Advice for ENT visit

[faith]

I don't see veins on my tonsils,maybe on my 2 kids that still have then? I can look later. My son turned 6 in Sept.

 

The hoodie thing. What does he do if you tell him to wear a hat instead or nothing on his head? Does he ever take it off when he's out of the house? I just have to ask becasue one of my son's things was always having to wear his hood while out of the house. Even in stores.

 

As for the eating, besides the Chinese buffet, have you "analyzed' what he does eat? Is it mainly food he prepared. Mainly cold food? Again, this is just a personal thing with me. My son had eating/food problems with exacerbation #2. I think any PANDAS child (or suspcted of PANDAS) needs to be watched when food intake seems lower than expected. With anorexia and other food problems associated with PANDAS, it can get scary. It took me a bit to figure out why he wasn't eating. I think I still don't know the full answer.

 

I'm glad to hear his gland aren't overly swollen. I read an article about some disease and it scared me. Sometimes it pays to read the newspaper, sometimes it makes you paranoid.

 

He wears a hoodie everyday, but he also wears a hat everywhere with it, its just the look and feel of the jacket with a zipper that he likes. we have a hard time getting him to lose the hat, its either those baseball caps with the straight rim and they wear it slightly off the the side? (eye roll) or he has a knit cap for the winter that also has the rim. I think part of it is 'the look' and being 'obsessed' with the look, and part is the comfortability of these type clothes for him. there is nothing he just puts on like its no big deal, its all kind of part of his quirks and obsessions, the hat, the hair, the jacket, the t-shirt, the pants, the socks, and the type sneakers, right now its heely's. oh and now its the underwear! suddenly its gotta be boxers. all of this could really drive me crazy if I tried to change it up.

 

I would say he goes in spurts where he likes to eat, and then he falls off and goes for a time where I see he's not eating much. I don't think I've really tracked the times this goes on, but its been this way since a toddler. You may have something there, maybe these times not caring about eating do correlate with exacerbations, but the thing with me is that prior to hanging around on the PANDAS platform, I mainly focused on tics, that was what I was vigilant about, so I may have missed alot of stuff. I havn't been good about journaling either. he's kind of all over the place, he seems okay with take out like taco bell and pizza, but won't eat pizza they make at school. mostly eats thing like pasta or soup that I make. can't tell you how much he doesn't really care for. no rhyme or reason. most normal dinners I have to prompt him to eat, its always been like that, even up til a few years ago, I was the mom following her kid around with a loaded fork trying to get him to eat. At one point when he was younger my mother tried to tell me he had an eating disorder. it was kind of funny hearing it in her little italian accent, I didn't even know she knew what an eating disorder was!..

 

I really wish I could figure this guy out too. I'm thinking maybe I should see an endocrinologist and see what they say.

 

Faith

[smartyjones]

I really wish I could figure this guy out too. I'm thinking maybe I should see an endocrinologist and see what they say.

Faith

 

 

faith - can you remind me why you think it's not pandas - or why you're unsure. when i read what you write, of course i'm no expert but it sounds like pandas to me. he had high cunningham #s, didn't he?

kathy

[Suzan]

and by the way, his laugh for some reason is really annoying me, like its changed somehow. anyone ever see this? its like when he laughs, its a full on really loud exaggerated cackle, he's done this sitting right next to me and damm near deafened me...

 

My dd8 laughs when she does not feel well and it's a very specific laugh. When she explains PANDAS to people, that's one fo the symptoms she describes. Her's sounds different that the way you describe your son's but it is very loud and very annoying!

 

Susan

[faith]

I really wish I could figure this guy out too. I'm thinking maybe I should see an endocrinologist and see what they say.

Faith

 

 

faith - can you remind me why you think it's not pandas - or why you're unsure. when i read what you write, of course i'm no expert but it sounds like pandas to me. he had high cunningham #s, didn't he?

kathy

 

I don't really know. probably because he's had these symptoms since 3 1/2 (he is now 10 1/2) so I've always looked at him as tourettes with comorbid issues. I've not really seen a full on 'exacerbation' from strep but one time when he was 7. he only responded to abx that one time, subsequent trials didn't really alleviate his tics (altho they were only 10 day courses) I was always focused on the tics I guess and its only since these past few months that I realized he has all the symptoms reported here. since that early time, we've waxed and waned, but have never had another documented strep or high titers despite several different testing over the years. As far as illness, he gets a virus with fever, maybe some vomiting maybe once or twice a year, but it lasts but a day. I understand that it is said that it may be one strep that sets it off and virals could do the rest,but I guess if I had either positive strep or the high titer, one of the other, at least I'd have something to go by. what if I'm just reaching? I realize the docs we've seen are okay with treating as such, but I guess I just don't feel like anyone has sat me down and said "your son has PANDAS and this is thre reason why" they didn't dispute it, but rather went along with it. does anyone else feel this way? .....I think we have to admit that these docs don't really definitevely know, one of them has even said its a hard diagnosis to make. guess because I'm entering this game kind of late, I have alot of lost years in the beginning where I didn't look at everything, and all the symptoms, and how it might relate to illness. back a few years, the criteria was 'sudden onset' and I couldn't relate to that, how could you when your child starts blinking and ticcing at 3 1/2? you pray and they go away for a while, but then they come back. over the years, I could never really put him in one particular box, it seemed he had everything, yet not enough of each symptom to label him x or y or z. .... his cam k was 179.

 

I'm sorry I'm so difficult.... .................(okay that's the wine talking........ )

 

I appreciate your input.

[faith]

and by the way, his laugh for some reason is really annoying me, like its changed somehow. anyone ever see this? its like when he laughs, its a full on really loud exaggerated cackle, he's done this sitting right next to me and damm near deafened me...

 

My dd8 laughs when she does not feel well and it's a very specific laugh. When she explains PANDAS to people, that's one fo the symptoms she describes. Her's sounds different that the way you describe your son's but it is very loud and very annoying!

 

Susan

 

oh goody, someone else has a loud laugh.... he does have a cold right now, and had a sore throat a couple weeks back, it kind of started around then I guess. Susan, this is so loud and annoying that I can't help but tell him so-- I told him to knock it off, you sound like a hyena!....

[thereishope]

If only you could read some of your own posts from our perspective, you would see how you desribe things and how it sounds like PANDAS. Sometimes when you live it, things become a little blurred. Afterall, it becomes life.

[thereishope]

I'm still drawn to the whole hood/hat thing. That sounds so much like my son. I understand what your saying, but I would still wonder if there is something else 'hidden' in that behavior.

 

For my son, I don't think it was sensory but I wonder if it "protected" him. When the nurse once tried to take it off he started to get upset. I just said it was like his "force field" to try to give some explanation to her. He never voiced why he did things. I don't know if he knew why he did things.

 

The eating think in kids can easily been seen as being picky. I have some of the pickest kids in the world. My older son is turning 9 next month and he won't eat the lunch in the cafeteria. I have to make it. One question you can ask him (if he won't get upset) is if it hurts him when he eats. Otherwise, just start making little mental notes here and there. He ate w/o prompting when... scan the picture. Who made the food, was is hot or cold, what was the texture of the food, where was he, who was around. It's sounds like a lot but if you start to see a pattern, it may hold the key.

[Debbie1]

Hi Faith,

 

We went to the ENT because Dr. L. and Dr. T. both recommended that we get tonsils and adnoids removed. My children have had many, many strep infections over the years, but did not meet any traditional ENT criteria to have the tonsils removed. We have a wonderful ENT who was willing to do whatever the neurologists recommended. His practice has seen many PANDAS patients before.

 

When the ENT looks in the throat, he can see signs of previous infections (strep or otherwise) on the tonsils.

 

Your pediatrician should be able to request bloodwork for Epstein Barr. While you are getting bloodwork, get tested for lyme if you have not already, and I would add mycoplasma pneumonia (sp?) based on recent posts.

 

Debbie

[faith]

Vickie, you have a point there, I guess if I was reading these from objective view, I would probably see it more clearly. I definitely see the symptoms, they are all there and have always been (even tho I didn't really look at things like separation anxiety as a symptom, but it was there big time). I just don't understand why we have no evidence of strep, that is what makes me insecure. I wish like anything that I had not dropped it back when he was 7 and did have the strep, but we did go to Infectious Disease doc who knew all about PANDAS and being that our titers were low, we were sent on our way, the rec was "no further indications re PANDAS at this time."

 

The hat thing. yes, there is more to it. I don't know if it is exactly sensory, I'd actually say more 'obsessive'. ... now that I think of it, the clothing thing may also be a way to cover up his skinnyness, because he wears everything large and baggy, but it is also sensory, because he complains about pants that 'get hair on them', he didn't like zippers, or if the jacket has a 'rough' interior. .......

[faith]

Debbie,

Hopefully this doc will be able to give me something to go on. but at least you have a child that gets many strep, I havn't seen that. if he does have it, its not being detected. you have hd positive swa/cultures and/or high titers? in your ENT in NY?

 

 

I just want to add for anyone else, that I have gone the route of natural, no meds, dietary, supplements, allergy, kinesiology, chiropractic, I've explored every angle. .. yet here I still am, so maybe there's a clue right there....

[Debbie1]

Debbie,

Hopefully this doc will be able to give me something to go on. but at least you have a child that gets many strep, I havn't seen that. if he does have it, its not being detected. you have hd positive swa/cultures and/or high titers? in your ENT in NY?

 

 

I just want to add for anyone else, that I have gone the route of natural, no meds, dietary, supplements, allergy, kinesiology, chiropractic, I've explored every angle. .. yet here I still am, so maybe there's a clue right there....

 

Faith,

 

Yes, my children have a history of positive throat cultures (although we think we may have missed some as well) and high titers. In the year that my son's PANDAS first surfaced, he had six positive throat cultures in that year alone.

 

My ENT is in NY. PM me if you want the contact info. We had a great experience with him.

 

Debbie

[CSP]

Hi Faith,

 

Just wondering if your son eats very little or he eats normal and just burns it off quick? My son did say since his T&A he can tell his food intake is larger then before the T&A. I feel his tonsils were making him think he was going to choke so he would not eat until he was full, just chewed his food a lot and then he was done. Or he would feel something and ask if he was going to choke and die.

 

So when he said, he can feel that more food goes down now, I know he does not feel like he is choking.

 

Dr. did say his tonsils were larger then he even thought after they were removed.

 

CP

[faith]

Hi CP!,

he pretty much eats like a bird, but sometime eats normally, but not the way I see other kids eat.

 

Your son's tonsils were big, now I forget, but did he have problems due to it? or was this just to see if it helped any with the vocal?

[thereishope]

My son's hood/hat thing started out simply that is was cold and he had to wear it. It then morphed into OCD. It was hard to get him to overcome it.

[CSP]

Hi Faith,

 

It was because the ped. thought it could not hurt to take them out because we knew it could help with the sleep apnea. It was kind-of a "not to sure if we have PANDAS or not, and he thought tonsils were large. He was set back on how large after he took them out.

 

CP