thereishope

I'm so sorry! Along with you, let's be hopeful it was caught quick and be able to be controlled. Can you give her Ibuprofen or a natural anti inflammatory?

My son has had 3 strep triggered exacerbations. We caught them all pretty early. We've been blessed thet he has recovered with antibiotics, a steroid burst in his worst one when he was threatening to go to heaven and not eating, and a whole lot of time. In his third exacerbation, he did have residual OCD we had to overcome as well. If you haven't checked family members yet, do so. We also found out my two other children do not get symptoms of strep, yet they both tested + on a rapid during my son's third exacerbation. We tested them every time he had strep. When one has it, we all go in. Also, retest anyone who has strep 3 weeks later to see if infection has cleared. If the PANDAS child is still on antibiotics, they may get a false negative, but there are kids on here that have tested + even on abs. Wow, thanks so much Vickie! They do sound similar. Do you mind sharing what treatment(s) have led your ds to wellness? We are just at the beginning of this journey. We only heard about PANDAS in August and I began to realize how much of ds's behaviour is OCD. He has high ASO, and cunninghams at 176, so now I'm convinced we're dealing with PANDAS. We just started prophylactic antibiotics (500mg/day amoxicillin, which is NOT helping). We have a consult with Dr. T on Tuesday and I"m anxious to know what he will suggest.

How bad is it? Could it be infected? If your mom is willing, have her call the dentist tomorrow and say that it hurts. Can she prescribe an antibiotic in case there's an infection until she can see you next week.

With OCD, that is what often happens...once you give in to that urge/need you can just move on. It's when you aren't able to do it, are stopped from doing it that the anxiety occurs. With your daughter, if she has to do something 3 times and you tell her she can only do it once or not at all, what happens? Can she rather quickly get over it and move on or does it overtake her and she must do it. As for speech and OCD, like you said, during evals and therapy it may not be seen. A lot can be hidden. My son quickly learned to hide his OCD even at 5 years old. Also, parents may hide it. A speech disorder is one thing, but having a child with possible OCD comes with a lot more stigmas. I can't remember what the slp saw that had her realize what was going on. I was also open with them with what was going on at home, though.I know the itinerant (sp?) teacher noticed he was acting different in the classroom, but I think with the slp, she began to see he was refusing stickers that she gave at the end of sessions ( I can't remember why, possible contamination fears), I think he always wanted to walk the same route back from the speech room to my meeting place upstairs and got upset if she went a different way. Little things that can easily be overlooked.

Well, if it makes you feel any better, my son actually had a lot of what you listed. He was fixated on the number 4, he threated to jump out of the window and throw himself down the stairs, he refused to touch his younger sister since she was contaminated according to him, bees was a bad one, He had hallucinations about bugs twice, as for the bathroom, he was different in that his thing was he didn't want to wipe himself since he didn't want to touch the poop ( once I realized what was going on, I did not participate), he also was once convinced poop got in his mouth (it didn't) and that he couldn't get it all out. That was a fun one since it occured at a relative's house. As for the contamination...oh, yes...the shrieking, eye bulging, red in the face if he even thought you touched your face or mouth. With how he was with his sister especially....it was bad. If he thought you touched her, he would freak. Positive....he's better now. None of that remains. Never give up hope.

Actually, my son's drawings stayed rather intricate even during exacerbations. He was 5 years old as well. He'd spend over an hour+ drawing, then there were times he would either take scissors and cut up the picture, or he would then take a black crayon and color over all the work saying it was night time in the picture. My son keeps everything he creates. He says he loves all of them. I believe him. He puts his heart and soul into them. As for the scraps your son keeps, that's hoarding. My son also had a time when he became near agorophobic. I saw the foreshadowing of it and then started to force him out the house. Literally picking him up and forcing him. I would sit in the backseat while my husband drove to make sure he didn't unbuckle himself trying to get out of the car and get home. When out, does your son insist on wearing a hat or hood? That was my son's transition crutch when overcoming staying home all the time.

I'm happy to hear all is well! After recovery, life becomes a balancing act. You try so hard to live normal again, but you know you have to remain on guard about illness, symptoms,and the worrying rarely stops. May you and your family have continued health. Thank you for the update!

You might find this thread helpful Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

I was just googling speech, sensory, if they are common and came across this website http://www.cherab.org/information/adhd-speech.html I was surprised to read that speech disorder are reaching an epidemic proportion. I had no idea! I did read this I wonder if that's what the slp and OT meant when they said it is common. Maybe I read into it too much.

Having tonsils out is suppose to reduce your chance of strep throat, even though some on here still get strep throat and some go onto to even have chronic strep throat. My son had strep throat one month after surgery. However, I wouldn't think t and a surgery would lower chances of strep in other parts of the body. Strep can occur in many places...gut, sinuses, ear, skin, anal, vaginal.....

My son didn't have sensory or OCD when he was first screened by them at age 3. Nor did he have any when they first started therapy at age 4. That's why I knew the new problems weren't associated with his speech or "expected". But I was surprised when the OT told me that it's not uncommon. That statement just always stuck with me...hence why I asked.

Question to the slp's....my son's early childhood slp and an OT that screened him said it's not uncommon for kids with speech disorders to have sensory issues and even some OCD. Is that true? That's how the originally tried to reason his OCD when it first surfaced and we had no idea what was going on. Obviously, it was PANDAS and not due to his speech.

I don't have much more to add than what the others said except to make a comment about the rages. The fact that you went a day without any to a day with horrible ones can be expected even with PANDAS. When you live with a child that has rages, you tend to walk on egg shells not knowing what will set them off. Honestly, it could be one day all was well and the next, something just sent him over the edge. As for food dyes, I have read about kids having behaviors greatly affected by food dyes, red, blue , and yellow. Not all kids were PANDAS, but kids can have more than one issue or sensitivity. You may have said this, but did you have allergy tests run on your son? I think food dye sensitivies can be run too. Kids' PANDAS and PITAND symptoms can ramp up when allergies are activated. I can see that being the same if a child is allergic or highly sensitive to dyes. There are kids on here that also have a sensitivity to salicylate foods.

This sentence reminds me of a recent conversation I had with a neighbor. I was explaining IEP's, speech, etc and she said that she missed out on all the cute ways kids talk and mispronounce things because her daughter always spoke perfect. I just looked at her and said " Be happy. When my son went to school for the first time, I was fearful they wouldn't understand him if he needed to use the bathroom". I am happy I no longer get that glazed look from adults when my son speaks. I'm sure you've had it before...where they pretty much ignore your child, look over them to you for a translation like they don't exist. I am confident in saying my son's speech was not a result of PANDAS, but perhaps it was a foreshadowing? Not even sure what I mean by that, though. But I can see how speech can be affected. Like I mentioned earlier, once in therapy my son made progress in record speed. Even the slp was suprised. Then during the exacerbations, progress haulted. Once recovered, lightening speed again. My son dropped ends of some words, beginning of other words, out of the ordinary substitutions, etc.

Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

Just wanted to post that I received an email from Diana P stating that whomever told you that statement was mistaken. That was not said at the meeting. She tried to post herself, but was unable. Just wanted to clarify things for correct information.....

I like that one!

I'm sorry your son (and you) are going through this. I want to start by saying my son did not have tics. As for the allergy meds, each child is different. When I first tried Claritin, on day 11 he became very hyper and OCD ramped up from it. So, there is a chance the Zyrtec can be causing the worsening of tics for your son. If you were to change the Zyrtec or spray, I'd change the Zyrtec first. For my son, he does well with Benadryl (he does not get sleepy) or Natural D-Hist Jr. As for the strep at the end of September, maybe it didn't clear. You could take him in for a strep test, but remember you can get a false negative while on antibiotics. Did everyone else in the family get tested when you found out he had it again?

Poor guy! My son would have a flare a few days post fever (about 3 days post). Luckily, for him it wouldn't be as bad as a strep triggered exacerbation. Much more minor. Now he doesn't have setbacks. I would give my son Ibuprofen now and a few days after fever. Try to keep any inflammation down before it starts. Also good ole rest and sleep will help. btw...I wouldn't have suggested a steroid anyway. I'd save that for when the chaos is already present and not going away...not as a preventative.

A lot of people, and kids, in the general public can have Myco P and they never go to the doctor. It can manifest as a harsh cough that many dismiss as a virus that will pass or allergies. To make things worse, even if you do get physical symptoms, like a cough, there's a chance you won't have that symptom until something like 6 weeks after you contracted it. It's hard to get any kid to avoid it when you think about it. It's sneaky!

When my son did a 5 days steroid burst. It was on day 4 (after 3 full doses were in him) that we started to notice an improvement. For him, it was more that the a bad downward spiral stopped. That, in itself was very good improvement. For him, it was not short lived, but it jump started recovery. He did not go back to 100% himself shortly after following the steroid, but as I said it stopped the bad spiral he was in and it seemed help lay the foundation for recovery. That was the worse exacerbation he had. I think my point to this is every child and how the will respond is different. Also, for some kids, you will not see your child 100% back to themself with a steroid.

I can only tell you how I might approach this. First, don't explain which foods would make him fat vs what won't right now. You don't want him to start overthinking everything and stop eating completely. If he would go to the store with you, for now you can let him choose foods with you. When my son was having his eating issues, a steroid burst is what helped. My son was to the point of eating nothing and wasn't even phased when I had my "moment" and finally explained what a feeding tube was and how he needed to eat. Hindsight, I shouldn't have said that but I was panicking. Anyway, the thought of a feeding tube didn't even phase my then 5 year old. He still wouldn't eat. Just don't wait too long on tackling this head on. I also fear the longer they restrict food, their body will become accustomed to it. They may stop getting the hunger feeling, feel full much faster, get used to the feeling of an empty stomach. It's scary stuff.

My son has a speech disorder that was labelled as a severe phonological disorder at 4 years old. He had a lot of issues and the slp did have to rule apraxia, but he did not have it. Currently, he is doing very well and I even wonder if this year or the next may be his last IEP for speech! Side note, during his PANDAS exacerbation, all progress in speech stopped. Once recovered, he was back on the fast track for reaching goals.

Yes, being exposed to strep can worsen symptoms even without infection. Many on here call in the "canary effect" or compare it to a peanut allergy where even just being airborne can cause symptoms to appear. In our family, if my kids are directly exposed to strep, I take them for a strep test since they are all asymptomatic. If my son ramps up, I would take him in as well. Now, you can get a false negative strep test while antibiotics, so that is something else to remind the doctor of. If you want, you could wait a few days and see if he improves on his own, but if he continues to worsen or no improvement within a few days, I vote for taking him in.

How old is he?