Frustrated- DD not eating continued

[JDuffner]

I'm assuming ?

[BeeRae22]

Jenniferg, my daughter had a full GI work up, including an endoscopy and nothing was found that indicated that she had any issues whatsoever in that dept, so I'm pretty sure that's not it. She has an appetitie, it's not that she doesn't WANT to eat, or isn't "hungry", she is terrified to eat, and the texture of food disgusts her. But I do appreciate all input anyway, so thank you

 

Heard back from specialist's office yesterday and am still very frustrated. He wants to keep her on the Zith, and Augmentin, and Drainagetone, and now add Clak? Drops? I haven't had a chance to research these yet, but I am frustrated with keeping going with the meds we're already trying. Dd hasn't eaten a regular meal in 5 months. This isn't working...... I wanted to try one of the tetracyclines (minocycline, or Doxy) and got the response from the assistant that "this is the course of treatment that he thinks is best for her right now".... I really like him, but I don't agree. 100+ days of Zith and 30+ days of Augmentin is enough Of a trial IMO. Next! We don't have time to lose. I'm getting ready to seek out another Pandas doc and pay another consultation fee, but I feel like I shouldn't have to. Already paid almost $1,000 for evaluation, and additional visits. Can't afford to kee throwing money around! Need results....

Edited May 1, 2014 by beerae22

[BeeRae22]

I had also asked about checking for other viruses as suggested above, and was told by assistant that "she was already tested for everything".... And when she realized that I wasn't accepting/pleased with the responses I was getting re: meds and testing, she suggested that maybe I should make another appt. I was just there 2 1/2 weeks ago for $250. I don't need another appt to know that that my daughter is still having behaviors, and still isn't eating. I need to try something else is what I need. I don't know about these Clak drops, but I don't feel like another herbal detox remedy, in addition to the one we're already trying,.is going to be enough to make any changes. While I do think that SOME of her eating behaviors may be "learned" at this point, I'm nOT convinced that she couldn't improved if treated with the correct antibiotic that would hit on the infection and help her symptoms, especially since it's not as if the eating piece is the only issue.

 

Maybe I don't know anything..l.l maybe the Zith and Augmentin are keeping her on an even keel and she would be a complete mess without them. But I know that they're not enough. And while I think the CBT is going to help, I don't think that's going to be enough either. And I'm not ready for psych meds.... I think she needs medical treatment, not psych meds.

[EAMom]

I haven't read all the responses closely...has she had the Cunningham test? That would give you hard evidence that her eating issues are autoimmune (and not just "learned" or whatever). Our rheumy said it is usually (often?) covered by insurance.

 

I also worry about underlying tick borne diseases, esp. since you are in CT.

 

Where is she on the growth charts for height and weight?

 

My dd was hospitalized for anorexia (acute food refusal) in 2008 when she was 7.5 years (2nd grade). Her weight went from 25th percentile (her norm growing up) to completely off the charts. She went from 49 to 43 pounds in 2 weeks. It was very scary and she had to be hospitalized for acute food refusal. That was when we finally learned of PANDAS and demanded a throat culture (positive). Her sister (a carrier) was also positive on the rapid.

 

She now doing well (in school, healthy weight) although she has minimal residual OCD (we are repeating the Cunningham test to see if it is still autoimmune). She has had 3 HD IVIG's (last one was almost 2 years ago) and still takes Azithromycin. She's in the 8th grade now.

 

Have you tested family members (throat swab) for strep (clearing strep carrier sister was important to getting PANDAS dd well)? Also check for perianal strep (at the recent CA conference, Swedo mentioned that as a common cause of refractory PANDAS).

 

Also, what doses of Azith and Augmentin is she getting (how many mg and how many times a day?). Sometimes these docs don't give a high enough dose. My dd took 250mg/day of Azith when she was 43 pounds...she started to eat after 2 weeks. After 6 weeks her other symptoms were much improved (later regressed with viral infections so we did HD IVIG).

 

If you do try a psych med (like prozac or zoloft) this should be in addition to, not instead of, medical therapy. Swedo recommends 1/10 of the usual dose to start as these kids are very sensitive to activation. (My dd was on 10mg a day of prozac for a long time, iit did help...10mg/day should be the max prozac dose for a pandas kid). SSRI's can be antiinflammatory http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/ but you have to be super careful!! More is NOT better, and I would be very leary of doing more than 1 psych drug at a time. Psych drugs can also be tricky since their side effects (activation) can look like PANDAS symptoms!

Edited May 3, 2014 by eamom

[BeeRae22]

Your daughter started eating just for taking the Zith? My dd is on 200mg/day Zith and 400/day Augmentin. The eating piece did improve for awhile after 2 weeks of Zith, but then she slid backwards again....

 

I would love to do the Cunningham panel, but have Medicaid and can't really afford $1,000 for a test that could be inconclusive

 

We haven't tested any family members yet.

 

Dd started at 51/52 pounds, dropped to 47 or so, and because of regulated intake of high calorie Boost, she actually is back up now to 51pounds! But she is completely living on the Boost-- she doesn't eat anything at all. I am terrified that she will decide one day to not drink the Boost. She is (rightfully) sick of it, and sometimes refuses now. This isn't a solution, but it's keeping her weight on, and keeping her it of the hospital, which, for someone in her current mental state could be devastating.

 

We need help. I wish I knew where to turn next.

[PowPow]

Have you considered Duke hospital or contacting the Autoimmume Encephalitis alliance for help?

Does she have other symptoms besides just the anorexia?

[SSS]

Just throwing out something- not advice per say, I can't say what I'd do if not eating had been in our picture-

probably a HD- IVIG

 

But you said high Myco P-

recently, Biaxin full dose antibiotic has been a miracle here.

Typically, Doxy and/ or Biaxin are used for Myco P.

Also, we had an episode/ phase of skin picking,

and buying

PharmaNac

(a good tasting fizzy drink- NAC, highly absorbable)

actually stopped the skin picking.

Believed to clear out excess glutamate.

[PowPow]

Sss,

How long did you continue the PharmaNac?

That is really interesting. Did the symptoms recur when you stopped it?

Neat way to deliver it, also.

Beerae22,

Do you thinkyou could get her to try something like that? It's not really food maybe she would drink a fizzy drink.

[SSS]

Here is a link to PharmaNac

http://www.pharmanac.com/faq/

 

Also, there is a study with PharmaNac and Stanford University if you google.

 

Don't judge, but I gave it to my dd in 1/2 glass of Sprite/ 7 up (child never, ever gets soda) and she looked forward to it.

I think I gave it 2x a day for the first box, followed by another box 1x a day.

 

It's not cheap (of course) but it literally got rid of skin picking- she was picking her moles and some freckles to bleed :-(

HTH.

[EAMom]

Are you giving the Augmentin 2x daily, so 200 mg twice a day?

 

I would give some Ibuprofen (200mg) with the Azith, we were giving them together, and I wonder if that helped.

 

Are you sure Medicaid won't cover the cost of the panel? You might contact Moleculera and see if they know anything.

 

My dd had to drink Boost when she was hospitalized for anorexia and hated it.

[BeeRae22]

Augmentin 200 2x a day....

 

It says right on the Moleculera site that they don't take Medicaid

 

Interesting about the Pharmanac, I will look into that! But her skin picking isn't my bigger concern. The raging, ODD and most importantly not eating are priority.

 

I want to try doxy, or minocycline and am going to try to push for that when I call tomorrow,... Or at least want an answer why NOT to try those. I think the doc "forgets" that she's not eating, maybe because he's used to treating chronic illness as suggested above, the details of symptoms get "lost" in the shuffle?

 

I am concerned about the long term affects of her living on Boost, especially with taking all of the abx at the same time.

[PowPow]

Would you consider trying to get her seen at Duke's neuroimmunology clinic?

ODD, raging, anorexia

Please consider it.

[mama2alex]

Would you feel comfortable posting a list of what she's been tested for? I think you would get a lot of feedback on what you're missing and might want to request. The "we've tested for everything" response seems like a bit of red flag. It's highly unlikely they've tested for "everything." Has she been tested for Lyme co-infections - Babesia, Bartonella, Erlichia, Anaplasma? Otherwise, I don't have any advice. Just wishing you answers soon!

[BeeRae22]

Dd was tested as follows: comprehensive metabolic panel, myco p, rickettsia, immunoglobulin g subclasses panel, Epstein Barr virus early antigen D AB & VCA antibody, streptozyme screen, brucellosis AB, bartonella species antibodies, ehrlichia chaffeensis, barbesia microti, anaplasma phagocytophilum antibodies, immunoglobulin M, CBC, Lyme western blot, and e DNase strep tests.

 

All were normal range/negative with the exception of Myco P which was IGG >5 and IGM 887

 

Specialist keeps saying that symptoms indicate "reproductive Lyme cycle". ?? I am waiting for a call back re: trying a different antibiotic.

 

Meanwhile, my daughter is sitting here, refusing to go to school because she "is in a bad mood" and when I very calmly talked to her about school, she says it's "too hard for her" and she "doesn't like leaving me all day" and "everything at schoo, bothers her". She also had an "episode" after her dance competition this weekend, in front of friends, which isn't typical for her. (Usually saves it up for home) -- she had ODD behaviors, making "THE FACE", refused to sit with us at lunch, nAsty to friend and friend's mother, etc..... Tis isn't HER at ALL.

 

We're at 6 weeks Augmentin now, on top of the Zith. Time to try something new. CBT at Yale today, which I'm not convinced isn't a complete waste of my time.

 

My 8 year old doesn't eat, and is not at school. We really need some help.

[BeeRae22]

Also.... Duke? As in, California? That unfortunately isn't an option for us at this time.....