thereishope

I know there are slp's on here so I feel weird even saying this, but I have been told that sensory problems, OCD, and more actually are not uncommon to have when a child has a speech disorder. So, I suppose we should not be surprised that speech, in any way, would be affected during an exacerbation. My son has a speech disorder. He usually gets to his goals pretty quick. when in an exacerbation, all progress in speech pretty much stopped. I definitely saw a correlation. When he was considered recovered, he was back to hitting those goals left and right.

If I notice my son getting very stuck, I will say in a soft voice, "Think about what you want to say". Sometimes that snaps him out of it. But I don't do that every time, just when he's really stuck.

I wouldn't be surprised if there is a correlation. People's behaviors do change with a full moon and other medical oddities happen. For instance, there will be more babies born on days when there is a full moon.

2 of my kids started with a fever only that lasted a day or two. Then it morphed into cold like symptoms. Now I have what they had and I know it's a cold.The only person not sick is my PANDAS son! Anyway, keep up with the Ibuprofen for a few days. With fevers, sometimes PANDAS symptoms will worsen a few days after the fever. Continue with the IB to keep any impending swelling on the basal ganglia down.

I don't think my son would repeat a single sound over and over until he got it out, but he would repeat a block of words or phrase before finishing his thought. For him, it was PANDAS. However...he is now in kindergarten and I know at least one or two kids that speak like that. So, for some, it's just part of them. With my son that came and gone with PANDAS. It's almost like their mouth can't keep up with their thoughts and they get overwhelmed.

Here is the link to doctor that some have recommended. They are not necessarily "PANDAS experts". http://www.latitudes.org/forums/index.php?showtopic=6428 There are only a handful of doctor that are considered the "top doctors" in the world of PANDAS. They are good for diagnosing and treating. They are the Dr K you referred to, Dr Latimer, Dr T, Dr Bouboulis. I am sorry, but none are near TX. Some do phone consultations and others travel to them. They may willing to work with your local doctor and guide them through possible treatments. As for the strep carrier, is it the PANDAS child? If not, if you have an understanding local doctor that is willing to listen and work with you, they can help you figure it out and hopefully treat the carrier, erradicate the strep, and maintain health. Strep carriers needs stronger antibiotics and I believe for a longer period of time. 3 weeks after finishing all meds, you take the person back in for a follow up strep test to make sure they are in the clear. Prior to that 3 week mark, they run the chance of getting a false negative. It is important for you to have a doctor that does not have the mentality that a strep carrier does not need to be treated.

I had a doctor tell me once to push down on the mark. If it turns skin color momentarily then goes back to red, it's hives. Don't know if that's true, but that's what they said.

A geographic tongue is just a tongue that isn't smooth. It's kind of hard to explain. It's not pitted or anything, but it looks like there's some areas that are flatter than the rest on the tongue. So, it looks like a geograhy map, hence geographic tongue. This is not caused by an infection, or virus, or anything. It's just the way some people are. They can develop it at any stage in life. My husband has this. It isn't bad unless he eats acidic foods. Then it worsens, burns, and bothers him. So, he has to watch how much OJ he drinks, how much pineapple he eats, etc. The dentist said he can use a tongue scraper when it acts up and that might help. I think I read you can get a mouth rinse to help to, but he's never needed that. Vickie, What is geographic tongue??

Welcome to the club. It seems like the most successful antibiotics that are used on this forum is Augmentin and Zithromax. There are a few who have also cited success with Kelfex and a couple on Omnicef (maybe only one on Omicef?). You said your child is allergic to Augmentin, so I'd discuss Zith with your doctor. Zith can get to intracellular strep. For others reading this...some kids do get better on amoxicillin and penicillin but I haven't read too many that have.

Weird. I wonder if they ran the wrong test. Good thing you realized that!

Fixit, is your son the one with the geographic tongue? Oh man, everyone's blurring together again! And...he has hives while on Benadryl?

We have not done offical allergy testing but the ped did wrote testing down as a possibility in his med file. I know he has spring allergies, but they seem to vary year to year in severity and what the symptoms would be. The severity could be due to how fast we start meds, but I don't undersatnd why the symptoms would change. His spring allergies strated to surface I think around 4 years old. Same pattern as my other son. The ped think he's probably allergic to dust mites too. He thinks his possible allergy to them is what made a sinus infection set in a couple months ago. I wouldn't be surprised if he was allergic since my husband is and my son's sinus infection did finally clear up after 2 rounds of abs and me really dusting and cleaning the house. No other allergies to mention.

Sorry, I know nothing about sublinguals. You guys will have to teach me about that. According to my liquid dosing chart for Ibuprofen, an 80 pound person gets 300mg. However, sometimes you can give more. You can always put a call in and ask if 400 mg is okay. Unless someone on here knows? If you stay with the 400 mg, I probably wouldn't do that long term. If it means anything, looking at it from allergy aspect (not saying allergies is the cause of the setbacks, but I look at all angles), when my son was VERY early on in recovery of exacerbation #3, allergies hit and boy did they knock him down. His PANDAS went over the top. I was giving him Benadryl a few times a day and Ibuprofen a few times a day. Further on in the season, I was able to spread out the Benadryl more and eventually he only needed one dose in the morning. Also, it can take a few days to over a week to get the full effect of allergy meds. This year, I started the Benadryl the second I thought allergies were hitting. He seems to be okay with only getting it twice a day and his PANDAS symptoms are not surfacing from them! His brother's allergies, I waited for full fledge allergy symptoms. Sure enough, they hit him about a week and a half after I started them for my PANDAS son. Side note...my son does well with Benadryl, but some have said their kids get hyper from it (my son gets hyper from claritin). So, just keep an eye on it. Give it a chance to work, but I don't want to make it sound like it's the right med for everyone.

When my son did a 5 day burst it was in an October or November. He did not get sick from anything while he was on it or shortly after. I think I'd be more concerned about the lowering of the immune system if it was 30 days of the steroid. It's smart to do it over a break, even spring break.

This is me brainstorming, not saying any of these things are a problem with him... Ibuprofen...like you said maybe you weren't giving enough in the past. How much does he weigh? With my son, he gets liquid IB and by increasing it by 1/2 tsp (per direction of a dr) it made a difference. Itching on his roof of his mouth....either allergies or thrush. I had horrible itching on the roof of my mouth last night. I'm guessing it was allergies. Never had allergies before but I think I'm starting to get them since we moved to the Ohio valley area. Pollen and such gets trapped here. How does his tongue look? Does it have a white coating? Do you give him probiotics spaced out from antibiotics?

I think it's more of superficial, beginning part of a cavity. They won't drill deep. My husband had that and they didn't even use novacain. But ask and verify that.

Target pharmacy knows us by name. At one point, the pharmacist finally politely inquired and we explained about the strep part. Then he tells us whne he was a child, he was a strep carrier! Nice.

Remind the doctor that your son can get a false negative strep test while being on antibiotics and up to 3 weeks of being off antibiotics. yes, it's sad we need to remind doctors about these things, but that's how it is.

Let's hope it's temp and he'll rebound from this setback.Can he take Ibuprofen? Does that help? When you speak to a doctor, let them know about the dental visit. I remember, I think Lyme Mom?, mentioning the metal filling being ingested could possibly cause issues. Ask about that possibility to the doctor. Also, keep him inside for next few days with the windows closed to avoid to much exposure to pollen. How many days has he been taking allergy meds and which ones is he taking?

Both my PANDAS son and my non-PANDAS daughter have gotten hives with viruses before. Not with known strep, though. I've been told by more than one dr, that some kids get hives when they are sick because that's how their body is trying rid the infection? I know, for my kids, it was not a reaction to food or anything. It was definitely a reaction to a virus. So, your daughter is probably sick with something. The question is what. Or is she getting them from exposure only? Personally, I don't see the ahrm in doing a strep test. Besides, irritating the child, it's a swab. It doesn't run the risk of anything bad happening. I don't understand why doctor make a big deal out of a throat swab. Also, something to remember, is that PANDAS kids's bodies exhibit being sick different than other kids. Strep w/o symptoms. My son has had croup w/o the cough. Some kids have alergies w/o mounting an allergic response. Even with son's seasonal allergies...in the last 3 years, they had different physical symptoms of the allergies. Same time of year, same allergies, different reactions. One more thing.....with strep....the test may not come up + (even if she has it) until she's had it for 3-5 days. That's where I've found grief with swabbing with exposure. If they contracted strep today, they may not get a + test yet. You have to strategize the best time to swab.

Here's what I found about bronchitis... http://en.wikipedia.org/wiki/Mycoplasma_pneumonia Also, I forgot to add that ear infections and sinus infections can be caused by strep.

My son never had strep prior to the one he had when PANDAS surfaced. He had been swabbed before (NOT because of PANDAS like behaviors) and it was always negative. With my son, he had a sudden onset of PANDAS behaviors. Approx 2 1/2 weeks after the behaviors started we took him to the dr and they did a strep test because she once read about PANDAS (I did read about PANDAS online prior so I fibbed and said he had a sore throat so they would suggest swabbing him). We found out he had strep. Rapid neg, culture positive. My kids do not get symptoms of strep. So the behaviors in my PANDAS son is the only indicator to go in and get swabbed. My son did not have tics so I can't answer that question. btw...I think mycoplasma pneumonie is also called bronchitis. myco p is a known original trigger in some kids.

About steroids...Yes, some doctors use is as part of making a diagnosis and to see if IVIG may work. However, some parents on here have also siad that a steroid also aided in the overall recovery of their child too. I think there are a lot of factors whether a streoid would help with overall recovery. To my knowledge, there has never been a study done on steroids and PANDAS. As for the success/failure of IVIG. I never actually stopped and thought about a failure rate. After reading your post, now I'm actually thinking about it and I don't really know people who have done the appropriate dosage and not seen results. Granted, some the results don't seem to last and they need infusions more often and some have PANDAS resurface later down the road, but as a result of being sick again. When I actually stop and think about everything I've read on here, I definitely have read more success stories than failures. Again, antibiotics play a key role in all of this. Also, remaining strep free and infection free is very important to have IVIG remain successful.

My maternal grandmother (so my son's great grandmother) almost died from a strep related illness. Don't know what it was. It was pre-antibiotics.

There's a few PANDAS groups on fb too. But not very active. I think a good portion of us are "friends" now so that's how we communicate. Wanna be my friend?