Confused by advice re: weight loss

[1tiredmama]

Ds18 and I saw his PANDAS doctor today. It was noted that he is malnourished and lacking muscle. The doctor believes the chronic nausea stems from the brain. We've already done PEX, and we were told that because he went 13 years undx'd, any sign of improvement in any area will take months.

 

In the meantime, my job is to stop the weight loss, refeed, and get him into physical therapy to address his muscles. The doctor suggested behavior-modification, but my son is nauseated. He LOVES food! A year ago, he was quite overweight! This is definitely a physical problem. There is no OCD or distorted body image. I am 100% sure of this. He simply has lost his appetite, and he either feels nauseated or too full to eat much. In addition, he has always been a picky eater due to sensory issues.

 

I'm supposed to increase his caloric intake, but honestly, he is eating as much as he can. I'm supposed to weigh him everyday, but I am wary of putting too much focus on food, weight, and eating. I know how easily our kids can slip into an eating disorder.

 

After only a week, ds is no longer interested in drinking Boost. I suppose, that's behavioral, and I could give him incentives to drink one a day. We will definitely do physical therapy. And, I can try offering him small healthy snacks while he is gaming.

 

I'd love to hear some input on helping a kid who has chronic nausea. Thank you!

[AmySLP]

Compazine (sp?) is used quite frequently for nausea and I think you have to start by treating that. Will your son eat ice cream? There is a product called, Magic cup, may be a few others out there of other brands, that are like ensure/boost in ice cream form. Also Boost comes in a pudding. You'd have to get these online, but these may offer other options. Have you seen a dietitian to see what options they may have for boosting nutritional value of what he already eats? I would do that as an essential step. Just make sure to see a registered dietitian and not someone just calling them self a nutritionist. There are a few behavioral feeding programs for kids that I know of, but in NJ and Philly. They do work as a team, with gastro docs., occupational therapists (sensory issues) dietitians, speech pathologists. Hey typically prefer inpatient initially to make their behavior mod. system work. Hope that helps....I'd treat the nausea and seek a dietitian to start.

[bigmighty]

Amy, I searched for Magic Cup, and found a whole bunch of good products - fiber jam, protein juice, etc. Thanks so much. It's good to know that these are available.

[bigmighty]

Ds18 and I saw his PANDAS doctor today. It was noted that he is malnourished and lacking muscle. The doctor believes the chronic nausea stems from the brain. We've already done PEX, and we were told that because he went 13 years undx'd, any sign of improvement in any area will take months.

 

In the meantime, my job is to stop the weight loss, refeed, and get him into physical therapy to address his muscles. The doctor suggested behavior-modification, but my son is nauseated. He LOVES food! A year ago, he was quite overweight! This is definitely a physical problem. There is no OCD or distorted body image. I am 100% sure of this. He simply has lost his appetite, and he either feels nauseated or too full to eat much. In addition, he has always been a picky eater due to sensory issues.

 

I'm supposed to increase his caloric intake, but honestly, he is eating as much as he can. I'm supposed to weigh him everyday, but I am wary of putting too much focus on food, weight, and eating. I know how easily our kids can slip into an eating disorder.

 

After only a week, ds is no longer interested in drinking Boost. I suppose, that's behavioral, and I could give him incentives to drink one a day. We will definitely do physical therapy. And, I can try offering him small healthy snacks while he is gaming.

 

I'd love to hear some input on helping a kid who has chronic nausea. Thank you!

 

My gut seems to be in line with yours on this. I feel strongly that your child's problems are caused by the PANDAS, and are not ancillary. If I'm correct, that means that PT/OT & behavior mod may do nothing to help. Our DS had such low muscle tone that he looked like his muscles were loose rubber bands for a decade. Since going into remission eight months ago, he now has normal muscles for the first time in a decade. Apparently, the basil ganglia is responsible for sending a signal to the muscle telling it to contract. If there is brain inflammation, the muscle may not get the signal, therefore may not contract. A few years of PT/OT when DS was young resulted in no changes whatsoever in muscle. During the worst of his PANDAS exacerbation, DS jogged tand worked out with weights daily for a year and there was no change whatsoever. The only way he ever had normal muscle mass was via reduced brain inflammation.

 

As for the weighing, I agree and would keep it to twice a week or something. The idea of emphasizing it daily causes a lot of added stress.

[LNN]

My DD has always been a picky/limited eater. She will judge foods based on how they look and decide right them whether she'll eat it. It isn't OCD. For years, we searched high and low for the source of her problems. She had GERD and dyspepsia but Upper GI endoscope found only the slightest irritation. Negative cultures, negative stool tests. It got worse while she battled EBV. Then this past spring, we started treating her MTHFR mutation and her eating is "normal" and she's put on weight. No more GERD, normal appetite.

 

While researching the whole MTFHR thing, I came across the role of serotonin in the gut. It apparently "calms" the cilia. I didn't pay tons of attention at the time because it was related more to those who have an A1298C mutation, which my DD doesn't have (hers is C677T). But perhaps some of the supplements used for A1298C might help your son - TMG/DMG, tryptophan or 5HTP... along with treating the EBV with l-lysine.

 

Have you done the MTHFR test? I realize just because this worked for my kid doesn't mean it will work for yours. But I toss it out there as something to look into. I agree that if you make too big a deal over the food, it can backfire. I personally wouldn't weigh him every day. Everyone's weight changes day to day. Maybe twice a week? I also get that this is becoming a critical issue. So it's a hard balance.

 

What is his opinion on all this? He's certainly at an age where you need his cooperation to make this work. Does he realize that he's on the cusp of needing forced feeding?

[kos_mom]

Tiredmama,

 

We are having chronic nausea and vomiting problems as well. DD was recently hospitalized for blood infection and this became a problem in releasing her because they were afraid she wouldn't be able to continue oral med regimen after release. She pulled herself together enough to get out, but they referred her to a gastroenterologist. They also gave her prescriptions for zofran and phenergan, which help somewhat. Compazine, which her PCP gave her previously, was not helpful for her and Dr. L advised against it because it has psychiatric side effects.

 

She had an endoscopy at the hospital which was negative except for tears in her esophagus from vomiting. She is on protonix for this--apparently tears like this can become ulcers and protonix helps prevent that. The gastroenterologist is referring her to an infectious diseases doctor--not 100 percent sure why but we are to see him before going back. DD is motivated to do so as the gastroenterologist is controlling the anti-nausea meds. The ID doctor is proving harder to get into than Harvard--I've been calling the office for three weeks and can't get an answer as to whether he will deign to see her, let alone an appointment. (A digressive vent.)

 

The gastroenterologist expressed concern about DD's fluctuating liver function tests (a bit hard to sort out owing to major infections that can affect this test) and in the meantime has ordered blood tests that are clearly aimed at exploring a possible autoimmune problem with gastrointestinal effects. Here are the tests she has ordered:

 

Complete blood count

Complete metabolic panel

Anti-Smooth Muscle Ab

Anti Mitochondrial Ab

Anti-Nuclear Ab

Iron/TIBC/Iron Saturation percent

 

DD has lost 20 pounds since May, but is not yet in dangerous territory. Like your son, she eats whenever she can do so without feeling nauseated and has no body image etc. problems.

 

I hope something in this might help.

 

Ko's Mom

[Kathy4Him]

1 tired mama This is what we bought and used for a while...it works to put on weight and muscle

GNC Pro Performance AMP Amplified Mass XXX With water 750 calories, 1000 with milk. Even if he could drink a half of a glass several times a day. We were desperate and this did help. Our son was 20 when he was drinking it. He had lost 25 lbs.

 

You can check it out and order it online. GNC

[dcmom]

Hey mama's-

 

I totally feel for you- the weight issue is certainly scary, and does sound puzzling.

 

I am not saying this is your situation, but will just throw this out there:

 

My little one had a clear onset of ocd after strep. At the same time, my older one developed fairly constant stomach discomfort and due to this cut down severely on her eating. Even though we knew all about pandas, we did not see this as ocd. We did gastro work, she was diagnosed IBS (she is not). Fast forward six months (stomach issues persist), and we come to the realization due to other issues, that she has pandas. Within one month of treatment, all symptoms subside including stomach issues!

 

My other daughter also has her eating affected with pandas exacerbation. She becomes much pickier, and many foods are not palatable to her anymore. When she is pandas symptom free- this issue goes also.

 

I just want to say that eating (or not eating) is a MAJOR PANDAS ISSUE, that many (if not most) here have dealt with in some form. I think you should listen to Dr Latimer, and not necessarily believe that this is just a loss of appetite due to physical factors. I am certainly an advocate of treating any possible medical issue, and testing for possible physical causes- BUT I think it is important to look at any new behavior, symptom, physical complaint, or issue in general as possible pandas- and rule that out first (or concurrently) if necessary.

 

We have also seen headaches as a pandas symptom. I think the headaches and stomach issues that my older daughter has had have been on the "sensory" spectrum- while the eating issues my younger has had were more ocd in nature. In the end, aggressive pandas treatment (steroids or pex) has been the answer for us, and these issues disappear along with the ocd, emotional lability, cognitive issues, etc.

 

Good luck!

[airial95]

We have eating and vomitting issues as well, and my son is underweight for his age, so I can relate. Our vomitting issues - however are unrelated to his eating issues. We have connected his vomitting/nausea to his anxiety about taking his medicine. It was very bad for quite a while - vomitting before, after, during medicine time, etc...

 

It is a tough one to address. He would TAKE the medicine - but then worry so much that he would vomit it up later. It sounds like your son may have a similar issue. He likes food, and likes to eat, but maybe his OCD is casuing him to stress about it in another way that is making him nauseous? For the record - my son has never associated his nausea/vomitting with taking medicine anxiety - even though we figured out that's what it was, so is it possible that your son is having anxiety about eating causing this and not making the connection because to him it seems unrelated?

 

We did work with a behavior therapist on this issue - and believe it or not, it helped. We started using relaxation techniques at various times of the day, and then specifically introducing them at medicine time. He would go to his "special corner" or "special chair" for a period of time before taking medicine. After a couple of weeks - it did help the vomitting. He still complains of nausea at times, but it has reduced the vomitting entirely.

 

Maybe introducing a similar concept for mealtimes might work?

[kos_mom]

I hate this vomiting thing. Last night DD couldn't even hold down water.

[Kathy4Him]

I hate this vomiting thing. Last night DD couldn't even hold down water.

 

 

 

Oh...so very sorry, I will be praying for her today that she will be able to eat and drink without being sick.

Will keep her mom in prayer too!