IVIG - what do we need to know?

[GraceUnderPressure]

Okay, I desperately need experienced opinions! Our situation with ds 18 (OCD-based Tourette's) has hit a new low. I discovered that he has begun dealing with the huge number of tics he has to go thru to get to the bathroom (& all too frequently not making it in time) by avoiding the bathroom & using paper towels & throwing his waste in the regular trash. Needless to say, the smell gave it away. I am so heart broken to see my firstborn driven to this level of desperation - we have to do something for him!!!

 

We have tested for strep & ASO - negative.

Myco p - ambiguous (IgG almost positive level).

Cam k - 146 (don't have the rest of the Cunningham test results yet)

Igenex full panel (minus lyme because of snafu) - all negative.

 

Dr. started ds18 on zoloft to get his serotonin level up. It did seem to get rid of a lot of the minor tics & reduce his sound sensitivity. Also seemed to possibly make his major ones a little more intense.

 

At our next followup, dr. had us start him on doxycycline (inflammation dose & I think to cover the possibility of myco p), been on it for about 2 - 3 wks but I keep forgetting to give it to him (has to be at lunch away from his other supplements & we're frequently on the go during that time) so it's not been at all consistent.

 

Weird thing is that we picked up a flu-like virus just before we started the doxy. Viruses have always made ds18's tics worse and this was no exception. But ds18 has never really waxed & waned with these things. It has always been more like wax & wax! But this time he actually did return back to the level he was at before (which is still really bad but at least not as bad as when the bug was going thru our family). What to credit? The zoloft he's been taking for ~4-6 wks or the inconsistent doxycycline or something else?

 

Dr. checked his vax titers & all the MMR ones were fairly high, IIRC, though only the rubella came close to being 4x the high value which was the point at which the dr said it would be of concern (But we were only a few points short?) Said he did not think ds18 was a "viral kid"(?)

 

His dopamine & adrenalin hormones are too high; his serotonin & gaba are too low. He also has hypo-cholesterol (I think from digestive issues - his gut doesn't break down & use protein well either) He's been having a little bit of D & I don't know if I should blame the bug we've been fighting or the doxycycline (worried about clostridia - his probiotics have been inconsistent too - his tics have made giving him supplements a mega challenge)

 

I'm at the point that I am wanting to try IVIG to see if it will help while agonizing at the price tag, as well as the potential risks, for a "let's see if this works" effort. I am considering setting up an appt for the IVIG just before Christmas (because of the break in our homeschool activities to allow him some recovery time & minimize what he might miss) Is this a good idea or bad? Please share with me any & all info that you think might help us in our decision & how we should do this to optimize our outcome! Such as - should we avoid anything that might irritate or set off his immune system for a particular length of time? etc.

[LNN]

IVIG is always a very personal choice. With no black and white answers from research and such a financial impact, you really have to make this decision based more on your own individual circumstances rather than on what has or hasn't worked for other people. Each kid has so many unique things that may not be conveyed on the forum. So even if 20 say it was great and 3 say it was horrible (or vice versa), there's no way to know if the same will be true for your child. You will have to trust your instincts on this.

 

That being said, there were two things that struck me in your post. First, you don't have lyme results and second, you don't have complete Cunningham results yet. I think I'd wait for these results before making an IVIG decision (since it sounds like it will have a big financial impact on your family). Being negative on co-infections doesn't mean negative on lyme. Knowing if other Cunningham markers are elevated may help you know how severe (or not) the autoimmune factor is in your son's condition. I know it's tempting to look at a calendar and pressure yourself to do a medical procedure at the "best" time. But let's say your son had lyme - then doing IVIG prematurely (prior to significant treatment with the correct abx combo) could really give you a prolonged negative recovery - which would screw up your calendar way more than doing IVIG sometime other than the holiday break. So follow a plan that's guided by test results rather than a calendar. You just can't predict IVIG reactions that well.

 

It seems like you might want to give the doxy (or maybe bactrim or omnicef or other myco p abx) a more consistent trial of a month before making any decisions. Whenever we need to change our pill schedule, it's easy to forget a dose until it becomes routine. So we set alarms on our cell phones (currently have 4 alarms per day). It's saved the day more than once. You may also want consider doing probiotics just before bed instead of during the day. Our LLMD likes patients to take them at bedtime because the stomach acid is lower and the probiotics can sit in the GI tract longer when the body is at rest and not actively moving things along.

 

Finally, you don't say what kind of doctor you're working with (sorry if I should know this from other posts). But since you're still searching for that needle in the haystack, I'd consider an LLMD for a consult. As a "breed" of doctors, they seem to be more open to looking for that needle and know how to use various abx and supplements more effectively. I know that means more waiting, more money with more doctors. But I'd really encourage you to keep digging and know what you're treating before trying IVIG to "see if it works." I'm not against IVIG but it is a big deal. I'd do more homework first.

 

I know you must be exhausted and want this to just be over with. Try to hang in there.

[dcmom]

While waiting for test results and medical help- which I believe are key.... Is your son in ERP therapy? My very little daughter had/has bathroom OCD also, and avoidance (for as long as possible) is her way of dealing with it when it is strong. Since he is older, I would imagine he might be motivated to work on this with the help of a good therapist.

 

I agree with LLM- I would try to get clear Lyme results. If they are negative, and Cunningham's anti neurals are high, however, I think I might move ahead with IVIG. It seems, however, that you will need to prepare for a possible worsening.

 

It is so hard that we have no clearcut answers. I feel like so much time is spent waiting: waiting to see if this works, then waiting to see if that works- while in the meantime, our kids lose more time, and more of themselves. I firmly believe, if they are not in a halfway decent place, and/or not improving - we need to TRY something else.

 

I am so frustrated that there are not more options.

[pathfinder]

Just a thought but several days ago there was a post regarding urinary frequency topic.

Somehow I cannot copy the link but it was last posted on Dec 1st by EAMom under Urinary Frequency

There was a post by Erin3

 

Posted 24 November 2010 - 02:07 PM

This was one of my son's issues before we even suspected PANDAS. Our urologist did a flow test and his internal sphincter muscle would not relax enough to empty the bladder. They ended up putting him on believe it or not, prostate medicine, which helped a lot. His was truly a physical symptom, not an OCD symptom. I don't know if there are natural ways to help relax the muscle. Maybe take her to a urologist to rule out any physical symptoms first?

I have a son 17 who has urinary frequency problem so I took Erin3's post to my heart. Maybe you want to look into this as well along with other things???

[sf_mom]

I too think a good LLMD could help with a few issues. Since his mycoplasma seems like it might be of concern a trial of combo antibiotics would be worth it to see if it helps. Most LLMDs will treat mycoplasma for a minimum of 4 months. They could also help with testing for viruses, parasites, molds, allergens and environmental toxins.

 

I have LD and do not currently have any positive results for co-infections. For example, Babesia has 17 known strains and they only have the ability to test for two. However, I have many of the clinical symptoms that have been heighten since the introduce of tindamax (cyst busting antibiotic) and they will most likely treat me based on clinical presentation. I am also positive for Mycoplasma and it is being treated along with the Lyme. Anyway, I've seen Lyme results go both ways: my younger son has positive Bartonella/Babesia but IND for LD and my older son positive for LD results via provocation/DNA testing but negative is negative for co-infections.

 

Hang in there, a few extra results might point in a solid direction.