thereishope
-
Posts
4,257 -
Joined
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by thereishope
-
-
If the behavior is being caused by a virus, then antibiotics won't help. When me son gets a cold or allergies, I just have to deal w/ the increase in behavior until the virus goes away. I did give him Ibruprofen at the time of the cold and it helped. When the behavior is being cauased by something other than strep, the behavior changes is slightly increased, not to the extreme as it is w/ strep.
Clyndamyacin is used w/ strep carriers so if he has strep, thet should kill it.
Each time my son had strep, the behaviors associated w/ PANDAS varied. Ex. frist time heavy heavy OCD, second time, no eating, horrible rages.
-
.For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class
Are you serious? OMG, I can't believe this! Shouldn't she be teaching her little girl to be tolerant of things that people can't help? I mean, i could see it if his tic was to slug the person next to him or something. I'd be talking to that teacher and explaining tics and letting her know that it is mighty unholy to make a kid feel bad over something he can't help doing...not only that, but what do you think he'll do the next time he's bored in Sunday school and wants a break? Oooh, this makes me angry!
I'm sorry that you and your son are having these problems...is he on proph. Abx? Do you have him strep tested whenever he has a resurgence of Sx's? I don't understand how you got IVIG based on one strep associated episode? Don't you need a series of strep related episodes to confirm dx? 'Course we have miles of history of strep related episodes and still have no officially confirmed dx.
As for an official diagnosis, the child has to have the sudden onset of symptoms w/ a + strep test at least twice. However, many doctors will verbally give an unofficial diagnosis based on one episode because it is obvious it is PANDAS. But they will not put it in writing after only one.
Is there any way possible, you can convince someone to do a procedure (I don't know what it's called) to see if there is inflammtion w/ the basal gangila. I know one mom who had that done and it showed inflamation.
When the tics started again, did you take him for a strep test? If not, I would recommend taking him for one.
Finally, as for the ignorance of people, well, peolpe are rude.Personally, I would bring it up at some time to the mom. Did she see it happening? What her daughter was doing. Just say you want to being it to her attention. Then get mad depnding on her reaction.Unfortunately people who believe they are very religious and lead very pious lives do not completely practice what they preach. My husband's parents twice called my son Monk from the tv show (the one w/ OCD) and referred to him as the one w/ the personality change to a stranger right in front of us. Needless to say, we don't visit them anymore.
-
My son had strep and PANDAS symtoms as a result 3 times. All behavior changes went away with the first two times. The third time, a lot of the issues went away except for OCD. It is a residual symptom of PANDAS for my son. The neurologist said that happens sometimes. He has been strep free for 3 months. His OCD no longer includes meltdowns like they did when he was recovering from strep, but he has many rituals and anxiety when he does not complete them.
He also has flare up of OCD when he has viruses likes colds. He has not had any other bacterial infections since strep.
The psychiatrist did say that OCD can up with fevers and can whenever the brain warms up even a little.
Now for a few questions....Do you remember when the OCD first surfaced? Was it full force overnight or a very gradual process?How many times in her life has she had strep?Has she done CBT? Did that help?
-
I am so happy they are continuing with the prophylactic dose of antibiotics. My son contracted strep a month after having his tonsils out. I keep hitting dead ends on getting prophylactics. Just never push symptoms of PANDAS out of the way, thinking she's gone through surgery and is on antibiotics, so therefore she won't contract strep. I hope she has a speedy recovery!
-
Is the vaccine you are referring to Prevnar? If so, my son had the course of that vaccine and I never noticed reactions to them.
-
If IVIG helped with the problem, then I would think it is not being caused by meds. But there is a chance meds are making it worse. Did everyone who has that issue listed their meds? Even though you don't want to "give in" and reinforce any fears, you first have to get them to feel safe enough enter the bathroom for those who think it might be a germ/dirt thing. They do also sell disposable seat covers like they have in public bathrooms. Maybe look it up online or in a store, show them and say "What do you think? I thought about getting some of these" Do be careful w/ flushable wipes. They easily clog pipes if you use more than one or two. If this problem happens in public often, it may be a touchy subject to bring up, but stores do sell "underjams"..the older child version of a pull up. But I would only suggest using that if they often soil themsleves in public and only use them when you go out. You don't want them to become reliant on them.
-
When is your appointment? Ours is July 7th. I am thinking if the first appointment is not covered because she does not accept any insurance we could plea to our insurance company that we had to go out of network for medical necessity. There is a letter you have to write and they will give you a receipt for insurance. Then the hospital or IVIG should be covered because they bill it a certain code that is accepted. We have Anthem and Latimer thought that would be covered for the IVIG. Not sure though. Does anyone know if Dr. K is billing wit a code that insurance accepts yet?I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.
I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.
Our psychology dept told us to ask the psychiatry dept to bill their services under a med managment code. I'm not exactly sure what "med management " is though. I have UHC. I'm still waiting for a response to see if that's what they did.
-
I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.
I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.
Perhaps call your insurance and see if you need a pre-approval. What insurance do you have?
-
My son (5) starting wetting his bed again . It seems to come in clusters. He'll wet it for a week or two, then he'll stop. I now have a set of sheets on my bedroom floor "just in case". Just so I don't have to go scurrying around the house in the middle of the night. Also, even when he doesn't wet it, he does wake up almost every night to use the bathroom.
I've treid cutting down on drinks a few hours before bed and it did not make a difference.
-
The only thing I can give insight too is the tonsillectomy part. My son had t and a surgey after his first two strep and PANDAS cases to try to prevent strep. Well, one month after after the surgery, he caught strep again. The ENT said it was just bad luck. I just love that medical diagnosis...bad luck. Anyway, he was recovered from his PANDAS symptoms at the time of surgery w/ no OCD. However, when he caught strep for the third time after surgery, OCD resurfaced and this time it seems to want to stay. I think the OCD is staying because he had strep and OCD symptoms related to PANDAS for so long because of strep 3 times in 6 months.
Anyway...I know that NIMH does not recommend having tonsils out just because of PANDAS diagnosis. But I do not regret our decison. The ENT had seen PANDAS patients before and he stood behind having them removed. I see it this way. We will never know how many times the t and a surgery will prevent him from strep. There's no way of knowing that. The nurses in the recovery room did tell me that the younger the child is at time of surgery, the eaiser the recovery. My son is 5. His surgery went great and he was eating regular foods the same day as surgery.
Long story short, in my opinion, having tonsils out would not help w/ the tics and OCD, but it may prevent some future strep infections. I would also suggest waiting until the child is more "stable" before having surgery. I wouldn't consider in an emergency procedure.
-
My son definitely acts up if he is put into a stressful situation, is around a lot of people in a closed environment (like a party at someone's house), or if he is experiencing something different, after it's over, he will have a relaspe.. An ex of that is when my 8 yr old had his First Communion, my 5 yr old PANDAS son sat in the church very nice, but when we got home for the party, his OCD kicked up. I think it was from the internal struggle of doing something he'd rather not do but had no choice. I say he's deprogramming himself. It's sensory overload and if they need to go in their room by themselves, let them. I tend to follow him when he does that, but I've learned if I let him be, he comes out when he's ready and he's calm...like a different child. I do, however, get on my hands and knees and peek under the door to see if he's ok. I've even had him go into the bathroom all mad and come out fine.
As for yourself, I've been there. I've sat on the bedroom floor hyperventilating, uncontrolably shaking, and crying. There's times, even though my son is improving, I find myself holding back tears out of nowhere. As a parent, it scars you psychologically to see your child like that.
All I can say is whenever you see that small change, cherish it and remember it. Even when my son would pick a sparkly pencil over a plain one, I would smile and be happy because that's something he refused to do prior. That's what gives you motivation and hope to continue the fight to get your child back.
One final thing, is your child on any allergy meds? After 11 days on Claritin, he was hyper like you wouldn't believe. We switched to Benadryl and he is fine now.
-
In case you're curious, when my son had a cold, his OCD kicked up a bit and I gave him Ibruprofen. Like clockwork, a half hour later, he was behaving better. I would even know when it was wearing off. He didn't take any cold meds w/ it either.
When my son had a 5 day dose of prednisone, he did not get it as an indicator if he had PANDAS nor did he get it to see if he was a candidate for IVIG. He got it because his behavior was spriralling down even after being on antibiotics for almost a week after a + strep test. My 5 yr old wouldn't eat, talking about wanting to go to heaven, horrible horrible rages, and more. The best way to explain it was the prednisone jump started recovery. After 3 doses, his behavior was dramatically better. When taken off, he still was not 100% himself, but he was better than he had been and was on the road to recovery.
-
I looked around and all I could find is websites stating that a steroid brust is used to measure whether IVIG may be effective. However, part of the last sentence could back fire in your attempt to convince the ped. It means that steroids shouldn't be used long term, but peds tend to get scared easy. So I guess it depends whether your seeking it in the next step towarsd IVIG or for a long term treatment.
I'm posting it anyway for you to read.
http://www.webpediatrics.com/pandas.html
This is the part about steroids...
Corticosteroids
Just the fact that the "steroid burst" (used to test possible future effectiveness of IVIG) tends to control PANDAS symptoms effectively brings it into consideration as a possible treatment for PANDAS. Since the short-term steroid treatment only controls the symptoms temporarily and the prolonged use of it may have rather serious side effects, corticosteroids have not been (and should not be) used as a treatment in PANDAS.
-
Vickie it probably really helped him to get the predisone early on. Do you remember the amount of predisone mg/ per kg of weight he gave him? Did it work right away?How was his behavior during and right after the steroids? Was it Gilbert who prescribed it? Did he say why he chose to treat him that way? What was his next suggestion for course of treatment if he had a relapse? I am glad he is continuing to do well.
Michele'
I'm sorry, but I'm a little confused with this part..."He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "
I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.
VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.
Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex
My son went completely back to baseline after his first two back to back strep episodes. He only ever got a 10 day dose of antibiotics each time and the second time he got a 5 day course of prednisone because he was extreme from being back to back. We did not catch his strep the first time until almost a month after his overnight behavior change.
Let me remember, he received the prednisone maybe 5 days into his antibiotics when he was still getting worse and worse. We should have seen him at least plateau by then.Instead, he was still spiralling down. I don't remember what the amount was. I suppose I can call Target tomorrow and have them look it up if you want. Let me know. Gilbert was the one who prescribed it. He never called it a steroid burst. I didn't know that's what it was until I read posts on this forum. I did not ask for it, he offered it. He said that the theory is that steroids work for other autoimmune disorders like RA, so it might work for PANDAS. He sounded like he really didn't know if it would work. The script was for 5 days and I believe it wasn't until after the third dose got into his system, did we notice improvement.He still wasn't back to baseline, but he was dramtically better. The scary, no point of return, do we need to go to the hospital worry was gone for us. After that, we saw the gradual improvement and ultimately back to normal. Well, until he caught strep AGAIN. He never said what the next step would be if the steroid didn't help. I never asked. I think I was too scared.
Let me also explain the timeline more. He was a month into recovery from his first strep infection when he got strep again. That's when he got the steroid. He did not receive a steroid every time he had strep. There was a neg strep test in between the positives.Sorry it's confusing.
-
Vickie it probably really helped him to get the predisone early on. Do you remember the amount of predisone mg/ per kg of weight he gave him? Did it work right away?How was his behavior during and right after the steroids? Was it Gilbert who prescribed it? Did he say why he chose to treat him that way? What was his next suggestion for course of treatment if he had a relapse? I am glad he is continuing to do well.
Michele'
I'm sorry, but I'm a little confused with this part..."He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "
I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.
VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.
Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex
My son went completely back to baseline after his first two back to back strep episodes. He only ever got a 10 day dose of antibiotics each time and the second time he got a 5 day course of prednisone because he was extreme from being back to back. We did not catch his strep the first time until almost a month after his overnight behavior change.
Let me remember, he received the prednisone maybe 5 days into his antibiotics when he was still getting worse and worse. We should have seen him at least plateau by then.Instead, he was still spiralling down. I don't remember what the amount was. I suppose I can call Target tomorrow and have them look it up if you want. Let me know. Gilbert was the one who prescribed it. He never called it a steroid burst. I didn't know that's what it was until I read posts on this forum. I did not ask for it, he offered it. He said that the theory is that steroids work for other autoimmune disorders like RA, so it might work for PANDAS. He sounded like he really didn't know if it would work. The script was for 5 days and I believe it wasn't until after the third dose got into his system, did we notice improvement.He still wasn't back to baseline, but he was dramtically better. The scary, no point of return, do we need to go to the hospital worry was gone for us. After that, we saw the gradual improvement and ultimately back to normal. Well, until he caught strep AGAIN. He never said what the next step would be if the steroid didn't help. I never asked. I think I was too scared.
-
I'm sorry, but I'm a little confused with this part...
"He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "
I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.
VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.
Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex
My son went completely back to baseline after his first two back to back strep episodes. He only ever got a 10 day dose of antibiotics each time and the second time he got a 5 day course of prednisone because he was extreme from being back to back. We did not catch his strep the first time until almost a month after his overnight behavior change.
-
I'm sorry, but I'm a little confused with this part...
"He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "
I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.
-
Think back. When your child had their chicken pox vaccine, did they have ANY side effects from it? My son got the rash associated with chicken pox. I know two other Mom with PANDAS children whose children got shingles. I think this may be more than a big coincidence. If your child did have a side effect, please post what it was. Thanks!
-
I hope I am not repeating anything else others have said. First off, trust your instinct. When she was on antibiotics, at any time while she was on them, did you see ANY improvement? My son would continue to worsen until day 4 or so on a 10 day course of amoxcillan, then plateau w/o worsening, then begin to ever so slowly improve. Overall, it takes about 8 weeks for us to finally say he is more himself than not himself.
Do get those follow up strep tests. I don't ask, I just make an apointment with a nurse. I don't even see a dr. However, they have never refused to give him a strep test if I request one. If you need to, lie and say her throat hurts. Or find a different pediatrician, or take her to urgent care.
Have you and your husband been tested? Have you done simple things like change tooth brushes? It could be that she has a strep carrier even in her classroom.There have been times when the family dog tests + for strep. So many possibilities. When you take her and she does get a negative strep test, make sure they run cultures as well. My son's gotten negative rapids and poisitive cultures before.
As for my son, he's not getting treatment for the disorder. There is no set course of treatment for the disorder or even the symptoms. Each time he's gotten strep (3 times in 6 months) all he got was the 10 day cours of amox and he did improve very slowly over time. We went through ###### and we still have bumps in the road, but when you are fighting for your child to get better you find the strength.
-
To add, decision making became VERY hard for my son. He would stare in his dresser full of clothes for an hour. Yet he wouldn't let us even hint to him what to wear. Also, he still has his little ruts in food decisions. Every morning, it has to be strawberry applesauce, every meal, apple juice. Almost every day it seems at least one meal is a grilled cheese. That's when I just make sure it's unsweetened applesause, unprocessed cheese, etc. My son is 5. Right now, I think it has just become habit for him.
Do you let her prepare food for herself? My son would always eat more if HE got to make his own sandwich. Granted, it's messier, but it got him to eat! Also, take her shopping with you and on the sly say "hm. I wonder if I should buy this" What do you think?". Don't ask her an open ended questions like what do you want. Point things out. But if you notice she's not interested, don't push it.
-
My son went through a food strike entirely then slowly brought things back into his diet. I remember freaking out thinking they'd want to put him on an iv or feeding tube if it kept up too long. When he slowly added things it was first self contained foods, then cold foods, then cooked, and finally back to normal. I think issues with food can be expected with PANDAS. Anorexia is also associated with it. Do you see a pattern in what she chooses? Once I finally realized what my son was doing, I was able to "work with it" to get him to eat. However, every meal I would put a plate of "regular" food in front of him just in case. And there were times when he surprised me and actually ate it.
As for waiting for a diagnosis, I believe it is still mostly a clinical diagnosis with the main correlation being that (esp the first time) the behavior changes were brought on by strep. What kind of tests are you waiting on?
Silly question, but did she recently have strep and go an antibiotics? And how long has this food issue been going on for? Did it start at the same time she was sick? For my son, I think it really got bad 1/2 way thorough a 10 day course of antibiotics (but his body was trying to beat back to back strep infections) and he wasn't eating normal again for....hmm....maybe a month?
My son also gets fixated on ideas. We go to the store and he sees a toy he wants. He announces he wants it added to his bday list. His bday isn't until Sept. Then he repeats himself over and over until we acknowledge him. Then he confirms that we are going to add it again. And makes us repeat what the item is so we don't mess it up. Now that he's been improving overall, that behavior is getting better too. That one seemed to be one of the ones the lasted the longest.
-
My son always gets amox when he gets strep. The symptoms continue to worsen for 3-4 days after the start of antibiotics then the slow recovery process finally begins.
If you think about it. A child is still contagious until being on amox for 24 hours, therefore, the antibodies are still being produced and causing more and more inflamation during that time. Then you have to wait for the antibodies to stop producing and finally for the swelling to decrease before you see any improvement or at least reach a plateau.
-
Hi. Since I posted on this question, I wanted to supply a follow up. I had said that my son was taking Claritin and was doing well. Well, after day 11 of being on it, I noticed he was super hyper. First, I lowered the dosage, then decided to completely take him off Claritin. I switched to dye free liquid Benadryl. Since he's 5, he won't take pills. Thankfully, the hyperactivity is gone and the Benadryl is not making him tired either. He likes the taste of Benadryl better. The drawback is you have to give it more than once a day. But his allergies aren't that bad and I give it to him only two or three times a day depending if I notice his eyes are getting bothered.
-
I need advice. My son had a fever at 11:30pm last night. In the morning, he felt fine and was in a good mood. He went to speech and came back in a funk. The fever was back. His behavior isn't off right now. I don't want to take him for a strep test just because of a fever. He's petrified of strep tests. He's had so many. But I am freaking out a little.
So my question is would a fever become before or after behavior changes if it was strep?Obviously if he has one major setback in behavior, I will take him to the dr.
DD's Doctor Quit on Us!
in PANS / PANDAS (Lyme included)
Posted
Wow. Just how do all these ignorant doctors get their fricken medical degrees? And let's add insult to injury...you had to PAY to be talked to like that!
If anything, I hope after the shock wears off , you will feel more empowered to fight and you WILL prove her wrong.