Please guide me... lost

[ibcdbwc]

Hi All,

 

Quick background: ds dx'd PANDAS (in retrospect PANS) by Dr. T several years ago. No identifiable triggers noted at the time. Strep, mycoplama despite checking at various times always negative. Lyme negative by CDC, but id have one postitive band IgM 23 and one Ig G 41 during one flare via western blot. Always responded to Motrin and/or Azith. Was on Azith for about a 9 months and weaned successfully. Treated intermittent blips with anti-inflammation measures successfully and had usually 1-2 major flares a year. We were okay.

 

Now age 12.5 and for the last 3 months like clockwork he has had a viral illness and subsequent one week long terrible OCD, moodiness, through the roof insomnia... It eases after about 7 days each time. The flare is so great that he was rx'd Klonopin out of desperation but we think that made him more moody, aggressive, forgetful, drugged. Melatonin seems to help some. He even took Ambien during the worst, worst times.

 

Most drugs in general seem to hype him up and make him worse... In his life, Zoloft, Benadryl, Gabapentin... have all made him hype and moody or more anxious. Magnesium and motrin seem to always help some though the degree is questionable lately. Azith did always in the past - but last month it did not help at all - so we switched to Augmentin which is what he has been on since mid October.

 

The last two flares October and November, we have noted additional physical symptoms: fiery red cheeks and ears. They bother him so much. He also has heat flashes all day long, knee pain and leg pain, problems looking at bright light (computer or tv screen). His eyes hurt and are tearing and he says his skin doesnt feel right. We don't note anything different in the sense of potential allergies.

 

I am currently STILL trying to get in with an LLMD to investigate lyme but i am having a hard time STILL finding anyone who will help us. The closest LLMD is three hours away with months long waiting list. We do have an understanding psych but she is fairly baffled. We have appt. to see endo in a few weeks (he is hypothyroid but stable supposedly on minimal synthroid). Do I seek neuro? immunologist? first to make sure we are not missing something? We are near Duke and UNC if that helps though I've been told both are non PANS/PANDAS believers.

 

We've been living on the edge since September, bracing month to month, and I just am not sure which direction to turn. My husband now wants to turn full tilt toward more psych meds but my experience tells me that he won't respond well. At least we haven't had a positive response yet...

 

Advice?

 

 

[3bmom]

Our DS was diagnosed with PANDAS at 6. We had a flare at 9 and 11. Our flare at 11 was horrible. I wonder if hormones plays a part at this age. We also found out his viral titers for HHV-6 were almost 16x higher than normal. We went on valcyclovir 3x a day and continue as a propholatic. We had no idea he had life threatening allergies. Have you done a blood test for food allergies and food dyes? Benadryl will make some hyper from just the coloring.

 

We follow the Paleo/caveman diet and eat organic and GMO free as much as possible. We had such a drastic reduction in our allergy titers, but most important behavior, that our immunologist has all his patients go paleo. Dairy didn't effect him visibly before his flare but we saw improvement in just a couple of days after elimination.

 

Hope this helps. I did post today in regards to glyphosphate and GMO's. The interview with an MIT researcher is free for a few more hours and Rowing Mom posted a link for her paper. I think it explains a lot of issues our kids have and would be worth looking in to if you get a chance. Good Luck!

[nicklemama]

If it's been a few years since you've had testing with Dr T there have been things added and he now includes a whole list of viruses. That's worth checking plus I'd urge you to test Lyme and coinfections again. My son was originally diagnosed by Dr T and had the testing turn up absolutely negative for everything. He had IVIG twice but still would flare and have a roller coaster ride. We retested this pat spring with his expanded testing through our local doctor. He popped up quite high for CMV and he was positive for the tick borne diseases of ehrlichia and anaplasma which we've been treating since and he's been doing great. He was exposed to two friends ar a birthday party last Sunday who turned out to have strep on Monday and we've not seen a blip at all.

Edited November 18, 2013 by nicklemama

[ibcdbwc]

Thank you for your quick replies. Yes, its been two years since bloodwork (other than thyroid levels). I know there are other things to test for but I am unsure as to how to get a doctor to order these tests or what battery to ask for? You both mention things for which he has NOT been tested. At age 5 he had only basic allergy testing that showed all negative but I have always thought he was an allergy child despite his results. I have him on lactose free milk as we had issues with bloating and such when he was younger et cetera...

Would you suggest I call Dr. T again (we've not talked to him since 2011) to arrange for a proper and thorough work up? I am not sure where to turn for help in my area. Of the Dr.s listed on this site, they are either not practicing any loner or have waiting lists a mile long.

[pr40]

in addition to great advice you got already, you can start thinking of the condition as an auto-immune response and go into combat mood.

Radical diet changes, detox, anti-inflammatories, lots of exercise, and so on. You could also benefit from knowing his methylation genes, if he has a leaky gut genes, how he handles sulfur, etc.

Regardless of what causes the condition, if it is auto-immune process of healing seems to be remarkably similar.

symptoms he has do seem neurological. did you try zinc? copper? do you know his levels?

[rowingmom]

With hot flashes, leg and joint pain, you really need to test for the lyme coinfections. Large muscle pain, weakness can be babesia, while bone (and marrow) pain is usually bartonella.

 

I would ask your local lyme group or ILADS (seem to be hard to contact) where the more local LLMDs are. There may be some you are unaware of.

 

If you think you have found a good one, make an appointment and keep it, just try to find someone else to start the ball rolling in the interum.

 

I don't think Dr T is on board with coinfections, and won't test properly for them.

 

It certainly wouldn't hurt to rule out other things in the meantime, but if any neurologist/psychologist/or other -gist tells you they can't find anything wrong so the symptoms must be psychosomatic, don't believe it. Your son has physical symptoms of infection.

 

Sorry about what you are going through.

[3bmom]

Our son was on lactose free milk thru childhood. When we had our horrible flare at 11 removing Dairy gave us results in 2 days and more every day after. Definitely get retested and add viruses. Good Luck

 

PS If difficult to switch you can slowly add to milk in regular carton. I also make great chocolate shakes with coconut ice cream, choc. almond milk, and a frozen very ripe banana.

[nicklemama]

Go to ILADS and request recommendations for llmd's in your area. Pandasnetwork.org has a pretty good listing by state of PANDAS docs. With stomach issues, I'd recommend looking for an integrative doc that will test food sensitivities and other things. MAPN is a group of integrative docs that test and treat for these types of things. My son has had the work up and currently sees a MAPN doc who is treating him for PANS.

[sf_mom]

If I am reading your post correctly..... Your DS flairs for a week, once a month for the last three months?

 

Why I am trying to pinpoint the specific flairs is the Lyme growth cycle is every 28 to 34 days. Although the flair may look viral and self resolving, I am suspicious of the regularity of the flairs and timing.

 

I too would investigate other potential infections and viruses with an integrative LLMD.

[Hopeny]

Hi I am sorry you are going through this. there are a number of lyme specific bands that on their own combined with symptoms are indicative of Lyme. The CDC surveillance criteria were developed for surveillance criteria and not for diagnostic purposes (it actually says it if you look up the guidelines) and are extremely outdated/somewhat irrelevant. For example, Band 41 which the CDC includes cross reacts to hundreds of other bacteria, while other bands like 23 are specific to Bb and is considered relevant on its own combined with symptoms. There are several good explanations I have read about the lyme testing that can explain this way better than I, including Pam Weintraub's book Cure Unknown and Dr. Richard Horowitz's new book Why Can't I get Better.

 

As SF mom points out the Bb life cycle could help further pinpoint what you are dealing with. There is a species of Borrelia with a Japanese name I cannot recall, that I believe my friends son had, where he would be well for 3 weeks and then would get a headache and fever. After 1.5 years of treatment she had a very good result using Doxycycline which is what is used to treat tick recurring fever. I am not a doctor but many of the symptoms you are describing could be Lyme/co infections. Lyme symptoms do wax and wane. Babesia can cause heat flashes. It may be worth looking through Why Can't I get better (I just downloaded for my kindle) to see what fits. Another option is to contact ILADS.ORG while you are on a waitlist to be seen and see if one of their doctors will work with one of your current doctors.

 

I know it is hard to see it this way but I would consider it a positive that you had a lyme specific band show up positive, this can help get you answers as to why the treatments have not lasted for you and what needs to be treated to get better. All the best to you

[ibcdbwc]

Thank you for all the support and advice. I know you know how desperate a parent can be. I am losing it myself as I question everything about PANS/PANDAS now. My questions -- did we miss the boat early on-- should we have hit him harder from an OCD angle-- intensive CBT and/or medication? Should we have hit him harder and pursued IVIG if indeed PANS… Should I have searched more for lyme/cofinfections? Should I have pursued methylation et cetera.

 

My reality is that we were managing well without only about 2 flares a year. The spring ones were always the biggest. But he of course had some general blips along the way so for lack of a better term we just kept on swimming and lived the ebbs and flows. He was in school, functioning well for the most part so we went on. Now I am kicking myself for not taking that time to dig deeper.

 

Yes, in September we had his first major flare in a long time but this time it changed. This time his sleep became a major problem, primary in fact. He worries about not sleeping from the time he wakes up in the morning. Then new obsessions after that… missing school….not eating…. Really the worst we've ever seen. Got him back to functioning and 4 weeks later another flare, same obsessions, same problems though we were able to keep him in school barely. Got him back to functioning and now 4 weeks later here we are again. This one is just as bad as September and he has officially declared himself "insane." Tonight our psych is trying Mirtazapine (sp?) for sleep. We'll see..

 

I did call Dr. T today and he ordered a battery of tests which have indeed been expanded since 2011 to include all items mentioned above. It's a start.

I will certainly attack from autoimmune perspective and hit him harder with all measures involved. And yes Lyme - I did read about the life cycle. I will contact ILADS. I just wish I could get him over this hump so I could get my own thoughts in order. Maybe if it is Lyme this will only be a week long journey too. The psych meds don't make it easier-- they seem to cause their own problems which still cause him to feel "insane." What a horrible vicious cycle we are all in.

 

My thanks to each of you. Being able to talk to others who do not think I AM CRAZY is so incredibly powerful. Right now our family, our friends and our doctors think we are the ones who are nuts.

[nicklemama]

You are not crazy despite what others may think. You cannot turn back time and second guess yourself. You must move froward from today. You are moving in the right direction.

[rowingmom]

Thank you for all the support and advice. I know you know how desperate a parent can be. I am losing it myself as I question everything about PANS/PANDAS now. My questions -- did we miss the boat early on-- should we have hit him harder from an OCD angle-- intensive CBT and/or medication? Should we have hit him harder and pursued IVIG if indeed PANS… Should I have searched more for lyme/cofinfections? Should I have pursued methylation et cetera.

 

 

Don't feel badly about things you may have missed. We missed lots, and just assummed DD had Tourette's, aspergers and a sensitive bladder; was just generally a quirky child. I didn't twig until the pain/fever/chills/headaches showed up.

 

I missed many boats, but really - if infection is involved and not delt with, there would probably have been a relapse after IVIG. DD has gone to plenty of CBT, but in the midst of a flare was unable to transfer what she learned into action of any sort.

 

It's not too late to start researching methylation etc.

 

My whole family pretty much thinks I'm nuts, especially when I mention anything to do with lyme, but you know what - DD is 98% better than she was so I don't care. Sometimes it's fun to be the nutty one .

Edited November 19, 2013 by rowingmom

[sf_mom]

Hopeny is thinking of Borrelia Miyamoto. Based on a Tick Study done here in Northern CA the prevalence of Miyamoto is much greater than BB.

 

Here is a decent short video on it and definitely outlines the relapsing fever aspect of the bacteria.

 

http://news.yale.edu/videos/borrelia-miyamotoi-infection-new-deer-tick-borne-disease

 

It is fairly simple to start on combo'd antibiotics to see if you gain improvement. If you can find a good integrative LLMD they should be able to work with you on methylation, vitamin/mineral deficiencies, test for co-infections and other viruses. If you do not make gains with treatment and your child is immune deficient you might then consider other immune boosting therapies like IVIG, GcMAF shots, IV micronutrients.

[ibcdbwc]

Thanks everyone. Labs are still pending as is appt with new Dr. In the meantime, this episode lasted a bit longer. He was started on very, very low dose of fluoxetine for the intense anxiety and OCD. He was then diagnosed with a sinus infection and placed on Suprax for three weeks. All symptoms began to resolve including headache, photophobia, insomnia, OCD after 3 days of fluoxetine and 2 days of Suprax. He was quite well with virtually no anxiety after 5 days of fluoxetine and 4 days of Suprax. That was Monday, yesterday. After lunch he complained of stomach pain, then he proceeded to vomit for the next 8 hours. Low grade fever, cheeks flushed, uncomfortable... He's already started to ask if the anxiety/OCD will come back... self fulfilling prophecy? We are bracing ourselves.

Any ideas?