BeeRae22

Waiting for Yale to call back. Someone there said that they thought they might be ale to help, but she wanted to check with the director first. I was hoping for a call back yesterday-- didn't get one.

Hi! Just came across a bit of info about Mass General at about 4:30 this morning it's on the call list for Monday am.... Do you know anything about it?

"Feeling helpless, DD still not eating" continued... She is on the brink of hospitalization for G-tube. Considering Rothman In Florida, or Bradley in RI if Yale University here in CT doesn't come through. For those of you that have been to Rothman---or anywhere for that matter--- what happens when you come home? Can a couple of weeks of intense treatment really help long term?? Pros and cons of treatment facilities and/or hospitals? Anyone have any other recommendations? Dd needs help NOW-- she is fading away... And her rage outbursts and aggressive behaviors seem to be returning too. This can't go on any longer.

I am looking for a treatment program for my daughter for her ocd symptoms. Her primary symptom is extreme fear of choking and swallowing, so she refuses to eat. Her health is in danger, she is on the brink of being hospitalized for a feeding tube. I am looking into the Bradley Hospital in Providence RI. Ay input would be greatly appreciated!

I will ask about the zinc deficiency, thanks. I am willing to try just about anything at this point. I make calls every single day, and I can't seem to find a program for her. It just seems crazy to go all the way to Florida for treatment. There is a hospital here In CT with an OCD clinic, but they don't take our insurance. We simply can't afford to pay everything out of pocket, we are already paying for the doctor who is treating her out if pocket- he doesn't take ANY insurance. She won't drink smoothies, or anything like that. I let her have all of the ice cream that she wants, and she does drink the Boost willingly, but with school, etc. it's hard to even get enough of that into her. I am going to get a 504 for her, so she can have Boost available several times throughout the school day. Boost is loaded with sugar though, which isn't good either. Everything she takes in is sugary-- ice cream, boost and juice. I'm sure that's not helping either.

So, the therapist that was going to see her called me yesterday and told me that because of personal reasons, she can't take her on as a patient at this time. I am back to square one. Also yesterday, my daughter had a yearly physical at the peds office. She has fallen two levels on the growth curve-- has lost the pound and a half that I struggled to get back on her. The ped is talking about a feeding tube, which I know in her current mental condition would be devastating for her. I am going to do everything in my power to prevent that from happening. She is seeing Dr. M and has been on Azith for 7 weeks or so. She is also more recently taking the MycoP drops. Her depression, agitation, and most other behaviors have improved significantly, but the eating piece has remained. Dr. M seems to think that continuing the azith is the best course of treatment,, but she is starving in the meantime-- literally. Should I push for a change in meds? If the ocd is medically rooted, is CBT really going to help? I can't even find a therapist locally (yet) and this can't go on for much longer. She is going to end up in the hospital. If the azith has improved her other behaviors, why is this piece of the puzzle so hard to resolve???

and like Pr40 suggested, try talking to his teacher, the school psychologist, and the school nurse and explain the disease and his symptoms. I had several meetings with them, and if you use the "I need your help" approach in explaining things, people tend to be willing to help and sympathize. Play nice until nice doesn't work for you any more..... I say this because "nice" worked for me for quite awhile, but now that it's gone on for a few months, my daughter's school is wanting me to go for the 504 because apparently it's getting to be too much to ask for them to let her sit at a certain table in the cafeteria because of a sensory issue she has, or to drink her protein drink at her desk like the other kids do with their water, because she might spill it on the carpet and they're only allowed to have water.... people in schools don't like "different", unless you're officially labeled as such. Keep that in mind. But like I said, first play nice and ask for help-- it should help initially!! Best wishes!

My 8 yr old daughter had a few weeks where she would refuse to get ready and go to school.... I feel your pain. What's his "reason" for not wanting to go? Start with that. My daughter would lay on the floor, and say she was too tired, etc. It helped a little to make sure that she got to sleep early at night and was well rested in the morning. I tried getting her up earlier so she would have extra time at home in the morning, and also tried waking her up at the last minute, so that she wouldn't have any time to think about it and decide she didn't want to go..... both approaches had their pros and cons! The biggest motivator for her though, would be to explain that if she didn't get up and get going, that she was going to sit in her room all day with no tv, electronics, etc. When she didn't get ready one morning, she stayed in her room for almost 2 hours before she decided to get going to school. She was late a LOT for awhile, but as long as they get there at some point it doesn't count as an absence. Try giving him a choice-- get going, or do nothing all day. If he's complaining that he's tired, well, maybe he is. I know my daughter was very lathargic for awhile, especially at the peak of the flare. Fortunately for us, after a few weeks of abx, most of those kind of episodes went away for our daughter. She still has severe ocd issues surrounding eating which we are battling every hour of every day, but she is happy and herself again, and for that I am grateful.

I have posted a number of times in the past 5 months. My PANS daughter is still not eating. Her severe ocd symptoms cause an extreme fear of choking and swallowing. She drinks only Boost for breakfast and lunch. At dinner, I make her sit at the table. She becomes extremely aggitated and angry most times-- last night she was hitting me, scratching me, angry face, slamming her fork, etc. It takes me about an hour to get her to eat 8-12 or so bites of food, and she drinks another Boost. The only food item she will eat willingly is chocolate ice cream. I finally found a LCSW that treats children with ocd that is about 35 minutes away to treat her with CBT and exposure therapy. It took me 1 week to get a call back from her initially, and then we waited another week and a half for the appointment. She told me that she had been ill. Last Thursday, 3 hours before the appointment, she had an "assistant" call to cancel, saying that the therapist was ill, it would be several weeks before she could see my daughter, and she didn't know when that would be. She gave me a name -- Joe Brown, as a referral, but didn't even have the phone number, and he's further away. I am so incredibly sad, and frustrated. She still hasn't even replied to my email or called. I had really built up this appointment to my daughter too-- that she was going to get the help that she so desperately wants and needs. I cry almost every day. I lay awake worrying about her almost every night. Why is it so hard to get help for my beautiful 8 year old little girl? Do I move on and try to find someone else, or wait for this woman to call me back? I keep taking my dd to another doctor, another therapist, another appointment. She is getting frustrated that nothing is helping her. I had such confidence and hope for this therapist after the 2 1/2 hour initial conversation I had with her. She was the closest I could find, takes our insurance and really seemed to know what she was talking about. I don't know what to do. I can't tell my daughter one more time that "this person is going to help", only to be let down again. Should I just wait a few more weeks?

I've posted several times lately regarding my 8 year old daughter. She is being treated for Pans/Pandas with antibiotics and has responded wonderfully, with the exception of her ocd/eating issue- We just heard back from the specialist's office and finally, we have something to go on--- to date, all of her bloodwork had come back normal until now. Elevated Mycoplasma pneumoniae IGG 5+ IGM 887 Anyone have knowledge or information about MycoP? I've seen it mentioned here and there on this board and in some other literature about pandas & pans, but now that I'm looking for it specifically, I can't seem to find much. I have a lot of questions, but the biggest question that comes to mind is this-- DD has been on Azithromiacin since January 14th. This bloodwork was taken on Febuary 22 & 25th. Wouldn't it be reasonable to assume that if Azith was going to knock this out, that it would've taken care of it by now?? Are the IGG and IGM levels considered to be extremely high, considering 1+ month post abx? I would really appreciate any Myco P input or experience anyone might have to offer!!! Thanks!

He is an "integrative" doctor of osteopathy! That's part of why I'm so disappointed with this response..... If I wanted that kind of answer, I would've gone back to the regular pediatrician, which the insurance covers!

This may end up being just a rant and rave session, so I apologize ahead of time! I just got off the phone with the specialist's office... .they called me back in regard to my daughter. She has been on abx for 7 weeks now- we had a follow up appt at 4 weeks at which point she was making progress with all symptoms with the exception of the eating piece. (see DD still not eating post below) -- so anyway, I was calling because I wanted an undate on what to do about her not eating.... I don't know what to do, and need a direction to go in. This doctor doesn't take insurance and is incredibly expensive, and the answer I just got from some assistant was to "consult with the nutritional team I had been working with before because the doctor isn't familiar with treatment of eating issues like this" -- well, the eating piece of this puzzle is, and was, the most concerning piece-- her other symptoms were terrible, but eating is crucial to her health (obviously) and we aren't making any progress with it..... the nutritional team couldn't do squat, and I've told this doctor that before. I'm very disappointed with this response. I would expect a DO to concern himself will ALL aspects of her treatment, not just the ones that have responded to the abx he's prescribed. Maybe I am asking too much of his medical treatment, etc. I know there isn't going to be one single medical/perscription/cure for this, but I was hoping for a better course of treatment to be suggested other than "go back to the team you were talking to before" !!! Wouldn't it make sense that if all of her other symptoms have improved with meds that there would be a medical course of treatment that would help the eating piece?? Or would you assume that that entire eating piece of it is now learned/habit ? I'm trying to make an appt with Dr B. -- does anyone think he'd have a better suggestion or course of treatment than that??? I am trying to find a child ocd therapist in CT. I have a call into one in my area and am waiting to hear back. I'm really at my wit's end with all of this!

well, that's just it too..... Boost is crap. Loaded with sugar, which I would love to eliminate as well.... but her primary diet is Boost and chocolate ice cream, with chocolate syrup. Those are the only food items she will take willingly.... no smoothies, other drinks (except cran grape juice and some other juices). and no other foods. at all. I get all kinds of suggestions, but there is no logic to what she's afraid of and why. The texture bothers her, but she won't accept that noodles, pasta, etc. are soft enough, and has never liked yogurt or mashed potatoes or anything like that to begin with.

Hello, Some of you may remember my posts from awhile back regarding my daughter. Her onset of Pandas/Pans started in October. She is now being treated with abx by Dr. M and we have seen a huge improvement with all of her symptoms except for the eating piece. She is 8 years old. She is not restricting calories, is not afraid of weight gain, and does not have a distorted body image. She is afraid to eat-- fear of choking and swallowing. At one point, she went to a completely liquid diet, but is now at a point that with much whining, gagging, complaining, running away from the table, and lots and lots of time, I can (sometimes) get her to eat several bites of certain foods. I am incredibly frustrated and feel completely alone dealing with this. I have not been able to connect with a single person, professional or otherwise, that has dealt with this particular issue. I was contacted by someone on this forum who's daughter had eating issues, but they were dealing with the "typical anorexia" symptoms which is very different from what we're dealing with. We were taking her to OT for awhile, but I didn't feel like we were getting any further with that than we were here at home. I've sought out psychiatrists and therapists that have dealt with this, with no luck. I just don't know what to do anymore. She will drink Boost now, and with all of my efforts has regained about a pound and been maintaining that, (after a 3-4 pound weight loss) but she can't live on Boost forever! We are waiting for a huge run of bloodwork to come back to Dr. M's office. I am anxiously waiting to hear those results. However, the results aren't going to cure her. Isn't there anyone out there that has dealt with this before????? What am I supposed to be doing? I've considered dropping everything in my life, and everything in my son's and husband's lives, and my daughter's, to commit to sitting down with her for hours a day to get her to eat, because at the moment, that's what it would entail, but I'm not convinced that any amount of doing that would cure her either.......... and could potentially do more harm than good also?! There has to be someone out there that could help. I wish I could find them.

thanks anyway I just got a referral call from a "nutritionist" (from the ped we have now) to "help dd learn to eat better" --- well, if she ate ANYTHING it might be worth trying! idiots! she's on a completely liquid diet at this point. We last saw the ped a MONTH ago, and I'm getting this call now-- not that it would serve any purpose anyway...... sigh. I'm so frustrated with all of this.

We are seeing Dr. M for treatment, but I am also looking for a primary care ped for dd.... Dr. M doesn't take insurance (he doesn't do primary care anyway) and Dr. B is impossible to get an appointment with. I don't believe Dr. O takes insurance or does primary care either, and her price menu is very high. I am on a more than limited budget. I honestly really can't afford Dr. M either, but dd needs to be treated so that's what we're doing. I am looking for a primary care ped in New London County area-- Hartford and south east. Preferrably east of the river.

I would REALLY like to find a pandas friendly ped in Connecticut. Our ped claimed to "know" about pandas, but proved to be someone who's confidence acceeded his abilities, which can be worse than just not knowing anything at all!

Oh, and Hershey's Kisses! She'll eat those, which is really strange because they're hard and she's terrified of anything else that's "hard" (and we're taking "the chocolate is hard" on a chocolate covered donut, or the outside of a cupcake was "too hard"-- when she was still eating those things or when you offer her something like that, that's what she'll tell you).. Lots of chocolate-- choc Boost, hot fudge, choc ice cream with choc syrup. Does that ring a bell with anyone? What's with all the chocolate? Oh, and she'll drink the pre-mixed chocolate Hershey's milkshakes that you buy at the store (which are like thick chocolate milk)

Dd will not eat soup, yogurt, smoothies or anything like that. I've tried, trust me. She will now drink Boost, several different juices, vitamin water, Popsicles, soft serve frozen yogurt, soft serve McD's hot fudge sundae, sometimes choc ice cream. That's it. Period. She is making an effort with me to drink 5 Boosts a day but we're not there yet.... We're at about 3-4 a day. The only testing we've done so far is the bloodwork ordered by the pediatrician, who did acknowledge PANDAS, but who also told me point blank that there's "no such thing as chronic Lyme", so his opinion was that if her bloodwork came back negative, she did not have PANDAS. (He did have the western blot Lyme test run, at our request). How much do these tests typically run? I am very interested in both the Cunningham and the spectracell. I am becoming suspicious about dd possibly having a copper/ zinc issue. I honestly can't afford the specialist we're seeing, or the follow up appt in 2 weeks.... Am going to try to get an appt with Dr. B eventually or at least get on the waiting list. So, my next question is this.... In the meantime, any suggestions? Make the huge effort each night to get her to struggle to eat a few bites? Keep going to OT? It seems crazy to not to try to feed her actual food, but it's such a wasted effort and is mentally exhausting for both of us. Tonight I didn't even try, just gave her the Boost at different intervals and called it a night. My son is sick (I suspect the flu) so he wasn't eating, and I wasn't hungry anyway. (Poor dh was looking for dinner!) Cholesterol total 207 HDL 51 (in range) Direct LDL 122 Triglycerides 204 (I don't know if I'm writing that right! But that's what the paper I have says!) Thanks everyone! This forum is a huge help... I feel so alone some times. Even dh sometimes "forgets" all the behaviors and symptoms she had and starts saying things like "we're allowing this to happen, we should start disciplining her and taking things away if she doesn't eat). It's so frustrating- I'm running this "campaign" alone (not completely, but in some respects) and I don't have the money to back it either.... Obviously, I will charge it up on my already high credit cards and get another job to pay for it etc. if that's what I have to do, but it's also frustrating that we have state insurance which usually covers everything and we can't get her the help she needs to be covered.

Hi again-- thanks for getting back. We have not done throat cultures. She did have bloodwork done-- strep, Lyme, and others that I can't remember (something about Celiac's Disease, Liver testing, etc.) All testing was negative, with the exception of her having high cholesterol which is a little weird. We had an initial consult with Dr. M and she is 18 days on Azithromiacin 200/day. At 48 hours on Azith she ate a whole hotdog, and then went right back to not eating again.... however, after 14 days or so, she had a huge turn around in regard to her other symptoms- anxiety, depression, aggression, etc. -- she is suddenly herself again! She doesn't concern herself with calories, with the exception of knowing that she is supposed to be getting a certain amount... she wants to help me to keep her healthy but is terrified of choking, swallowing, etc. She expresses hunger, and wishes she could eat. She doesn't have a distorted body image. She is down about 10% weight, but we are maintaining now (I think-- I haven't weighed her in awhile) She will drink Boost and we are working on increasing the amount per day. No infectious triggers that we know of. I think Dr. M suspects a lyme coinfection but we don't know that. She had intense anxiety, skin picking, aggressive episodes, ocd episodes (ie, she wigged out one day because I got my haircut, huge upset over forgetting her warm up jacket at dance class), started hating school when she loved it previously, depression (ie, just sat there not playing with brother and cousin on Christmas Eve), expressed sensory issues, and was generally aggitated and miserable since mid October. All that is better now, except eating. I'm not giving ibuprofen- I was in the beginning while waiting for Dr. M appointment (and now that I think about it, I do think her symptoms were easing off around the time that I was doing that) but I haven't since she started Azith. what do you mean by refeeding exactly? feeding tube?

Honestly, my goal at this this time is to try my best to keep my daughter OUT of any hospitals or institutions... The only progress I've made so far through this (in my opinion) has been with the antibiotics. If I can keep getting enough calories in her to keep her going until we figure out the eating piece of this than I will have to be satisfied with that. I am not impressed with the care she's received from her pediatrician or the CT Children's hospital. I am willing to do whatever it takes to make her better and they don't seem to have any viable answers at all. It's very frustrating, but the last visit to the ped's office he ordered bloodwork and when it came back negative his only suggestions were OT appointments and maybe finding a psychiatrist or going back to GI- and had us make an appointment for a weigh in a month later. That appointment is on the 13th and I don't think I will bother. I can weigh her at home. If that's his approach for an 8 yr old that would only eat home baked bread and ice cream at the time, and is losing pounds, than I don't have a further use for him. The Children's hospital gave me a useless referral to a psychiatrist that wouldn't even see her because of her age..... I don't have much faith in them either. Although I really can't afford it, I will continue with Dr. M as long as we continue to see progress. I am interested to hear what his thoughts are regarding the eating piece of this puzzle. If he tells me to go to psych or therapy that's what I will do..... but I don't think we're going to get her there with just therapy-- it seems to be more than that. Maybe this part will just take more time than the rest of the symptoms, I don't know. Dr. M said that a "fair trial" had to be a minumum of 30 days... it's been 17 days and we've seen huge progress already. Her liquid diet greatly concerns me, especially as I sit here with my son who is home with a nasty stomach bug that I'm terrified that she will get, since it could be dangerous for her, but we can keep her going this way for now. I would really like to have some helpful hints from an experienced parent who's lived with this though

pr40, have you dealt with extreme restrictive eating issues? I'm not sure what types of "therapy" would be useful in our situation-- we've been going to OT 1x a week and honestly, it feels like a waste of time. We drive 30 minutes there, and sit there for an hour- the OT cuts her food into tiny bites and we talk about how soft the food is and she crushes up pretzels and shows her how they dissolve in liquid, etc.-- she ends up having roughly 10 bites by the time it's over, then we drive 30 minutes home. This takes up most of the evening on a school night, and disrupts a normal dinnertime for the whole family, and then we have to rush to do homework, get ready for bed, and God forbid we have a bit of time to relax! I feel I can do the same thing we are doing at OT at home. And sometimes we do it, and it doesn't seem to alleviate her fears anyway.... I'm not sure about rewards systems.... dd wants to eat, and does seem proud when she takes a few bites-- but is that really going to get us anywhere? and what kind of "rewards" would you offer to get a child to eat??? I have to be careful about offering "rewards" also, because I also have a 6 year old son, and don't want to put any ideas in his head about not eating/rewards for eating, etc. As far as "dicipline"- dicipline doesn't seem appropriate at all. The only "dicipline" I impliment is having her drink the Boost, to make sure that we're (trying to!) get enough calories in.... it doesn't seem fair or helpful to "dicipline" her regarding eating food that she's terrified to eat. If I could connect with someone who might have some suggestions on things that worked or helped with them, that would be great. I am open to anything, but it has to feel right for us too

Hi- I'm still trying to connect with someone who's dealt with extreme eating issues as a result of PANS. I've pm'ed a few people with no response. After 2 weeks of antibiotics, my daughter has made a complete turn around with her mood and behaviors! She is the funny, goofy., smiley girl she was 4 months ago! But she is still terrified to eat. I don't know if this is a learned fear now, or if there is still more to it medically..... I am convinced the abx have made a huge difference and I am so glad that we didn't go down the psychiatric road with this...... is the eating piece of this puzzle the hardest part to resolve, and how do you resolve it??? Will more time and antibiotics help???

the copper/zinc information is interesting.... I'm going to check into that further! DD won't drink any smoothies, but she'll drink the Boost so I'm thankful for that! I am also definately going to order that book-- I've heard about it from several different sources now.....

searching_for_help, how old was your daughter when this started for her? You said it's been 10 years? My daughter just turned 8 in November.