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I'm ready to jump out of the window. How can this be...


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I am so sorry you are going through this--and can completely understand your wondering re: other labels.

 

The telling thing to me is that the teacher HAD STREP...was the classroom wiped down after that was discovered? I would almost keep him home until they do wipe it down, or you ask to--no joke, if you are sick at home, and there is strep in the classroom, that would be a recipe for disaster for my kids. Raging, OCDing, etc. spikes and will die off in a few days typically if anyone has strep at school.

 

Your son is on antibiotics now, is it treatment level as if he had strep ?

 

Can you get him tested for strep anitbodies via bloodwork tomorrow, and a throat swab? I would--just to be sure.

 

One final note, you saw great improvement with the IVIG, remarkable, unmistakable good things post IVIG-hang on to that. Give the brain 9 months to heal...

 

There are some docs treating with monthly IVIG. Dr Gallentine at Duke is doing this for chronic kids.

 

I hope you see continued progress, even if stair stepped in nature--

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Thank you all for the wonderful, and thoughtful insight. I have removed current new supplement of Cyandine from his diet as of today. Got 3 second opinions from doc at Childrens, family pediatrician, and client whom is a psychiatrist. All agree that Bi-Polar does not fit...nor does anything else but Pandas. At least feel good that perhaps we truly are on the right track. Yesterday, my little peanut was telling his classmates that he "hates them and that he is going to kill them". Of course, they removed him from the classroom. They are really kind and trying their best to help us. The principal himself is taking him outside for a break when things look to tuff for him. So some good stuff... Today, he woke up better, and his teacher reported 50% better. Tonight, he was back to saying, "oopsies" when he made any kind of mistake....I just hugged him. I am going to take all of your heartfelt advice and sort it out. Thanks again...

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How lucky you are to have such a supportive and wonderful school. We are not having the same support as of yet in DS school . But dd is in 100% remission so we have to count the blessings we have.

 

You are doing an outstanding job of doing your very best to get your child everything possible for the best outcome. Hang in there, you are a wonderful mom and on the right track

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I'm glad the removal is helping. What supplement is this?

Thank you all for the wonderful, and thoughtful insight. I have removed current new supplement of Cyandine from his diet as of today. Got 3 second opinions from doc at Childrens, family pediatrician, and client whom is a psychiatrist. All agree that Bi-Polar does not fit...nor does anything else but Pandas. At least feel good that perhaps we truly are on the right track. Yesterday, my little peanut was telling his classmates that he "hates them and that he is going to kill them". Of course, they removed him from the classroom. They are really kind and trying their best to help us. The principal himself is taking him outside for a break when things look to tuff for him. So some good stuff... Today, he woke up better, and his teacher reported 50% better. Tonight, he was back to saying, "oopsies" when he made any kind of mistake....I just hugged him. I am going to take all of your heartfelt advice and sort it out. Thanks again...

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I'd have to agree with Airial95, on the IVIG. He appears to be about 3 months post. You mentioned Dr. K, so he probably had a slightly lower dose- 1.5 instead of 2.0.

 

No one knows if that .5 makes a difference. And even Dr K would probably agree that if he is still having severe exacerbation a at this point, he may be one of the kids that needs more than one dose, (and maybe the 2.0 dose- that's my addition).

 

Also- I think our kids run the gaummut of phychological symptoms- including Bipolar. They can appear OCD, Depressed, Tourette's, Paranoid, Anorexic, ADD, Autistic, even psychotic, and probably some we don't even have names for (my son has Misophonia, most docs have never even heard of it) - my son has had all if the symptoms to be in about 6 different diagnostic categoies. And, they rotated over time. For example first 2 years- tics. Now, never tics. Still PANS though!

 

He's not 100 percent better. And as I've said things have changed over time. How much is due to the various treatments and how much is due to time is anyone's guess.

 

But my guess is that IVIG ( he's done 2- but very far apart and only dose if 1.5) was huge factor in improvement. IVIG is like stopping the hemoraging. You still need to complete the operation. Your childs immune system. This is the extremely difficult part. They can have various chronic infections and personal sensitivities unique to them. Strep is only the most easy to diagnose- and it may be present ( because if you go into ANY third grade classroom and give them throat cultures in the winter, about 20(or is it 30) will culture positive and/or have a positive titer. And this can be misleading, for example we chased strep but my sin also had mycoplasma.We didn't even know about the mycoplasma for first two years.

 

my son was on various high dose antibiotics for about 3 years. He had a rising mycoplasma titer that final turned around on the right antibiotic and

Supplements.

 

A huge help in brining that down was the right supplements. It went very, very slowly down on high dose Doxycycline. Then after he started Vit D3, and some special B vitamins, it went down drastically- and this was OFF antibiotics. Thats right- no antibiotics. In order to test to see if his titer would go up (only way to know if his infection was still active) I stopped the antibiotics. We tested him his IGG was something like 2000 ( still really high, but down from almost 3000 18 months previous). Then stopped antibiotics and had started the Vit D and methylation supps ( the Bs) (full disclosure- did occasional other herbs- like EGCG, and supps but not consistently ) that was coincidence, not a plan, and he was not on any anti-microbial supplements. We re-tested his MycoP after 3 months. It was down to 1100. Coincidence? I think not.

 

My son has stopped reacting to viruses ( used to have huge exaverbations retirn of all symptims)-and getting them much too. IVIG? Vit D? Supplements? Immune system maturing over time? All of the above?

 

He's not 100% better though. He still has debilitating misophonia, irritability- moodiness, anxiety. Every day. It's his baseline now. We will be doing another IVIG in December. This time a 2.0 dose, and this time, if he's still symptomatic in any way a few months later, another one.

 

On another note- my son also had Cam Kinase (Cunningham panel ) of over 200. That was recent- not exacerbating. He was 176 3 years ago prior to first IVIG, and 130 4 months post first IVIG ( with almost no symptoms at that time- we were very hopeful at that time we were done, but he was still having shorter lived "mini" exacerbations like your child)

 

According to his immunologist his immune system has a number of unexplained anomalies, but I'm now hopeful that this round, coupled with stronger, "cleaner"(no mycoP) immune system will be able to maintain the gains that IVIG has given him in the past. He's also on the verge of puberty- 14 yr old boy- so hoping that facor will aid him as well.

 

Hang in there. It's can be a long road. My son is so much better than he was, even with his baseline being unacceptable. If you take anything away from my experience and he other posts- test for every conceivable infection and target them, get a good integrative doctor to test methylation and vitamins and do another IVIG. You can do all 3 of those things at the same time. I did them sequentially... And each one worked a little bit- but they would have worked better and faster together.

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Thanks guys. Got 3 second opinions. Kids doc, resource at Childrens, and psychiatrist. All said he does not fit criteria for Bi-polar, and feel he does not fit the criteria for any other psychiatric disorder...all three feel that Pandas is the right diagnosis. I must say, w/regards to Pandas, after experiencing so much disagreement about this horrible disorder, at least they all agree on something. Stopped Kefir probiotic smoothie yesterday, today, ds is better today . Not great, but considerably better. Wont get my hopes up until he is free and clear for a good week. Then I will just go back to my baseline worry for the next 15 years...until he gets married. When he says "I Do", I will then wipe my hands of the whole darn thing....his new wife can then change the bed sheets for him. Ha

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