How are we? Thanks for asking... the answer is, It Depends On The Moment. I find the anxiety part of this to be harder than the eating part. The eating part I understand what to do with, even if I don't know "why" it has been so hard for her to intuitively eat, her entire life. The anxiety part is much harder because I don't know what it is (they are looking at Conversion Disorder; Factitious Disorder; GAD; Panic Disorder) and I don't know what to do about it and I don't know if it is part and parcel of the eating or if it is coincidental to the eating.
If I just look at eating, we are doing well. She basically skipped her normal routine from April 21 forward, and for much of March her attendance was way way down due to illnesses. That means she missed out on monitored morning and afternoon snacks at the nurse's office for two months or so, which totally 500ish calories per day. She has nonetheless continued to gain during those two months and is currently 93 pounds (42 kg) (32% weight for age) and 62.5 inches (158.75 cm) (58% height for age) for a bmi of 16.7 (20%). Her numbers a year ago (3-4 months into this “re-feeding” effort) were:
59.5 inches (46% height for age)
69.5 pounds (5% weight for age)
13.7 bmi (1%)
So eating-wise she is doing great but it will be dicey to see if she can keep it up over the Summer Break, which starts today … she will be home alone with her twin and the two are supposed to feed themselves. I will still wake up Ed d for a morning shake (450-500 calories) but snacks and lunch will be up to her (I will have food around she likes, and will pre-plate if she desires…). Obviously we will be doing more frequent weight checks and may end up needing to hire someone (that did not work last year) or bring ED d to a parent’s work place (seems a bit harsh to steal her entire summer).
Anxiety/Panic stuff is still declaring itself. Every day, or even half day is different. The stutter is basically gone, but reappeared last night for no apparent reason. The panic is down but not totally gone. The absent stares have not been seen for a week or so. I can’t figure out if the anxiety is:
1. Totally its own thing that needs meds and therapy;
2. Is the result (partially) of a lifetime of too much pressure around meals; too many doctor appointments and way too many invasive and lengthy procedures such that she has developed almost a Munchausen type need for medical attention. I am willing to say some of it seems like that. Other stuff, however, is borne out by objective tests so it is very hard to know what to have medically investigated and when to “ignore it” or otherwise distract her and wait for that symptom to go away because it got no attention.
3. Is it PANDAS (has been on a list of potentials for some time, but I’ve never been brave enough to mention it to her current providers). She fits some of it, especially to the extent she could have gotten PANDAS years ago and it flares with small illnesses. I have not fully researched it but at one point we did a roundtable type discussion with a retired doctor and a psychiatrist my husband and I work with to see if two people who care about our family and have decades of experience would see something if they heard the whole history all at once. The listened, and the retired doctors’ first thought was PANDAS and his second thought was to go to Mayo. Of course, as is her way, she seemed to right the ship and we were “fine” for a few months so we just carried on. Now we are not fine again, but no closer to what is the root of some of the issues.
As to medication, I am not hardline anti-medication. BUT I have seen first hand how some can do major damage, very quickly. The antibiotic Tina mentioned, Fluoroquinolones, caused a severe adverse effect in me in about 2013 …. I still have peripheral neuropathy in my legs from it. It hit me with sky-high anxiety; wildly elevated blood pressure and pulse in the middle of the night; burning sensation in joints; worst headache of my life; leg muscle fasciculations you could see if you looked at my legs. Of course, the prescribing dr said none of that was from the drug. A few years later, the FDA added a Black Box warning on that drug family with exactly the warnings to central, peripheral, and autonomic nervous systems I described. It was very real and luckily mine abated within about 5 weeks to where I have very mild symptoms remaining.
So I do not jump into meds lightly. But I do take a statin (even though I was allergic to the first two I tried). I do take antibiotics when needed but I am very careful about which ones. I give my kids antibiotics and laxatives and other meds when it seems like it is worth the risk.
I do wish I had not given the Cefdinir, but only because I had never heard of it and I knew she had success with Augmentin in the past … but I chickened out to second guess, and now I will forever wonder if that drug, which seems to be temporally related to this spike in anxiety and panic, is in some way related or if it is coincidence. Or if the illness requiring the antibiotic spiked a PANDAS flare. Or if the illness requiring the antibiotic resulted in negative energy balance and that caused the spike and time and food are the right medicines. Or does she need a psych med to get to where she can function better and go to school, make and keep friends, not panic if a tornado warning goes off, etc.
Psych meds scare me for sure. Mostly the idea of how they are so hard to come off. Also how the inserts say to watch for things and if you see certain things, to contact your healthcare provider immediately … but those things I am to watch for are so many of the things we already see. Her anxiety can go from zero to 100 now, with nothing overtly obvious causing it … so if I give the drug and it goes to 100, do I tell someone?
We did start Prozac Thursday May 16. Gave five doses total and then quit … because by Saturday, she was “normal.” Obviously the drug could not be credited for that. …. was it school not a threat because a weekend; was it placebo to her; was it she just learned how to ride a bike and was proud and thrilled to be able to get some independence to go places she could otherwise not go; was it more time had passed from the illnesses and nutrition had been good; was it because much of the problems were factitious to begin with and she was not acting them out for some reason now …. I don’t know, but since she is so up and down, and since school is now out for three months, I do not see how starting Prozac now will give us any info …
So we paused it to see how she does now for the beginning of summer and will reassess it in the next month so if we are not seeing therapy working, we can potentially start the Prozac so it is at therapeutic levels by the time school starts in mid-august.
My reservations go beyond that, however. We finally started this re-feeding effort last March or so because I just could not sit back and wait, like advised by the doctors, to see if puberty was timely and if she’d turn a corner by herself, because her bone density was so low I feared if we did not act now we would forever lose a window to build the bones. Also she needs a surgery that will trench through her jaw and the oral surgeon thought two years of good nutrition would make that less traumatic to the jaw bone and potentially be better than doing the surgery last year. Research seems pretty clear that SSRI’s reduce bone density. Also, she had the genetic testing done, and SSRI’s came back as not being the best option for her (might not act in her as expected, so might need more, might need less, might have adverse effects). Those two considerations together, coupled with the variables discussed above about how fluid she is and how it is hard to know when things are changing or not, made me pause the Prozac.
So ….. we are in watch and wait mode on anxiety, with weekly therapy sessions. We are cautiously optimistic that she can eat enough on her own to maintain and gain during the Summer. And we are terrified that 8th Grade will pick up where 7th Grade left off, with school refusal, homework refusal, and intentional social isolation.
I need to decide if we want to get input from new providers, or if that just muddies the field too much. Potential providers could be:
*. pediatric neurologist (she developed tics last June for the first time, which came within a week of 7th Grade vaccinations and were pretty severe for a short time and have all-but disappeared; coupled with this new stuff, I am not sure if that is an appropriate provider-type to visit… when we went to one (since retired I think) last June for the brand new tics, he asked what meds she was on and I said laxatives and nothing else but her then-pediatrician wanted SSRI’s and the neurologist quickly shook his head “no” and said I’m glad you did not do that. That was when we were pending the genetic testing, I think, and given the tic situation we did not pursue that conversation more, but it sticks in my head when I think of starting an SSRI now).
* Different Adolescent Psychiatrist who might look at stuff other than “anxiety = SSRI” which is what the current provider seemed to do … I have no reason to think he considered stuff like bone density or her history of odd complaints that have been shown incorrect (some eye related things that seem to have likely been played up by her).
Sorry for the book …. I sometimes use this place like a journal for myself to be able to look back on ...