need help with restricted eating, Dr. M and other things...

[Dedee]

I can't remember if I have mentioned to you before Rogers Institute. They specialize in OCD related eating disorders. Also, they understand PANDAS and PANS, but they get that you must first treat the eating disorder. They have a wonderful reputation. There is an inpatient clinic and honestly it sounds like this is to the point where you need to be headed. You are not able to treat this on your own. She needs intensive therapy. Her life literally depends on it.

 

Dedee

[searching_for_help]

I know nothing about Rogers, so can't comment on that. Just wanted to reiterate our nightmare experience. Alexian said they treated eating disorders, OCD and I requested testing for PANDAS. Oh, yeah, they said they did it all! I was so hopeful and thankful and literally sobbed when I heard they could help us. Long story short - the OCD unit is a separate unit (not available to the ED patients), and the eating disorder unit doesn't believe in PANDAS. There was a little boy there that was not afraid to eat - he was afraid of vomiting. My daughter mentioned to him that his family might want to look into PANDAS - and she got chastised by the staff for mentioning PANDAS and giving him false hope! She lost weight the few days she was there, and we pulled her out. They didn't seem concerned if she ate at all, so she didn't until I called and told her she'd be there longer if she didn't. We were flat-out lied to about their treatment facility.

 

I wouldn't go anywhere unless they agreed to test/treat for PANDAS WHILE they are helping with refeeding.

 

Like I said, I know NOTHING about Rogers - they might be great - but I just want to warn you about what some of the places are like. I had asked all the right questions - I just got lied to.

 

 

 

 

[BeeRae22]

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

[mama2alex]

I can't advise you on the eating disorder, but I wanted to make sure you understand that this will not be an "either/or" solution. The antibiotics are helping her with some symptoms, so they are obviously addressing one piece. There are most likely multiple other pieces to the puzzle. There may be bacterial infections that these particular abx are not touching, there may be viruses, parasites, issues with mold, biofilms, food allergies, and other issues that you'll learn about if you stick around the forum long enough. Keep searching for answers and make good use of your time with Dr. M by asking LOTS of questions.

 

As for the doctors, I think most families don't find that much help at major "respected" hospitals, for a number of reasons (USF being one notable exception).

 

So glad to hear she is making such amazing progress - this is really fast compared to what we've seen with our son.

[T_Mom]

Hi beerae22,

We have dealt with eating restriction with both daughters. Both have had severe anorexia episodes associated with their PANS symptoms (OCD and ticcing.) Like your child,our daughters never "tested" positive for strep or elevated titers. (Though both tested high with the Cunningham test results for "high PANDAS" when in exacerbation -- and low when not.)

 

Both of our daughters became so severe that they each were almost hospitalized for anorexia. When treated successfully for PANS (with antibiotics, IVIG, pherersis--different episodes -- different treatments) their "anorexia symptoms" faded away. I would still encourage you to seek the support of doctors associated with an anorexia clinic that uses the Maudsley method (evidence based researched and proven effective.) This was a HUGE help to our family and helped us restore their weight, which in turn supported brain health.

 

Is your daughter's BMI at a dangerous level?

Has she lost a significant amount of weight?

Does she "qualify" as in the dangerous under-weight category? If yes, then you need the help of an ED clinic.

 

On a practical level, I would suggest small meals/snacks every two hours, if she is drinking Boost that is a good sign, but she needs more to get well again.

 

It is a GREAT sign that you are seeing a positive change in neuropsych issues with the antibiotics! That is very encouraging--

I will also pm you--

 

 

 

[JoyBop]

We are working with an immunologist who is looking for any global autoimmune disorder. There was 5000k dollars of bloodwork! Quantative IGG levels, protective antibodies to all vaccines, T cell profile, ANA, the list goes on and on.

[EAMom]

Hi beerae22,

 

Sorry I didn't post sooner...I've been sick with a fever all week (still have a bad cough and am still woozy).

 

So your dd is 8? My dd was 7.5 when PANDAS anorexia struck. (I skimmed the thread, sorry if questions already answered).

Questions:

 

1) have they done throat cultures (on family members too)? I know blood work was mentioned. Our non-pandas dd was a asymptomatic strep carrier (throat swab positive, no symptoms) and clearing sister was really important in getting PANDAS dd better. Get current throat cultures on all family members.

 

2) did they submit blood work for the Cunningham Test? http://www.moleculera.com/ -->positive results would cement diagnosis and may help in getting IVIG. I have heard insurance is covering this test for some kids?

 

3) what antibiotic and what dose (and how often) is she on? Is this the only ab she's tried? While our dd has some improvement on Augmentin, her eating didn't really turn around until we "discovered Azithromycin" (also ibuprofen). Mood improvement (she was yelling at us a bit less) took about 1 week, she started eating after 2 weeks once we started Azith (250 mg/day for a 43 pounder). Azith was the 4th antibiotic we tried (Amoxicillin did nothing). She might have also had mycoplasma (who knows?) as nobody was testing for mycoplasma in 2008. She definitely had strep (culture positive). BTW, Azith doesn't work for everyone, but don't be afraid to try a stronger ab if the first isn't working, also having a high enough dose matters.

 

4) how much did she weigh? How much weight has she lost? If she's lost more than 15% (or so) of her body weight, certain brain changes can take place (distorted body image will kick in) so refeeding is very important (as t_mom alluded to). This happened to my dd, she initially had a fear of sugar and weighing more than 50 pounds. Then very quickly, she stopped eating and once she dropped weight then she had the freaky distorted body image (would look in the mirror and think she was fat even though she was bones). She had dropped from the 25th percentile (her norm growing up) for weight to completely off the charts. (Her height was 50th percentile). My dd was hosp. for 6 days (a parent was with her the entire time) to start her refeeding. Note: it's important that she not be separated from parents, separation anxiety can be high in these kids.

 

note: my dd didn't have the fear of choking...but that is actually more common in PANDAS kids than my dd's symptoms (fear of sugar, fear of weight gain).

5) sorry if I missed it...was an infectious trigger ever identified? Did they test for viruses? Sometimes anti-virals help PANDAS kids.

 

6) what were her other symptoms?

 

7) are you giving ibuprofen?

Edited February 1, 2014 by eamom

[philamom]

My dd also had issues in this area - a few times, during different flairs. Not as severe as some here, but her pediatrician pulled her from school in 2nd grade because of her rapid weight loss - to focus on her health. She is 12 now. Mainly for us it was the fear of choking each time (not just fear, but clearly difficulty being able to swallow). During one flair she would constantly spit because of a hard time with the normal phlegm in her mouth. She never spit prior to the flair. There was one flair where it escalated to extreme ocd of calories. She was checking labels - for calories and expiration dates - on everything. The issues resolved with antibiotics and IVIG. Some of it though did move to a fear of vomiting, which became very problematic for us. But she also had nausea, gerd, GI issues, when not properly treated, or treated at all.

Edited February 1, 2014 by philamom

[BeeRae22]

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?

[pr40]

if she would drink, you can make soups, and you can blend, that is liquify almost anything. When our kids were bebies, we would simply bland what we ate for them by adding clear broths. it looks awful.

i don't remember if you kid is taking any probiotics. they might be helpful, too.

[KaraM]

HI beerae22,

 

I'm one of people LLM mentioned above.

We only had a brief encounter with restricted food intake it is was the result of contamination fears (her lips that might touch the food, the food itself, etc).

However, the father of the child featured in Niel Swidey's Globe articel (see http://pandasnetwork.org/the-boston-globe-features-pandas/) has come to our Salem Support Groups a few times. He is not on this board, but he has told me that he is willing to speak with anyone. So let me know if you want me to connect you with him. I'll need you to send me your email address though. You can PM it to me.

 

You seem like you are still wondering whether this is psychiatric or PANDAS/PANS. Have you considered the Cunningham test? Having those results really helped us purse the PANDAS/PANS path with confidence. And when I was in doubt, I was always able to look back. See http://www.moleculera.com/ It can be a little pricey, but depending on your plan, insurance may cover some of it. I will say, though, that it is one of the best investments we made in helping our dd.

This test does not test for any specific infection, but determines whether there are anti-neuronal antibodies attacking the brain...a sign that the immune response is mis-directed. (I'm out of practice on explaining this one, so someone else may want to chime in).

 

We too started with negative throat culture and a negative Lyme test. But we did eventually find Bartonella (another tick born disease). Based on that, Dr. B, and then Dr. J. treated her for both Lyme and Bartonella. With the appropriate treatment, she has returned to health. Her Lyme test did eventually show as positive (both Igenex and the LYme Culture test). So I wouldn't dismiss Lyme just because the test was negative.

 

Please feel free to PM me with any questions. I'm short on time in writing this today, but wanted to respond and let you know I'll help in any way I can.

 

Kara

[sf_mom]

I haven't read all the responses lately so I apologize if someone has already mentioned this to you since my last post.

 

On of our Dr's believes SKIN PICKING and NAIL BITING is typically trigger by one of three things; Vitamin/Mineral deficiency (Calicum, B, Copper/Zinc ratios), Parasites or Yeast.

 

Again, I would talk with Dr. M about running the SpectraCell Vitamin/Mineral test and also a comprehensive stool analysis. The stool analysis will look for Parasites and Yeast. The SpectraCell will look for the inner blood cell utilization of vitamin/minerals and not serum levels.

 

At one point our older son was biting his nails non-stop. We had been doing chelation with him which depletes vitamins/minerals and nail biting started shortly after starting the chelation process. Since adding higher levels of Zinc, Calcium, Copper his nail biting has completely stopped. We were supplementing these vitamin/minerals at the time but much higher doses have helped: 120 m.g. of zinc, 6 m.g. of copper, 1,000 m.g. of Calcium. I do not recommend supplementing at these higher doses unless you have a Dr. following the copper/zinc ratios.

 

I am hopeful with antibiotics and perhaps some zinc you will be make some headway with the eating issues.

[EAMom]

There is a lot of "stealth strep" around which may be one reason for the "rise" in PANDAS. That means strep w/out typical symptoms (no sore throat, no fever). Too bad nobody throat cultured her when her symptoms started (before she started abs). It's very possible strep was the trigger. My dd had a throat positive culture when we finally learned of PANDAS and we insisted on a swab (2mo. after onset of behavior change). The doc was surprised "Gee her throat doesn't look sore." She also had vaginal strep (culture) and her sister was positive on the rapid (asymptomatic carrier). My PANDAS dd never got elevated strep titers. Her only abnormal bloodwork was the Moleculera (Cunningham) Test.

 

Things I would recommend for now:

 

1) continue Azith. even increase the dose? how much does she weigh?

2) throat culture family members. If there is a strep carrier (culture positive, no symptoms) that will affect your PANDAS dd. Strep in the household must be cleared

3) start Ibuprofen 3x daily (typical dose for size). Make sure to give with food.This will help get brain inflammation down.

4) continue whatever you need to do keep her calorie intake up. You are in a much better position than we were!
5) from what you have described, your dd's symptoms sound like classic PANDAS. (Too bad nobody did a throat culture to look for strep! My dd never had elevated titers.) I ditto the suggestion (above by Kara) to test through Moleculera ("test for PANDAS") if you need to convince yourself this isn't strictly psychiatric (also may help get IVIG coverage in the future)

6) I agree with others about supplementing with zinc

 

Avoid steroids if you suspect Lyme or are thinking of doing the Moleculera test (steroids will affect results).

Also, you thought about getting one of those super blender things? (Vitamix?) where you can make healthy soups and smoothies?

 

PS my PANDAS dd also has super high cholesterol. What were your dd's numbers? (I'll have to look mine up later...I think had a thread about it somewhere)>

 

PS--we didn't use feeding tubes, but some do if it is bad enough and you can't get them to eat on their own

Edited February 2, 2014 by eamom

[BeeRae22]

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.

[BeeRae22]

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)