitol (another supplement).

 

We are currently about 10 days post IVIG. What's hard is that recovery seems to be a roller coaster. He'll have an answer day followed by a horrible, rage-filled day. We are doing lots of abx as well so yeast is a problem too.

 

You make your best decision at the time, based on the info you have. I'm a big believer in faith too, so prayer has been an integral part of our decision-making. We felt very strongly about proceeding with IVIG, but we couldn't stand to see our son so sick anymore (and he was wreaking havoc on our home). Abx alone wasn't cutting it anymore, and each successive exposure to strep (and then, exposure to any illness) was triggering symptoms. Mostly, in our house, it was rage and emotional lability and terrible anxiety.

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Thank you all so much for your insight. I have prayed and prayed. Still haven't heard back from the Dr. Part of what has helped me make my decision is the huge backslide she had yesterday and this morning. We had several good days, making me think that the antibiotics were taking us on the road to recovery and then yesterday we were right back to the point A. This morning was not quite as bad as before but still not an easy morning over all. I was actually not upset by the set back yesterday. For me, it was confirmation that we need more than what we are currently doing. In addition to the IVIG we will be able to do several days of IV antibiotics while she has her line in which should be helpful also. So, just waiting to hear back from the Doctor to see when we can get this going. Just praying this is the right thing and praying for a positive outcome......

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Dr M rarely offers up ivig, and if your neuro is recommending it, your childs brain is under assault. IVIG is considered to be very safe and used by 35,000 people monthly in the united states with no major issues for the last ten years. Go with your doctors recommendation. My dd receives ivig monthly for the last two years, it is the only thing that has brought her back to us after 5 years of illness. She did abx and steroids but truly this illness, if it is lingering needs treatment. Looking back now I am still struggling with the fact no doctor offered ivig 7 years ago, we would not be where we r today had they. I cannot recommend it more if your child is suffering. You obviously have good doctors, listen to them.

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I recommend to first explore safer options. I know how hard it is to live with a pandas child, but IVIG is a blood product and therefore high risk. Antibiotics and tonsil removal has proven to be quite successful if strep is the trigger. It is much safer for a child to have their tonsils removed than an adult. If tonsils may ultimately need to be removed, now is the time.

 

Many have also found cures with homeopathic meds which dissolve in the mouth. The difficulty with that is finding a good homeopath in your area. Since you have seen recent improvement, I'd give the antibiotic cream more time and continue to try to get oral antibiotics in your child. It took us a very long time to see improvement with antibiotics, but they ultimately came through. Do continue to seek insurance approval for IVIG so that option is ready if you need it.

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