JoyBop

I think my son was tested for thyroid and it was normal but not Dd. its very rare for kid to have thyroid problems but they do happen. Dd is now in full remission. We will be testing again in nov. I'm having my adrenal glands tested as well for some new symptoms I'm having. Interestingly low adrenal causes anxiety and depression....worth checking in the kiddos. I don't have those symptoms but have some funky things going on.

Airial95 I wish our Ent would take DS tonsils bc if pandas and siblings. But insurance won't pay for it unless we can prove he has sleep apnea. Just had it done Sunday now waiting for results. Our pandas ID dr said that studies show (these are not pandas specific srudies) that after t and a there is a reduction if strep infection for the first year but after that the risk of strep goes right back up to the same as those who have tonsils and that is why it is not approved yet for pandas (as well as other legalities since most insurance cos won't cover for that diagnosis yet) Praying for sleep apnea!!!!

I've had severe hashimotos since I was 16! And suffered from horrendous hives and facial swelling to the point of hospitalization. I used toget hives from a flare now I just loose my mind literally. My hair falls out and I don't know my children's names or where I am, where I'm going or where I've been. In the worst case when my tsh was in the high 60s I could not even speak even though I knew the words in my head. Could read or even find my way out of my own house. Very scary. I never considered it could have been encephalitis but I suppose it possible. Next time I get symptoms I will try Motrin and see if it helps. This could prove the theory at least in my own case. I have a lot of experience with the disorder and treatment but not sure of the relationship to pandas. I can tell you that only the brand name drug works! The generic gives a very inconsistent dose.

I wish they were offering CME credits. That would make it much more enticing.

My dd had her tonsils out Aug 29 and we have had miraculous results. Granted, it hasn't been that long but well take it. The pain is horrendous for up to two weeks and the throat is still sensitive beyond that. I would give her a chance to heal first. My dd has a small throat clearing tic that never bothered her or us. I have yo admit that she still has it but now only does it while watching TV, reading, or riding in the car. Your scenario makes me wonder if it wasnt the IV abx that gave your dd the temporary resolution in symptoms. Can you explore that and find out what was given? How long the half life was? Our Dd did have all sorts of bacteria in her tonsils. We are now trying to get DS who has it much worse to get his tonsils out. Praying the sleep study shows apnea!!

We had the same thing happen. Feel free to message me if I can help. My ds7 was in 10 mg and it made everything worse until he became completely agitated and bizarre after 4 weeks. We cut him off cold turkey and things settled down within a week. It does taper itself down as it takes a while to get out of the system. But with that said you would not want to go from higher doses to nothing overnight. 10 mg was safe to discontinue immediately. We are now in the same process with Zoloft. DS tolerated 12.5 mg nicely but it didn't really touch his OCD so out dr increased it to 25mg which is the lowest dose tablet they make. The reaction was the same as Prozac but this time we recognized it much earlier and cut him back to 12.5 after two weeks. He is now 9 days out and still is having some flares of agitation and temper tantrums but is much calmer. It was very difficult for the first 4 days and then got a little better each day. And as for Prozac not being recommended for children I highly disagree. In fact it is the only FDA approved drug for children with anxiety and OCD, and has the most safety studies. However I agree that no one wants their kids on these meds if their quality of life is not suffering. My kiddo couldn't leave the house so it was justified. I hope that helps and good luck!.

Our dd had high dose abx 10 days prior to surgery and preventative dose after. We will keep her on them for a long time. It was amazing to see all of the different bacteria that grew on her culture.

In so sorry you are dealing with so much! Medical transcriptions in a great field but there are many courses to take first. All can be done online. The problem is that the future of the career field is shaky as many hospitals are switching over to voice to text methods for transcriptions in their medical records programs. And many others are farming out the work to India. You can still get good work in the field now but you ought to look into medical billing and coding. Courses can also be taken online. You can still work from home. Just a fee thoughts as I am in the field and e wanted to give you some insight.

We have been trying CBT with several therapists now. I'm not sure how the treatment differs from diagnosis to diagnosis but my child has PANDAS which presents as severe anxiety and OCD. The CBT was to address the intense irrational fears such as gum and vomit. The technique for this is exposure response therapy. The child makes a list of the hierarchy if his fears and then you strategically choose a starting place to begin. Our first therapist started at the bottom of this list and we o my got 3 sessions in before his wife became ill and he had to stop working. The. His psychiatrist stepped in and went right to the top of the list, vomit. Then she had to stop and have her baby. (Are you seeing a trend here). There was one person in between who refused to work with my son bc he thought he was "too ridden with anxiety". (Isn't that his job?) now he's starting with a new therapist who says the first one started out too easy and the second started too hard. She says that he isn't ready yet and that the ERP that was done to address the vomit has made him worse. So as you can see its tricky but our situation has been complicated due to multiple therapists. I think its wonderful you have found someone that can work with you. As tpotter suggested, you ought to have a peak at the PANS Pandas Forum and see if anything rings a bell. There are many children that suffer from tics, anxiety and OCD that are caused by infections such as strep, Lyhme, and mycoplasma. Although there are far more that have the true forms of each condition. Just wanted to make sure you explored that possibility. Good luck and I hope it is a positive experience for you!

Thanks Ophelia. And good luck to you on your T and A. I hope it brings you as much relief as its brought our dd.

Thanks to everyone for sharing all of your insight. Things are getting pretty rough in my home with ds8 and we are now desperate to try ANYTHING we can to help him. I'm not sure I will make it til Nov 21 when he has his immunology appointment. He's going tomorrow night for a sleep study and I am actually praying he has sleep apnea so he can have a T&A. My daughter is 100% at 4 weeks post surgery and she was back to normal from the moment she woke up. I just found a mass law that I am so relieved to have found. All I need is a doctors note that my child will need to miss 14 or more days of school per year for medical reasons and they have to provide a home tutor without delay. He already has 7 days he won't be in school in the first two month she to doctors appointments. If he gets surgery or IVIG that will be the day we send a certified letter. The school has not been helpful and is making home worse each day. Sorry to vent.

How lucky you are to have such a supportive and wonderful school. We are not having the same support as of yet in DS school . But dd is in 100% remission so we have to count the blessings we have. You are doing an outstanding job of doing your very best to get your child everything possible for the best outcome. Hang in there, you are a wonderful mom and on the right track

Just be careful to make sure no doctor puts the BP diagnosis on their chart. First, even though these kids may have features of BP during flares (I know my child does but then is calm and sweet as a peach when well). I don't believe that your average BP pt would get better with the same treatments. The reason I caution you is bc at least the way things are right now, your child would never be able to get life insurance with that diagnosis bc if high risk if suicide. This is something that a pesky insurance company has ways of digging out, even if you didn't sign a release for that dr to be questioned. Often pcps get the notes and put them in your charts. Once you sign a release that office is required full disclosure. I know this bc I work in a drs office so please be weary of that diagnosis.

You could always switch to another and see if it gets better. Also make sure you leave at least 3 hours between anti and probiotic. But I'm sure you knew that. I forget which doctor told me. But so avoid the strep formulas. They are not pathogenic but still not recommended for PANDAS patients.

BigMighty, thanks so much for all those tips!! Pr40, I am already concerned as we will not have the funds to pay out of pocket. Some people on this site have said they have gotten it covered until encephelitis diagnosis and auto immune disorder NOS. We are being referred to a PANDAS immunologist in November and hope they can come up with something. We have never looked at his IGG count, so we will see. I was told by our infectious disease dr. that if the IGGs are low they have to cover it, no questions asked. But not wanting or banking on our child having that dx. He is usually healthy but did have a severe autoimmune reaction to foods from birth to age 5 and many doctors have thought there is a relationship between that and his current PANDAS condition.

If your child has received IVIG, please tell me what the procedure is like. Is it over one day? Two?In hospital or in home? I know there are different protocols but explain yours. How much school does your child miss? Please also share if you got it covered and if your child has received an official immune deficiency diagnosis. If not, how much did you have to pay out of pocket. I am going to try to pursue getting IVIG for DS8 but would love to know what I am getting myself into and how much school will need to be missed. (More because Im already being tempted to home school if that tells you where Im at right now....Ggrrrrrrrrr) Lastly, and I know this is a lot of info to ask, so share what you can.....How were the results? Would you go through it again? Thanks in advance...I know this was a loaded question and I will be grateful for any answers.

Im sure it is very doable. But the train is more expensive than you might think. You ought to look into renting a car as well. Its a very easy, straight drive to RI. The city of Providence is right off I95. These days you can even rent a GPS for $10 a day. If you didnt want to pay for parking you could drive to the airport in PVD and get the MArriott shuttle to pick you up. It sounds complicated, but its really an easy ride. I make that ride many times a year.

Carly, just realize that the 504 and IEP are only mandated in public schools that accept federal funding. If your child goes to a private university they make accommodations upon their own discretion. Im sure you knew that, but thought it was an important point to bring up.

You could always switch to another and see if it gets better. Also make sure you leave at least 3 hours between anti and probiotic.

In right there with you. I'm constantly wondering if DS is bipolar. Our pandas doc reminded me that my DS responds to Motrin. If you took a true bipolar kid and gave them Motrin if wouldn't help the episodes if rage, ect. But I still do contemplate the same thing, especially since he didn't tolerate SSRIS which is common with BP.

I'm so sorry to hear all you have been through. Is he in any other meds? We are dealing with med reactions now as you've seen. Can you ask the school to take careful notes to help figure out if there are any specific triggers? I'm also thinking a neurological eval might be a good idea. Has anyone seen this irradic and sporadic behavior associated with IVIG before?

We are going through the same process now while DS is in crisis mode. Shame on them for not helping sooner. I've been blown off since the beginning of school until our doctor wrote a compelling and strong letter referring to PANDAS as a terrible affliction. Here's what was requested. A cool down area A cardboard office to restrict his views from others. Rewards for any possible positive actions. Modifications of assignments. Handwriting regression to be excused. Daily visits with several adults in school. Visits with these adults during panic attack or when anxiety and agitation becomes overwhelming. Give him lists of preselected books that have been deemed free if his fears. Only positive redirection, no punishments of any kind. No loss of recess. He is not to Re do assignments handed in for any reason. Give him mouse pad for quiet drumming. Use of fidgets to provide for movement. Allowance to move or stand. Expectation that academic skills will return after crisis or flare therefore he is to be excused from assignments that cause distress. Notification required when any child in school has strep. There is an asterisk on accommodations that are only to be enacted upon during flare or crisis which can be implemented upon direction from teacher, parent or doctor. (Did not asterisk above, but you get the picture)

DS is 8 and weighs 74 pounds. He is getting at least some lemon balm because he takes Nordic naturals omega 3s which have some lemon balm in them though in not sure how much. Today was another tough day. Dealing with the school was no walk in the park either. I could t even get the school psychologist on the phone but she did email me and offer me an appointment 12 days from now. What a joke!! My PCP write a very compelling letter asking for many accommodations. That should help. Peglem. That san interesting article. Could two weeks of a medication really cause depletion that quickly? Also wondering now about ability. Our doc is considering it but I'm not sure I want to go through this again. On a positive note I have been absolutely blown away by the outstanding patient care at MGH. Never in my life have I had such attentive and compassionate doctors. I am truly grateful for that !

Pow wow his PANDAS psychiatrist doubles the dose bc he was in such a small dose and Ocd requires a much higher dose. It takes about 5 weeks to get the initial dose in buy far less for increases so timing would suggest it could be a med problem. Pr40 you are so right. Out doctors office is seeing tons of strep which makes this even more complicated. I'm hoping for the med reaction and not the infection bc meds we can control. qannie yes it is frustrating! Thanks for sharing your ssri experience. We are going to keep him on the lower dose and see how things pan out. Our other doc (now in maternity leave) had left the Zoloft alone but increased the intunive thinking that was the lesser evil. But he was falling asleep in school everyday so our other dr tweaked the other meds and cut the intunive back down. It was magic for two weeks but is a disaster now. But with all the infections at school I'm really confused. To make matters worse I haven't even MET with his new school psychologist and this is just stressing me out. Thanks for the support and ideas everyone. Keep them coming.

This is very perplexing. DS was doing so well. He had recently had his meds adjusted it seemed to be working like magic! He still struggled with fears and Ocd but functioning very well, sleeping, and acting like himself. On Saturday that all changed. He is now having temper tantrums, is very agitated and hyperactive and makes these awful faces while trying to kick and punch us. We call them PANDA faces. We have seen this all before and it was after 5 weeks of Prozac. We took him off and he got better but that was also when we added abx so who knows? He had been on 12.5mg of Zoloft since June and was doing fine. Not sure how much it helped but seemed to take the edge off and he tolerated it well. 2 weeks ago we upped it to 25 mg and he seemed to be tolerating it awesome. Again, not much improvement, but a little. Then Saturday it all hit the fan. How do you know if its a flare or a reaction to something else? Motrin has always helped keep his tantrums under control but nothing is helping him now. Tomorrow he's only getting 12.5 mg of Zoloft again and we will see if it is helpful. Does anyone have any insight here?