Advice for the dr appt. tomorrow

[tantrums]

So after my doctor agreed over the phone that PANDAS is probably what we are dealing with, tomorrow is my DS appointment for strep testing. I was under the impression that the doctor plans a throat swab. I understand to not just accept a rapid test, but to ask for a culture, right? Now, I also want blood testing, right? What is it exactly that I need to have drawn just in case the doctor doesn't know for sure?

 

And some advice on how to handle this with DS - he is 6. Before all of this even started, he was obsessed with the "throat poke". That was ONE thing he would never let the doctor do. It used to take 4 people to hold him down to get a strep test - really awful. So every since he was small, any time he went to the doctor for anything, he would ask constantly, "are they going to poke my throat?". I only told him tonight about the appointment. He of course asked and I just said "I dont' know". It's the first time I ever lied, but something told me there would be NO sleep tonight in this house if I told him in advance. I dont' like lying to him, but I also dont' want to cause more stress to him. And knowing this is probably something he will see ALOT of now makes me feel awful

 

And meds - I understand I want to ask for at least a month, right? Azithromiacin seems to be the best course from what I'm reading? Either that or augmentin, but he had augmentin when he had "glue ear" and it was AWFUL!! I have it marked on his chart that he is never to take that again. Painful, awful diarreah, yeast diaper rash and eventually bloody diarreah, which was when I ended it. There is NO WAY he can take that long term.

 

And in the past two weeks since we saw the doctor, so many new tics, obsessions and behaviors have popped up. But I don't want to go into all of it right in front of him. He's starting to question himself what is wrong with him. And his biggest obsession is that he is going to die or have something wrong with him. I'm thinking it best if I write a list and hand it to the doctor. Does that sound reasonable? I figure that way I also am less likely to forget something.

[ajcire]

Tantrums.. it's Erica.. just with a name change. I'm so glad it sounds like your dr. is on board with the idea of pandas. Other people will be able to give you better advice on the medical stuff you are asking and maybe on the throat poke (my kids have been good at that.. me I had a hard time with having it done on myself last week)

 

Are you going alone to the appt or will your dh be able to go with you? I brought my mother with me because I wanted to talk to the dr. alone first so I had my mom wait with my son. If that is not possible than I would definitely put it in writing. In your son's case since he knows something is wrong you can certainly tell him that the dr is going to try to figure out how to help make things better for him. My son didn't/doesn't recognize anything is really wrong with his attitude/behavior so all I told him was that the dr. was going to try to figure out why he had the throat clearing/eye blink that was going on.

 

 

 

So after my doctor agreed over the phone that PANDAS is probably what we are dealing with, tomorrow is my DS appointment for strep testing. I was under the impression that the doctor plans a throat swab. I understand to not just accept a rapid test, but to ask for a culture, right? Now, I also want blood testing, right? What is it exactly that I need to have drawn just in case the doctor doesn't know for sure?

 

And some advice on how to handle this with DS - he is 6. Before all of this even started, he was obsessed with the "throat poke". That was ONE thing he would never let the doctor do. It used to take 4 people to hold him down to get a strep test - really awful. So every since he was small, any time he went to the doctor for anything, he would ask constantly, "are they going to poke my throat?". I only told him tonight about the appointment. He of course asked and I just said "I dont' know". It's the first time I ever lied, but something told me there would be NO sleep tonight in this house if I told him in advance. I dont' like lying to him, but I also dont' want to cause more stress to him. And knowing this is probably something he will see ALOT of now makes me feel awful

 

And meds - I understand I want to ask for at least a month, right? Azithromiacin seems to be the best course from what I'm reading? Either that or augmentin, but he had augmentin when he had "glue ear" and it was AWFUL!! I have it marked on his chart that he is never to take that again. Painful, awful diarreah, yeast diaper rash and eventually bloody diarreah, which was when I ended it. There is NO WAY he can take that long term.

 

And in the past two weeks since we saw the doctor, so many new tics, obsessions and behaviors have popped up. But I don't want to go into all of it right in front of him. He's starting to question himself what is wrong with him. And his biggest obsession is that he is going to die or have something wrong with him. I'm thinking it best if I write a list and hand it to the doctor. Does that sound reasonable? I figure that way I also am less likely to forget something.

[tantrums]

Erica - you confused me with the name change LOL!

 

Yes, he definitely knows something is wrong! The last thing I need is him coming up with any more ideas! No DH won't be going with me. He thinks he is just fine still - don't get me started on THAT So I will be alone and he is too young to wait outside alone. I think the doctor might also get how critical this is if she realizes I can't even talk in front of him anymore. So many little things popping up nearly every day now - I'd probably forget something anyway if I didn't write it down.

 

I have a wicked sore throat myself - GREAT!! So I have to see if I can get an appointment for myself as well. Wondering if I get a "throat poke" first that will help? I've always tried to do things like that. He had a huge fear of the eye doctor for some reason and I was due as well, so I scheduled us together and I did everything right before him - he sailed through.

 

We also have his allergist next monday and hopefully the neuro soon. Just the amount of appointments is bound to freak him out, which has me nervous. Haven't even tried to fathom how we're going to manage an MRI! I think he will have to be sedated, which we were trying to avoid by putting off the MRI for the Chiari. But I think there are too many questions now and it needs to be done.

[ajcire]

Oh, I understand. Notice I said my mother went with me, not my dh for the same reasons. Hang in there.

[colleenrn]

I know you feel guitly for not telling you son the whole truth about the Dr's appointment, but I think it was definitely in his best interest to tell him that. I would make sure they grow the culture out for a full 72 hours. You can do strep titers, BUT be cautioned that IF the titers are NORMAL, that means nothing in the diagnosis of PANDAS b/c many PANDAS children do not produce elevated titers. If he cannot take Augmentin, I would ask for Zithromax (azithromycin) first and a cephalosporin (such as Keflex or Omnicef) second (if for some reason he/she won't give you Zithromax).

 

It will be challenging to get a really thorough swab if he is not compliant, but make sure they try to get the best sawb they can (vigorously swabbing BOTH tonsils and the side of ther throat. It could be helpful to run the test as an upper respiratory culture b/c this looks for other streps besides just strep A ans other pathogens such as mycoplasma pneumonia, which can cause symptoms. They do the swab the same way, they just instruct the lab to run the test differently.

 

Giving your doctor a list of symptoms, I think , is a great idea if it will scare your son to talk in front of him.

 

Good luck. The fact that your doctor is aware of PANDAS is very encouraging b/c part of the battle that a lot of parents have to go through is b/c the physician is not even aware that PANDAS exists or even worse, does NOT believe in it.

 

Colleen

[colleenrn]

Just saw that you posted you have a sore throat. Definitely get a throat culture (72 hours if rapid is negative) b/c often another family member in the house HAS STREP while the child is exhibiting PANDAS symptoms. You may want to be safe and culture everyone in the family.

 

Colleen

[thereishope]

As for the appt, my then 5 year old was the same. 4 nurses and his dad to get a throat swab. All I can say is to be honest with your son and know there will be a fight. Trust between parent and child is important during this. Don't lie. I am so sorry that is my "advice" but sometimes it's going to be that way. We did usually go for ice cream or something afterwards.

 

But the great news. Now that my son is doing well, he "allows" them to swab his throat without kicking, screaming, ect. He even opens his mouth. Granted, he'd rather not have it done, but wow, what a difference. He's 6 now.

[peglem]

I know he's young, but it might actually help if you can very simply explain to him about PANDAS, and that you think this might be what's happening. The doctor needs to do the throat swab to see if the strep germs are there. You know its hard, but need him to be very brave. Try to include him in the discussion with the doctor so he feels more in control, instead of things just being done to him. Our kids have a lot of things that just happen to them. Just a suggestion- of course you've been living with him and know best.

[Suzan]

When my dd was younger, her doctor tricked her into a throat swab. He got her all relaxed, told her he was going to tickle her, made her laugh, and then BAM! he swabbed her. She has never forgotten and never forgiven anyone for that experience. Now, she has to be held down by a few people and kicks and screams and it's practically impossible to get a swab. I don't know if I'll ever forgive that doc either. She didn't even know what to be afraid of at that time.

 

I agree that keeping him from the truth tonight to avoid anxiety is good but during the appt be honest right before. I would not let any doc trick these kids. You never know how it will backfire. If she has to have another one, I hope to be able to reason with her about how the swab will help her with her eating or whatever her primary symptom at the time is.

 

Good luck and keep us posted.

 

Susan

[EAMom]

So after my doctor agreed over the phone that PANDAS is probably what we are dealing with, tomorrow is my DS appointment for strep testing. I was under the impression that the doctor plans a throat swab. I understand to not just accept a rapid test, but to ask for a culture, right? Now, I also want blood testing, right? What is it exactly that I need to have drawn just in case the doctor doesn't know for sure?

 

re blood testing...most people/docs would want to do strep titers (ASO, anti-dnase b ) . I would wait on doing these (unless your doc wants to draw blood for other reasons/tests) since if the throat culture turns out positive, the titers are NOT needed (the purpose of titers is to look for evidence of strep, if cultures are negative).

 

If it turns out you do need blood tests...ask your doc for an rx for EMLA cream. You can apply this (I forget...40 minutes? b-4?) before the blood draw...it numbs the skin so your child won't feel the poke so much.

[tantrums]

Oh I will tell him before the appointment! Didn't mean to sound like I was totally going to trick him - Yikes! Just didn't want him stewing on it all night. I will explain it to him once we have some confirmation and concrete info I think. Two weeks ago, the doctor was thinking Lyme or just OCD, so I'm glad I didn't tell him that - KWIM? He never had an overly bad experience with a swab. His first ped was FANTASTIC and was the only one he'd let eventually do it. He will let them do it now, but he will freak out about it anytime he gets sick asking over and over and over. In fact, I wonder how many times he's HAD a sore throat and wouldn't tell me

[Debbie1]

Given your child's resistance to throat cultures, you might have a hard time with this advice, but...

 

My kids will only get their throat cultured while lying down. A nurse once clued us in to this trick - it helps to prevent the gag reflex. Now my kids willingly get throat cultures - they just insist on lying down for it.

[tantrums]

Oh thanks - I'll try that. I have a really bad gag reflex myself. In fact, my biggest fear is the dentist LOL! So I can relate and I understand that he hates it. It IS a nasty feeling. Now that he is older, before this all started, he was getting better with it. Hoping that reason will still prevail tomorrow and he will cooperate. I'll NEVER forget two years ago when he had strep literally 4 days after my first back surgery and I insisted on going with DH to take him to the doctor. The nurse told DH to hold him and DH just couldn't figure out how to do it. He said he couldn't. He didn't understand they meant - REALLY hold him down. I got up to do it, got on top of the poor kid and the nurse pulled ME off. What a scene! I was back in bed for days after that But when his doctor came in, he let him do it. He was a WONDERFUL doctor and DS loved him!! We moved, that's why we don't see him anymore. He did awesome with the H1N1 swab. He PA was amazed he was able to get it in all the way. I just don't know anymore what we will be able to do - what he will tolerate or what ramifications there will be later. I'm sure you all understand.

 

I'm just getting so nervous!! I mean, the doctor said over the phone, she thought PANDAS was a possibility and to bring him back for the strep testing. But was she just appeasing a frantic mom? Am I going to get in there and get the brush off? I DO still have the allergist next monday and I really feel she is an amazing doctor and I would bet money she would be on board. She's already been saying something isn't right - he has allergic responses yet she cannot find a single thing he is allergic to. She had already alluded to some sort of autoimmune.

 

I'm probably WAY overthinking. Something I've been doing entirely too much of this week. One step at a time. Quick steps, but one step...

[tantrums]

Do we all need to get checked then every time we have a sore throat? I tend to get them a lot, but they typically will go away after a couple of days.

 

What I'm thinking is - my doctor has probably heard of PANDAS, may have researched it between our phone calls (she seems VERY good and invested in her patients spends a LOT of time with us) but may not necessarily know how to prescribe for it. Realistically, we probably aren't going to get this right the first time, are we?

[EAMom]

I wouldn't bother doing ASO titers on family members...but I would definitely do throat cultures. If a family member has a positive ASO that doesn't tell you if that was a past (even 1+ year ago) infection or if there is something going on currently. A positive throat culture will tell you if you need to put brother or sister on antibiotics NOW. Also, lots of kids with positive cultures don't always have a positive ASO (mine didn't). So, a negative ASO has a good chance of being a false negative.

 

 

Our younger dd turned out to be an assymptomatic strep carrier (cultures positive, no symptoms) and our pandas dd will react behaviorally when her sister is positive. When PANDAS dd was very ill with pandas anorexia, things didn't get really better until 1) we cleared sister of her strep with Azith (augmentin didn't work) 2) we put PANDAS dd on Azith 250mg/day (Augumentin, amoxcillin, ceftiofur which is a stronger version of keflex all didn't work).

 

We'll test anyone when they have a sore throat. We ended testing sister (the assymptomatic carrier) about 1x a month during the school year "strep season". She was positive in Nov. and again in late Dec (she cleared in between)...both times after getting strep notices in school. So, that is another time to test...1-2 weeks after a strep notice. Be sure to test them 2 weeks after finishing a course of abs (for the siblings that aren't on long term abs) to make sure they've cleared.