Back to a mess

[junkyardjean]

I've been reading and posting when I could - we added another dd to mix and I forgot how tiring new babies are

 

Dd with pandas is now 5. We've done lots of dietary changes - she has shown allergy to almost very abx she's been on. They say it is a sign on how whacked her immune system still is.

 

Recent appt - looks like possible heart issues from ARF from 2011, liver inflamed, not gaining weight again (talking iv nutrition), behaviour not rapid spike up, but slow build into mid-high level difficult behaviours. Her skin is often grey and has massive black bags. A stranger in the grocery store actually gave me a hug and talked to me about how hard it is to watch your child die in front of your eyes (she thought she was in end stage cancer because the way she looks is similar to her daughter who died from cancer).

 

Feeling completely overwhelmed needless to say... I still carry this thought that we will get a handle on this, but it's been 18 months and sliding back. We've been able to manage the behaviours the best (which is hard because they are SUPER tiring!). When I look at her, I can see something isn't right and don't know what to do. It's hard breaking watching her physically disappear again...

 

I am so MAD at strep right now - we are lucky to know this was her root, but what it is evolving into is scary..

 

Just feeling very alone - this place is the one solace that I know people here really understand that feeling. Trying to be strong with everyone, but I need a place to where I don't have to fight/advocate all the time...

Edited August 15, 2013 by junkyardjean

[mdmom]

Have you looked for other infections? What are her total IGG/IGM levels? I trusted our LLMD when she dx my son 2.5 yrs ago with multiple infections based on clinical symptoms only. It was only after 2 years of treatment for infections and 4 IVIG treatments that he tested positive for the infections that he was being treated for all along. His immune system was not mounting a response to infections and therefore all tests had been negative (most infection panels that docs order are antibody-based and docs assume one's immune system is making antibodies when infection is present).

 

My son was on IV nutrition (TPN) for awhile too since he wouldn't eat for fear of vomiting and he was having real GI pain and GERD. Our LLMD feels that some of the infections (tick-borne) have settled in his GI tract.

[qannie47]

Has she been tested for celiac disease?

[dcmom]

Jean-

 

So sorry you are going through this during what should be such a magical time for your family.

 

I am definitely a proponent of testing the kiddos for everything, esp other autoimmune issues. But, I will also say that what you describe: pale/gray complexion with bags under eyes, slow build of behavior issues, and losing/ not gaining weight have all been symptoms of pandas for my younger dd. They have all resolved with immune modulating treatment (pex or steroids).

 

There have been a couple times where dd has gotten off the school bus, and before she says a thing to me, I can see her pandas has suddenly flared because she is pale, has bags under her eyes, and her eyes look like she is in a fog. (she had been fine sending her off to school). We can almost always SEE pandas in her appearance (not so in my older pandas dd).

 

Eating/ weight has also been a more scary issue of pandas, which also resolves for us.

 

You are lucky (as we are) that you have an original strep trigger. Unfortunately, post initial exacerbation pandas can be triggered by anything. For us, searching for infection has not helped us (I know it has helped others)- dealing quickly and agressively with the autoimmunity has kept my kiddos well.

 

What has worked previously?

[junkyardjean]

Things that worked in the past were hydrotherapy, diet changes away from certain proteins, homeopathy - we are still doing these but they are not effective against her new symptoms.

 

We met with a new ND who recommended we do a saliva and stool panel through diagnos techs in the states to see about intolerances and what is potentially growing in her gut. We should get those results in two weeks or so.

 

She eats like a horse as she packs more food away than her brother (8 years) and myself combined. She is ALWAYS hungry, and she has nonstop access to fresh veggies and fruit. I don't know where it goes though, as she only has a small bm once a day/every two days, and is only 32 lbs soaking wet at five years old... She doesn't show the traditional symptoms of celiac (beyond the anemia), nor of parasites, but the ND stated this panel will be the best bet to start to rule those in/out.

 

Our ped wants to move to ivig, and is willing to coordinate that here in our province (prior to his arrival, we were going to have to head to states). But, I am unsure - my concern is that if we start that now, she is very young and hopefully has a long life ahead if the organ inflammation does not get worse.. How many can a person have ivig in their lifetime? She is also not "typical" pandas behaviour like she was the first flare where he had true OCD, tics starting, and lots of tantrums.

 

If this is now a different infection, leaky gut, etc. will the ivig still be effective?

 

Kindergarten starts in a few weeks, and although the school is highly engaged, I'm worried about the exposure risk

[mama2alex]

Jean,

 

Have you had her evaluated for Lyme and co-infections yet? If she isn't getting well, I would look into this next. I think you mentioned at some point that you have a bipolar diagnosis? If you have health problems, that can be a clue to what's going on with her, and I would suggest that you have yourself tested for Lyme and co-infections as well. Bipolar can absolutely be a presentation of Lyme - I met someone recently who'd lost her bipolar diagnosis after Lyme and mold treatment.

 

In your daughter's case, the early joint pain, allergies, problems with antibiotics, and inability to gain weight, in addition to the psychiatric symptoms are all red flags for Lyme. The tests for it are unreliable, so it's important to find someone who knows how to identify and treat it and have them do a full evaluation. If she's been off antibiotics for over a month, I would recommend the Advanced Labs Culture, which doesn't rely on the immune system response to detect Lyme, but looks for the actual bacteria in culture.

 

Hang in there and keep looking. You will find the answer.

[Dedee]

I agree with testing for lyme. But also parasites come to mind. Has anyone tested her for parasites?

 

Dedee

[junkyardjean]

I am so thankful for this forum!

 

I will f-up with the Lyme lead - when she was first sick, it was November in manitoba, super cold and snowy - no ticks so I assumed that was out. Been doing more reading and realized the Lyme world is much more complex (chronic, congenital). The strep/ARF/pandas may have just aggravated her already low immune function from a pre-existing Lyme infection?? Will be looking into canadian resources - if anyone has any ideas or leads for up here, very welcomed

 

The recent samples were sent and results should be 2 weeks or so for the parasite question.

[tpotter]

While looking into lyme, I would also check for bartonella, babesia (these are parasites, and affect the red blood cells), and other tick borne diseases. Do you have animals around? If so, 2 things...1) get them treated...they may be carrying the same infections, and our vet had no problem giving my dog a huge shot of penicllin in the beginning, and now leaving him on azithromycin every day, because he even gets the PANS symtpoms. Plus if your animals are sick, they will spread it to everyone else. 2) Cats can carry bartonella (cat scratch fever), but so can ticks, mosquitoes, etc, etc...just like lyme.

 

Then, speaking of treating your animals...have you tested your whole family for infections? Turns out I was the one that was carrying around the mycoP in our family, and although very difficult to treat, it's been critical in decreasing flareups of my children. Also, whenever my older son would come home from college, my younger one would "feel" him being sick, and would flare.

 

We've spent the whole summer working on his gut with an Ayurvedic doctor (only to find out today that he might actually have Chron's disease). So, we're still working on that, but diet has made a huge difference.

 

Make sure that you test for giardia, c-diff (my DS20 has had several recurrent infections...probabably from the abx), and h-pylori.

 

Although PEX and IVIG did help my children immensely, it was all short-lived. I am not sorry I got that treatment for them, because I do believe it helped with the horrible flareups they were in. But, it wasn't until we started getting to the bottom of what was going on (gut, parasites,strep, lyme, bartonella, babesia, erlichiosis, c-diff, and even congenital heart surgery for my older son), and really started working on the immune systems, and treating the other problems, that we have started seeing more improvement.

[searching_for_help]

I'm sorry I don't have time to read through this very well, as I'm on the way out the door, but with the weight issues, has anyone checked her thyroid? Hyperthyroidism can cause a lot of the symptoms you mentioned.

http://thyroid.about.com/cs/basics_starthere/a/hyperchecklist.htm