Suspect PANDAS, seeing OCD/Tics... all new for me

[KAS]

woops

[KAS]

That's pretty much it. Many of us have found that antibiotics help reduce the actual PANDAS symptoms. I find that just the actual exposure to strep for my son triggers a PANDAS reaction, even if he does not test positive to strep with a throat swab. In such instances, the only way we can get him back under control is to put him on a course of antibiotics - strictly to treat the symptoms. We usually find that the symptoms go away within the first 48-72 hours of treatment.

The hard part is finding the right antibiotic that works. We have cycled through so many different ones, Augmentin, Keflex, Cleocin, Zithromax - just to name a few.

The frustrating part is that even if one worked one time, it doesn't necessarily mean it will work a second time.

 

Good luck with everything. I hope that everything works out!

 

--Evie!

 

Alright, thanks. That helps me piece things together. A couple of more questions for you all:

 

1) Do you find yourself avoiding situations (play dates, certain places) where your child might catch a bug? Such as, you know a friend's kid is sick, so do you re-schedule a visit with them? Are you careful to limit exposure to siblings when they are ill? It's so hard when we have a 3 year-old running around with the 5 year old all the time!

 

2) In-between break-outs, do you continue all of the measures, such as strict diet, probiotics, this Epsom salt thing (what does that regimen entail???), etc, or can you slack on it some? I am guessing you keep it up to keep the immune system at its peak to avoid the infections altogether.

 

3) Do you give your child Min-Chex or that Natural Calm Kids stuff?

 

4) Did I read somewhere to just give the Omega 3 and purposefully not the Omega 6? If so, why?

 

5) Do your kids have a hard time getting to sleep, only to wake late, telling you all of their dreams in detail? My daughter is doing that now, and I did it throughout my childhood!!!

 

6) What studies have you seen that show the effects of long-term antibiotic use? I know I used some for my complexion as a teen-ager, for a few years. Hmm...

 

7) Do you follow the advice of "don't acknowledge the tics when you see them because they only make it worse?"

 

8) Do you try not to bring your child with you during consults with your pediatrician, or at least when you are discussing your major concerns, so the child doesn't know how concerned you are about this condition, adding to their own stress about it? I am hoping to bring my husband and keep him and the kids out of the room when I do go in to discuss this with the pediatrician, then bring her in later????

 

THANK YOU ALL SO MUCH! Our daughter is having a better day today (pretty much no OCD tendencies that are noticeable, and less of the licking!!!!). Of course I don't know if it's due to the infection being extinguished, the diet changes I started yesterday (iron drops, probiotics, more natural foods and no milk...she actually liked the Rice milk this morning in her cereal!). Unfortunately the fish oil has strawberry essence in it...her one known food allergy. I'll go exchange that today.

 

You are all truly Godsends to me at this time. Hugs from Denver!!!! Sara

[P_Mom]

Hi..I am dealing with PANDAS in my two boys...I'll answer your questions according to my own experience and how we handle things.

 

#1 If a child has a KNOWN illness, yes, we avoid the situation or reschedule get togethers. Any immune challenge now can result in an increase of symptoms for us.

 

#2 Yes, we stay on track with the supplements, good diet, etc. at all times. Epsom salt baths are just a way to help your kids get rid of toxins and get extra magnesium and sulfur in their systems, which is beneficail for my boys and helps them relax.

 

#3 I give my boys Kids Calm

 

#4 yes, only give Omega 3's for PANDAS situations, as Omega 3's are anti-inflammatory and immune suppressant, which is what we need. Omega 6's have the opposite effect, which is what we want to avoid!

 

#5 No problems with sleep right now, but, when in episode the kids would wake frequently with bad dreams etc., but, they never had problems falling asleep.

 

#6 The benefits of the antibiotics for my PANDAS kids far outweigh the risks in using them. A brain being attacked and damaged makes me shudder, using low dose PenVk does not..... it helps me sleep at night knowing I am doing what I can to protect my kids from having this happen. (although nothing is 100%)

 

#7 We have not acknowledged any tics up to this point, my kids seem oblivious to them when they are having them. If it ever comes up by them, well, then we will have to discuss it, while keeping it as light as possible. But, yes, I think it could make them more conscience of them, and then perhaps worse. So far, we just aren't there ....(hoping to never get there!)

 

#8 We have had several doctor appointments and never once was their condition discussed in front of them..I feel very strong about that. They just wouldn't understand and most likely become scared...something I don't want. I don't want them thinking that there is "something wrong with them." They haven't a clue....the last PANDAS visit was to check for "allergies." Then, I left the room with the doctor to discuss things. I have had to cut off nurses and even a couple doctors who just started to talk about it in front of the kids... oh well. Gotta do what I gotta do!

 

Hope this helps, Sara. God Bless!

 

Kelly

[KAS]

Hi..I am dealing with PANDAS in my two boys...I'll answer your questions according to my own experience and how we handle things.

 

#1 If a child has a KNOWN illness, yes, we avoid the situation or reschedule get togethers. Any immune challenge now can result in an increase of symptoms for us.

 

#2 Yes, we stay on track with the supplements, good diet, etc. at all times. Epsom salt baths are just a way to help your kids get rid of toxins and get extra magnesium and sulfur in their systems, which is beneficail for my boys and helps them relax.

 

#3 I give my boys Kids Calm

 

#4 yes, only give Omega 3's for PANDAS situations, as Omega 3's are anti-inflammatory and immune suppressant, which is what we need. Omega 6's have the opposite effect, which is what we want to avoid!

 

#5 No problems with sleep right now, but, when in episode the kids would wake frequently with bad dreams etc., but, they never had problems falling asleep.

 

#6 The benefits of the antibiotics for my PANDAS kids far outweigh the risks in using them. A brain being attacked and damaged makes me shudder, using low dose PenVk does not..... it helps me sleep at night knowing I am doing what I can to protect my kids from having this happen. (although nothing is 100%)

 

#7 We have not acknowledged any tics up to this point, my kids seem oblivious to them when they are having them. If it ever comes up by them, well, then we will have to discuss it, while keeping it as light as possible. But, yes, I think it could make them more conscience of them, and then perhaps worse. So far, we just aren't there ....(hoping to never get there!)

 

#8 We have had several doctor appointments and never once was their condition discussed in front of them..I feel very strong about that. They just wouldn't understand and most likely become scared...something I don't want. I don't want them thinking that there is "something wrong with them." They haven't a clue....the last PANDAS visit was to check for "allergies." Then, I left the room with the doctor to discuss things. I have had to cut off nurses and even a couple doctors who just started to talk about it in front of the kids... oh well. Gotta do what I gotta do!

 

Hope this helps, Sara. God Bless!

 

Kelly

 

Kelly, thank you! I am benefiting from your wisdom and experience for sure. Curious...what are your sons' ages? ALso, PenVk...what does that entail, and what is your regimen? Do you try to avoid all dietary Omega 6 (nuts, eggs, poultry, whole grain breads, etc)? Did you have food allergy tests performed? And if you have school-aged children, what do you tell their teachers...do you have them look out for symptoms or just say to ignore any weird habits or to let you know if the child is irritable? I have already requested our preschool to not use hand sanitizer when she was licking her hands so much, and she'll begin Kindergarten in the fall.

 

Any follow-up on these questions by anyone would be appreciated! Thanks, Sara

[P_Mom]

Hi again.

 

I have an 8 and 5 year old.

Pen VK is just the improved form of the old standard Penicillin, we give 250 mg twice a day.

 

I do not avoid dietary Omega 6's, you still need them and those foods are important.... I just do not supplement.

My kids have no food allergies (IGE), and I do not believe my older son has any sensitivities...my younger son may have some mild ones. I suspect salicylates and I am in an elimination/reintroduction process.(Loose Feingold type diet) I have just received some testing kits from Great Plains... I will most likely get them IGG tested sometime in the near future just to be sure, but, right now there is not much going on, so, I may spare them the blood draw for now unless something comes up. I was "warned" by our allergist about IGG... he said they are not really accurate tests and will most likely show positive reactions to many foods that your kids really don't have a problem with, and then many kids get these beneficial foods removed from their diets unnecessarily. I don't know, I guess I am on the fence with it. If I get it done..I'd probably only focus on any highly reactive foods, and then see what happens....... My younger son is only in preschool and is almost asymptomatic.. teacher knows nothing and has seen nothing. My older son is symptom free, and school is not an issue right now. When he was in episode, I did write a letter to the teacher explaining that he has developed some motor tics and if she notices them to please not say anything to him. I then asked her to please call me if it seems the ticcing is bad or the kids are noticing and saying stuff, or if he seems stressed about it. If that happened and she called, I would probably go pick him up and make up some excuse why I did. She never called, thank God, and when I went in for a class party, I asked her if she ever noticed anything and she said no, never.

 

Getting tired, going to hit the hay!

Good night.

 

Kelly