What to try next?

[3boysmom]

Well ds12 was doing pretty well. However the last few IVIGs, things are getting worse with each treatment. Seems like the lower we get the strep antibodies, the higher the myco is going. Ds12 now has terrible urinary frequency and goes into the bathroom every 10 minutes and stays in for 20 min doing rituals. How do we get him back? It's been about 5 weeks of off the chart OCD! We have not seen him this bad since this began 2&1/2 years ago. He is ( 2 years now) on augm XR 1000 x 2 and has tried Biaxin, Cipro, minocy, and now azithro. What to try next? 8 th IVIG is in July, bug not sure since the results are seem to be worse each time.....

 

 

Here is the question I am afraid to ask.... Has anyone seen their child improve greatly and then become disfunctional after a nice stretch AND been able to get them back again? What if he can't return to us again..... Very scared...

[PowPow]

can you get him to good cbt?would he be willing?

[LNN]

I'm just going to toss some stuff out for you to consider - not trying to diagnose or Monday morning quarterback...

 

One possibility is that what you're seeing is a herx response. If the IVIGs are making the immune system stronger, or giving him antibodies that make him better able to fight the mycoplasma, then you could be seeing a response to toxins/die off. If this was the case, then using things to help with detox and inflammation would help. It might also suggest that you need a longer period between - if the body isn't detoxing well, you could be adding to the die off faster than it can clear, in which case you'd want to slow down.

 

Another possibility is that the IVIG isn't helping much at all and the myco and possibly other infections are growing stronger and you haven't hit upon the right abx combo. I'm assuming your dr. has tested for lyme, but I'd really look in-depth at the results and consider either re-testing, testing for co-infections or using an alternative testing method - like PCR testing.

 

Another consideration would be to look at "methylation" issues - and I use that term very loosely. Test for MTHFR and HLA-DR genes, test for pyroluria. If the body's conveyor belts are clogged, you're going to get scrambled signals to the brain. You can also try adding something like tryptophan, 5-HTP or an SSRI for relief. For the urinary urges, arginine or foods high in arginine might be worth considering. Arginine is a vaso-dialator and relaxes the muscle spasms associated with the outer bladder that causes over-active bladder.

 

I wish I had more concrete ideas. But I have to agree with both Nancy and PowPow. If multiple IVIGs aren't giving you results, I'd rethink what you're doing and if you're not using CBT, it's a great tool to add - not just for the immediate crisis but for life. It gives you power over your emotional responses that, over time, become second nature and really empower you.

 

As for detox - you can search the archives for ideas or post on the lyme forum - it's a common problem for those with chronic infections. Resveratrol helped with my son's inflammation as did motrin; alpha lipoic acid, CoQ10 can also help with anti-oxidation, milk thistle can help the liver, binders such as bentonite clay or activated charcoal can help the bowels...An integrative doctor can be really helpful with this.

 

Most of all, try not to get discouraged. You can hit a really low point after hitting your head against so many walls. But try to remember that sometimes the biggest wall ends up presenting that game-changing clue to get out of the nightmare. You get so exhausted that it forces you to cast a wider net and sometimes that's the key. At least that's how my own family found it's way. Hopefully this will be a turning point for yours as well.

[MomWithOCDSon]

Well ds12 was doing pretty well. However the last few IVIGs, things are getting worse with each treatment. Seems like the lower we get the strep antibodies, the higher the myco is going. Ds12 now has terrible urinary frequency and goes into the bathroom every 10 minutes and stays in for 20 min doing rituals. How do we get him back? It's been about 5 weeks of off the chart OCD! We have not seen him this bad since this began 2&1/2 years ago. He is ( 2 years now) on augm XR 1000 x 2 and has tried Biaxin, Cipro, minocy, and now azithro. What to try next? 8 th IVIG is in July, bug not sure since the results are seem to be worse each time.....

 

 

Here is the question I am afraid to ask.... Has anyone seen their child improve greatly and then become disfunctional after a nice stretch AND been able to get them back again? What if he can't return to us again..... Very scared...

 

3boysmom --

 

I think Nancy, PowPow and LLM all have some good points and ideas. The only thing I have to add is our own experience.

 

While my DS was diagnosed with OCD at the age of 6, going back through his medical records and his behavioral history, we're quite certain he was actually suffering from PANDAS with strep as his trigger since he was about 3; that's when the "behavioral discrepancies" as compared to his peers first became noticable, though the quintessential OCD symptom -- contamination and obsessive hand-washing -- didn't show up until first grade. After a bumpy age 6 and age 7, though we didn't pursue specifically PANDAS treatments like IVIG or abx at the time because we couldn't get anyone to acknowledge that it was even a possibility, mother nature or his own immune system or whatever managed to step in and "normalize" him for more than another 4 years. Yes, we did CBT beginning at 6 and wound up throwing in a low-dose SSRI at 7, but then he was rock steady and "normal" until he hit 12 and everything went to he!! in a handbasket!

 

So yes, he was "fine" between 7 and 12, fell off the cliff at 12, and we began to get him back again at 13 (finally got PANDAS dx and put him on an extended term of abx, along with other interventions). Now at 15, we basically have our son back (knock on wood). Yes, you can and will get yours back again!

 

I think that around age 12, maybe especially for boys, is a tremendously tumultuous period, and PANDAS and/or other immune issues becomes particularly powerful as all the hormones of puberty begin to really kick in for them. There's so much growth and change, it is hard for them to find equillibrium emotionally, and for us and the doctors to find a physical equillibrium, as well. As LLM has said, try not to get too discouraged, but if what was once working has ceased to be effective and may even seem to be participating in a worsening, I would think it's time to try something else. It's a puzzle, but once you find the corner pieces, the straight edges fall into line relatively easily, and then it becomes a matter of filling in the interior . . . by far the most arduous and difficult part, but you can do it!

 

Hang in there!

[TwoSocks]

3boysMom,

No direct experience with your situation but I wanted to say I hear how scared you are and I'm sorry. There is always hope, in every situation no matter how hopeless it may seem. I'm not normally a rah-rah cheerleader type of person, but I had to respond because I believe it's true and I can tell you are worrying about forever, instead of today. Focus on today and try to remind yourself that there is hope.

Kathryn

[sf_mom]

I think the hardest part of this journey was figuring out when something 'wasn't' working. For us and many others, it also took investigating all of the things outlined above and understanding the notion of chronic infection. It appears from the climbing mycoplasma titers you are minimally dealing with that as a chronic infection. I think finding the best possible Dr. for your area experienced at treating mycoplasma would be a good start. Our entire family is impacted by mycoplasma as well as other chronic infections and we use a combination of antibiotics and herbs to deal with this particular infection. The mycoplasma could also be wrapped up in biofilms making it almost impossible to treat without addressing the issue.

 

I would also recommend doing a phone consult with Dr. K in Chicago to get his experience with multiple hdIVIG. You might get a clearer understanding or different perspective as to why it is not helping.

 

Wishing you all the best.. but don't give up there are options.