Non- pandas DD has pandas

[Megs_Mom]

If you combine your kids, you get mine - or at least at the worst of things. But I think that there is something about when kids get older- they are smarter and able to hide more. The term that was used for Meg that helped me get on the right path was Agoraphobia. Suddenly afraid of places she had been before - afraid to be away from me for fear of throw up. Fear of going to restaurants, for fear of throw-up. Fear of eating foods for fear of throw-up. Fear of sugar for fear of throw-up. The compulsion was "avoidance", so it was sort of easy to miss. It was all OCD, but sort of the same as Agoraphobia in result. Meg also had extreme issues with ballet - I often handed her off screaming to the owner, who was great about it. But the issue there ended up being that they have very specific hand and foot positions, many of which Meg could not do "for fear of throwing-up". Her hand positions often "felt wrong". Megan also had stomach aches - we did an endoscope & found ulcers. I would swear they were caused by PANDAS, but no proof. I might also suggest a blood test for Celiac - also autoimmune, they don't know what turns it on in older kids. I see that you have tried Prevacid - we did find this to help after about a week, combined with antibiotics & behavior therapy, as Meg paniced so badly when her stomach did hurt or if she thought it did, that this became a conditioned response to any feeling in her stomach (hunger, fullness, needing to poop - those were the worst). She had to carry a card around and look at it before she could scream "my stomach hurts" and run to bathroom as if she were about to erupt. The card said "am I hungry? Did I just eat & I am full? Do I need to use the restroom?" It was if she were a stroke victim, but the only part of her brain that was damaged was this part. After about 2 weeks, we moved into a calm, and Meg does not ever want to quit the Previcid. The Prevacid did take a while to really work, I think because she had so many ulcers & they were pretty bad.

 

No, it's not normal , I am sorry to say. Sounds like you need a steroid burst. I am so very sorry - I know many here have 2 children with this - I cannot imagine how to deal with that challenge.

 

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

[matis_mom]

mati's mom- has anything worked for him? how does one test for adrenal fatigue (don't tell me - more blood- this causes hysteria, fainting and vomiting in her).

Dcmom, you are in luck! It's a saliva test The child needs to spit into a little tube at four different times during the day, and they measure cortisol levels in the spit. Pretty harmless!

[matis_mom]

mati's mom- has anything worked for him? how does one test for adrenal fatigue (don't tell me - more blood- this causes hysteria, fainting and vomiting in her).

Dcmom, you are in luck! It's a saliva test The child needs to spit into a little tube at four different times during the day, and they measure cortisol levels in the spit. Pretty harmless!

I just realized that I forgot to answer the first part of the question... has anything worked for him?

Since he was first diagnosed in July (he had been going downhill since what he thought was the flu in February, but now I realize there was probably strep as well) Dr. Zackrison put him on antibiotics and a lot of supplements and we had his tonsils out in August. Right away we saw an improvement in the energy level, but still he needs to sleep more than the other kids. If you have adrenal fatigue, besides some specific supplements, you will need extra sleep to give the adrenal glands a chance to recover. In September (at my request, since it did not seem the Amox was making a huge difference) they switched him from Amoxicillin to Cefuroxime + Vancomycin, and they also had to add Plaquenil for the joint swelling (they are not sure what to call it, RF of RA, but he definitely has joint issues). Anxiety-wise he is also better, now he is able to go outside, pet the dog, handle shoes (yes, he had shoe-phobia since shoes pick up stuff from the ground!), use doorknobs. We still have the hand-washing issues, the reasurrance questions (particularly at night), and spending sooooo much time in the bathroom (it's like he always trying to make sure he gets it all out). He also has wetting issues, so that feeds into the changing/washing cycle.

So anyway, he does seem better overall, but not 100%, and we have so many different things going it's hard to tell what's working. Right now we are in the middle of a 30 day steroid burst (we are seeing Dr. Latimer), and we are ALL on antibiotics (he had a couple of flare-ups that there totally strep related - someone else in the family, he does not test + on the throat)

 

If you are in the DC area, you might want to take her to Dr. Zackrison. She is an MD, but also does a lot of alternative stuff. She will run tons of tests and get to the bottom of if, although if your dd is afraid of needles that will be tough. My son was also a basket-case any time we even mentioned the possibility of blood-work, but he just had to get over it. They did the draw at Dr. Zs office and the nurses where great. They were able to get 17 tubes (yes, seventeen!) in one sitting!

 

We are taking a break from Dr. Z right now because we felt really overwhelmed with all the different things she was coming up with, and it was hard to keep up with the cost of all the supplements and homeopathic things. We also felt she was not addressing the neurological/autoimmune part agressively enough, so that's why we are seeing Dr. Latimer to see if we get more results on that front. We are still doing many of the supplements, though, but I can't really tell if they are what is making a difference...

[dcmom]

mati's mom- are you in the DC area? We are getting together a mini support group here, planning on meeting in January...

Eileen