thereishope

I'm finding a lot of our kids got strep while recovering from surgery. My son tested + one month after t and a surgery. I don't think it's a coincidence. I'm not sure what to think of it. In case you're curious, my son's strep count is 4 times in 6 months. We've been strep free for 6 months. He had never had strep prior to 2008. Thanks Kelly, forgot to mention, both girls have had their tonsils and adenoids out several years ago. My older one, with PANDAS, I think got strep while recovering from the surgery. It was brutal for her. At this point, I don't know if I need an infectious disease or an immunology specialist. I guess the blood work will help decide. It is perplexing about my younger daughter also having so much strep.

Are you having trouble finding an OT in IL to come to your house? Where do you live in IL? My sister in law lives outside Chgo and is a slp and knows some OT's. Actually I may an old high school friend that MIGHt have some connections too. I grew up in Chgo.

An example of an action that can be OCD or sensory is aversion to touch. Do they not want to be touched because the touch itself bothers them and sends shivers down their spine and nails on a chalk board or do they not wat to be touched becasue you are contaminated and you now put germs and dirt on their body? Same action. Different reasons. However, some actions might be combo during an exacerbation. Touch was like that with my son. Perhaps list what you are unsure about and, if you want, let others view it from outside the situation. It is important to include what the reaction is. Sensory invloves many things. This are the areas that my son was tested on by the school district... Auditory processing Visual processsing Vestibular processing Touch processing Multisensory processing oral sensory processing. Even things like looking in a dresser and not being able to choose what to wear can be sensory. But then again, that can be OCD.

That's happened to me before. I think it's the pharmacist's fault. They transfer from one bottle to another and they don't wait for all of it to drip down. That's why it's important to mark dates on calendars. Don't know the effect of mising a dose.

Once he went to a prophylactic dose, did he spiral down or slight setback? It's important to remember that a child is not fully recovered after the course of antibiotics. Even though my son improved on amoxicillan for a + strep test, it still took months for him to get back to himself. He had times of reaching a plateau for days, he had bumps in the road with some setbacks. This is where it gets difficult. Even if amox is "good enough" for your son, you're still going to see bumps in the road to recovery. If after maybe 3 days you still don't see ANY improvement from your setback, perhaps something needs to be changed. Whether that is the dosing of antibiotics, the kind of antibiotic to ensure strep was erradicted, etc. It's such a guessing game. You don't want to keep waiting it out and have things get out control, but you have to realistic and know the healing takes time. So much of it comes down to that you know you're child and (I know I'm starting to say this a lot in threads) but your "Mommy instinct" tends to tell you what to do. Make sure sure son is taking supplements to help his brain heal as well. DHA, Omega 3's,etc. You can also try Ibruprofen in addition to you antibiotics to see if that helps with any of his PANDAS symptoms.

Here is the post that was left. I have not had a chance to view the website given. Been busy w/ in-laws coming. I should even be on the computer now! "Do you seem to be more sensitive to your environment than others around you? In multiple research studies, about 15-20% of our population are found to be "Highly Sensitive People" (HSPs). Many HSPs experience auto-immune disorders. To find out if you may be a HSP you can take this self-test: http://www.hsperson.com/pages/test.htm You can go to the "resources" link at www.aneweed.com to get great books about how to thrive as a HSP. Also, check out my blog: aneweed.blogspot.com Much love, Ane Weed, M.S., LMFT"

My son was ordered a sensory profile in the Early Childhood program in the school district. Some catagories he scored within the norm, some were not. Still, his scores were not bad enough to warrant therapy. he has an existing IEP for a severe speech disorder and the OT told me it was very comon for children w/ speech disorders to have sensory problems because the same parts of the brain are affected. They mainly did it when he was 5 because it's easier to get services, if needed, prior to enetring elementary. Once you enter elementray the rules change. They are more strict. If you want to know what areas he scored below "normal" in, let me know and I'll search for the eval. In another group I'm in for autoimmune disorders, someone just posted thaty many people w/ autoimmune disorders are also higly sensituve people. I think it may be an actual diagnosis. She listed a website to view. I'll pull it up and post. My son is also sensitive to sunlight. He has to wear a baseball hat a lot. His dad is the same. Any sensory issues he may have don't affect his daily life. It is a totally different game when he is in an exacerbation.

My son lost 4 teeth since his PANDAS diagnosis. 2 of them were during an exacerbation. I warned him for awhile before they actually came out. He had no issues at all. None with losing the tooth itself. No increase or resurfacing of symptoms. He did not, however, not want to part with his teeth. So, they are kept in a bowl on his dresser. He's actually not the first kid I know who didn't care about the tooth fairy, so I didn't think it was a big deal.

Ooooohhhh. Not good. Tell him he's fired! My neurologist eventually blew me off. What is with these docs? Look at the situation from the outside. The neurologist doesn't know what to do and he is in over his head. It's his way of saying "I want out". He knows you won't hospitalize and that's his way of getting rid of you w/o outright saying it. Sorry if it sounds harsh, but that's what it sounds like to me.

I'm sorry, I don't know the answer to that one.

On this forum, a steroid burst is used a lot of times as a tool to see if IVIG may work. In the case of my son, the neurologist gave it in hopes that it would bring down some of the swelling on the basal ganglia and (this part is my opinion) to perhaps weaken his immune system to lower antibodies. For my son it was not used as a precursor to possible IVIG. Some background, my son received the prednisone 5 days after a + strep test. We had seen some improvement by that point the first time he had strep. Couple that with talks of going to heaven and absolutely no eating, everyone was at their wits ends of what to do. He was given a 5 day course of prednisone (the length of time varies...some kids get a month). I saw my son's behvaior plateau by day 4 (after 3 doses in his system). Then I saw slow improevement. He eventually went back to 100% himself over the course a months. I feel like I have to add a clause here. Every child in this forum is different. Some haven't seen improvemnt that fast. Some don't see it until after they have finished the steroid, some kids' behaviors come back after the steroid wears off. I just don't want to give the impression like a 5 day steroid burst a miracle. I want to give hope, but not false hope. I still wonder why he's suggesting admision. Perhaps he is in over his head. Oh....my neurologist was the one who gave the steroid. Who ordered the IVIG? Are they still in the picture?

During my son's second episode, I was able to convince the ENT to keep him on amoxicillan as a preventative measure until he had his tonsils and adenoids removed. He was on them for about 3 months. By the time he had his t and a surgery, he was back to himself 100%. Unfortunately, they would not continue the proph amox after surgery and he got strep a month later. They chalked the strep infection up to bad luck! His proph dose of amox was lower than what he was on when was being treated for an active strep infection. If amox works for him and you continue to see improvement, I don't see a reason to change. Just try your best to get the doctor to renew his script and let your son stay on antibiotic indefinitely for now. Do know that sometimes strep does break through prophylactic antibiotics. So, if you see signs of PANDAS resurfacing after improvement, a strep infection still needs to be ruled out and a different antibiotic may be needed.

Ok. I'm thinking out loud. Well, not out loud, but while typing....I'm assuming she's on supplements like Omega 3's to help her brain repair any damage that was done. You seem really good about that stuff. You've experienced this for quite awhile. When you see these extreme rage attacks hit her, does your gut tell you it's PANDAS? I ask because when my son had remaining OCD, I could just tell the PANDAS episode was over, but the OCD remained. That's when I strted handling it different. This really is all based on good ole Mommy instinct. What does yours say? How many days post IVIG are you? You say her rage emerged with the steroid burst after 14 days. Is there a pattern? fallingapart...Has she posted here? Her daughter's PANDAS symptoms came back full force around day 20 post IVIG. What is she doing when she is calm? Does she envelope herself in playing, watching tv, etc? Finally, sorry so much, have you "spied" on any groups with bipolar, ADD, etc? Even if she may not have these disorders perhaps they have suggestions they can share if nothing else is helping. In an OCD group, one mentioned that the supplements SAM-E helped her sister dramatically. Not sure what is in it.

Unless you've been in the middle of it and total responsiblity has fallen on you, one cannot realize the extent of the situation. I've had family make rude and insulting comments and I've had family ignore the situation and never ask how my son is. Sometimes, you just have to let them talk and go on. It's easier said than done, but you have to remain focused on your child. A couple months into PANDAS, I learned to stop sharing info about my son with family unless they asked a question. Then I was honest with the answer but only answered the question given. I learned that I felt alone a lot of the time, but I no longer had to defend my son and some frustration and anger did slightly subside. I do attempt to reach out sometimes like forwarding info about the Saving Sammy book, links to Beth's interviews. Well, when I still don't get any feedback from them, I at least know I tried.

In my opinion, I think it has always existed. The relationship has just been realized. That's sad when you think how many have suffered.

When my son was doing the things I mentioned in the self-injury thread, I did tell the neurologist about it. A psych ward was never suggested. If it was, I would have refused. But keep in mind my son was 5. It was at that point, my son got a prescription for prednisone. You don't have to admit him. I'm going to be blunt...if he hasn't attempted suicide, they aren't going to force you to admit him. Why is the doctor now suggesting it? Do you think there would be a benefit to admission? And do you have doctors on board agreeing to a PANDAS diagnosis? The answer to that third question is very important because that would determine his treatment once admitted. A lot is taken out of your hands once that road is crossed.

I totally applaud the men who have joined this forum and takes a very hands on approach to helping their children. In my case, my husband is on board, but more or less takes a back seat. "you're better at these thing, Vickie" he often says. He just waits for his directions. He has helped, but if I ever wrote a book, I hate saying it, but most of it would be how I helped my son. I don't know how much my husband would be mentioned. Even more so if we were divorced and he wasn't in the household.

Beth Maloney posted that she has a doc name in MO. Send her an email at info@savingsammy.net. She will gladly share it.

As for the swear-like words (like freaking, darn, etc), those are on tv a lot in cartoon like SpongeBob. Well, I don't exactly know about the freakin, but I know darn and stupid are. When I'm in the room with my kids, their in the middle of watching it and I have to start my speech, "That's just not nice, is it. You know we're not suppose to do that." If someone was wathcing me they'd probably find it humorous. Yeah, I should turn off the tv and not let them watch it, but with 3 kids, I just want my 25 minutes of quiet! My 3 year old loves the word "darn". When I tell her no it's a bad word, she's learned to say "I didn't say it, Mommy, the Little People said it" because she's playing with them while she says it. Yeah, pass the blame onto a piece of molded plastic. I swear I have to get rid of those Little People. They swear, they land up in pretend cemetaries my son built. They are real trouble makers!

Just go to the Target counter and tell them the tip cracked off. One time it was like that in the bag. But it only happened once. They'll give you another no problem. Threats never worked with my son during an episode.

I am so sorry. Does she have any moments of calm? Was she this physical before IVIG?

Oh and at Target, the syringes come with a prescription. Maybe ask them if you can have one to see if it works with your child.

Having your other children see it is the worst. You don't want them to think they're hurting their sister or brother. It's sad the day you have to chase and wrestle your child to the floor or bear hug them from behind while wrapping your legs around them. All while their making animalistic sounds. Great, now I'm tearing up.

First, some non-PANDAS possibilities... My son is in kindergarten has just begun saying that his eyes are bothering him. I've asked him exlpain how and he doesn't know how to explain it. When my older son in kindergarten, he was rubbing his eyes all the time. We took him to the eye doctor and they said he probably just had dry eyes. If your child ever has sudden blurry vision, take a wet washcloth and wipe their eyes. It could be mucus, eye lash, or hair interupting the vision. You can try eye drops too. Now, PANDAS possibilities... Has she begun any new vitamins or have you recently upped any of her meds or vitamins? When my son was in the middle of a PANDAS episode he did "see" bugs on him. There weren't. So obviously something was wrong. Either his brain was sending the wrong signal or something was wrong with his eyes with floaters or something. If you've ever had floaters, it's like a small section of blurriness that kind of floats around.

I asked the school to contact me if anyone calls in sick with strep in my 2 boys' classes. Also, I've politely told my son's kindergarten teacher to use common sense and if someone's coughing a lot, do not pair them/group them with my son. Whether she'll remember that, who knows. but she did agree thatt was a good idea. She was not insulted. I've also emailed my 8 year old non-PANDAS teacher and explained the situation and if she ever suspects she has strep, to please inform the principal. I did the same for my son's in school slp. I was very suprised when my 8 year old's teacher responded and she said she was already informed of what was going on and she spoke with my PANDAS son's teacher. I was impressed by that.