thereishope

The breath will start to eventually smell. My son did awesome with his surgery. Didn't really even need pain meds immediately afterwards, but then when it closer to the week mark, he started to feel sore. So, if he starts to hurt again, give him pain meds. Push the liquids and let him eat what he wants. Remind me, was your son diagnosed with a tic disorder and you stopped going down the PANDAS path? I'm interested in the Keflex and it's connection to the decrease in tics. Everyone is dismissing it, huh? I wouldn't. I would explain the connection to your ped or neurologist and ask them to write out a longer script for it. Some PANDAS kids have had success with Keflex. If tics decrease with any abs, that a sign of PANDAS! One should not dismiss that. Sometimes it's just the case of finding the right antibiotic and being on for a long enough time. If he had a tic disorder, wouldn't the tics be involuntary? Why would he have to "think about it" in order for the tics to occur? Is he currently on any antibiotics or has the post surgery ones gone?

I've read that some kids on here have gotten + strep tests even though they were on prophylactic antibiotics. Also, take note, that some parets believe the proph antibiotic may have also give false negatives. I guess what I am trying to say that being on an antibiotic does not guarantee the child will not contract strep. I did not think of having him tested because he is on Augmentin anyway. I guess it would be a good idea just in case. If I can document him being + while on abxs, that might be significant when it comes to insurance covering further treatment, and/or a good piece of info on what antibiotic does the trick or not. Isabel

When it comes to OCD and tics, does anyone know why some children get one or the other ? Is it dependent on exactly what part of the basal ganglia is inflamed or is it more hidden in your family history or just "luck of the draw"?

I'm just curious, is Dr Cunningham running your labs as a favor or was she also curious as to what your results would be?

I'v heard not to take Ibuprofen with a steroid so that is something else to ask Dr Latimer. Because strep has recently been in your house, give him a little more time. Don't give up hope. Did you take him for a strep test when you found out the others were +?

Glad to hear she is doing well. Thanks for the update!

I'm gad it worked so well for him. It's weird to think something so easily accessible and "cheap" can help some of our children so much. I gave it to my son for the first time last week after reading this forum. I wasn't too hopeful and didn't tell anyone that I was trying it (did not want to get anyones hopes up). It was amazing, within a couple of hours my daughter and husband both came to me in excitement "he's Back! what happened?????" He was able to change his clothes (he was wearing the same clothes for 6 days) and he got into the car without any problem. I have been giving it to him every day for the last week- it doesn't take alway ALL of his symptoms but definately helps reduce the severity. I have only needed to give him 1 dose a day- late morning, early afternoon- school has been out, so he has been sleeping in- and relaxing at night. It did wear off one night and symptoms returned. He "lost it " running around house screaming and hitting people, throwing things, kicking and beating his head against the wall. It took about an hour to calm him down, ALL over a lego toy. I am so thankful for this website for informing me about Advil. I wish my doctor had told me about this years ago. I hope it continues to work for him. Good luck.

I agree. that is also why I am excited about Latimer, Dr K and others speaking at that conference. I think the PANDAS community and autism community has a lot of similarities and we can really help each other. When my son was 5 1/2, the psychiatrist said she had to do an autism screening based on what his "symptoms" were. He never showed signs of autism or Asperger's through infancy or toddlerhood. But since so many problems were present at once that warranted a screening. I know others on this forum have been told by someone (health care prof, school, etc) that their child showed signs of autism when it was actually PANDAS. Currently, my son is well and the no one would ever think of labelling or needing to screen him for it. But also, if you present severe at a young age- the dx of autism is likely applied.....then NOBODY will look at anything else!

I haven't gone down that path, but wanted to wish you the best. Let us know how it goes.

I also think when symptoms are mild, parents are more willing to wait it out. "I'll give it one more week". Then the parent becomes so used to the new behavior, it is no longer viewed as out of sorts but is considered the new norm.

I am very happy that when you type "PANDAS" in google now, this forum pops up a lot. When I first searched for it, the NIMH website was what popped up. I remember reading about PANDAS and thinking my son did not have it because he didn't have strep. Little did I know he actually had a + , active strep infection. He just didn't show symptoms. I actually lied to the doctor and told them he had a sore throat so they would swab him just in case. After his rapid came back negative, our next step was suppose to be to a psychiatrist. Then we got a call that the culture was +. I shudder to think where we would be now if we never found out he had strep.

Yeah, I know. I was kinda thinking that.

double post...sorry.

I've actually experienced different things with Ibuprofen. I once tried it during my son's second exacerbation when he was very bad off. This was before I was part of this forum and the idea using Ibuprofen was really being spread so I didn't know what to expect or if it would anything. Anyway, during that time, I did not really notice a difference with the use of Ibuprofen. He went on to do a steroid and that jump started recovery. I think he just had too much inflammation for the Ibuprofen to control. Fast forward to a couple of months later. He was having setbacks with allergies and then a cold. When he had the viral setback, his PANDAS wasn't as bad as a strep triggered exacerbation. I tried Ibuprofen again. This time it helped. His main issues was some slight OCD resurfacing, irritable, short tempered, emotional. I say the Ibuprofen helped a lot. It was an obvious difference. It would take 1/2 hour to get in his system and I would see it coming back at the 5 hour mark. It was like clock work. Even now that he is recovered, if I ever see him on edge, I will give im a dose of Ibuprofen before school. I admit, I don't know if he needs it, but it makes me feel more comfortable sending him. I have never heard anything negative happening at school this year. Currently, I only give Ibuprofen when I see a virus settling in or anything that makes me worry even a little. I want to try to beat the inflamation before it happens. So, I guess I was trying to say is that I've experience Ibuprofen both ways. Working and not working. But I would say try ite very time you suspect inflammation, even if it did not work in the past.

I love the "getting help" section. My hurdle has been prophylactic antibiotics. I wonder if an update on the NIMH site would be enough for my docs. Unfortunately, they probably wouldn't even look at the update. Luckily, I haven't had the need to seek out IVIG or PEX....yet. I am curious to see how the autism community and PANDAS community will eventually unite. If PANDAS surfaces during infancy or toddlerhood, one would not see the sudden onset and, in turn, may get the diagnosis of autism instead of PANDAS. Or the co-diagnosis will be an oversight. But change has to start somewhere. But I am a realist. No matter what is put in that descripition, you will have a doctor nit pick at it and say "you're child doesn't do that. It's not PANDAS". Ex. My son, even after the strep was cleared, took 5 months to recover after his third exacerbation. I can see some doctor saying...it says 4-6 weeks. Not PANDAS. Even though his first and second exacerbations took anout 4-6 after strep was cleared. Did you touch base about viral triggers and vaccines? Or would that open a can of worms? Would you suggest mailing hard copies to NIMH building instead of soley emails?

For my son, it takes about half hour to get in his system. It doesn't make everything better, but calms things. If it doesn't work after one dose, try giving it every 6 hours for the day. Let us know if it works or not.

Depending on price of tickets, I would love to go.

I passed on all vaccines this year.

I went to the site already and saw the dvd from the Canada conference, but didn't see anything about tix for 2010. Perhaps they are not available yet. Depending on price, I would really like to go. I make one trip a year to visit my family in Chicago, so I can multi task! It's only a 4 1/2-5 hour drive for me.

I hear you about quick deliveries. I've learned to tell the OB's what to do so I can get my epidural and have time to get it to work. They never believed me when I would say, don't break my water until the epidural is in. Due January. I've had so many positives for Strep B that even if it's negative when they check this time, they'll do the abxs anyway. My problem is the last two have been very quick deliveries (with the last one they didn't even have time to put the IV line in!), so I'll ask him about maybe doing something before hand. But then we start the whole candida/thrush cycle...I guess I'll bring the probiotics with me to the hospital

I love it when I can feel the excitement of change and empowerment in the air. Can anyone get tickets to the conference?

My son continued to improve and eventually got back to 100% himself w/o being on long term abs. The doc would only give them to get rid of the strep infection. So, it is possible, but I would still highly recommend long term abs to everyone. If I could have gotten them, I would have. As for documenting, I would keep a journal on the computer. Sometimes, I would just leave note paper on the counter and write one word blurbs about what I saw to help job my memory at a later time when I could write more detail. You really can forget a lot in a short period.

If you start an antibiotic, acne will worsen for the first 3 months before it starts to clear up.

Mati's Mom, When is your baby due? Talk to your OB about getting IV antibiotics during delivery even if you test - for B strep prior to delivery.

First, my family (not immediate, but extended) seems to now remember my son's whole childhood prior to PANDAS as being OCD-ish, tempermental, overly shy, etc. That's interesting because they barely saw him as a toddler. Maybe once a year. So they don't really know what he was like. Also, I can easily point out other family member's children as having mannerisms that would be considere "odd". Not they have PANDAS, but why is my children looked at different all the time? So frustrating! I really have come to the conclusion that I will correct them when they say something way off mark, but for the little things, I take a deep breath and just complain about it to my husband in the car on the way home. As for the calmness in the house. Well, some have said that their children actually behave better while they are sick and PANDAS kicks up afterwards. So keep a hawk's eye on it. Also, there's a chance, he's just doing better! Either way, enjoy the calmness and pray that it stays. I hope it does for you.