Blessedwifeandmom
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Posts posted by Blessedwifeandmom
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Maybe what Swedo meant was that is easier managed as an adult. I sure hope it gets easier for my son. I would say my son is a mild case compared to Sammy or some of the others I've heard of, but it's still very hard.
I really don't think it's possible to outgrow this. It's an autoimmune response because B-cells remember. One could have easily said that I outgrew PANDAS when I was in high school after my treatments. I was totally symptom free but I also rarely got sick. As soon as I got sick again though or had something that triggers autoantibodies, I had symptoms. Maybe the ones who outgrew it simply had no further triggers. I am one of those who was assumed to outgrow it.....but I'm stating honestly that I didn't even though my symptoms are very manageable. I think if PANDAS was a disease that can be "outgrown" there wouldn't be 40% of adult cases of OCD that don't respond to SSRI's....
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Later in the broadcast Swedo mentioned that she followed up after 8 years or so had gone by after a study and over half of all of the kids grew out of it by eighth grade or high school, some the symptoms were so mild they didn't consider them a problem, and some were be manage with medication. I do remember the host saying what you are talking about though.
Please.... everyone keep in mind that it was the INTERVIEWER who made the comment that kids might outgrow it ... her child, who had a mild case, apparently did. She noted Swedo might not agree with her, but did not give her a chance to respond.
Later in the broadcast, Swedo did say it is important to continue antibiotic and/or IVIG treatment so they get well.
While I have heard of cases where the child outgrew it, it is definitely not my understanding that this is the rule!
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Reading your post is so encouraging. I'm praying when we go back to the doctor next week he will begin testing for co-infections/lyme. My so has his worst day in a long time yesterday and we are still on Azith...like day 18 or something like that. He has had some okay days but he still seems to be doing some herxing or just reacting to the abx....who knows???? I feel like I'm going in circles. I pray this will all end soon. The tics especially the ones with grunting and sniffing start to really bother me after a while. He seems the worst when he is trying to get to sleep. It's like his tics arein overdrive when he tries to go to sleep. Anyway. I'm so glad to hear about your success. so are you on Azith and Augmentin. Is that the normal 1st step if it's lyme?
We had EXACT same reaction. My dd9 was on zith per Dr. B for PANDAS since Oct 1, 2010. She was about 50% better within a month. On Nov 1 he added Augmentin to the zith, and she went CRAZY, it was truly horrible. He took her off the Augmentin and ran a 15 day steroid taper. She went back to her former status of 50% better. He then tested Igenex for lyme, he said it sounded too much like an underlying problem to be just PANDAS. She tested positive for many bands, including band 31, indicating lyme was present for over a year. He again added Augmentin Dec. 1, and this time, she was a different child. 95% of her OCD disapeared in about 2 weeks. In mid-December we saw a lyme doctor, she tested for coinfections, and they were negative, but still put her on tindamax for the weekends. Now 2 months later, she continues to progress every day. We still have about a 10 day cycle with a day of unpredictability every 10 days or so, but nothing at all like before, in fact, her worst day now would be her best day 2 months ago. I did learn that a bad reaction is probably a good thing, means you are getting at the problem. Keep going, stay strong, and keep a journal. The info is valuable to your doctor and to you as you try to recall all of this craziness to your doctor on your next visit. (I am forgetting as fast as she is improving!)
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I listened to the live radio blog tonight with Sweedo and I think she said most kids grow out of it before high school. Has anybody had this experience or know anything about this? I had never heard this and I was thinking my son (now 12) would be living with it forever unless the traditional therapies worked. He is on Azith now and actually it seems to be making him worse not better. I'm on day 18 and his tics yesterday were at an all time high. He also just got bloodwork back and he has some elevated thyroid antibodies and low TSH. I'm hoping addressing this next week might help as well. Has anybody had thyroid issues with this? He has high strep titers too.
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What did you guys think? I enjoyed the show. I was initially worried when the talk about sudden onset started. . . Swedo seems so big on that, but she later softened and admitted that it is difficult after the first initial episode, because a child can not always completely remit and can have a more waxing/waning course. I appreciated that she talked about PITANDS and said the upcoming study and future studies will be looking for other triggers such as mycoplasma and chronic lyme, and that they will be looking at brain imaging and spinal taps. There was plenty of talk about viruses being a trigger to set off the immune system in a PANDAS child. They are really trying to figure this out.
Also, I was particularly interested to hear her describe OCD in children of varying ages. She said in young boys around age 5, it can present as ADHD and hyperactivity. Yes!!!!!!!! I've been wondering if these lingering symptoms are attributable to PANDAS. She also mentioned the spacey processing problems our kids can have in school. She's really a great researcher.
What did you guys think?
I was encouraged to know that most kids grow out of it. I had no idea about that. I was thinking my son might suffer for the rest of his life with this.
Also, we haven't done any behavioral therapy and after what she said about the success being as good as some of the other treatments, I'm going to be doing that as soon as I can find a good therapist.
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I'm tying to type a list of what I see with my youngest ds for dr appt. tomorrow. He is so different from my oldest that I'm trying to piece through what is or isn't PANDAS. With my oldest others could see things- tics, obsessive thoughts that I couldn't see because to me they were just him.
So would you view these as possible trouble spots or just normal average kid...
* frequent crying (he is 9), tried therapy, tried ignoring- not feeding into it. Nothing has helped, but comes and goes.
* feels that others don't like him yet I've seen others gather around him at school events.
* feels like others are being unkind- I'll hear his brother ask an innocent question without attitude or rude tone and he is in tears insisting his brother is being mean.Very irrational response can't hear me tell him that his brother asked a simple question. Similar things have happened at school such as pushing down his closest friend because he insists he heard him say something and friend said he didn't say anything, Alex kept asking, friend said I didn't say anything, finally so upset he pushed him to the ground. Not a typical behavior for him.
Would you call these possible signs? Am I looking too hard or have I not looked hard enough these past several months?
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My son has definitely had the self esteem issues but he also has tics, OCD and anxiety, but 5HTTP and SAMe, St Johns wart helped the woe is me attitude a lot.
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I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here.
Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?.
I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now.
We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test.
A couple of weeks ago we had an intial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment.
Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he somtimes has a raspy cough.
So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight.
Any input on this?
Elizabeth
Yes we have him on it still and things seem to be a lot better than when I wrote this. I'm holding my breath as I type that...
He definitely got worst immediately when starting it. It's so hard to know what to do. It seems no case is just like the other. We go back to our doctor in two weeks and it seems like forever from now. I'm thinking about finding an LLMD as everyone seems to benefit from that type of doctor.
Praying for a miracle for us all,
Cindi
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I know you I'm to space the charcoal at least 2 hours from ABX but what about supplements, probiotics and ibuprofen.. Should I give charcoal before or after bedtime supplements. He is in a major herx right now and I need to give him the charcoal to help him be more comfortable, but he also takes some supplements right before bed that are pretty important. I also just gave him ibuprofen for a bad headache and I want that to work also. The timing of the meds is so hard.
Also when we were on Augmentin he took Culturelle but still got C-diff. Any suggestions on the best pro-biotics to use from someone who has avoided C-diff and been on abx a while.
Thanks,
Cindi
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Just talk to doctor and he thinks it's probably herxing and to give him some activated charcoal. however I didn't mention lyme or anything to him. I have just read somewhere I think that if kids have such a reaction on Azith, it could be a clue that it's LYME. Thank you for the quick reply.
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Sorry this is so long.
In 2006 son started overnight with tics and sever separation anxiety. We thought all those years it was mild tourettes with anxiety. Then I learned about PANDAS.
I started learning about PANDAS in Sept. of 2010 . We just thought he had transient tics, very bad anxiety,and OCD. I had started supplements in September when his symptoms had gotten worse while we were on vacation. He seemed to get better. A couple of his tics (eye and facial mostly) totally disappeared for about 3 weeks. Then they reappeared with a rash, so I thought I needed to take him back to the doctor because I thought the rash might be scarlet fever. He tested negative for strep but I begged his doctor to test his ASO titers and they were very high. She didn't believe the whole PANDAS thing so I went home disappointed and determined. A couple of days later I went to see my doctor with a sore throat (thinking I had strep) My test was negative, but I preceded to tell my GP about Christian and his blood test results. I had the Sammy book with me and told her all about PANDAS. I then asked her if she would be willing to correspond with Dr. Latimer in Maryland if I chose to go see her. She then said, with a smile on her face, I will be happy to do that. In fact I would be happy to go ahead and give him an antibiotic and see what happens now. She said,"wouldn't it be great if you didn't have to go to MD. " Then she looked at my husband as said we should go ahead and test you for STREP and your daughter and make sure no one is a carrier in your house. I thought I had died and gone to heaven. She said, now I can't promise your insurance is going to cover all of this, but I will be happy to get you a price on whatever test you want just in case it wil not be covered. Long story short I got Christian there the next day bright and early at 7:30 A.M. She did an exam and then prescribed him 875 mg Augmentin 2 times a day for 3 weeks and then she wants to see him for a follow-up. Also when I took him to see her, she had another doctor in training there who was really big into the nutrition side of things and he said it would be good to try gluten free and he told me the supps I had him on were perfect, except for the P5p, (for some reason) something to do with dopamine. Anyway, I would love to hear your story and what Dr.Kalb's view on PANDAS is and what test he did.
He continued on Augmentin for 50 days and then he got the dreaded C-Diff and He was treated with Flagyl and was better. He never got to 100 percent on Augmentin. I would say 50 percent better. We were off everything over the holidays and things seem to be going okay. Still not sleeping in his own bed, still tics and anxiety but better. We saw a DAN doctor and got a lot o bloodwork done. He still had
high Anti-DNase-B 465 after 50 days of Augmentin
Immunoglobulin G Subclasses Panel - low total IgG
Thyroid- Low TSH, High T4- Elevated TPO Antibodies
EBV Past infection
HE STARTED MY SON ON 250MG AZITH A DAY FOR 30 DAYS- Does this reaction to Azith mean it could possibly be Lyme?
It's been crazy for the last few days. Actually for the last five days.. He is definitely in a flare that began on Sunday, January 23rd before we even started the Azithromycin. I wasn't going to start supplements back until I could see if it was just the abx helping (if they help... the abx seem to making him worse but maybe that means their doing their job), but I caved in this morning and started him back on everything supplement wise that I still had and I will be ordering a few more things as soon as I finish this email/blog post.
Last night he he was feeling really bad right before bed and had already been ticcing like CRAZY all day. As he was lying in the bed next to me he was shaking a little and had a cold clammy sweat. He curled up as close to Allen as he could get and finally fell asleep. He woke up with a horrible headache this morning and a sore neck, still ticcing like crazy. I think I might go easy on school today. He just took his supplements and is running a bath as I type. I figured an epson salt bath wouldn't hurt. I am so praying this is herxing from the new antibiotic. I'm so anxious my chest has been hurting, but I know it's from all the worrying I'm doing. I know I should just give it to the Lord and I have, but it's so hard watching your child suffer.
He also says he has been having ringing in the ears. That's new.
Should I keep taking Azith?
In His Hand,
Cindi
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Well he woke up this morning with a horrible migraine and his neck hurting. He's still ticcing more than normal, the sniffing and grunting are driving me up the wall, but I'm not letting him know it. Last night at bedtime he slept with us and he was sweating,shaking, and feeling like he was going to throw-up, which is one of his biggest fears. It's like I would imagine it would be if somebody in major withdrawals coming off a drug or something.
Thanks so much for your kind responses. It helps to know I'm not alone. My son is 12 years old and I homeschool him too. However, I don't think we will get much done until this herxing or whatever it is ends. I'm so praying that it is herxing and I will see improvement soon. Thanks for the support.
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We did a round of Augmentin in November and I don't remember this happening. He got some better when taking Aug, but got C-diff so we had to stop and take Flagyl for 10 days and the C-diff got better. We decided not to go back on Augmenten and his was off all Abx for about 8 weeks. At out last doc appt, he put him on Azithromycin and he seems like he's getting worse. How long before you see improvement usually with Azithromycin. He is on 250 mg once a day. He is 72lbs. Please tell me this is a good thing and I will see the light at the end of the tunnel. I'm so tired.
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Just wondering if anyone can tell me if this looks like P.A.N.D.A.S.
12 year old son- Tourettic Tics, OCD , Severe anxiety (especially at night), Intrusive thoughts.
The doctor did the test below and we will see him again, but I have the results of some of the bloodwork and wanted to see if any of you had similar results and if I should have any other test run? He had his ASO titers checked also a couple of months ago and the were high as well 360.
low TSH, high T-4, suggest testing for thyroid antibodies and repeating this lab in 3 months.
Anti-DNAse-B- 425(high) Normal is (0-170)
Ammonia 59 (high) <=47
Vitamin D- Low Normal
SP-Epstein-Barr Virus Antibody Panel I- Previous Infection-
EBV VCA IgG 4.16
EBV VCA IgM 0.13
EBV NA IgG 0.71
EBV EA IgG 0.29
Carnitine, Free 34- Low Normal 22-63
Immunoglobulin G Subclasses Panel-Spectrum low total IgG
Mycoplasma pneumoniae Ab IgG - No Results Yet
Mycoplasma pneumoniae Ab IgM - No Results Yet
Chlamydia pneumoniae Ab IgG - No Results Yet
Chlamydia pneumoniae Ab IgM- No Results Yet
SP-CBC with Diff- Normal
Comprehensive Metabolic Panel- Normal
SP-T3 - Normal
SP-Immunoglobulins, Quantitative -Normal
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Just wondering if anyone can tell me if this looks like P.A.N.D.A.S.
12 year old son- Tourettic Tics, OCD , Severe anxiety (especially at night), Intrusive thoughts.
The doctor did the test below and we will see him again, but I have the results of some of the bloodwork and wanted to see if any of you had similar results and if I should have any other test run? He had his ASO titers checked also a couple of months ago and the were high as well 360.
low TSH, high T-4, suggest testing for thyroid antibodies and repeating this lab in 3 months.
Anti-DNAse-B- 425(high) Normal is (0-170)
Ammonia 59 (high) <=47
Vitamin D- Low Normal
SP-Epstein-Barr Virus Antibody Panel I- Previous Infection-
EBV VCA IgG 4.16
EBV VCA IgM 0.13
EBV NA IgG 0.71
EBV EA IgG 0.29
Carnitine, Free 34- Low Normal 22-63
Immunoglobulin G Subclasses Panel-Spectrum low total IgG
Mycoplasma pneumoniae Ab IgG - No Results Yet
Mycoplasma pneumoniae Ab IgM - No Results Yet
Chlamydia pneumoniae Ab IgG - No Results Yet
Chlamydia pneumoniae Ab IgM- No Results Yet
SP-CBC with Diff- Normal
Comprehensive Metabolic Panel- Normal
SP-T3 - Normal
SP-Immunoglobulins, Quantitative -Normal
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I have an appointment with him Wednesday. I wil let you know after that.
There is a group of moms Tennessee that meet monthly. Let me know if you want the information on the group. Cindi
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What supplements have you found works for your child.
Cindi
Hello! We did the IgG blood test. My son came back with alot of food intolerance, but mostly dairy/gluten. I had a "gut" feeling the dairy was going to be off the charts.
Our neurologist said if you want to know for sure if food is truly a culprit that the elimination diet is the best way to go. However, we have just completely eliminated everything that came back moderate & high on his IgG profile. We still give him the stuff that came back "low" but even avoid some of that too.
Personally, I think the supplements are as important as the diet & no matter how much elimination you do, tics will sometimes still find their way back through other types of triggers. We just learned this with a mouth injury & trip to the dentist. It's all a learning process.
Best wishes!
~Lynn
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Thanks for all the replies. I guess we will stick with the regular augmentin this month since I have already purchased it. I'm just worried about the clav acid and diarrhea. However the doctor didn't seem to concerned. We have been on a probiotic since we started 3 weeks ago. I will definitely look for the Florastor since you recommend that one. Is it once a day or more?
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How do I find out about how much Clavic Acid for weight of my child? He is 78 lbs. and is on 875 mg 2X a day. He does have a lot of Diarrhea with it.
HI Cindi, I think the verdict is still out as to whether or not the XR is more beneficial then the "regular". However, having said that, you do need to be sure the amount of the Clavulanic (sp?) Acid is not too high for your child's weight when you use high doses and are not using the XR. The XR provides more Amox and less Clav. Acid. This may be a very important difference for the child's system.
If you are seeing noticeable progress on a week to week basis, (not necessarily day to day), then I would continue whatever it is that is working. Recovery is SLOW.
Some see initial obvious gains, but to get back to 100% after a "moderate to severe" episode like your child has had, can take months. We have worked under the operating mode of: If it is working--continue! Patiently (easier said then done, I know.)
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My son has a tic where it sounds like he is gagging. In fact it is bad right now. Actually. I just heard it. My son says he does it when he feels nauseous but it is a tic (so he says) He has huge anxiety about throwing up and I wonder if that's why he does it. I wish I had the answers to help you but maybe someone can help us both.
Cindi
Has anyone's child had the tic displayed as retching or gagging? Son has been able to contro l these with mints or water until 2 weeks ago when they manifested into dry heaves- he's not at school as he has these all day, any help would be sooo appreciated, thanks
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My son has been on Augmentin for the last 3 weeks and we had a follow-up appt. today and I asked the doctor about XR? She said she would prescribe it but it would be a lot more expensive. Boy was she right. The month supply of 1000mg XR 2x a day was going to be $250. The regular Augmentin was only $50. Would it be worth it? I keep asking myself.
We are seeing improvement on 875mg Augmentin 2X a day but it is slow improvement. I know Dr L. prescribes XR. Does anyone know why XR? Also I know a lot of people have had great success with Azith (sp?) please share your experience. I have noticed my son Screeching a lot more than normal but a lot of his anxiety, tics and OCD are better.
Thanks,
Cindi
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No he hasn't had a steroid yet. He is on Augmentin. He probably should drink more water. I will make sure he does tomorrow. Thanks for the advice.
quote name=T.Mom' timestamp='1288828758' post='91124]
Hi Cindi, you recently did a steroid burst -- correct? I have heard that the steroids stay in the body for about a month afterwards (?) I would call your doctor and ask to speak with her to ask about these headaches--or email. Seems if they are every day that you really do need to follow up on that--
Is he drinking lots of water during the day?
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I'm the mom in TN that got the privledge of meeting with the other two moms. I feel as if we have known each other forever. It is definitely worth the effort. We said we are going to start a movement in Tn.
so these doctors will know Pandas. -
We have always had an issue with bedtime fears since pandas. My son even at age 12 was still wanting us to lay down with him. Or he would want to sleep with us. He was about 8 I think when it staRted. Before that he always slept in the pich dark fine. A couple of days after starting abx I offered him a big incentive to sleep in his own room. The first night he kept coming in the room to make sure iwas still awake. He finally fell asleep with the hallway light on and our door open. The second night his dad laid down with him. He was too stressed. The last 2 nights he has done great. I don't know if its the incentive or the abx but I'm just happy he is finally trying. He will not get the reward until he has slept in his on bed for at least a month straight.
His tics are mostly eye and teeth related but he also dies one that is like a full trunk and arm dance and he does some vocal tics as well. THE TICS AREN'T THAT NOTICEABLE UNLESSS you live with him. Its his intrusive thoughts that bother him and us the most. Forgive the typos I'm on my phone. I will post more details later if you would like.
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My ds(12) is on day 9 of abx and his head is hurting real bad every morning. Ibuprofen isn't helping. I don't know if I should take him in for a Strep test or not. His throat isn't hurting but his head hurts and he get's nauseous.
We have seen some improvement on the antibiotics. He is sleeping alone in his bed for the first time in a long time. I'm praying it's the antibiotics. His tics seem better too.
Thank you all. I love this forum. I was able to meet last night with 2 wonderful ladies from this forum. We all live about 30 minutes from one another in Tennessee and all have kids with PANDAS. It was a wonderful time with lots of information shared. If it wasn't for this bored we would have never met.
Cindi
Motrin
in PANS / PANDAS (Lyme included)
Posted
My son is 12 and weighs about 73lbs. I give him 200 mg every 8 hours or so. We just started this 2 days ago and I can tell a big difference.