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Everything posted by dcmom

  1. beerae- I will throw this out there also- I can't remember how old your daughter is... My two girls are now on prozac. I do credit the prozac for keeping mood issues in check. My younger needs it as she does have baseline anxiety, but my oldest has no baseline issues. I have found at a low dose, It lifts and stabilizes mood for my daughter(s) in and out of pandas flares. We no longer get aggression, hitting, yelling, temper, anger. We only get ocd. While ocd is horrific in itself, it is much easier on everyone when there is not that horrible mood stuff along with it. I know many on here don't like the ssri's - but I wish that I didnt wait so long to give them a try. Life changing for us, and at very low dose so I feel really good about it.
  2. I am so sorry. I remember your daughter's story. I can share Nancy's sentiment. Although we are not there yet with my daughters, things are a lot better. Both girls still flare with pandas, but the episodes are limited to ocd only. While this is still extremely disruptive and sometimes debilitating- both girls no longer have food restriction or mood issues (tantrums, etc) with a flare. It makes life at home happy again, even if ocd is making life outside the home difficult for them. My hope is that episodes continue to get milder and milder, until they are just a bump. My thoughts are with you and your girl.
  3. I second Mama2alex's recommendation of the Rothman Center. We have been with both daughters and are big fans. It does not replace medical treatment, but it really helps, and gives the whole family coping tools. That being said, it has not prevented us from subsequent flare ups with school refusal-
  4. Hi again. I am in NJ too. I will private message you my email if you would like to chat online for support or whatever. We ended up getting an attorney to do IEPs last year. The biggest thing we put in was that- 1. Homebound instruction should begin after 5 consecutive absences without further documentation. 2. While on homebound instruction, student shall still be allowed and encouraged to attend school for any time period during the day possible. 3. When returning to school after being on homebound instruction, homebound instruction shall not be removed until student attends school full time for two weeks. Our school just would not try to grasp the issues. If our daughter needed homebound, getting it started took WEEKS. Then, if she was ready to go back to school, they wouldn't allow it until she got a doctors note. And then, if she was back for a few half days, they would start pressuring her about when they could cut off homebound. This is high school- Both of my kids were able to attend fully in elementary school even during flare ups. Middle school was harder, but the school was sensitive and supportive. The hit the fan in high school- which is why I encourage every pandas parent to get their IEPs as beefed up as possible before that, even if your child is doing great (mine had been asymptomatic for almost two years) and the middle school is handling it beautifully (ours did- yet HS same district- a disaster).
  5. Again, I am sorry, as I looked but did not respond. I don't have a response that you will want to hear, so I was hoping others would chime in with more positive thoughts. I have two daughters diagnosed with pandas seven years ago. It has been up and down. Sometimes a few years of remission, other times, year after year of flare ups. For me, with two, it has been really hard to work. I was and currently am a SAHM, but we did plan for me to go back to work- and we really need it financially. Initially when they were diagnosed, we put that on the back burner. For my kids, school refusal due to ocd surrounding things involving school is really the only symptom they suffer from now. It is unpredictable. I started working, a few years ago and had to quit mid year. I started working the next year, and had to quit again. I also was accepted to grad school to do a career change, but have put that on the back burner. I could go to grad school with the help of family- but I am doubting it is worth the $$ if I am never able to work. My kids are older, high school and 7th grade, and TBH they still need me at home in a flare. In fact when a flare comes now, they sometimes get really depressed (my older had suicidal ideation last year) so we now have a policy of not leaving them home alone at all in a flare. This is not good news. I don't know what to tell you. Some parents can work, and some pandas kids can attend school even while flaring. Mine cannot. It is early on for you to make decisions- you need to see the pattern of his illness. But- you need support. It will be very hard to impossible to do it alone. Can you move with your mom? Will she be a willing partner in caring for your son? I think you need (if possible) to sit her and your ex down and all have a frank discussion about the future. Do you get alimony or child support? Is there the option for more? I think you need to plan for a worst case scenario that your son will need a caregiver (and not a teenager) at home until he is 18. It will not be constant- and this is worst case- but if you can plan for that, and things are better great! In the best world it would look like this- you, the Dad, and your mom all agree that there may be times your son will be homebound and someone needs to be there. Either you alternate who takes a leave from work, and you do grad school (at night?) and pursue a career, or depending on finances you decide one of you stays home, maybe works from home or a smaller part time job. It sucks- there are no easy answers.
  6. Yes. My daughters both had the flu mist for the first time about 2 mos before pandas onset. They both had strep with NO SYMPTOMS other than pandas symptoms at time of first episode. It was luck that we found out about pandas immediately and cultured them. They had NO TITERS after that documented case of strep. In the years previous to pandas, each had strep once or twice with symptoms and no pandas issues. I definitely wonder if the flu mist contributed! I also personally think they had a mutated strain of strep. But tha is me :-)
  7. I would be cautious in getting your tonsils out. Not that I am against it- but first, healing is longer in adults, and secondly, many pandas patients flare up after tonsil removal. If you were to do the surgery, be sure to have antibiotics before, during and after- and possibly steroids for after. I would say the description of your symptoms sound a little more like lyme than pandas- to me. Have you tested for lyme?
  8. ladymavs- It didn't help us- but helps some. A beta blocker propanolol is used off label to help with anxiety. Fast acting. Little to no side effects. You could try it- My daughters are both on Prozac (SSRI). It hasn't helped with the ocd or anxiety, but was a game changer as far as mood and emotional lability. If you have any of that along with the ocd I would urge you to try at a low dose. Prozac start at 5mg, increase to 10mg after a couple of weeks. I resisted for a long time, and am so sorry I did.
  9. I agree- if you cannot get into Rothman until July- try to get into Rogers ASAP. It would be a shame for him to suffer until July.
  10. Rothmans program is 1 hour per day. The would do CBT for anxiety. We have not done DBT.
  11. We have used mino for pandas. One time it worked extremely well. Another time it had no effect. We are trying it for a month now to see if it helps current ocd issue. While I have at times has thoughts of buying meds online somehow- I would not. Most importantly of course is safety, but beyond that the practical reason that you really have to work in partnership with your doc.
  12. Annieo- What you are describing has been one of my daughter's biggest pandas issues over the years. I personally think urinary frequency comes from a physical/biological issue caused by pandas (this is discussed in the literature)- but then for some kids ocd/ sensory issues get involved with the toiling issue and it all goes overboard. I have two pandas daughters- both have had urinary frequency when in a flare up. One does not even notice. The other, it takes over her world with an ocd reaction to it. (always feeling she has to go, feeling she is always wet down there, avoiding using the bathroom, wiping excessively, and on and on.) The fact that this fear is causing her to not want to go to school would be a huge red flag for ocd in my house. In my opinion, your daughter needs treatment for pandas (antibiotics to start, maybe steroids) and she also needs CBT/ERP therapy to help her with the ocd/sensory involvement. All of my daughter's urinary issues resolve when pandas episode resolves thanks to treatment. Good luck- I know how frustrating/disruptive this is to all!
  13. annieo- I am so sorry you and your family have suffered so much. Your daughter's symptoms sound exactly like my daughters first onset of pandas. My best advice to you would be to find a practitioner that treats PANDAS, hopefully recommended by someone on this board, or pandas network.org. In our experience, they are the only ones who can effectively treat this disorder. Don't waste time, as many have waiting lists. In the meantime, try to keep things as calm as possible. See if your doctor will keep your daughter on antibiotics until you can see pandas doc, and consider treating your daughter with 5-7 days of round the clock (as if she had a fever) advil.
  14. Here is the book I am talking about. I have not seen it, but we have several copies of the OCD version of this- and it is the best book I have seen for kids with ocd, so I would be hopeful on the one regarding anger. It is a workbook, and it will probably be simple enough to do with your child. http://www.amazon.com/What-When-Your-Temper-Flares/dp/1433801345/ref=sr_1_1?ie=UTF8&qid=1458140689&sr=8-1&keywords=what+to+do+when+your+temper+flares It is "What to do when your temper flares"
  15. Hi. The great news is that she is almost back to baseline. It may take longer to see a final resolution of symptoms, even another month. During this time I would slowly start reigning in behavior with appropriate parental response. We have found, that during a pandas episode, lots of rules go out the window just for the family to get through the day. Once the bulk of the most debilitating symptoms go, its time to actively work on the remaining. As a parent, you definitely need to stay calm, and model calm, because of course scolding someone in a temper tantrum is not productive. I would consider talking to her at a good time, and making a plan for temper tantrums. She might still have trouble controlling this- but if she can be taught to go to her room, and punch a pillow- or go outside and swing- something away from people, safe and calming- until the anger passes. I know there is a good workbook on this- I will look for it. You could also institute a "time out". Again I would tell her at a good time, that behavior is not allowed, and if/ when it happens (she should first use a calming technique), but if she misbehaves during a tantrum, she will have a time out after ward. I would not give the timeout until it resolves. A timeout should be about 2-3 minutes sitting near, but away from you. We used to use our staircase. When the timeout is done- all is done and forgiven. You really have to go with your gut on using these techniques as to whether she is ready. My daughter, age five at onset, now 12 had a lot of these types of issues when she had pandas. We learned these methods from our psych and they worked wonders. Later on, in 4/5th grade, when she had some mood issues (short fuse, anxiety) that wouldn't clear even after obviously much better from pandas, we put her on low dose prozac, which immediately cleared these issues up. While she still has pandas flares, since on prozac, no mood/ temper/oppositional type stuff at all. I am not advocating prozac for a five year old, but just suggesting you keep it in mind. If we had put her on it two years earlier, we would have saved a lot of heartache for all, esp her. Good luck. She will get there.
  16. I would say, sadly, that if a child is symptomatic then they already have the disorder. The only advice I would give, on this journey for 7 years with 2 kids, is to treat each flare up as quickly and aggressively as possible. When we have been able to do that, they have done great. We find that we need to treat with several components; immune treatment (steroids, plasma pheresis, etc), psychological treatment (CBT and ERP therapy), and yes psychiatry (we have seen great success with prozac- waited too long due to fear to try) and of course the unavoidable time and patience. Get yourself the best neurologist, psychologist, and psychiatrist that you can afford. Get IEPs immediately at school. And, although my kids don't have lyme disease, with you mentioning a slow onset I would probably look into lyme (and frankly I don't say that lightly, because I think it is impossible to get proper diagnoses there). Many on here can and will talk to you about lyme. I will say that the practice of lyme treatment is overwhelming and scary from the outside, and the ability to get a clear diagnosis is tough (it SO depends on what doctor you go to). The hallmark of strep induced pandas is an overnight onset- (which does worsen over subsequent weeks), this is what leads me to think it could be likely lyme is involved. good luck- they will be okay-
  17. When my kids flare, they will watch excessive TV (they watch very little when well). For them, it is an escape from reality. The minute they are doing better, TV watching subsides. If they were boys- I assume this would be video games.
  18. Wombat- So much still to learn. I agree with pow pow, my kids ocd does not go away until treated, typically with immune mediating treatment- not antibiotics. The question is whether your ocd would respond? IMHO the risk is low, vs the possible benefit. OCD is very painful to treat via therapy, so much nicer to treat if it responds to medication. I am thinking you are not in the US? Any chance of getting the Cunningham test? While that may not necessarily rule immune involvement out, it would be a great clue if your numbers were elevated. You may be able to take that to your doc and negotiate treatment. My girls have typically done well with steroids, however sometimes they have not been enough. My thought, for you, if you were my child- would be a throw everything at it at once and hope for some movement- meaning some type of immunotherapy (high dose steroids- if not maybe a five day steroid burst every month for three months), at the same time considering an antidepressant (prozac has helped my girls with mood stability so much), and once the first two are on board, adding in intense (daily) ERP therapy with an experience practitioner. We have found this combo approach the best. Best wishes to you.
  19. Uh- isn't IVIG covered for Sydenham's chorea? I would consider switching docs- but maybe don't be so fast to ditch the SC diagnosis. If you are diagnosed as pandas you likely will pay your own way for IVIG.
  20. Is it possible it is OCD and not ADD? Just wondering because I have two girls that when they flare HW is impossible (honor students also)- but it is mostly OCD causing issues. We just started propanolol which is a beta blocker, and seems to help the general anxiety enough to calm things down. We are in a similar spot where kids are only doing 1/2 hr- not good- but it is OCD/ anxiety shutting them down. What is school doing about time he missed? Holding him back or letting him go forward?
  21. I am so sorry for what you are going through. I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas. Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another. I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention- The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no. Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.
  22. My kiddos are highly functional when well, and when flaring ocd prevents them from getting to school (and even doing schoolwork at times). We have an IEP which gives them homebound instruction on the 5th day absent from school, without additional doctors notes. Both of my girls have spent significant portions of their school life on homebound, yet also have spend a lot of time in school and doing really well. How long has your child been experiencing pandas symptoms? I think homebound is a good option, because I wouldn't want to make any decisions until he is treated. Good luck!
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