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Are we dealing w PANDAS?PLEASE HELP


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OOOPS first, I must be out of my mind...I listed my son in topic description as 22 mo.. He is 34 mo. Will be 3 in July.. Can't figure out how to change that...

 

I don't even know where to start... A thank you to all who have shared info, stories, help to others on this forum. Even if this is not what we are dealing with , I will pay it forward, spreading the word so more families know about this. I have only known of PANDAS since Friday, and I have been reading everything I can here and there for answers. I am one to research everything online but I am so lost on this one... I will share my post out of desperation on another forum that lead me to PANDAS.. then share our symptoms(I now realize might be symptoms) after reading on PANDAS

 

Not sure where to start..strep throat, scarlet fever, mental, behavioral side effects of amoxicillin

 

My son who will be 3 couple months, was at er last thurs w diagnosis scarlet fever and strep. Put on amoxicillin (which he has had before). Since starting meds he has had very strange episodes mostly towards night time and waking up having one. Like OCD kinda stuff, saying or crying the same thing over and over for like and hour. Being violent, confused.. wanting meto hold him but yet hitting and kicking me at same time. We put pjs on and he crys forever take them off let mommy do it or visa versa w daddy. want to go to his room then back to couch over and over. Just examples of some of the episodes. He looks different in his eyes when he wakes up doing it. He has excema and is a sensitive little guy. Always pleasantly good, not mean ever. Except a few times hear and there like at nanas when now after reading and being enlightened a little on red dye 40 I wonder if that might be an issue for us. All she ever buys is red stuff. I am wondering if we are dealing w amoxicillin allergy or red dye 40 allergy or combo. or what. very concerned parent. My sweet little boy is not his self. Took him to his pediatrician today, throat still very red. I stopped the amoxicillin yesterday when I looked up side effects bc of what we have been dealing with. He was given a Rocefin shot and antibiotic ceclor to start tom. Sent to do blood work to see about infection and other test. Me and my MIL dealt with an "episode" might have looked like extreme tantrum to others for about and hour getting in car and to clinic for blood work. 2 grown men, me, nana, and a nurse could not get the blood drawn, they sent me to go to hospital, wasnt' gonna happen, asked if we could come home( hour away) do blood work here w me and hubby tom. OK Well now I'm realizing tom is Fri, and I don't know what will happen w results bc dr close at noon and then weekend. Freaking out! don't know what is going on w my baby or what to do. I have 3 boys 17, 13 and 3(in July). Dr said let's get him well first and see him next thurs and then we can talk about the mental stuff..bc he has reason to be irritable. It's past irritable! Something is not right...didn't think it was a reaction to meds or dye bc of no hives but didn't really say anything else. I am concerned about the strep in his body for no telling how long now. Now not sure if he we will have results till monday on how the infection is in his body. God I hope not. He was sick weeks ago and on antibiotics, wonder if he had strep the whole time bc coulture wasn't done that time. He hasnt been eating good or none at all for a while. Any advice or similar stories on reactions to amoxicillin or red dye 40 or strep and scarlet fever would be much appreciated. or anything else related. Thanks so much

 

With info given, someone suggested PANDAS

 

My son is SO smart and sweet and funny. Now we are dealing with issues suddenly never experienced w him. A whole diff child when he is having an episode, which tends to be at night before bed, during the night, or waking up in morning or before nap time (if he takes one). extreme anger, different look about him(the eyes of terror), very clingy, confused of what he wants, nothing makes it better. the night time issues have been pretty bad saying same thing over and over very upset for like an hour. It's like he isn't really awake. last few nights he has just ran to his room mad and laid on his bed wanting nothing to do w anyone and falls asleep. when he wants me to hold him and he keeps hitting me, it is a repetitive movement of how he hits over and over. I will say we have dealt w him being mean in the past when he is tired but only then. I now wonder if we have been dealing w this for a while and the recent strep, scarlet fever made it worse w other sypmtoms. He has been sick quite a bit.. when he was only a couple of mo old he got bronchulitis and has had it a few times since. He has had staph infections from mosquito bites(never actually tested for staph but thats what was dx. I have 2 older sons who bring everything home from school and the nasty staph infested weight room. On Easter, we got home that night, I noticed what appeared to be a mosquito bite, next day looked like a cig burn. so took him in afraid it was a spider bite, no real dx just put on meds.. I have requested all records from our local family Dr and ER, which I will take to his pediatrician tom. also prior to the confirmation he had strep and scarlet fever, I took him to our local Dr for sore throat and cough, she said possible strep and treated for it but did not test. I wonder if he has had it all along and that is why it turned to scarlet fever. I did notice him blinking his eyes 1 or 2 days a few times, he said something was in his eyes and I thought it was strange it happened the next day. I just am not sure about exact details on that bc I wasn't aware or looking for anything like that at the time. No one else here, says they noticed it. With the 2 older very busy boys, my youngest has stayed with Pa and Nana regularly since he was an infant. Within the last 6 months, we went through a period of him ALL OF SUDDEN not wanting to be away from me and my husband at all, would not go there with out extreme melt down. That subsided. He has been very clingy to my husband when he is home, wanting him to do everything, change clothes, diapers, bottle whatever it may me. He HAS to do it. Now he is clingy to us both. Or like at bedtime getting pjs on he wants me to, then dad to, then no one can. or we get them on only for him to rip them off. Or who can get him out of bath tub and dry him off. Everything has turned into a big deal. We were almost thru w potty training, no accidents in day time, that has changed...He is still taking a bottle some at night..I know I know.. but he doesnt eat right some days not at all so we would give in and give bottle to him. He actually threw it at me and back on counter very hard bc he wanted his daddy to come home and give it to him. He took the amoxicillin for 5 1/2 days, I looked up side effects and thought that is what might be going on, went to ped and he switched it to ceclor after shot. finished that yesterday. He stayed at my inlaws the night before last and they say no melt down, yet here at home last night we had one. The night before he stayed w them, he was so angry and I had changed his sheet and he wanted it off and old one back on. I left him alone to throw his fit, he ended up ripping the sheet he was so mad and persistant in getting it off. He has been in quite a mad mode today as well. I asked the ped nurse if they have heard of or seen PANDAS and her answer was for me to gather up info and bring it in with us at appt. I do not know where to start. What info is best to give him? What tests can I ask for? I have family who haven't seen what's going on asking if it could just be the terrible 2's or the meds or him just not feeling good. Maybe some of it, but my husband and I know our child and something is not right. I am sick to my stomach over this and so do not know what to do or how to go about doing it. I do not want to over react but I also don't want to ignore the many signs. I have been joking for a while wondering why my child does not eat or sleep anymore, before this strep episode. We have been trying to be patient with him and not punish or get on to him. My inlaws think he is spoiled, this is beyond that. I think she may be worried about things but doesn't want to admit it. She text me today about gluten allergies.? She sees the whole things have to be done a certain way and the clinginess or picking one person who has to do things for him. She has seen the anger at night. She was with me at the Dr and experienced the HUGE meltdown after shot, going to try to get the blood work done. He also has complained about his back hurting..like by his kidney, dr ran a cbc and said he would check kidney too, all results normal. My husband is not one to believe in alot of this kind of stuff, but yet he knows something isn't right. ALL I need is for our ped telling us tom. bc he doesn't know, that he doesn't think it is Pandas or anything else. My husband will prob want to drop it and say, see it was the med or something. I know this was long and I am still prob forgetting something,and it may not make sense, but it is a start for me. Any advice, info would be greatly appreciated. My sister told me to ask for a referral to ped neuro. I need one in the Dallas, Ft worth TX area. to ask tom for a referral. I have been in need of a hysterectomy for months now, getting cancelled due to flu and me cancelling due to kids stuff going on. I was about to reschedule and now I don't know what to do. I have to get my baby boy back to normal. I don't even see me being able to, untill then. I am tired and stressed and IDK if I am retaining alot of what I am reading.

Edited by heathers_hounds
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let me just add, that as I read stories of others, I am just like OMG because some things sound so familiar. I have a horrible gut feeling and I can't keep researching. Others tell me I am bringing too much into this. ugh

Oh and my son also wore a DOC Band due to brachycephaly

another thing is my almost 14 year old son has this tic like thing when he plays baseball and sometimes during other sports, mostly baseball, same kind of movement and clenching every time. We never really thought of it to be a big deal. I haven't noticed it this year yet but have in the past.

Edited by heathers_hounds
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I believe your son has PANDAS. Its not the amoxi. That's what we were told when my son became angry, irritible and tantrumed while on amoxi for an ear infection at age 3. We took him off amoxi and the episode lasted about a week. We had no idea what was in store for us in the future.

 

Two of the best websites are Dr K's www.webpediatrics.com and www.pandasnetwork.org. Print them out and take them to your ped.

 

One thing that really helped me understand the ocd aspect of PANDAS was reading Tamar Chansky's Freeing Your Child From Obsessive Compulsive Disorder. I really didn't understand what ocd looked like in a child until I read that book. Your son's raging/tantruming is coming from not being able to 'complete' his obsessions or compulsions. The sheets and who puts his jammies on sounds like a 'just right' ocd. They don't make sense to you but they do to him.

 

Oh, and my son is currently on augmentin, a form of amoxicillin, and he has no side effects from it.

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Thank you so much for replies!

 

As for the antibiotic..we are finished with the 2nd one as of yesterday. Should I ask for another throat culture tom? Any bloodwork?

 

The night terrors were more when we found out about strep and some before, The last 4-5 nights I think?, It has been more about before he goes to bed, when things start going down hill. He has that wide eye look then as well.

This is so much to take in and I appreciate your support.

 

I have already requested ALL medical records and hope to get them before we head out to ped.tom.

 

I pray tom we well know if strep is cleared and where to go from there.. I just want to be heard by the DR and not dismissed and finding out later something should have been done! He can go from being his self to mad real quick.

 

Thanks again

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Hi,

I feel for you - this is incredibly stressful time for parents. Is there any way you can also get some support? - From an alternative practitioner such as a Naturopath or Homeopath for eg? (Even better if they have medical training too, and/or Biomed/DAN! training.) From first hand experience I can recommend it... Big hugs to you. Hang in there.

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I'm sorry I don't have more time to respond right now but wanted to say that YES, you should ask for another culture tomorrow. If they do the rapid swab and it is positive you need more antibiotic and/or a different one. If the rapid is negative have them send it out for a culture. The 72 hour culture is best, but it seems like that is becoming hard to get. A 24 or 48 hour one is at least something. The blood work that you can request is the 2 strep anti-body titers. These are the ASO and the anti-DnaseB titers. These do not diagnose PANDAS. PANDAS is a clinical diagnosis, but elevated titers can be useful information in some cases. BUT not all kids who have PANDAS will have elevated strep titers. Some kids never show elevated titers, and others have titers that are mildly elevated or extremely elevated. I am sorry for what your family is going through. You will find great support here.

 

The following names are from the Saving Sammy Facebook page list of PANDAS-friendly doctors. The names on this list have been sent in by families who have been seen or treated by the various dr's on the list.

 

Dr. David Owen, M.D.

Pediatric Neurologist

Medical City Dallas

7777 Forest Lane, Suite A307

Dallas, TX 75230-2507

972-566-8600

 

 

Dr. Seshagiri Rao, MD

Allergy, Asthma and Immune Disorders

3016 Communication Parkway, Suite 100

Plano, TX 75093-8906

972-964-7373

 

NeuroSensory Center of America - Trophy Club

Dallas / Fort Worth Metro

Kendal L. Stewart, M.D.

Wallace E. Taylor, Jr., M.D.

2800 E. Hwy 114

Suite 300

Trophy Club, TX 76262

P: 817.430.3330

F: 817.491.3317

http://www.neurosensorycenters.com/

Edited by JJMom
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Heather - my son is 14 and he developed PANDAS as a toddler. Yes,Yes, and Yes - it sounds like you are dealing with PANDAS, but you need to get the diagnosis from a doctor. Unfortunately, the diagnosis is a clinical diagnosis, meaning there is no blood test for PANDAS. The best you can do is to try to objectively chart his behaviors and also chart his infections. Kids with PANDAS show a rapid onset of behaviors in association with infections, and then a gradual decrease of behaviors.

 

Get the ASO and DNASE B titers, but recognize that if they are in the normal range it does NOT mean that your child does not have PANDAS. First off, many children do not have elevated titers even when they have strep. Secondly, it takes a few weeks for the titers to rise after the strep begins (ASO rises before DANASE B ). So - you really need to follow up with another blood test in a couple of weeks if the titers are not elevated, as they may be on their way up. You want to gather as much information as you can now - you may need it in the future. I still pull blood test and preschool reports out when I am gathering information for new doctors or trying to remember how he reacted to different antibiotics along the way.

 

It is painful to try to help you child when they are so conflicted and cannot tell you what they want or need. My son had a compulsion to bite and no amount of behavior modification would stop it. When he was about three and could speak I asked him why he felt the need to bite so much and he said "If I don't do it I can't breathe". That was when I realized that this was really a compulsion and not just an attempt to get attention or to be mean to someone he did not like.

 

My son also had periods where he would want me close by but then would hit or kick me. I think some of that might be the sensory issues. Oftentimes kids with PANDAS become very hypersensitive to touch and we find that deep touch (rather than light touch) is easier for them to handle. They also do well with weighted pressure, like laying under a beanbag chair or under a heavy blanket.

 

Do look at the list on top for doctors. Also, I know folks have already recommended Dr.Ks site and Pandas network. You may also want to check out PANDASresourcenetwork. org (they have a nice article for parents on there and some information for professionals), and you might want to watch Dr. Susan Schulman's video clips on Dr. MDKs youtube page http://www.drmdk.com/html/pandas.html. Another resource for parents is Beth Maloney's website - at PANDASfoundation.org (Beth is the parent of a young man who had PANDAS in childhood and is now a college student - she wrote a book called "Saving Sammy").

 

Keep sifting through this site and you will learn a great deal. Your son is fortunate that you are finding this early.

Edited by kimballot
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Heather,

 

Your story could have been ours. Our son will be 4 in October, and had his first episode at 19-20 months. We didn't get dx until 26 months because everyone convinced us it was just the "terrible twos". Not the case - so you're ahead of the game as far as realizing that something is not right and this isn't just a phase.

 

I think it's a bit harder for the little guys, particularly with the OCD because they don't have the communication skills that would let us parents know we're dealing with OCD - they just have a tantrum and we're left trying to figure out why, how to fix it, and how to prevent it from happening again!! It can be exhausting!!

 

You've found a very supportive group here, and there's alot to learn from all these amazing parents on this forum - they've taught me so much and they're always here to lend support when you need it.

 

Let me give you a few tips that I haven't read her yet (unless I missed them)

 

1 - it may take a few round of abx to get the strep under control - don't be afraid to ask your doctor to renew

 

2 - it might take some trial and error to find the antibiotic that works for your child. Ammox is not typically one of the more successful ones for PANDAS kids - you might want to try Azith or Omnicef for the little ones. In know the older kids have had luck with Augmentin - but I can't recall seeing anyone who's used it on kids our boys age.

 

3 - having bloodwork done and titres drawn is a standard course of action, but from what our medical team has told us, in children as young as ours were at onset - they are notoriously unreliable. The immune system is still to young to get accurate results. We didn't have our first set of titres run until almost a 12-15 monhts after onset because of this. (This opinion was shared by our pediatrician as well as Dr. Murphy - one of the PANDAS experts mentioned on these boards.) I caution you on this because there are several practitioners out there who insist that if there are no elevated titres it can't be PANDAS, so I don't want you to get bad blood results and be possibly sent down the wrong path. My son is a textbook case - confirmed by one of the experts - and has NEVER had elevated titres, even with a positive throat culture.

 

And last - but certainly not least...

 

4 - MOTRIN MOTRIN MOTRIN. Many parents on here have reported that giving their children motrin/ibuprofen has gotten great results. The reson is because it reduces the inflammation in the basal ganglia causing the issues. I can say that for our son - it is nothing short of miraculous. When he starts acting out, a normal dose of motrin for his age/size and 15 minutes later we have a different kid.

 

I wish you the best of luck, and your family will be in our prayers. Feel free to PM me if you'd like to chat in more detail.

 

Just know, you're not alone.

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Thank you all so much for all of your words! I felt so much more confident about the situation after all the info given here. It was nice to have things all on one page to get us started. I must be crazy, I listed my ds as 22 mo in topic description! He is actually 34 mo. will be 3 in July! CRAZY I did state that later, but still might cause some confusion.

anyways, had appt with pediatrician today. Culture was negative. Dr took my info on PANDAS to his office and went thru it and looked online. He came back in and said he will get w Cooks Children Hospital and see where to go from here. I don't think he really knew what to do. He said I guess it will be an immunologist, but will figure it out. I told him I had seen online another parent saying they go there for Pandas but didn't know who the Dr was. Suppose to let me know something tom. The Dr was sensitive and did not think we were over reacting. I hope he will continue researching and will be able to help others in the future. I hope I AM over reacting and we are not dealing with this. I hope he finds a Dr that REALLY understands PANDAS and can help determine if it is or isn't PANDAS with our ds, and if not then whatever it may be. I guess for now, I will start searching for info on Doctors in our area. I can not express how appreciative I am for all the replies!

 

what I am a little concerned about is our timeline of things. Major issues only started when he was sick with the strep and scarlet fever. Now after researching, I wonder if some things that happened before are related to PANDAS as well. Like period of time when he would get mean at night when he was tired. And the CLINGY stages, sometimes major, sometimes not so much or at all. 1 because of him being sick off and on so much. 2. because it was all so out of character for him

 

I have read that if dx and treated early enough, it could be a one time thing.? Is this correct? Could it be possible? or do you always have to worry about it?

 

 

I also find it very frustrating trying to explain to family members. Some supportive. I left my moms very upset due to the fact she won't let it go, about don't you think it just normal toddler issues. Well I HOPE AND PRAY IT IS, She has never seen any of what we are dealing with. She has only seen a different look in his eyes. I won't let it stop me from getting to the root of this. Maybe it is and he just don't feel good. But I'm not taking that chance. I'm sorry, maybe TMI. I just haven't been able to think or do much else since I came across the symptoms of PANDAS.

 

Heather

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Heather,

 

Your story could have been ours. Our son will be 4 in October, and had his first episode at 19-20 months. We didn't get dx until 26 months because everyone convinced us it was just the "terrible twos". Not the case - so you're ahead of the game as far as realizing that something is not right and this isn't just a phase.

 

I think it's a bit harder for the little guys, particularly with the OCD because they don't have the communication skills that would let us parents know we're dealing with OCD - they just have a tantrum and we're left trying to figure out why, how to fix it, and how to prevent it from happening again!! It can be exhausting!!

 

You've found a very supportive group here, and there's alot to learn from all these amazing parents on this forum - they've taught me so much and they're always here to lend support when you need it.

 

Let me give you a few tips that I haven't read her yet (unless I missed them)

 

1 - it may take a few round of abx to get the strep under control - don't be afraid to ask your doctor to renew

 

2 - it might take some trial and error to find the antibiotic that works for your child. Ammox is not typically one of the more successful ones for PANDAS kids - you might want to try Azith or Omnicef for the little ones. In know the older kids have had luck with Augmentin - but I can't recall seeing anyone who's used it on kids our boys age.

 

3 - having bloodwork done and titres drawn is a standard course of action, but from what our medical team has told us, in children as young as ours were at onset - they are notoriously unreliable. The immune system is still to young to get accurate results. We didn't have our first set of titres run until almost a 12-15 monhts after onset because of this. (This opinion was shared by our pediatrician as well as Dr. Murphy - one of the PANDAS experts mentioned on these boards.) I caution you on this because there are several practitioners out there who insist that if there are no elevated titres it can't be PANDAS, so I don't want you to get bad blood results and be possibly sent down the wrong path. My son is a textbook case - confirmed by one of the experts - and has NEVER had elevated titres, even with a positive throat culture.

 

And last - but certainly not least...

 

4 - MOTRIN MOTRIN MOTRIN. Many parents on here have reported that giving their children motrin/ibuprofen has gotten great results. The reson is because it reduces the inflammation in the basal ganglia causing the issues. I can say that for our son - it is nothing short of miraculous. When he starts acting out, a normal dose of motrin for his age/size and 15 minutes later we have a different kid.

 

I wish you the best of luck, and your family will be in our prayers. Feel free to PM me if you'd like to chat in more detail.

 

Just know, you're not alone.

 

 

THANK YOU! I don't know what I was thinking but in my topic description, I listed my son as 22 mo. WRONG He will be 3 in July... So is that a good age for the bloodwork or still questionable?

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We did our first round of bloodwork right around 3, but it all came back normal - and he had an active strep infection at the time (positive culture). So I don't know how useful it really was.

 

We just ran another set yesterday, and then found out he has strep again (this time in the nose), so it will be interesting to see how this round comes out.

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HI - so sorry your dealing with this (we also started young with our ds). Not had time to read all the replies so not sure if someone else has mentioned this but I have you considered Lyme as a possibility.. could the bites be ticks or some folks believe Lyme can also be transmitted by mosquitoes. Not saying this is Lyme but thought it worth a mention as some have found Lyme to be a factor with their PANDAS.

 

Also how many of the symptoms occur when your son is asleep, just woken up or falling asleep. We get night terros here when in an exacerbation and the child appears to be awake but isn't really.

 

Hope you get the help you need.. good luck....

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HI - so sorry your dealing with this (we also started young with our ds). Not had time to read all the replies so not sure if someone else has mentioned this but I have you considered Lyme as a possibility.. could the bites be ticks or some folks believe Lyme can also be transmitted by mosquitoes. Not saying this is Lyme but thought it worth a mention as some have found Lyme to be a factor with their PANDAS.

 

Also how many of the symptoms occur when your son is asleep, just woken up or falling asleep. We get night terros here when in an exacerbation and the child appears to be awake but isn't really.

 

Hope you get the help you need.. good luck....

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Another doctor to check in the DFW area is Dr. Zinser. Her is a pediatric neurologist at Dallas Children's Hospital downtown. He just successfully treated a recent diagnosis of PANDAS with IVIG. You have to be referred to him by your pediatrician and can't call directly for an appointment, though.

 

Also, I head up the Dallas Area PANDAS Support Group. We meet the 4th Monday of the month so our next meeting is this coming Monday. We meet in Frisco. Roxann heads up the Grapevine/Fort Worth Group which also meets this coming week. Please let me know if you are interested in attending and I can get the information to you. I also have a list of doctors who have been helpful in the Dallas area. The Trophy Club doctors listed above have become hesitant to do much for PANDAS as of late. Here is a list which we try to update regularly via feedback from our group parents:

 

Area Doctors Who Have Been Helpful in Treating PANDAS

 

Dr. Seshagiri Rao (immunologist): http://www.allergyandasthmatreatmentcenter.com/

 

Dr. Ashworth (pediatrician): http://www.drcarolynashworth.com/

 

Deborah Bain (pediatrician) – http://www.healthykidspediatrics.com (972) 294-0808

 

Dr. William Zinser (pediatric neurologist) -- Phone: (214) 456-2768

 

Dr. Debra Phelan (child psychologist), uses CBT – Phone: (214) 848-2686

 

Dr. Tracey Wiest, Wolverton Chiropractic – (972) 231-4231

 

Dr. Roger Skiles -- http://www.stonebriarent.com/contact.php (469) 633-9595

Edited by DebC
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