Frustrated- DD not eating continued

[BeeRae22]

Some of you may recall my posts about my daughter. We have been dealing with this since October. Seeing specialist since January. Just went to respected OCD clinic for eval and started CBT this morning. Skeptical, but hopeful at the same time.

 

I am so frustrated with everything. Azithromiacin for 100+ days now, Augmentin 33 days. Day 17 Zith saw "improvement" and "response", had a good run for a few weeks, and backpedaled again....behaviors worse than ever. Augmentin 12 days, saw "improvement" and response, good run for 2 weeks or so, and ODD behaviors, skin picking, etc. picking back up again but not spinning out of control like before.

 

Are the antibiotics working? Is it a fluke? Why such severe symptoms, improvement, worse symptoms, improvement again, and now somewhere in between?? Eating piece of the puzzle remains throughout, although we did have a bit of improvement for a few weeks there.

 

We were actually at a well respected OCD clinic today,to begin CBT and I called her specialist to set if we should change antibiotics again. I am so frustrated with this whole thing.... I feel like we're loading up on antibiotics and not sure if I can attribute any changes in behavior to "medication responses" or not. I am really trying to avoid any psych drugs if possible but will consider them if the CBT doesn't work. My daughter is only 8 and never had any of these issues before! It was incredibly frustrating to have the OCD clinicians more or less chalk up her behaviors as an "anxiety disorder". Well, yes.. she has anxiety. But she also doesn't eat, rages, picks her skin, has ODD behaviors, flips out over (getting my hair cut? simple comments? forgetting her jacket?) hates school now when she used to love it, the list goes on and on.... this isn't just "anxiety". no way. She has elevated Myco-P titers, but we haven't found anything else. Yet. I'm not convinced that she doesn't have Lyme. We just haven't found it yet.

 

I don't know what to do anymore. Try quitting the antibiotics? Change them? Keep going? I'm afraid of any decision! We switched her to a high calorie Boost drink, and have actually gotten her weight back up to where it was (she was down 4+ pounds) so we are on track with that for now- but she still doesn't eat. Anything. and the behaviors continue. I can't believe this has been going on for 6 months now. This "new normal" sucks. I'm tired of sugar coating it.... it sucks.

[putting together the piece]

I sent you a pm.

[BeeRae22]

Did you mean another pm? I wrote this after I got your message I just realized that maybe you meant the first one!

[searching_for_help]

Just a thought. You might want to check for viral infections - EBV, HHV6, etc. (Maybe other moms will chime in on what to test for...)

 

My dd just started Valacyclovir a few days ago and she is really herxing from it. Flu-like symptoms, migraines, strange body sensations (burning nose, fingers- then the feeling that cold drops of water are falling on them!) She's even running a low grade temp, and her temp is always very low.

 

Doc only gave her the script because I requested out of desperation. The only viruses she has been tested for are EBV and HHV6. She did not have a current (IGM) infection for either, but that antiviral is hitting something. She's also been on Doxy for mycoP and Nystatin for yeast for several weeks, but hadn't seen any reaction to that.

 

You commented on the attitude of the OCD clinician. Unless someone has a PANS/PANDAS child, I don't think they can FATHOM what anxiety is. I don't think most therapists have a clue, because our kids can hold it together better around others than they do at home. I honestly had no clue (before having a PANDAS/anorexic kid) that it was possible for anyone to feel this overwhelmed and hopeless. And I'm REALLY sick of people trying to convince her and me that she can just talk herself out of it.

[putting together the piece]

I did try and send a second pm. Please check.

[3bmom]

I agree with searching for help. Valacyclovir would of kept us out of the hospital. We had immediate results but not the die off symptoms her child is having. Just some fogginess. We didn't have IGM but our IGE was over 16X normal. Our Dr was trained anything over 4x higher treat as active. In 6 months the titers were normal and behavior stable.

[surfermom]

I fought it tooth and nail but after six months of begging, pleading, bribing, following all the rules of dealing with OCD aversions and then breaking them...sertraline lorazepam….I finally agreed to having a feeding tube inserted when DD 16 finally got to the point that she wouldn't even swallow saliva. It felt like I was giving up in a way, that I had lost a battle but I wish we had gone that direction sooner. We were able to get her weight up again and mealtime stopped being such a stressful experience for everyone. We came close to having it removed once, but her OCD kicked in after eight months of fairly cooperative eating so she had to go back to mostly feeding her via her tube. The biggest downside has been her inability to surf and swim but I am grateful that I can put my focus on dealing with her other issues instead of the dangers of anorexia complications.

[Hopeny]

I think you are seeing dr m in regards to the rages have you discussed bartonella? Trying rifampin/zith?

[Rachel]

First off I want to let you know, I don't have too much experience with this but I know this can be a scary experience. My son is a little over weight and I can let this go for a few days but I have set limits in this area with him. My son does have problems from time to time with eating. He tells me that he does not feel hungry. So I tell him that he has to eat so he can at least have the energy level to sit up and at least transfer in and out of his wheel chair. He also knows if he gets too weak, I will have to take him to the hospital. He does not like hospitals, so this is motivation to eat something or be stuck in the hospital. I notice that this is more of a problem when he is on daily antibiotics. He has been switched to a shot and I am not hearing this comment. So, I'm beginning to wonder if the daily antibiotics were causing this problem. He has been on antibiotics since last December and was just recently switched to a penicillan shot every three weeks. I would be checking with your doctor to see if the antibiotics are causing the problem.

[BeeRae22]

Waiting for a response from Dr. M re: testing for viral infections, trying Doxy or something else.... Thanks for the responses so far. Rachael, we are far removed from your experience, my daughter was tiny to start with, and the restricted eating is what began this whole thing, it wasn't a result of it... Her fear of choking/swallowing is far beyond threats of hospital and feeding tube, we've had that conversation many, many times and it doesn't do any good. She is completely living on Boost, Popsicles and ice cream. She wants to eat, and get better, and stay out of the hospital, but is terrified of food.

 

I can't help but to think that there is a med we aren't trying that would help rid her of whatever is causing this and make her better.... I want to try something else. I think 100+ days of Zith is more than enough to determine that it's not working.... But maybe I'm wrong. Maybe she'd be a complete mess, worse than we've experienced without it??? At right around 2 weeks she seemed to "respond to" the Zith, and again around 2 weeks of Augmentin a "positive response". But I question if it was actually the abx, or just a cycle in this infection (or whatever it is!) that would've improved anyway? I don't know.... She also takes Drainage Tone drops, and now it's being recommended that she take Clak drops... Not sure how they differ (waiting for an answer on that too) and wondering if any drops are going to do any good anyway?? My husband wants to take her off of all abx. I'm afraid to do that, at least right now. Maybe in June, when school's almost over. She's currently fine during school which I'm thankful for, not really willing to risk changing that at the moment... Things are hard enough! Back to CBT tomorrow. Still skeptical and hopeful about that. It would be great for her to learn coping skills for the symptoms, but what I really want is for the symptoms to go away. She shouldn't have to just "cope" ! I think that after 6 months the eating piece of this will need to be dealt with regardless of medical treatment, anyone that's restricted themselves to eating only ice cream and occasionally a few bites of grilled cheese soaked in soup broth for months is going to need to learn how to eat again regardless. But the other behaviors?? ODD behaviors, skin picking (has gotten worse again lately), raging, struggling with homework (never a problem before) short term memory loss, attention span, unusual fears, OCD symptoms? Surely, something can be done to treat the infection that's causing all of this? I hope??? I still can't believe this has been going on for 6 months. I never, ever thought we'd be here... Still. It's frustrating and depressing.

[searching_for_help]

So very sorry. I know your fears so very well. I'm hoping your doc will be willing to try some things - after years and years we've finally found someone willing to just TRY something new!

 

Please don't forget to use probiotics, and I can't remember all your last posts, but if abx don't work, you might want to have doc test her gut for yeast overgrowth or clostridia. They can cause similar behavioral issues. So many things can set our kids off. Don't assume the antibiotics screwed up her gut - it might have gotten screwed up before by other OTC meds or the foods that we eat now, that are lacking in the good gut bugs. So make sure you either do a stool sample or OATS test. (If you haven't already.) I also found that Helicobacter Pylori can cause neuropsych problems (your doc will probably NOT know this, but I'll be happy to send you some case study links), and our dd tested positive for past infection on that as well. It can cause nutrient deficiencies, thus affecting neurotransmitters, B12, etc.

 

That being said, don't forget to test rest of family. I was shocked to recently learn my son has a CURRENT mycoP infection, with no symptoms AT ALL, and my husband just got results back yesterday and his ASO was POSITIVE. NO SYMPTOMS AT ALL. Ugh... Don't know if this has been affecting PANDAS/PANS dd or not...

[JenniferG]

We had severe eating issues with all 3 of mine. When my dd10 was 4-6 years old she was a small eater. She was always very petite. Never realized, thought anything of it. She had a T&A in 1st grade and gained 11lbs in 1 year. All eating issues were resolved. My ds6 (twin boys) are way smaller. And have severe eating issues. We saw Dietician/Nutritionist, used weight gainers etc. they just had NO appetite. Got their T&A 2 weeks ago.....didn't lose an ounce.....had an appetite from the minute they could eat Popsicles! I kid you not. They are back to school this week and one of them said to me...mommy, you need to pack me more food. I was starving today. Our lunch boxes used to come home daily still plump full. It really is amazing. An increased appetite is actually a side effect of a T&A. Our ENT said that obesity is a problem with kids that have it, they aren't sure of the connection.

[dcmom]

Sorry your daughter is still suffering. For my girls, pandas is clearly an autoimmune disorder. We typically do not see a resolution without immune modulating treatment (ie steroids, plasma pheresis). The sooner we treat, the less symptoms to recover from, the less learned behaviors.

 

I would strongly suggest an aggressive pandas doc, who is willing to treat with these methods. OCD is greedy, what happens if your daughter refuses boost? You need a doc that could immediately hospitalize her- but who also understands pandas. I will PM you a suggestion.

[BeeRae22]

What is T&A?

[JDuffner]

Tonsils and adenoids