Serious weight loss

[Joan Pandas Mom]

We went to Pedi yesterday. My son has lost 14 lbs. in 4-5 months. He is 6'1" and now weighs 147. What the heck is going on? Pedi ordered a few labs. Thinks part of the problem is missing breakfast (DS he sleeps until 12:00). I know he is eating less (OCD is very picky lately) but he isn't nearly as active as he use to be. He use to play football, basketball and Lacrosse when he was in school. He trained this summer. He probably would burn about about 800+ cal. a day. He has been inactive since I had to pull him from school in late September. Why the weight loss?

[MomWithOCDSon]

Joan --

 

I don't know that this could account for all of this, but our DS always loses weight during exacerbation. We have attributed that to his whole system being "revved up," burning calories at a furious rate with fidgeting, anxiety, etc.

[emmalily]

I dropped ten pounds in the first couple months this all started for me (which was a lot on a 4' 11' frame). I think it goes with the territory of having something wrong in the body.

[EmersonAilidh]

I agree with Nancy's theory. Especially if your little one manifests with rages & tics.

[smartyjones]

I know he is eating less (OCD is very picky lately) Why the weight loss?

 

 

of course, all we hear and see is seen through our own colored glasses of our own experience - not saying this is yours but i will tell you of ours and see if anything resonates.

 

1 -- when ds was first in episode at age 4.5, he was dropping off the weight charts. he's always a slight child - small wrists, thin body -- after being 9,3 at birth - thank you very much. anyway -- he had active strep for who knows how long and tested on an IGG test for multiple food issues -- all dairy, gluten, eggs, a few other things. we got him on abx and took him off those foods -- his weight bounced back -- 4 lbs or something in 6 wks, which was more than 10% for him. i realized he had been refusing milk - i think he was feeling bad from it. i think these are physical causes relating to infection.

 

2 -- this past summer he had an intense herx-like reaction to an anti-viral and went into classic, textbook, contamination food refusal. luckily, it only lasted a short time with intense refusal for about 7 days. it was interesting b/c i think we saw in 2 weeks what usually may be 6-12 months. our dr thinks this may have been something that would have come along down the road w/o treatment. he slowly stopped eating if something wasn't right -- dh put a container of muffins on the floor of the car when we were going on a trip -- ds wouldn't eat those muffins b/c the container was on the floor. the next week, he asked about expiration dates. the next week or so, the intense hand washing and refusal -- he couldn't eat anything that had touched anything else -- anything -- plate, box, bag -- nothing.

i now believe he had some thoughts that he would die if he ate that contaminated food -- more tragic, i think it may have been also wrapped up with a thought that he would deserve it.

 

your ds could be losing the weight b/c of the infection's effect on his body. also possibly trouble with certain food like gluten or dairy as a secondary cause of the infections.

 

he could also be restricting food in ways that you are not aware. i knew my son didn't eat those muffins on that trip (ironically to the OCD conference in July) but just thought he didn't want them. it was about 1-2 weeks later for the intense restriction that we were acutely aware of contamination issues. it was months later that he said something to let me know the muffin refusal was contamination related.

 

is he in ERP for the OCD picky eating?

[Bio and adopt]

My 15 YO son lost 10 lbs in 6 weeks over the summer. He has been very particular for several years about what he eats (it has to be healthy and low in fat). When I realized how much weight he was loosing we finally got him to admit he was cutting back on calories because he was afraid of getting fat. He started at 5'5" and 116 and went down to 105. One of his OCD's is fear of fat. We now have him to a point where he is eating more (although it still has to be healthy), but it is something we watch closely.

My older son (not PANDAS) is 17 6'1" and 138lbs, he is very thin but has always been thin.

[Ozimum]

Hi Joan Pandas Mom,

Just a thought...is it possible there are gut issues responsible for the weight loss? We went to a Biomed/DAN doctor and discovered our tall and skinny 16ds couldn't digest dairy. He had virtually no E-coli in his gut (where it should be) and it had been replaced by strep and staph! No wonder! Biomed protocols of gut healing diet, probiotics and supps have helped enormously and the OCD is slowly dropping away! He knows this is working for him.

I forgot to mention we also had a targetted combo of abx for the strep and staph.

Edited December 23, 2010 by Ozimum

[Megs_Mom]

Our daughter's OCD in an exacerbation also leads to borderline eating issues - hers are due to fear of sugar & fat. I always worry about the eating issues.

 

Hope you figure it out soon, am praying for you.

[SarahJane]

My son(6) didn't lose any weight this year (been dealing with PANDAS since Jan), but he didn't gain any either. Has grown about an inch or so tho'. He did stop drinking milk back in April or May which was a pretty good calorie source (will say the milk's sour or gone bad--so OCD), . Getting him back on milk is one of my healing objectives post-IVIG. (We're 4-weeks out, & I've offered it a few times to no avail.) He stopped eating cheese with the latest exacerbation (Sept/Oct/Nov), & cheesy stars were a staple in his diet (cheese sandwiches rolled thin & cut with a small cookie cutter--sometimes I do hearts & if I'm feeling really industrious, I use the tiny letters to spell words but they're kind of a pain). Said he was allergic to cheese. That's still going on a bit, but he has had cheesy stars a few times since IVIG. He'll say he doesn't want them if I offer them, but he'll eat them if I make them for him. (Yes, I know...stop offering. Us PANDAS parents have bad habits that we have to break in dealing with our PANDAS kids too, eh?) I should weigh him to see if he's gained anything yet...his appetite is still pretty variable & limited. (Btw, he doesn't have any dairy allergies...no gut issues. It's just an OCD thing, I guess.)

 

Good luck figuring this out for your son Joan.

[Joan Pandas Mom]

Thanks everyone. I think that appointment scared him yesterday, he ate ALOT today. I am still doing alot of compulsions for him. He argues with me that it has only been 3 weeks from IVIG #3. Do you guys still do compulsions for your kids? Every ERP treatment that we have been to has told me not to do any more compulsions for him.

[Megs_Mom]

Thanks everyone. I think that appointment scared him yesterday, he ate ALOT today. I am still doing alot of compulsions for him. He argues with me that it has only been 3 weeks from IVIG #3. Do you guys still do compulsions for your kids? Every ERP treatment that we have been to has told me not to do any more compulsions for him.

That is actually a very good sign - do you find that he is stronger in general right now?

 

I think of PANDAS like terrorism. The sheer terror in their heads is so overwhelming that they will do anything (compulsions) to make it stop for a minute. Imagine that you were kidnapped and a gun was to your head everyday for months as you were ordered to do certain things over and over. Then you are left alone. Do you run and escape? Or do you still keep doing the things you have been ordered to do for months? Do you fear retribution if you don't? Could they be watching you? I think this is sort of what happens when the PANDAS starts to clear. The HABITS of OCD have started to take hold, for some children. Maybe this is due to the length of time they have had it, the severity of it, the family propensity towards OCD (maybe mild form before pandas attacks), etc.

 

For these kids, there is some extra work to do, and it can be very confusing for both of you - is it still PANDAS, or is it just a very strong habit? Months after my daughter was completely well (from my perception), we would walk through the grocery store, and she would suddenly say "mom, I think I like apple juice - can we try it? I think that was just the "worryman". Or we would pass a park and she would beg me to pull over and start running joyously up to a certain slide, yelling "mom, I can do this slide now"! It was like she was finding herself again.

 

But in the meantime, there was some work to be done, especially about food - I am not sure what would have happened if we had not. We had a few "all sugar dinners", and she accomplished it pretty easily, but not without some work. I remember looking at her weaping into her ice cream sundae for dinner, and thinking "am I pushing her too hard?". But she did it, it was the right time, and her anxiety, while high, was never above a 4-5. Before the abx, an ice cream sundae would have been absolutely out of the question impossible. Now she can eat sugar 24-7, like any kid! Had we not done the work, I think she would have absorbed some compulsions into her personality, or they would have become habits.

 

Your son has been so severe, I am not sure that anyone would advise you to go cold turkey on doing compulsions. But certainly having an ERP plan and getting through some of the tantrums about it, would be very wise. Given his severity, this might be tough on your own. Do you have a local ERP therapist that can help guide you both in the plan? I found that we needed one, as I needed someone to assure me that we were not pushing too hard, or if we needed to help her more, etc.

 

Hope this post is finding him stronger, and ready to reclaim his life. I'm just so sorry he has been through all this.

[wornoutmom]

Joan: I don't think you should be too hard on yourself for participating in your son's rituals - it's been a really really rough road and sometimes you just need to keep the peace. The thing with doing compulsions for your child is that you can't stop doing them all at once. It would just provoke too much unbearable fear for him. I think it's more like picking one to tackle at a time and announcing a limit and sticking to this. What you pick can be (in my opinion) what is driving you crazy the most. My son had a compulsion to squeeze my biceps. I started feeling really violated. Set a limit of 3 times a day ( he had been doing it like 7 times a day). After he got used to that, I lowered the limit to 2 times a day etc.. We have done this with my son's need to ask reassurance questions - I'm only going to answer that "X" amount of times and then say "this is the second time I am answering that and that's the last time" and when he asks again "I've already answered that twice and I'm not going to again. You tell me the answer - I know you know if you relax and think about it". Sometimes if I see a new ritual pop up and I recognize myself being pulled into it I will refuse it from the get go before it really takes hold. I'm guessing your son has been through enough therapy to recognize that he's pulling you into his rituals and hear you when you explain you need to reduce this for your own sanity and that you're going to work on it together a little at a time.

[Joan Pandas Mom]

I just saw these last two posts. Thank you. I am realizing I can't do alone. I keep holding onto stories of other kids that were crippled with this too, but started to get stronger after 2 or 3 ivig's and abx to at least start the ERP work. He is soooo terrified of beginning it. I have called McLean. I am in the process of filling out their 30 or so page application. Part of me thinks an in patient program would be too traumatic, but the other part of me knows he is using me as a crutch. I have read about people that have gone for 6 week in-patient programs, some people twice, and it has helped them live normal lives. McLean has a 3 month wait list.