JoyBop

Oh my goodness, such great feedback from all of you! Thank you! You are all helping me get a good thought process in order before this thing goes in the wrong direction. Smarty, excellent advice! I was at the conference but somehow that wasn't in my radar with this, so thank you. I will be very careful about what I say. The whole developmental history interview through me for a loop because he was perfectly normal up to this point and does not really have anything abnormal on his developmental history whatsoever. I will be certain to state that going in. I did sign off on the eval to add this person to our team and was told that she is a good go between for non-educational professionals (I e doctors.) I have heard from others that she can be a good advocate for the family if we play our cards right. Peglem. Thanks for your input as well. There is nothing worse than a biased observation. Last school year we asked the school to provide a psychologist to do an observation. The district provided one and she put a label of attention seeking on each and every action and movement DS made. It was so bad that Our psychiatrist asked for it to be removed from the record because it was a judgement and not an observation. The school psychologist agreed and it was shredded. That was at a different school as our system has one school for k through 2 and another for 3-5. Its unfortunate because we just for a new principal who is not involved in anything and has no clue what's going on and the school psychologist is not the kind you would want running the show. She does not have the students best interest in mind. Thankfully we have a team of pandas doctors at MGH that would stand behind us if anyone ever questioned our intentions as parents or the disorder in general. We do have our psychiatrist on our team and have the name and number of a great advocate should we need her. I did t want to call her in just yet as I didn't want to step on the drs toes and see how she handled things first. The school responds to her very promptly and positively so I don't want to make a bigger mess unless I need to. In the end, my child is very bright and I'm sure he won't qualify based on educational deficits. But if we tackle this correctly we should be able to get him more assistance based on his ability to perform and function due to anxiety, OCD and motoric hyperactivity. In our state this falls under OHI and is based on medical condition. I am so curious to see how he performs on tests. They have already begun and I am aware that they are testing him verbally and not making him out pencil to paper. I hope they reflect this in the scoring and reporting but I wouldn't put it last them to leave that part out....but since I am aware they have made that modification, it will surely backfire if they try to go there. Thanks again for all the awesome advice. My meeting is on Jan 2 with the social worker.

The NIH is dr Swedos natural history clinical study. The testing will be specific to deficits found in pandas patients. It won't be a full nueropsych, just those portions of tests that ring a bell for pandas kids. One part that I am aware they are testing, and was mentioned by dr latimer at the pandas conference as a good one to look at for pandas is Rey osterich. Thanks for explaining the developmental history. I was a little nervous that they were trying to see if we should be reported for something bc its a home visit. So your child had no deficits and was very bright prior to the onset? My child wS as well. I'm curious to see if there is a decline In Cognition in addition to factors that are not allowing him to participate and cooperate in school. (Or focus)

Thanks for sharing all if that. What did the neuropsych report actually show? We are getting an abbreviated one at the NIH in Jan. I have no idea which portions they do but I assume it will relate to pandas. If there are any red flags I will have a nueropsych done. But that type of testing goes to my deductible and I will have to pay &1000. So my plan is to wait until we max that out, or if he flags anything with the school eval or testing at NIH. I was told the test results are sent out 1 week after our discharge there so I'm excited to be able to get the results so quickly. Our school downplays everything since my child isn't a behavioral problem so to speak. He is sweet and charming and is not throwing chairs or biting anyone so they can ignore him easily, is my impression. The principal told me she observed him and he was just fine. I will totally trust our psychiatrist on this one with her observation. I know my kid would act up a lot more with me in the classroom. I wonder how he does wih other Observants in the classroom ? He will be out of school for a whe week for our trip to the NIH which is putting a lot of this on hold. But I do have a meeting with a school social worker next week. I have no idea what her role is but I was told its a developmental history interview. Ever hear of that?

I forgot to mention, be sure to ask them to culture the tonsils. It's not normally done but is in pandas to see what type of bacterium grows. My DS had all sorts of strange opportunistic pathogens.

My DS at age 2 had h pylori which is almost unheard of. He now has pandas and is 8. He had severe allergies and reflux and all kinds of horrible to problems as a child. Half the worlds population has h pylori. Many people do t react to it all while many have bleeding ulcers from it as my child did. We treated him with the abx and ulcer meds and retested him and it was irradiated. He is going for another scope in feb as his reflux is back. It will be interesting to see what they find. In the meantime you can have a still sample to test for h pylori. What are your dh's symptoms

How old is your child? And at what age did she start declining in speech abilities? It is purely the spoken word? Or is there also avoidance of eye contact and loss of body language as well? Interestingly, at the pandas conference one of the docs compared pandas to autism saying that it's the same type of assault by the immune system on the brain. They also said that many of the diets that work for autistic kids are also being found to be helpful for pandas so you are definitely asking a great question My dd was 2.5 when pandas struck and the first thing she was worked up for wAs autism. She didn't quite for the bill as she still seemed to be in touch with conversation even if she responded inappropriately. There are also other disorders that can cause a loss of verbal communication skills. There could also be obsessions that cause a child not to speak. Its so hard to say.

I have found dr geller to be one of the let thorough, efficient, and compassionate doctors around. We have tried meds to help alleviate DSs symptoms but he is very quick to change or discontinue them if they are not working. He has been very supportive if my decision not to medicate as well. The care we have received at MGH has been above and beyond. Once I sent an email through the patient portal letting them know we were having some significant side effects. This was on a Sunday morning. Within 3 hours I received a phone call from the on call doctor and I was blown away. It's not like I had called coverage with an emergency, it was more of an FYI kind of message. We feel so fortunate to have the docs at MGH!

Are you kidding!!! Its a dream!!! How wonderful for you both!! I hope this brings DS the whaling he deserves. Our kiddos had IV steroids prior to surgery to minimize swelling, and IV abx pre and post op. We are on long term abx so that didn't change. Staying overnight is awesome. I wish they made that standard as those IV Fluids go a looooooong way!!! It's excruciatingly painful to swallow those first days post op and dehydration is a battle. Let the. Give him as much fluid as they can! Popsicles pudding and smoothies are all my kiddos would swallow. We were also at a very pandas savvy place and they see many kids with pandas. The nurses were very compassionate and that went a log way in calming my nerves and making me feel comforted. Best of luck to you for a safe surgery and slowly recovery!!

Its tough, but if you are willing to play the game you can get the info in a timely manner. Most docs don't do their own phone calling unless something serious is going on. Often they review the cases with their nurses and they make the call. In any case, if you call and ask to speak with a nurse they will likely get the Ido for you quickly, especially if you seem concerned yet patient and understanding. ( again, tough to pull off when you are dying to know the results!!!) then, if you have questions and there are some true abnormalities jt is appropriate to ask the doc to call you at their convenience to discuss further concerns. But the best way if all is to schedule a follow up so that you get the doctors undivided attention. I work in a doctors office and I can tell you that the staff who answers the phone can get really annoyed patients who make multiple phone calls asking for results that aren't in yet. Often they have no access to those results or even have an understanding of how long they take. They have 10 phone lines ringing at a time and people giving them a hard time at the desk. I know that's no reason to give anyone a hard time, but its a tough job and they do take a lot of abuse at times. So if you direct your question to the right person you are likely to get a timely response. The folks who answer the phone have a specific job. They schedule appointments and put in what are called phone messages. So the most professional and productive thing to do is call in a friendly but professional voice and ask if they would kindly put a phone message in to dr x nurse bc you would like to hear the results of the xyz at their earliest convenience. If the results at not in would you kindly give me a call back and let me know when I can expect them because id hate to call and bother you again. Ask who you are speaking with and make a note to yourself. Then if you haven't heard back in 3 business days by all means call back and follow up. I hope that is helpful.

Good luck !!!! And be ready for a couple weeks if he'll, but it will all be worth it!

Thanks so mix Cleo! I would be thrilled if they gave him a para. But that is very unlikely unless we go to battle and take them to court. I will do it if I have to! I am so happy that our psych will be doing an observation bc I have very little info on what happens in school. So glad to hear about your success!

I would call the office and ask for a nurse to return you call to tell you what the expected amount if time will begin see the test results. Thenbstsrt calling when that time comes. I totally know the feeling of wanting to know those results ASAP but at the same time you don't want to aggravate the office if you are calling everyday and it is an expected 6-8 week turnaround. That's why I would ask for a nurse to call. They will get the correct info as opposed to asking the girls who answer the phone who may not have accurate info. Good luck!!!!! We can't wait to hear the results also. Sorry your dd had such a difficult time. I hope what you learn is worth what she had to endure.

Good point about the mice....however they were inbred to have certain genes that made them predisposed to auto immune disorder and he didn't elaborate in exactly what that meant.

Sorry, I meant to say it would be the worse thing for my child, of course not a child that needed a full time, devoted aide. My son sounds similar to your dd but not as severe. He is able to make it through the day and function but he needs a lot if assistance. Sorry that comment came out the wrong way as there are definitely children that do need and deserve a full time aide. What is a para? I've never heard that term before. I'm shocked that they were able to give your child an aide without an IEP. Everything I've heard here (unless it's just an excuse) is that no one gets an aide without it being directed on the IEP. I think they use that as a road block in our district. I'm also shocked that they would allow your child to go from 1st to 3rd grade with out any kind if catch up plan or eval. It's not surprising at all that the iq would drop based on the fact that the testing is specific to grade levels. I'm sure your dd will catch back up once she gets back on track. I can totally relate to everything you said about your child's symptoms. Im hoping that getting a good plan in place will prevent it from getting more severe. For now im thankful that he is able to go to school but I can see that it gets harder all the time.

Our son had his first flare last Christmas Day. We all suffered until May 3 when we finally became aware of pandas and had the positive strep test (in addition to the one that we treated last December). Within two weeks we was a dramatic improvement in his function but here we are, 7 month lasted, still on and and still suffering flares and chronic symptoms of OCD, anxiety, sensory, ADHD and other bugaboos. Yes its better and less debilitating but still a daily struggle. I ask myself the same question. I'm hoping our answer is IVIG as we haven't tried that yet.

That is so sad that you had to go through all that. I'm glad you actually got the job done! Did that process cost you a lot ? Our case is slowly rolling along. Once our doctor got in involved and started to send emails out it was amazing how fast things started to turn around. I'm saddened that the only way out school will listen to you is when you have a doctor or lawyer involved. They brought in a social worker who is doing a develope mental history and extensive family history for us. I have no idea if this is typical but I intend to give her as much info as I can. Our doc is also going to do an observation for us. I totally trust this doc and I will not second guess her recommendations.

I know that can be so frustrating. You do have pandas docs, don't you? If you do maybe you could compartmentalize the pandas. I'm not saying don't ever mention it, but let your PCP take care of all your family's primary care needs, but when its a pandas related issue take it to your specialists. Your PCP can't argue with that if you are notweeks asking her to step outside of her comfort zone as far as prescribing treatments for things she does not understand. Then see if your specialists will write her a letter or send office notes and that will reinforce your concerns and clarify the diagnosis while taking the pressure off of both of you. It sounds like you really want her to understand and be supportive. Perhaps she will be if you build upon it slowly and give her supporting documentation from other docs.

I wonder if that tingling is how he articulates the feeling that a tic is coming on? My guess that you your son has true sensory integration issues as well. My kids were diagnosed with SPD when they had all the symptoms but none of the treatments help resolve anything. It sounds like treatment helps your so nretulated himself. We did the couch cushion compression also. Large bean bags work also, or making likes of studded animals and allowing his body to sink in as if it were a nest. Also bouncing on a therapy or excersice ball, all if these things were recommended by our OT. None of them resolved anything for us bc my kids SPD symptoms were brought on by pandas and resolve when they're not in a flare.

Strep B shouldn't be a culprit nor should a vaginal infection. But I suppose anything is possible! Keep us posted!

We go to all MGH docs and they are amazing, compassionate, supportive and open minded. It's not easy to get in but if you can you are very lucky and in great hands. I have only fantastic things to say about all 5 of our docs there. Feel free to pm me if you have any specific questions I can help with.

I hope it goes well!!!

Sorry to hear that. We can relate as my son who is 8 has similar patterns if holding together In school. We had him on low dose Zoloft for white some time. It it was slightly activating and made him even more agitated and bizarre but it did help take the OCD. Not complete. We took him off about 5 weeks ago because of the NIH study and now realize how much the Zoloft really did help as its pretty awful now. But he has less side effects do its a catch 22 Next in the list to try is abilify. If that doesn't work I'm done. As far as finding a med that won't backfire there is no such thing. You have to be willing to try if that's the direction you want to go in. I knew after 1 week that Prozac was a nightmare and I knew after 2 days that an increase in Zoloft was a disaster. I agree that it does take 6 weeks to get the whole therapeutic dose in but if its not a good fit you will know much much sooner. The prob with these meds is that are are very activating and can make everything worse. Zoloft was helpful but hurtful at the same time for us. We still to back and forth but finally decided that his real symptoms are better than side effects if we had to make a choice. Well be trailing abilify when we get home from NIH. Will let you know. You didn't mention if your child is being treated with abx

As long as it doesn't cause any set backs or harm, I would certainly do anything I could to show them the worst.

Some people are carriers for it. I was pis for three of my 4 pregnancies. I have to ask myself if that has anything to do with a lot. Ironically I was also induced for those same 3 deliveries. 1 has severe adhd and the other 2 have pandas and past food allergies. The one where I didn't have steen b and was lot induced has no issues....aside from your average 14 year old issues.

Yes, we have super expert training!! We just did the same party in our school....a cookie decorating party. More frosting and goodies went into the mouth and on the floor than on the cookies. It was also great to be able to actually observe how my son behaves in school. Its true though, 26 average children can be easier than one child in a pandas flare!