thereishope

Someone on facebook just posted a link about hfcs and an autism link today. I'll have to look it up and post it.

It's inappropriate for the teacher to take advantage of her role in the classroom and ask other parents to pass on the email and invade your privacy. That parent probably felt intimidated by the teacher and was taken off guard at the request. It sounds like the teacher may have some of her own issues. Do you think she's reading this forum to be nosey?If so...mind your own business. We have enough going on to play into a teacher's insecurities!

I've been thinking about you! Please continue to update us. Hopefully the new dosage will work. I hope and pray you see continued improvement. With spring here and summer coming, hopefully that will help too. When the body has to fight exposure to so many illnesses, it's hard for it to get a break and get better.

YEAH! I bet you can't stop looking out the window with a smile! My son was the same. When he finally asked to play with other kids or play outside, it was a big accomplishment.

I actually answered a poll correctly without a "null vote"! My curse has been lifted!

Oh. that makes sense.

Here is a link to Buster's flowchart. It may help people through the steps of trying to figure out a diagnosis... http://www.latitudes.org/forums/index.php?...ic=6688&hl=

He might have undiagnosed strep. Unfortunately, some doctors don't swab kids under the age of 3 for strep throat. They have in their mind that kids younger than 3 can't get it. That is just not true! You can have strep, and strep thraot, without a sore throat, without a fever. Also, strep can occur in other places. It can be in the sinuses, may be the culprit of an ear infection, gut, anal, vaginal, skin. Some diaper rashes are actually strep. People just don't realize how many places it can occur. So, just because you don't have a documented strep infection at 2 1/2, doesn't mean he didn't have one:( If he had strep that was not fully erradicated, it could have been lingering this whole time. If you suspect PANDAS as a possibility, you could start with a simple strep test. Do a rapid test, if that comes back negative, make sure they send out a culture. If that comes back negative, do blood tests. Strep is a very sneaky infection. It likes to hide and PANDAS kids (a lot who do not get symptoms of strep) is the perfect place for strep to hide.

We had ODD. As for sleep problems, at a time, I had a very hard time getting him ready for bed. Took him forever to get in the room to change his clothes, the actual changing of clothes...it took forever. Then we had the OCD ritual of what to say as a "goodnight", how we had to hug, how far the door had to be open. Then usually he had to make at least 2 to 3 addditional trips to the bathroom before he finally fell asleep. We also could not at all change the routine. No matter how late we got home, he HAD to have a snack, HAD to watch a show.... Luckily, we no longer have those problems. The "goodnight ritual" was a hard one. That one we had to work on and didn't go away on his own. Even now, I make sure we change up our goodnight every so often just to make sure no OCD has a chance to creep in.

May I ask what the definition of an "announcement" is?

Does he want all of your child's official med records or just you recalling them? If he wants the official records, go to the ped's office today or Monday and say you either want a hard copy for you to pick up (that should only take a max of 3-5 days) or see if Dr K will accept an electronic copy via email. That would take a day or 2. You'll have to sign a form for either one. I think unless there's been a lot of medical issues, you recalling certain illnesses, reactions to any vaccines, if milestones were met, etc would be good enough.

Just curious...is it different for Cunningham to write a script out for bloodwork over state lines because it's a study?

Welcome. I think I may need more background from you. I'm guessing your child's allergies have kicked in and you are seeing an upswing in tics and possible other behavior changes? With my son, allergies is a trigger for PANDAS symptoms. With PANDAS and PITAND, it's like once the Pandora's box opens with an infection, such as strep, it never fully closes or at least it sure takes a long time to close. Meaning, every time the immune system kicks in with a virus, allergy, infection you might see an upswing in the tics or odd behaviors. For my son...once I get the allergies under control with allergy medicine, I see the behvaior changes ease up because his immune system isn't in overdrive anymore. Allergies are hitting early this year. So...I am also getting from you post that he has had bloowork that shows a current or past strep infection. when was that bloodwork done? If by chance he has a strep infection AND allergies are kicking in AND it is PANDAS...that could really send a child over the edge. That immune system is just going crazy. PANDAS does remain a clinical dignosis. Meaning a doctor in the office cannot do a blood test andsay it is a test for PANDAS. As for antibiotics, if there is an infection, the right antibiotics is given (this is trial and error) and you see an improvemnt in symptoms, that is a good sign of PANDAS. However.....if your child does NOT have a strep infection, has PANDAS, and allergies have surfaced....antibiotics would not improve the symptoms. Controlling the allergies would. But that's only if there's no infection. Not that I've probably confused you even more. Post any follow up info or questions:) I agree to click on the link of the fact sheet Buster posted. Print it out and read it. There is a list of other possible symptoms of PANDAS. Note..a child does not need to have all symptoms listed to have PANDAS.

To do a poll, click "edit". Then you will see a prompt for manage topic's poll. Click that. The poll option will then come up. When you are ready to post your poll, click "post". You can still add it onto this thread. My son... First tried Claritin. Fine until day 11. Then super hyper and made some OCD pop back up. Switched to Benadryl. Did fine. Now...started Benadryl last Saturday. He's doing well, but may have to increase the dose. I hate the dosing on the liquid (1-2 tsp...well which one?) Tried 1 tsp, thinks he may need 1 1/2. he has also taken Flonase once and did well with it. Did not take it long term. Need to be careful with nose bleeds if taken long term. I did read on package that even though it is local, it can lower the immune system over time. He does not have tics.

I might understand a ped shakng his head back and forth and saying "You don't need those tests". But when a parent insists on them and it is just a blood test, I think the doctor should cooperate. Are you having a lot of issues with this doctor? It may be time to find a new one. Otherwise, I wonder if you can conatct Dr K, ask him to write a script for the bloodwork, go to Lab Corps and have results sent directly to him. I'd try a different local ped first, but not options are lost.

I read it a from a few different angles. I do not like the controversial label. Actually, I hate that. However, I don't read the response as a big "anti PANDAS" rant. I read it as they believe PANDAS exists and the defintion should be changed, but they think parents are starting to think every TS or OCD is PANDAS. Now, I am not getting into the whole "would TS and OCD even exist if strep didn't exist" thing. I'm just thinking Leckman and the other doctor is saying there's a surgence of parents saying PANDAS and they are fearing the overuse of antibiotics. Now, I don't know Leckman's stance on chronic PANDAS. From this article, I get that he is more for the sudden onset defintion. Does anyone know? He also talks about a new IVIG study. Does anyone know the current status of that? i thought it was shelved for now? If anything, that article backs up why a diagnostic test is neeed and why Cunningham should get funding.

I'm not familiar with this machine, but was wondering if your husband had strep while using it? Do you know if the machine itself is self contained to be possibly used by multiple people without passing germs and infections? I may be way off base here but my comparison is to something totally different....a breast pump. Ones that you buy in the store, can store germs in the machine itself. Only hopsital grade ones don't circulate the germs. You just replace the outside pieces for each person. But then, it would only be a concern for your husband's machine if he had strep while using it. You can probably contact the manufacturer with a serial number and ask them how contained the machine is and if would harbor bacteria. Finally, can you sterilize the pieces in boiling water in the future so you don't have to keep buying new pieces?

Um...recently I had a bunch of kids over (ages spanning 2-6). After they left, I called my husband at work and had him reassure me it was okay other kids were in the house and they did not spread germs. So, I may not be the best person to answer that question

I second that...WOW! I just forwarded you post to my husband. He, too has had problems with congestion, drainage, etc. for the past few years. Treated it as a sinus infection with Augmentin and it didn't get better. Man, I'll have to strong arm him into getting a blood test. He's wimpy about that stuff.

Have you done a steroid? That's one thing that can affect the test results.

If you saw improvement and 3 weeks later you had that big a setback, you need to get back for another strep test and get back on antibiotics. Did he have a +strep test in the first place? Which antibiotic was he on? Also, when a person goes off antibiotics, you should get a follow up strep test 3 weeks after finishing antibiotics. Have all other family members been tested yet?

My son does not have a dairy allergy but he was "anti milk" for a long time. I just took it as his body's way of letting him know it wasn't good for him at the time. Now that he's better, he occassionally asks for a glass of milk but I never push it. As for allergic reactions to things, it wouldn't surprise me if your child doesn't have a "classic reaction". I've heard that from other people on here with other allergies. Follow your gut...you're probably right. Also, with seasonal allergies, they may cause PANDAS symtpoms to surface so I don't see why that would be different with a food allergy.

I use the word remission too. If they are still confused, I bring out the peanut allergy analogy. Instead of a peanut...it's strep. Instead of not being able to breathe, their mind, reasoning and ability to function correctly slips away. I know for most of our kids, this disorder isn't as "life or death" as some diseases. I say some because if your child was one of the ones that threatens to do harm to themself or has wished to just go to heaven, then it is "life or death" in that parent's eye. I do say that they may not be physically dying but they are mentally dying and it peeves me that some in the med community deem that to be okay.

I thought out of pocket maximum was the highest out of YOUR pocket. How does your insurance work? Do you have a copay, 20/80, co-insurance, do you pay everything to a certain amount then get 100% coverage?

Thanks for the update! We've all been thinking about you. When the strep broke through the antibiotics was she on Augmentin once or twice a day? If it was once, is that his/your theory why she contracted it?