New to PANDAS and possible Immune Deficiency

[ncmom]

My daughter was diagnosed with PANDAS in May and since then I have found this forum and spent hours reading through the posts gaining as much knowledge as possible. Thank you for all of the great information and support you provide! My daughter was diagnosed at seven, we believe it to be new onset and we started treatment right away with high dose Augmentin. She is doing extremely well, I would say 95% back to herself which I am so thankful for! However, during her workup, it was discovered that she has low pneumococcal titers, only 1 out of 23 in range. The rest of her immune work up was within normal limits (IGg, IGm etc.) Now her doctor wants her to get the pneumovax and retest her titers in 6 weeks which I am very hesitant to do. I also want to remark that up until now she has been very healthy other than reoccurrent ear infections as a baby that she outgrew after a year of age. I am not against vaccines, she received all the normal scheduled vaccines thus far,but I am concerned that it may exacerbate her PANDAS again. I have read through all of the past posts on this forum and it sounds like there was a bit of debate on this issue. Those topics seemed to be from 2009-2011 and I was wondering how things turned out and if the parents who did choose to vaccinate had a positive and sustained rise in the follow up titers. It seems as if there is a subset of kids on this forum with questionable immune deficiencies. I would appreciate any advice on this as well as long term treatment plans. We are just kind of taking it day by day and praying for the best. She is still on the Augmentin but a lower dose now, I would like to try to take her off of it as it is upseting her stomach, causing her to lose her appetite and her teeth have begun to stain as well. Has anyone been able to wean there kids off the antibiotics without the symptoms returning? Sorry so long! Thank you in advance!

[Chemar]

Hi

Just bumping your first post so others can see and respond

[Dedee]

If she has been symptom free for a year you might consider weaning and try some natural antibiotics or oils. I would be hesitant to wean without a back up plan for something else. Essential Oils work well for many and are safe when used appropriately. Also, there are several different types of natural antibiotics you can try. It's great that you have had good results. You may want to consider trying something to boost her immune system also to prevent infection. We use bovine colostrum with my son along with other supplements and it has kept him healthy even though he has CVID. Best of luck.

 

Dedee

[riffleshell]

I have a son who also diagnosed early and responded well to initial antibiotics--and we've never done long-term antibiotics. We do the supplements that are in my signature and antibiotics only when he is flaring (not often). It's been an interesting ride and I'm not sure we're out of the woods totally but he is doing well.

 

I'll let others weigh in on the vaccine - I support vaccines generally as well, but can see being leery. On the other hand, what if she actually got pneumonia?

[JakeTyler]

I've had two Pandas docs strongly advise against getting the Pneumovax vaccine. My son's tests also came back that the original pneumovax didn't take for like 20 out of 23. The pediatrician wanted to re-vaccinate but we refused. Dr. K told me the worst episode of Pandas he's treated was onset by a kid with Pandas getting this vaccine. It took many months and several rounds of IVIG to bring him out of it.

[airial95]

There have been those that have been able to wean their kids off of abx, but I agree with deedee, having a back up plan in place would be a good idea.

 

As for the pneumovax, it really is a personal choice. We have never had an issue with the standard vaccines, though after diagnosis we take each one on a case by case basis, and we chose to do them on a protracted schedule (one at a time with several weeks apart) so we could clearly document issues. That being said, we opt out of things like the flu vaccine because in my mind the risks (potential flare) far outweigh the benefits (maybe not getting the flu).

 

 

The real question on the pneumovax challenge (which is what your doctor wants to do, vaccinate and then re-test to see if they mount a response. If they don't, they are classified as "immune deficient") is why they want to do it.

 

Historically it has been difficult (almost damn near impossible) to get insurance coverage for IVIG for PANDAS. Unfortunately, it's also been increasingly difficult to get IVIG coverage for other immune deficiencies either in recent years. I've had multiple doctors report (including at the Atlanta PANDAS conference last spring) that insurance companies are increasingly requiring current patients to stop IVIG treatment for 4+ months and "retest" to see if they still need it - and these are patients who get it weekly and some can even die without it - but the insurance company still fights them them to re-test. The pnuemovax challenge is one of the "tests" that the insurance company will accept to get IVIG coverage.

 

So the question you have to ask when deciding how to move forward is: how will the results affect our treatment plan? Are we considering IVIG and pursuing insurance coverage the only way to make it feasible? Have we had chronic illness that would also point to an underlying immune deficiency that we need to address, or is this being recommended simply because of the lab results? Does the benefits of this "test" outweigh the potential risks (of a flare)?

 

Only you can answer these questions, but I thought I would share one of the reasons many doctors now seem to be pushing this vaccine than before.

[qannie47]

I would not vaccinate. Kids flare with vaccines, and if you do not have to.....I am so glad that your child is dong well. Regarding getting off abx. Well, I too have been tempted. However, I have seen the Panda's rear it's awful head too many times after I thought we were in the clear

[emst]

I would not vax right now. I would suggest seriously taking immune titres so you know big picture deficits her immune across the board . Sorry, tough love here. Food and immunity. How is your child's diet right now?

A lot of parents have a hard time changing or restricting their child's diet when on top of everything the kid has pandas and "now you want to take away their favorite food", or they are refusing anything but certain foods. We really did. It made us sad. Resolving the allergies alone may be enough to build up the immunity. Resolving both the allergies and the nutritional insufficiency is going to be the key, it's going to take a while -- just saying.

 

Have you considered other means by which to build immunity? Has your child been tested for nutritional insufficiency and allergies by a MAPS doctor? Do you have a MAPS Doctor or a PANDAS doctor? as a parent of 3 kids with PANDAS and knowing many PANDAS families there is not one that does not have moderate to severe allergies to food and environment -- my best suggestions while you look around for the best practitioner you can find is to get to a great maps nutritionist, allergist or immunologist and to also put your kids/family on a new diet -- we're on a paleo/modified Atkins hybrid which has been very beneficial for our kids.We take a lot of supplements. Our kids are getting better but we've been at this a while.

Autism research institute has some free webinars with top MAPS practitioners talking about diet -- not just for autism -- celiac, PANDAS. It's all related.

http://www.tacanow.org/family-resources/food-allergy-testing/ -- taca has tons of info about everything

http://ariconference.com/?p=199 -- how to work with your practitioner

http://ariconference.com/?s=vicki --- nutritionist

 

Hope it helps.

[ncmom]

Thank you to everyone for your replies and advice. I at this point have not vaccinated again. I have an appointment with an immunologist for a third opinion next week and will see what he suggests. My PANDAS doctor (we have had only one visit with her) was whom wanted my daughter to get the pneumovax and it was my pediatrician (who has never treated a PANDAS child) who advised against it. Ironic right! As far as her diet, we have for a few years now been avoiding preservatives, food colorings and try to buy organic, non GMO, and all natural foods and products. My son is a Type 1 Diabetic as well for the last 4 years so we also try to avoid simple carbs and limit junk food in general. And since PANDAS has now entered our lives, we have also gone gluten free and I limit dairy as well. She is doing well right now, we have just changed to a prophylactic dose of Azithromycin. I am keeping my fingers crossed that she will continue stay healthy and PANDAS does not rear it's ugly head in her life again, it's a constant worry that always stays with me.