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I thought things were going well after my son had sinus surgery in June. He spent the summer gradually regaining his strength and endurance, and did well the first marking period of school. He has been on 500mg zith since June, along with diflucan. However, things have been slowly unraveling the past 4 weeks. It started with his usual fall allergy stuffiness, and spiked a bit with mycoplasma exposure 4 weeks ago and again last weekend. PANDAS OCD symptoms started showing this week and nausea / stomach upset in the middle of the week (though that seems to have passed), and he stayed home from school 2 days. ENT ordered another CT scan, which I am hesitant to do. Pediatrician says it looks like sinus infection and we should start on biaxin and do a CT scan to make sure everything is OK since surgery. I have a phone consult with PANDAS doc this week.

 

Just got some labs back (which were actually drawn on August 30 but not sent by the lab)... and found that DS mycoplasma IGG is still at the highest limit ( DS >5.0 / ref range 0-0.9)It has been the same since February 2010. Mycoplasma IGM is not elevated. (DS 240 / ref range 0-770)

 

New labs also show that IGA serum has dropped to "low" levels. This is a change from Feb. 2010

 

Feb. 2010 --> IGA, serum 97 (ref range 70-432)

Aug. 2010 --> IGA, serum 56 (ref range 70-432)

IGA Subclasses

Aug. 2010 --> IGA1 44 (ref range 47-249)

Aug. 2010 --> IGA2 4 (ref range 4-50)

Aug. 2010 --> IGA, serum 56 (ref rage 65-356) (Question - why / how is this different from the IGA serum listed above?

 

 

Previous labs have consistently shown mild IGG deficiency - with 10/14 s. pneumoniae titers below protective levels.

 

QUESTION: I remember something about IVIG being different if you have IGA deficiency. We are moving toward IVIG in early 2011. Will this mild deficiency make a difference?

 

GOOD NEWS: Blood work shows that liver functions are good, so I guess diflucan is OK to continue.

 

Any thoughts / interpretations welcome. I always like hearing from you guys before I talk with the PANDAS doc... that way I can ask all the best questions. Thanks!

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Hi Kimballot,

 

I am interested in your questions too. I don't know much about IVIG, but have read on here that insurance is less likely to cover it if it is a subclass deficiency. It is interesting that he is lower now than in the past.

 

My dd was positive for mycoplasma this summer (IGM) and now negative for it with the IGG going up only slightly. I have read quite alot about it and it can be found throughout the body, in any organ and especially likes the respiratory tract. I suppose it could be possible it may have landed in his sinuses.

 

How do you know he definitely had mycoplasma exposure? Why is he on diflucan? Is it for yeast or is it to help fight the mycoplasma? I read that somewhere on here. Who suggested he use it?

 

Another ct scan is a hard decision. Would the results help to decide on another surgery? If not it would just be abx anyway right? You could start on biaxin and just see if he improves. All I can recommend is if you do the scan, make sure the person running the machine has calibrated it for his age and weight.

 

Do you irrigate his sinuses with a neti pot or a bulb?

Edited by mom love
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I'm sorry you have to do battle again. I think the biaxin sounds like a good first step. Zith has never been effective for sinus issues in my house. We usually end up forking out the $ for ceftin. With your concerns about myco, I'd think a long course of biaxin would make a lot of sense. Maybe see if you can get an extended script - 30 days? If you see improvement, it might allow you to avoid a CT scan. You know my little soapbox about making sure infections are gone before doing the big gun stuff. Maybe a long abx trial and then re-check blood work for myco and IG levels...

 

Now for your own health, remember to hang on to the summertime gains and remind yourself you'll get there again. This is a setback, not a defeat.

 

Wishing you quick and positive results,

Laura

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Wpw, kimballot, I didn't know you were going through this! I'm sorry to hear!

 

I have a couple thoughts. First, it does sound like it is safe to keep going with diflucan, however, in our experience my boys both developed "resistance" or "tolerance" with this one and we had to move on to ketoconozole as our antifungal. Is there a possibility you are seeing yeast? Or could the yeast be causing immune system to plummet, and autoimmunity to increase? Our DAN doc has eluded to this in the past.

 

Also, I worry about the IgA levels b/c I have heard that you cannot have IVIG done under those circumstances...yikes!

 

Last, any chance your son has developed an intestinal infection from the chronic azith use? As you know this is why my boys can no longer take azith, ds6 developed klebsiella, we got that under control, then tried azith again and then he developed clostridia! Both of these infections caused problems that were worse than pandas. Same type of thing happened with DS2. Maybe you can get in touch with Scott and have an OAT test done to see what is going on in the gut (he is up your way now).

 

As far as the IGg stuff, I have nothing to offer...I hope you are able to get to the bottom of this!

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Thanks, Mom Love - I've been thinking about your comments.

My dd was positive for mycoplasma this summer (IGM) and now negative for it with the IGG going up only slightly. I have read quite alot about it and it can be found throughout the body, in any organ and especially likes the respiratory tract. I suppose it could be possible it may have landed in his sinuses.

I do wonder if mycoplasma is in there and if he is not clearing it. I wonder if he is unable to mount an igg response. Perhaps this is an underlying infection that is constantly brewing and taxing his immune system.

 

I had a respiratory infection about 4 weeks ago and the doc put me on zith. He did not test it, but said it was likely mycoplasma. That was when I saw the increase in DS PANDAS, but they decreased a few days after my zith ended.

 

Last weekend DS stayed with some friends overnight and one of the kids was coughing (I found out afterward). The next day he was dx with walking pneumonia. DS has had a ramp in PANDAS symptoms since then. At first I thought it might be more pscyhological because DS was really worried when he heard the kid had walking pneumonia, and DS keeps saying "I think I have walking pneumonia, I don't feel good" .... even though he has no cough or breathing problems. I try not to make too big a deal over it, telling DS that his PANDAS symptoms will increase if he is exposed, but the antibiotics will keep him from getting the infection. HOwever, he started having some nausea this week and we usually only see that with sinus infection. Then the pediatrician looked and said it looks like sinus infection..

 

Why is he on diflucan? Is it for yeast or is it to help fight the mycoplasma? I read that somewhere on here. Who suggested he use it?

We started using diflucan with antibiotics a few years ago. When DS was 5 he had his first sinus surgery due to unrelenting sinusitis. He had been on abx from birth and the only thing they found when they cultured the sinuses was fungus. It seems that he was actually having fungal sinusits because the ABX had removed all the bacteria, so the yeast/fungus had taken over. So..now we do diflucan with ABX.

 

Another ct scan is a hard decision. Would the results help to decide on another surgery? If not it would just be abx anyway right? You could start on biaxin and just see if he improves. All I can recommend is if you do the scan, make sure the person running the machine has calibrated it for his age and weight.

 

Do you irrigate his sinuses with a neti pot or a bulb?

Yes - antother CT scan is a hard decision. My son had a huge mucocele (cyst) removed in june and it had been there a long time and had eroded some of the bone between his sinus and his eye. I think that is why the ENT wants to take a look at what is going on. I am hesitant to expose him to more radiation, but I also do not want another cyst to be forming and growing. Yesterday, DS said he had a pain behind his right eye. That scared me enough to jump into the "go for the CT scan" corner! We'll see if I change my mind.

 

Netti pot is a good idea. We don't pull it out often enough, and he has not used it in a few weeks. I am going to pull it out of the closet... but I think I'll sterilize it first, and maybe start using sterile water. I think I am starting to get contamination OCD!

Edited by kimballot
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I'm sorry you have to do battle again. I think the biaxin sounds like a good first step. Zith has never been effective for sinus issues in my house. We usually end up forking out the $ for ceftin. With your concerns about myco, I'd think a long course of biaxin would make a lot of sense. Maybe see if you can get an extended script - 30 days? If you see improvement, it might allow you to avoid a CT scan. You know my little soapbox about making sure infections are gone before doing the big gun stuff. Maybe a long abx trial and then re-check blood work for myco and IG levels...

 

Now for your own health, remember to hang on to the summertime gains and remind yourself you'll get there again. This is a setback, not a defeat.

 

Wishing you quick and positive results,

Laura

Thanks, LLM -

We've never done Ceftin and I've not heard others talk about it. I just looked it up. We have done other cephalosporins, though. Do you fork out $ because your insurance does not cover prescriptions, or is Ceftin not covered for some reason?

 

We started the biaxin yesterday. CT is scheduled for Tuesday. I am rationalizing it saying that they never did a post-surgical CT, and they want to do annual CT follow up on him for a few years... so maybe this will be it for a year. I am having a hard time because my immediate fear of sinus problems is balanced with the long-term fear of frequent exposure.

 

Thanks for the pep talk, too. Yes.. I need to look at this as a set back. You and so many others on this board have taught me the value of tenacity and perseverance. It is just a blip. We will figure it out and move on. Thanks!

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Thanks, Stepanie -

I have a couple thoughts. First, it does sound like it is safe to keep going with diflucan, however, in our experience my boys both developed "resistance" or "tolerance" with this one and we had to move on to ketoconozole as our antifungal. Is there a possibility you are seeing yeast? Or could the yeast be causing immune system to plummet, and autoimmunity to increase? Our DAN doc has eluded to this in the past.

 

Hmmm... I hadn't thought about resistance. Dr. B said that could happen if we did not do it daily... but I hadn't thought about that. I will keep that in mind if the change in ABX does not help.

 

Also, I worry about the IgA levels b/c I have heard that you cannot have IVIG done under those circumstances...yikes!

Yes - I recall reading something about this. Hoping someone with low IGAs could join in here. I'll see what Dr. B says on Wednesday.

 

 

Last, any chance your son has developed an intestinal infection from the chronic azith use? As you know this is why my boys can no longer take azith, ds6 developed klebsiella, we got that under control, then tried azith again and then he developed clostridia! Both of these infections caused problems that were worse than pandas. Same type of thing happened with DS2. Maybe you can get in touch with Scott and have an OAT test done to see what is going on in the gut (he is up your way now).

 

He did start with stomach pains and diarrhea this week. I think the diarrhea cleared, but stomach is still upset. We often see this with sinusitis, so I did not think of intestinal infection. I forgot Scott was up North now. He would be good to see. We change insurance in January and will have out of network coverage. I should put him on my list of folks to see. I will keep the idea of intestinal infection in mind if it turns out to not be sinusitis.

Thanks!

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My understanding of low IgA as it relates to recieving IVIG is this - some people have a low IgA because they make antibodies to IgA, and these antibodies can react to IVIG because there inevitably is some amount of IgA in with IVIG. This can create anaphylaxis.

 

The question can be resolved by testing your child for antibodies against IgA. Also my understanding is that in children with antibodies against IgA, their IgA levels are exceedingly low, much lower than your child's, but as all children are different, they should all be checked.

 

Some IVIG contains a guaranteed less amount of IgA, the Gammagard is one of those, and I've heard some kids receive gammagard instead of gamunex for this reason.

 

There are also other reasons for low IgA, in particular low gut immunity, so it would be good, once you test for IgA antibodies and find that is not the case, to take a good look at supporting his intestinal environment.

 

I hope this helps, good luck with everything.

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Well, if it makes you feel better, I would be jumping for that ct scan too. That is potentially too serious to think twice about. Again, just double check with the technician about the calibration right before he goes in.

 

Let us know how it all turns out. And the doctor appt too. I sincerely hope and pray it is not another cyst.

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UPDATE:

 

Ok... had CT scan, talked with ENT and phone consult with Dr. B last week -

1. DS has inflammation in maxillary sinuses, which is probably slowing down drainage and causing pressure. No acute infection / no cysts :)

 

2. Dr. B is taking a different approach than we've taken in the past with other docs. DS has had sinus symptoms EVERY November for 13 years. That is usually when PANDAS symptoms start and they stick around until April or so.

 

Dr.B thinks the problems are more due to allergies and inflammation making a breeding ground for infection. Now that the Fall molds are ending, he put DS on 2 week steroid taper to try to decrease inflammation and increase mucous flow. Told me to keep up with rhinacort nasal spray and mucinex, and to D/C the zyrtec for the time being. He also changed him to omnicef 2x/day.

 

DS started new meds 2 days ago. After 24 hour he said "mom.. my throat doesn't have any gunk in it and I can breathe! The sores in my mouth are gone too".

 

I am just keeping my fingers crossed that we can maintain after the prednisone ends!

 

Regarding the IGA deficiency - Dr. B says we will deal with that when it is time for IVIG. He basically said the same things AMyJoy said (thank you Amy), and he did not seem overly concerned about it... but did say it makes it even harder to fight off respiratory infections.

 

Thank you all for your support and your responses!

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