Advice for a good friend

[kmom]

My really good friend calls me today and says that she needs to talk to me because her DS6 is having sudden specific anxiety and fear. He is completely anxious over the thought of throwing up. He is scared if he hears even a sound that sounds like someone gagging. He was on at a friend's house last Friday and he completely freaked out b/c he thought he heard someone make the sound. Then Sat. he wouldn't eat all day b/c he was afraid he could throw up. He keeps saying he's nervous and has a stomach ache. She was hoping whatever it was would go away. Then today it happened again when they were dropping his younger brother at preschool. He freaked out worrying about it. He did go to kindergarten for the day and did eat half his his lunch but he usually eats all of his lunch. Tonight he started up w/ saying he was nervous, sick and what if he (and he couldn't say the word throw up b/c it scares him too much). My friend is concerned. I never want to make anyone who sees anxiety and fear in their kids think that it's the same experience w/ PANDAS, Lyme and who knows what else but I can't help but go there in my head. I told her to see if it fades in a few days and if not find an intergrative dr. or DAN dr. or some dr. who would be open to do some blood tests. What is good preliminary stuff to do? I mean, I know what we've done but we had to jump in w/ both feet b/c it hit like a ton of bricks and bc strep was a chronic infection problem it seemed obvious to hit the PANDAS trail. But for her there's no obvious trigger. I told that aside from PANDAS and Lyme/chronic infection, I'd check yeast, food sensitivities, strep in stool. Any other advice to add? I told her I'd ask my cyber family first since you all would have better advice than her stiff pediatrician who she doesn't even want to go to b/c she's not thrilled about him.

[LNN]

This is hard, because if you hit her with everything you know all at once, it will overwhelm her. Since she doesn't have an obvious trigger, take the "peeling the onion" approach and explain that it could be many things and the goal for now is to manage symptoms (introduce the concepts of CBT/ERP) and to rule things out.

 

My daughter has been on our radar for two years, but only recently had symptoms severe enough to consider a Pandas or lyme dx.

Some easy, insurance friendly tests that most pediatricians can/will order:

ASO, Anti DNase B

Mycoplasma

yeast (Candida blood test)

H Pylori

she can do a standard western blot, which might be informative, but she'll have to understand it isn't conclusive - so you'll have to decide whether she's the kind of person who is willing to look beyond "conventional wisdom" in this area

 

If she can afford it, you can suggest a Cunningham test

I try to recommend people test C3D immune complexes because high complexes can give false negatives on other tests, but that might be a stretch for a pediatrician to accept.

 

If the doctor is willing, a 3 week trial of abx might be telling.

 

We also did a battery of other tests, including an endoscope, poop tests, on and on. Igenex is only slightly lymey on 41 and an ind IgG 39. Everything looked normal yet my daughter kept getting worse. We're awaiting Cunningham results. But we started her on abx and within 24 hours she was much much better (but strep titers were negative). So we still don't have a diagnosis, but we have a temporary management plan.

 

Start slow - what you know will spook her. Let her digest and ask for info instead of bombarding her. But try to stay in touch as much as possible. She's going to need someone who understands.

[dcmom]

This is OCD- my 10yr old has this exact fear-which at times of exacerbation prevents her from eating and wanting to go out in public.

 

Have they done a throat culture?

 

I would suggest a throat culture immediately. I would suggest the book "What to do when your brain gets stuck" as a way for the parent to talk about this with the child, to immediately start calming the panic. If this doesn't resolve quickly, I would find a doc to prescribe 30 days of antibiotic.

[kmom]

Thank you ladies! I just emailed my friend a lot of info. She's my very best friend and she's strong so I gave it to her gently but knowing her so well, I know she'd want the good, bad and the ugly no matter what. I have felt thru this whole journey w/ my own kids and myself that I don't care what it takes, just give me the facts and I'll fix it to the best of my ability w/ the best docs I can get my hands on. Another person on forum, kindly PM'd me w/ her perspective as a child w/ this same type of OCD. I think that too is very good for my friend to see it from the kid's perspective. She's questioning her parenting and she shouldn't. She's a great mom. She's worried about disciplining it too much and enabling. We know that fine line so well. As your healthy kid suddenly acts so strange, the inital reaction is to discipline and say, "You have to eat. That's ridiculous. You're not going to get sick!" Or joke about it to shake it off. But when that isn't working, it leaves you thinking you're in the twilight zone. I still pray her son wakes up and it's gone b/c we know this journey is exhausting but as I told her, to have good info and advice so quickly into it is a blessing. So thanks!!!

[philamom]

I think a short trial of abx is a smart idea, while checking other avenues. This is where my dd was this time last year, and it eventually led to her not being able to leave the house (3 months). She had a fear of choking & vomiting. Since she had physical symptoms (severe heartburn, GI issues, weight loss), I didn't realize much the ocd was playing a part. It grew into a major issue very quickly!

[kmom]

Just talked to my friend and it's kind of the same. Had a snow day yesterday and he was pretty good...ate here and there, not the usual but ate thank goodness. I told her that is the most important thing right now while figuring out what's going on. She said @ bedtime the anxiety and feeling sick stuff started full force. And he's a kid just like mine always were, no nonsense bedtime, you do the routine then in bed and asleep for the night...every night. But the past few nights it's tough and he's up a lot thru the night. She said he's yawning a lot during the day b/c he's tired from poor rest and he looks terrible. She got probiotics today and has started giving him vit. D in addition to his multivitamin b/c she knows how our country on a whole lacks vit. D. She's still playing the wait and see game. He had a good AM and went to school. She's doing the wait and watch game. I am wracking my brain thinking of other stories where this is just a stage so I can say oh, that happened to so and so and it was gone in a few days, but can't b/c I am sucked in to the OCD, anxiety PANDAS/Lyme world w/ my own. So I try not to jump to that world but I also know that feeling all to well of "what is happening to my kid b/f my very eyes" and b/c that feeling is so awful, I wish I could fix it for her in case it gets worse. Plus, I always feel so bad for the kids. They are more confused than we are.

 

It only fuels my fire more to know of another child personally dealing w/ childhood anxiety and possible OCD. It irks me to no end that not enough doctors, the government, etc aren't taking a proactive role enough to figure out how/why these chronic infections are causing this. I had another good friend who works as a nurse @ a psych hosp. for kids and I just want to go in there and test all these kids for chronic infection and give them a fair shot at life. Sorry just venting b/c it really bothers me. Can't save the world but can help one kid at a time.

[kmom]

The plot thickens...Yesterday my friend's son's school nurse sent home a letter stating 5 kids in his class are home w/ strep throat. Her son is still very anxious, has a fear of vomiting and not sleeping well. He did say his throat felt hot even though it doesn't look red or white pus. But my DD had all the typical strep throat look and a mild pink throat at times while having positive strep cultures and my DS had no symptoms and a positive throat culture so it's good she's having him cultured. I just wonder if he's positive and put on abx for 10 days, what happens after. I guess it's the waiting game again.