Feeling confused

[colleendonny]

Well, we had our 3rd appointment with Dr.B yesterday and I feel as if I am more confused than when we first went there....

I'm wondering if I can get a little advice/ insight/ suggestions from anyone. I would appreciate it!

 

DD started with overnight onset of symptoms in October when she was 4. Started off with saying "bad words" in her head then intrusive thoughts. Then some jaw/ lip smacking tics. These symptoms are still present, although the jaw ones aren't as much as they used to be. Then she had a period where she had some quirks that kind of went in phases, like waxing and weaning of symptoms: Few days of wanting to pull out her leg hair, a week or so of wanting to scratch objects, some sexual thoughts, A few nights of separation anxiety, although we never had to sleep with her, regression in her coloring ability, babytalk, lots of confessing,some ODD here and there, about a week of frequent urination, a few days of excessive handwashing and talking about germs, she always thought she touched things "too hard" although she wasn't, tempertantrums,she didn't want to go near some people because she thought she would hurt them,she would always mutter "sorry" and "excuse me", because she she thinks she farts or hurts people, always thought she did things on purpose when they were an accident.

 

Brought her to the pedi, said nothing was wrong. Lab tests including ASO, DnaseB rapid were negative. Was sent to get an EEG, negative. Saw a neurologist. She had an MRI, negative, and a spinal tap to check for NMDA receptor encephalitis, which was also negative.

 

Had our first with Dr. B in December, about 7 weeks after initial onset. When we first saw him she was at about 85%. The only things were really the intrusive thoughts and words, which don't really make her anxious or scared, and some jaw/ lip tics. We drew her blood and we were sent off with an rx for a steriod burst and abx of Augmentin. So, I couldn't really tell how well the Orapred was working because by the time we saw Dr. B, many of her symptoms had faded.

 

We saw Dr.B again in January and he explained her lab results. Her Ehrlichiosis IgG was positive. Normal titers are 1:64, her were 1:128. Also, her C3D immune complex was high at 50, when normal is 2-25. And her vitamin B12 was very high at 1,568 when normal is between 243-894. Also abnormal was her Ganglioslide GM!, Triple Evaluation Asialo-GM1 Ab. Hers was 25 when anything under 25 is considered normal. We added Azithromycin with the Augmentin for the Ehrlichiosis.

 

We then went with IgeneX testing. All co-infections came back negative. Lyme results were for IgM were IND on bands 39 and. For IgG bands were IND on 31 and 39 and + on band 41.

 

Dr, B is convinced she has PANDAS, and I believe she does too. I can't think of anything else that would cause such overnight symptoms. When I asked if he thought it was the ehrlichiosis that triggered it, I didn't really get an answer. He never suggested we see an LLMD but I scheduled one and we don't see him until April.

 

She had a period of stuttering after starting the Augmentin that lasted a few days. The she had a period of moderate ODD for about a week. She had her teeth cleaned on Feb 15, and started her on fluoride tablets. Starting the 16th, she started a throat clearing tic. It is pretty frequent, at least once every two minutes, usually more than that though. He said he nasal passage looked a little infected so to give her saline and it may stop. We are also doing another steriod burst to see if anything changes. Her and her brother were also sick in mid Feb. Her brother had a fever for 2 days and ear infection. Kayleigh had a fever for two days then they both got coughs.

 

And I also had brough her 2 1/2 year old brother. Maybe I'm just super paraniod and notice every little thing, but I was suspecting something could be up with him. It also seems that many parents have multiple PANDAS children. Around the initial onset of DD's symptoms her little brother started to cry at night wheich he never did. Also I do notice dilated pupils on him often and he has been sensitive to light for some time. Mostly in the car when the sun hits, but then again, that's annoying for anyone. I also nitive that sometimes he opens his mouth wide, and that could be a tic.

 

Dr. B didn't run any labs on him because of his age, but suggested him for a 30 day rx of Augmentin for mild PANS... I'm not so sure. I feel like his symptoms do not necessarily have to be PANS....

 

Ugh, I'm just confused and frusterated.

[KaraM]

HI Colleen,

 

I can totally understand your confusion, because I feel the same way especially given some recent results we got on my son. But it's these results that actually make me think that LYme may truly be one of the issues for your dd even though the results aren't that clear.

 

Basically, a year ago, we did IGeneX on my son. Like your dd, he was IgM negative. He was IgG IND ( a couple of +, but not two or more on any of the specific bands). At the time of that draw, he had been on abx for about two months.

Six months later, we tested again. all bands were negative, except IND on 41. He had been on antiobiotcs continuously until about 1month before this.

In Dec and Jan, he started acting PANDASy, so we tested again. He is IgG positive by IgeneX standards. + on 30, **34 and +++ **41/ He was IND on **31, **39 and **89-93

 

This all has made me wonder about the whole Lyme cyst theory. Maye the antibiotics he was on pushed the Lyme into Cyst form, so the body did not recognize it and produce antibodies. Once the antibiotics were no longer a threat, the Lyme came out of cyst form and the body recognized it and started producing antibodies.

 

Given this I have to ask if your daughter was on antibiotics at the time of the LYme testing (or shortly before it)?

 

I do think you are wise to go to the LLMD even if Dr. B. did not refer you to one.

 

Kara

[1tiredmama]

I understand your confusion as it probably is too early to tell. It may be nothing, two year olds are so unpredictable and sometimes quirky anyway.

 

Having one very sick child rocks your world. The blissful future that was once a given is suddenly called into question. Then, we start to worry about genetics and the health and well-being of our other children. I think that is normal, and as painful as it is, maybe a good thing. The other children will get help sooner than the first child because we know what to look for.

 

I remember looking at my third child raging at the age of two (my oldest had bipolar disorder,) and asking my husband, "Could she have it too? What are the chances?" Then, quickly saying, "No, she's just two." I watched, but didn't let myself worry about it. Unfortunately, our dd was definitely depressed by three and a half, so I'm not here to paint you a rosy picture.

 

My point is that she could have been a typical two year old. In the end, she wasn't, but she was dx'd and treated early because I knew what to look for and we already had a doctor in place. Try not to worry about tomorrow. Follow Dr. B.'s advice and breathe. If your ds has PANS, you caught it early.

[colleendonny]

Hi Kara- She was on Augmentin when we tested for IgeneX. At the time she had been on Augmentin for 5 weeks and Azithtromycin for a few days. I wonder if that did make a difference in the lab results. Interesting what you said about the Lyme cyst theory. I have never heard of that. Back in December/ January for your son, was he on abx when you retested through IgeneX?

And, when you test through IgeneX for repeat tests, do you usually just check for the Lyme or co-infections as well? I have heard the regular tests that Dr. B run can usually detect co-infections just as well as IgeneX, but for Lyme it is the best to test for it through IgeneX.

 

1tiredmama- Thanks for sharing your experience. Having a sick child definitely rocks anyones world! You know, I feel like everyone around me, even my husband at times, thinks I am crazy. I just dissect every little behavior and research too much on the internet. But hey, if I didn't, then who knows what would happen, you know? Maybe I will just try the Augmentin on him for the 30 days. We will see if I notice any difference in any of his behaviors. I already find myself dissecting my 8 month old as well. Ah, PANDAS sucks

[beeskneesmommy]

We started seeing Dr. B at the end of July 2011 after many months of treatment and desiring more aggressive abx. We went thru the whole Igenex testing also. We did not do steroids, but started on the combo of augmentin and azith. Igenex returned with borderline Lyme and Bart. We knew already that we had classic Strep:PANDAS and "old" mycoplasma on board (from walking pneumonia 10/2010). Aug/Azith are an appropriate treatment for all of the above, so we kept at it.

 

Our son (now 5) has continued to progress extremely well in this treatment option, functioning within or above all "typical" limits for his age. I believe that that this combo of abx has been the reason, as he was a very, very sick child with plenty of acuity on and off for 2 years prior to the start of this abx combo. During those 2 years he was on other abx, but not Azith on an ongoing basis. I never "bought" the Lyme+ results beacuse they were so borderline and Bart may cause false + for Lyme.

 

I can only offer our experience. I will say that through this saga I have learned to distrust most doctors and I have learned to trust Dr. B's judgement. However, he knows me, I make sure of it, we talk every 4 weeks at the very least and I make sure to get my questions answered. I suggest that you write specific questions down, make an appt. for a teleconference and pay out of pocket. Warm wishes to you and your daughter.

[bulldog24]

steroids are the problem in my estimation. I bet they surpressed the immune response to Lyme therefore she did not get clear cut test pos

 

in my experience, you do not get ehrlichia without Lyme. that is not likely.

 

pred surpresses immuns system and usually contraindicated in lyme.

[bulldog24]

the tests are looking for immune response. If you supress the immune system the response is not going to be as strong therefore getting the weak pos lyme test.

 

band 39 is specific to only lyme. no other germ causes 39 to be ind of pos.

[bulldog24]

I have never heard of bart making lyme test false positive? I personally have both and bart making lyme wb pos makes no sense. 2 different germs, If you have info on this I wouldnt mind reading about it

[KaraM]

My son was on antibiotics for two weeks in December for Myco P, but other than that, he had not been on them since June 2011.

 

Both Dr. B and Dr. J. tested for co-infections as well. Dr. used IgeneX for Lyme but Quest for the others. When Dr. B did it in March 2011, he used IgeneX for all. I think Dr. J uses the others because they are more often covered by insurance.

 

I didn't even think about the steroids supressing the response...that makes sense to me, too.

 

If you suspect Lyme at all, maybe you could ask Dr. B if it would make sense to put her on antibiotics that would treat both Lyme and PANDAS. My dd could not take Augmentin, because she is allergic. When she was diagnosed with PANDAS, he put her on Zithromax. When the Bartonella came back and the Lyme was questionable, he added Bactrim to the Zithromax, saying the combo would treat both Bartonella and Lyme (in addition to the PANDAS). This combo was confirmed by an LLMD we saw up here in MA and by Dr. J. She is still on it today (it's been almost a year to the day). She seems to be in a pretty good place at the moment.

 

Just some food for thought.

 

Kara

[Orion]

The Ganglioslide GM1, Asialo-GM1 is an autoimmune marker, similar to the anti-lysoganglioside test that Dr. Cunningham's lab runs. So if this is abnormal, it can indicate basal ganglia autoimmune issues (i.e PANS/PANDAS).

 

The B12 could be high if your child is supplementing it, or if it is an ingredient in a multi-vitamin.

 

edited to add:

The High C3D immune complex result could also be why more bands weren't positive on the Lyme test. The antibodies are busy surrounding the germs and aren't free and available to be detected by the test.

Edited March 2, 2012 by Orion