Where to go from here? Our story

[trggirl]

Hi, I thought I would repost our journey since it is taking a few different turns. I welcome all input because at the moment, I am lost.

 

My daughter started ticcing last year, 3 weeks after a strep infection. In hindsite though, she has always had issues.

 

Some History:

 

She had low-grade fever for the first 3-4 years of her life constantly. She had horrible, horrible reflux. We had to change her sheets 3 times a day because she would vomit significantly after every bottle or meal and at every nap. This continued through at least Kindergarten off and on. Prevacid did help it. She had 2-3 kidney infections. She had a full-blown measles rash after her MMR.

 

When she was about 2 1/2 yo, she woke up in the middle of the night clutching her head and crying, "head-hurt, head-hurt". We jumped in the car and on the way to the hospital, she started vomiting. She ended up hospitalized for 3 days on fluids and antibiotics but they never figured out what was wrong with her.

 

I remember around 3yo, she had some difficult times. Rages and anger. I just wrote it off as the terrible threes. It was not constant. Just every once in awhile. Maybe 3-4 times a year. In the past, we always just thought it was tiredness

This continues even now.

 

My daughter has always been hyper, talkative, and distracted but very sweet. If you sent her to do something, you always had to follow her around because she was on to something else. She is still like that to this day. Several people used the word precocious when she was younger. She has always struggled to sit at the dinner table. It's just hard for her.

 

In October of 2008 she came down with strep. Three weeks later she started shoulder shrugging. She then started having hard times at school finishing her work and staying on task. She developed a vocal tic of saying "yes, yes, yes". This was in 1st grade. As the year progressed, we did some supplements and things got worse, then better and we had a good summer. Distractiveness was still there, but no tics.

 

In October of 2009 she got strep again. I immediately noticed a new tic of raising her hands in the air. It started out like she was straightening her sleeves but by January, she was doing it many times in a minute. She was also sniffing over and over. From January to March, she struggled. She had age regression and constant talking which hurt her socially, she could not complete her work, and she had strong defiance off and on. We saw minor OCD things like repeating her words until they sounded right and doing things over and over until it felt right. She also said she had bad thoughts in her head. In hindsite, she was also confessing to all sorts of minor things. If I thought about it, I could probably write a list of minor things she was doing, but nothing like anorexia or refusing to leave the house. We got blood work done and she had high Absolute Lymphocytes, high Bilirubin, and her Cunningham test came back as 237. All her anti-neuronal antibodies were normal.

 

We flew to see Dr. Latimer in March. She put her on Augmentin 400mg twice daily and we gave her 2 pearls (probiotics) daily. We started on a Sunday and the following week her grades went from 20's and 30's to A's and B's. It was amazing!! Tics decreased to almost nothing. She was just different. She talked to me on a more mature level and seemed to be thinking about what she said and did before acting. She was still a little slow at completing work but for the first time since October, she was getting her schoolwork done.

 

At week 4, I could see some issues. She seemed a bit more difficult and she had a few "off" grades. At week 5, she started vomiting. She vomited at least 15 times and was running 104 fever. I took her to our pediatrician who diagnosed it as a virus. We went home and she seemed to improve. I started the Augmentin back and after 2 doses, she started vomiting again. I took her back to the pediatrician and called Dr. Latimer. They ran blood, urine and stool samples. She came back positive for Pseudomonas aeruginosa in her urine and Clostridium difficile in her stool. Dr. Latimer said it is too dangerous to give antibiotics now and asked if we had thought of IVIG. So this is where we are at now. Not sure where to go from here. Even if we did IVIG (which I am not completely comfortable), we could not follow with antibiotics. How effective would this be?? I know strep pushed us over the edge, but is strep really the whole cause of all this??? Could there be other bugs involved? Clostridium? Pseudomonas? Yeast? I do think it is strange that she got Clostridium after such a short time of being on antibiotics. I am also not comfortable proceeding knowing that her anti-neuronal levels are normal. Any thoughts on what is pushing that Cunningham so high and how to proceed?? Any more tests we can take to try to narrow things down?

 

All opinions and comments are welcome. I am truly lost here.

[dcmom]

Wow- I am sorry...

 

I would add a few things, as someone from the outside looking in.

 

It sounds like your daughter has had health issues a lot- have you done an immune panel on her? Is it possible she has an immune deficiency in addition to pandas?

 

Dr L is a very thoughtful, doctor. She has saved my kids- I totally trust her. I don't think she proceeds hastily AT ALL into treatment, but at the same time will take action when needed. You need to go with your gut- but I would listen to her with an open mind.

 

I don't know much about c dif. I would imagine you can treat it, and eventually your daughter will be able to do antibiotics again with careful monitoring- hopefully someone else will chime in.

 

I think the fact that the Augmentin made such a change, is a helpful indicator that IVIG might work. And in the absence of antibiotics I think you need to do something.

 

I wouldn't let the Cunningham test outweigh the other indicators in your clinical picture. My dd had the opposite, normal cam kinase and very high anti neurals- she eventually had pex and is doing really well.

 

Good luck!

[FallingApart]

Your story sounds as complicated as ours. I know the anxiety you are going through!

 

I don't have an answer for you, but I am interested in the Pseudomonas. So far, our non PANDAS but strep carrier DD has been diagnosed with this. I believe we just checked our PANDAS DD for this on Weds as well. We can't get rid of the Pseudomonas in our other daughter. I'm starting to wonder is Pseudomonas plays a role in this because our DD got an active strep infection WHILE she was in the hospital and hooked up to the IVIG and IV antibiotics. Pseudomonas is relatively new to me. Is your ped concerned about it? I hope that's not a dumb question, but I am becoming more and more concerned about it.

[LNN]

DCmom took a lot of words right out of my mouth. I have lots of respect for Dr L and the thought she gives to each case. I really value her opinions. So if she's seeing IVIG as the logical treatment due to the antibiotics issues, I'd give that some serious consideration. Like DCmom, I'd also wonder if there's more going on with the immune picture. If so, IVIG would make a lot of sense possibly for other un-defined issues in addition to the Pandas.

 

I share your concerns with IVIG - it's a human blood product. There's that miniscule risk that it could contain a virus that hasn't been discovered yet - that it has something they're not screening for. Let's face it - it's not like our kids are particularly lucky when it comes to health issues. And then there's that little detail called money. I know some feel that IVIG is perfectly safe, but it's always scared me a little. So I can relate to your concerns.

 

That being said, after almost 2 years of trying alternatives, including prophylactic abx and pheresis, we have finally decided that IVIG is the only chance my son has at beating this thing. Pheresis helped a lot. But we found out later that my son has what's called a specific antibody deficiency. He failed 13 of 14 on his pneumo titer panel. He's had a negative ASO test after scarlet fever. His body just does not produce sufficient levels of antibodies to strep. He's now a canary, so prophylactic abx helps prevent a cold from turning into something more serious, but it can't protect him from other sick people. So our best hope is that a high dose IVIG treatment will give his immune system the support that he was born without.

 

I don't know that I'll ever be 100% comfortable. I know on the day they insert the IV, I will be praying with all my might (and I'm not known for my religious streak) that the people who have helped create that bag of immunoglobulin were all healthy. That it works.

 

But I also know the dangers of continuing to live with the threat of recurrent episodes. It costs my son dearly, especially academically, but also socially. And it costs my daughter, who finds herself on the receiving end of unpredictable and sometimes mean behavior. It's no picnic for the marriage either for that matter.

 

So we will make the leap of faith and do what we have to, knowing there is no perfect answer and no single answer for everyone.

[Phasmid]

Wow, does this sound familiar. Ask if you can try vancomycin- it is specific for Clostridium difficile, and this is what "cured" my son. He probably had C. diff. for about four years before we figured it out. Within 24 hours, his psychotic symptoms began to calm down. He was home from school for two weeks and every issue in the book. It took from January to April to get him right, but like I said, within the first day, we knew we were hitting the nail on the head. Actually, he was on flagyl and vancomycin. He was extremely ill. I think there may be some gut infection association here that is being overlooked (so much focus on Strep, which my son hasn't shown culture or titer positive).

[sf_mom]

I am so sorry.....

 

I would contact Diana Polhman at Pandas Network. I am fairly certain there is another little girl going through similar. They definitely needed to clear the C. Dif and eventually moved forward with IVIG. Perhaps Diana could put you in contact with them so you can find out how they handled the situation.

 

-Wendy

[EAMom]

So was Dr. Latimer thinking that antibiotics (Augmentin) caused the C. difficile?

 

Everyone has already offered great advice...immune workup, treat the C. difficule (vanc. and metronidazole...the vancomycin might also have some activity against strep??). After IVIG (which I still do think is a good idea, but then my child has had IVIG), I suspect that penicillin would be a safe prophylactic antibiotic (in terms of C. difficile) as it is so narrow spectrum. I agree, that I would be nervous about investing in IVIG without following up with some kind of prophylactic antibiotic.

 

I wouldn't worry so much about the anti-neural anti-bodies being low...since we don't really know what they mean. Your dd's symptom set, history, response to antibiotics, CaM kinase ll...those are the things I would pay attention to.

Edited May 22, 2010 by EAMom

[trggirl]

Thank you for the input!

 

Dr. Latimer did order an immune panel. While I have not seen the results in person, Faith at Dr. Latimers told me they were normal.

 

I am very interested in whether there is a C. diff or Pseudomonas component to this. It does seem that it is a connection with a few of us.

 

EAMom, I am not sure what Dr. Latimer was thinking on the C. Diff. I did get the distinct impression that it was not a common thing. She come across as very concerned and worried about it. And again, she was very clear that she could not give antibiotics anymore. She also seemed perplexed at the high Camk without any high neuronal antibodies. If I remember correctly, she said that she had seen it a time or two, but again, it was not common. I will say on the high CamK, I would not classify my daughter as a severe debilitating case of PANDAS. Life is very hard because of her lack of focus and quirkiness, but we are surviving at the moment. It just makes it hard for her to get school work done and it hurts her socially and from a self-esteem aspect. And I suspect there are a lot more thoughts going on in her head than she lets on too. It's not completely obvious though. She just seems quirky. So that does make me wonder at what the CamK is doing in the brain.

 

SF Mom, I have talked to Diana but not since all this occurred. That is a good idea to call her.

 

Falling apart, my ped was against antibiotics from the start so I am just getting the "I told you so" look. It's hard to argue with that 3 week success though. In my opinion, it's a huge clue to what is going on.

Edited May 22, 2010 by Trg girl

[Buster]

There is a ton going on in your post.

 

Starting with the CaM Kinase II, I think peglem was another case with extraordinarily high CaM Kinase II but normal results on everything else. I too was confused here as I thought that the antibodies isolated by Cunningham (such as 24.3.1) were also anti-lysogangliosides.

 

However, it appears that there are other antibodies in the serum that can cause CaM Kinase II activation that aren't anti-lysoganglioside. I'd recommend writing to Dr. Cunningham to ask about it if you are concerned.

 

PANDAS is really diagnosed by clinical symptoms. The elevated CaM Kinase II appears to be significant at separating cases (based on the research by Kirvan and Cunningham), but the anti-lyso, anti-tubulin, anti-D1, and anti-D2 are not yet correlated.

 

My guess is there is something else in the serum (i.e., another antibody) that is causing the elevated CaM Kinase II and this is just not one of the antibodies tested for by the other 4 tests.

 

Regards,

 

Buster

 

 

 

Thank you for the input!

 

Dr. Latimer did order an immune panel. While I have not seen the results in person, Faith at Dr. Latimers told me they were normal.

 

I am very interested in whether there is a C. diff or Pseudomonas component to this. It does seem that it is a connection with a few of us.

 

EAMom, I am not sure what Dr. Latimer was thinking on the C. Diff. I did get the distinct impression that it was not a common thing. She come across as very concerned and worried about it. And again, she was very clear that she could not give antibiotics anymore. She also seemed perplexed at the high Camk without any high neuronal antibodies. If I remember correctly, she said that she had seen it a time or two, but again, it was not common. I will say on the high CamK, I would not classify my daughter as a severe debilitating case of PANDAS. Life is very hard because of her lack of focus and quirkiness, but we are surviving at the moment. It just makes it hard for her to get school work done and it hurts her socially and from a self-esteem aspect. And I suspect there are a lot more thoughts going on in her head than she lets on too. It's not completely obvious though. She just seems quirky. So that does make me wonder at what the CamK is doing in the brain.

 

SF Mom, I have talked to Diana but not since all this occurred. That is a good idea to call her.

 

Falling apart, my ped was against antibiotics from the start so I am just getting the "I told you so" look. It's hard to argue with that 3 week success though. In my opinion, it's a huge clue to what is going on.

[peglem]

Allie had very high CamKII, but also antiD2 was very high.

[Iowadawn]

Our son's initial Cam was very high at 184, but the other autoneural antibodies were normal. Dr. C's response was that the Cam could be elevated w/o the others being elevated and still be PANDAS.

Now, the second one we had done about 3 months later (right ahead of the IVIG) had the same Cam but the anti-lysoganglioside was quite elevated this time. Dawn

[LNN]

Dr. Latimer did order an immune panel. While I have not seen the results in person, Faith at Dr. Latimers told me they were normal.

 

I'd ask for the results. We had a quantitative IG just prior to pex and everything was normal. I interpreted this as meaning no immune issues. Later, we had the pneummo panel and that's when we saw the specific deficiency. So I'd just double check what was tested. May not change your path, but you don't want to make an assumption about what's been tested.

 

It sounds like there's still more digging to do. Like you said, the 3 weeks of improvements let you know what's possible. Hold on to that.