nevergiveup

Yes it is important for them to see your child when the child doesn't feel well. They are more inclined to offer help and documenting system and childs appearance is important. Call and see if someone cancels. I would try to see if you can see a neurologist now. name='tantrums' date='Dec 17 2009, 08:54 PM' post='49162'] Oh I DO plan on going to them and I did take the appt. for feb. 25th. Just wondering if I should call every day and harrass them until they get him in sooner, or try other places. The immunologist recommended CHOP or I'd just go to Dr. T. It's sadly all very complicated right now due to my surgery. If it were at all elective, I'd put it off longer, but quite honestly, I just can't do it!! If I can get out of at least some of this pain and be able to move around more, I'll be better able to take care of him.

He actually diagnosed my kid with sc. Then after blood and mri said lupus. But would not give me her ANA results said " I would never understand them anyway." So I walked down the hall and insisted on knowing what my dd's ANA results were. He refused to give her test results. He never gave them to me I had to get them from rheum her ANA was 1:2560. All this and originally, we hadn't even made an appt with him, his nurse called us at home and said we had to come in immediately, that the er should not have sent us home. He gave us money to be in an sc blood study, had us sign wiavers saying we could have results of study and then when I called to get study results a year later he said she never had her blood drawn. We had to have an escort examine and be at the blood draw and take the "special" vial as per study req's and then he tells us she wasn't in it and I am a liar? He even gave my dd ten dollars in cash that she took to school and gave to a charity. I have the papers and docs i signed for the study with all the proof but by then we just tried to stay away from him it was hurting my dd's care. Not to mention he also completely confused my pediatrician. If I have a problem that needs addressed by a tics expert I would see someone with a better rep than his probably hopkins. [ quote name=Vickie' date='Dec 17 2009, 08:08 AM' post='49063] Well, I think this is what Gilbert is doing. He will give a verbal diagnosis of PANDAS but not tell the parent that he is not putting it in writing in their med file. He marks "no" in the med file. Then the ped sees the "no" box marked and figures it's not PANDAS. It is because of Gilbert that I had to fight my ped over my child not being bipolar. Gilbert even prescribed a 5 day steroid for my son. But then when I inquired about it again in another exacerbation he says I'm looking for a quick fix and wouldn't give it. Literally as quick as my son had OCD, Gilbert was anti PANDAS and sending my son to psychiatrist. I don't know why I try to understand that man. I don't know what he is accomplishing by messing with these parents. I want to address him on this, but I don't even know if that's a good idea. I don't want to give him "insider information" about ped's getting the truth. I'm suprised your friend's son got PEN VK for a year. Hopefuly that is s sign that ped's are opening their eyes. Even when I've questioned docs about their treatment of Rheumatic Fever and prophylactic antibiotics, they pretty much dismiss me, change the subject, or if on the phone, abruptly hang up.

Kim. We use to take it, I got it from Allergy Research Group. Any issues with this company's purity? Heard it helps wth ms.

Agree SF Mom. Totally! I think all relapsing remitting ts with a comorbid Ocd is pandas. My neuro says there are probably 4 different types of ts (he's pretty well known for ts) one autoimmune, one something to do with birth weight and brain develop, one genetic with tics only and he didn't tell the 4th. I believe if the child develops OCD early and tics early like 5 yrs thru 7 years old with or without a strep diagnosis it is still most likely autoimmune. I think stats show that over 50 percent of all ts kids also suffer from ocd.

I am not sure what you mean by the neurologist says "he wants him to have the next avail appt". What else would they give him the next non avail appt? Sorry its just that these docs make me laugh at there ignorance. Lets see Feb 23 he could be in complete remission with no signs of chorea a key indicator of sydehams chorea or pandas. Its hard to diagnose these kids without seeing them. I am sorry it takes so long to get in.

I heard this goes into funding for future pandas studies, I hope this is still the case.

Its weird Vicki, my friends ped took the aso titer, saw piano fingers and tics and immediately said PANDAS. Prescribed PEN VK for over a year and then booked an appt for Childrens. OK so now what, Childrens is going to tell her the illness is not real and they do not think he should be on PEN VK. The tides are turning when the peds are diagnosing and prescribing. Twenty bucks Childrens doesn't interfere with peds decision. Its too common now, Gilbert is going to start to loose credibility in this community if he doesn't start to understand one year of PEN VK won't hurt and if it prevents a relapse then great!!! He claims to be a leader in tics and ocd but soon no one will trust him, lets see Haldrol or abx....... Hard decision, He actually tried to give my beautiful dd Haldrol in the emergency room. Are you kidding, and he says no ivig because it may harm the children, but Haldrol is safe??? Anderson huh, were close by. Let me know if there is any way I can help.

Mama2alex, Immunologists usually test vit D levels. My dd's immune doc tested hers. I know my dad the immunologist likes to test his patience with asthma. I heard 2,000 mg per day. Apparantly its hard to get toxic amounts (must be D3, best type is from fish) body discards what it doesn't need (toxicity of D is old and outdated, I also heard the FDA may be changing daily req level to above 1,000 for regular healthy people. Mama2alex talk with your immune doc about it. Also be glad your immune doc didn't think too much about the IGM levels your son has, one protocol to treat that is MULTIPLE pnemoccocal vaccines. My nephew after several pneumonia's was diagnosed with an IGM def. They do monthly vaccines to strenghthen his immune system. I will never understand since he didn't produce a response to the first three or so. They kept vaccinating until he finally did. IGM never went up though. I think he got many booster vaccines. My dd has low IGM, has for 7 years, around 50. I think it goes hand in hand with her CVID diagnosis. If the IGG's are low usually so are the M's and A's. I don't know the difference between an IGM deficiency and low level IGM's. I am assuming a defiency is very low levels????

NÓ we really don't want to promote SSRI use. Murphy warns that SSRI can be detrimental to PANDAS. You know, some parents love and trust their docs. They really have no idea what it is like to have their child diagnosed with a politically incorrect disease. One that, if the doc legitimizes the illness, other docs may hurt the docs career. Also many parents will go to neurologist whom will tell them that the illness will disappear and many kids have tics and ocd. So thats exactly what they want to hear. Oh good it will go away, thank god. So awareness is key so they understand that the strep correlation exists. Most people don't understand autoimmune conditions and they trust their docs. Obviously if the child gets worse and the docs offer nothing up, hopefully the parents will start searching. This is a sore subject for me right now because a friend of mines beautiful little boy was just diagnosed by her ped with PANDAS. She, Monday went to the very same neurologist I was sent to 7 years ago whom does not believe in pandas and is resentful of mothers who do. She knows what I have been through intimately, she is my dd's godmother, and she said to me "I trust my pediatrician she know what she is doing". My belief is to create awareness, so these docs cannot keep saying this disease doesn't exist. I don't know really, I guess its up to Vicki, her target audience and her purpose. I have noticed that the Saving Sammy stuff has not received too much controversy, people are listening and interested because its a simple story to understand, one that isn't too complicated and it makes sense. Strep in brain caused brain issues, abx cured strep brain issue not SSRI. We know its more complicated but, the average joe gets it, and is more aware now than ever, and parents are coming to the forum, seeing specialists and putting this illness on docs radar. At some point people will start asking what the A in pandas stands for.

Pretty ladies. I do believe God puts messages up all around us, its no coincidence. I saw the same add and my girl was sick all the time. It led me to do more research and helped find solutions and treatment for her.

Vicki, First of all, you are an excellent advocate. You will be helping many children by creating awareness in the community. I would ONLY give them data from doctors web sites or published data from studies. I love the faq sheet but if anyone finds out it came from a chat site you'll loose your creditability and you'll will be cut off from future things. I would publish a desk top sheet with info for mothers to talk with other mother and advertise this web site address. Again mention its just for mothers to communicate with other mothers if they need social support. I know of several doctor web sites that are very good like the rheum at boston childrens, and a neuro in dayton. Also I think a very good document explaining the symptoms, onset, differentiation from ts, are in a document published in 2005 by murphy, larson, storch in the Journal of Family Practice. Called "Is it Pandas? How to confirm the sore throat *OCD connection? That sure will get the mothers attention. She even speaks about treatment options and even states immun therapy is ok for the most severest cases. But goes the conservative route for most kids, SSRI and CBT and maybe prophylactic abx is necessary. She sites case examples that will get teachers and moms alert. The schools will listen if the data comes from the experts. I think this is AWESOME. More parents pushing Gilbert to look harder and think out of the box.

Brooke, How frustrating! What abx and dosage was your child on when he got strep? What are you switching to? name='brooke' date='Dec 15 2009, 08:35 PM' post='48883'] We are almost two weeks post PEX, and just diagnosed with Strep. We had AMAZING results for that period. So far a bit of an exacerbation, and not too fun. We will switch antibiotics to treat the strep. Any input from others would be welcome. Just as we were thinking we could do a normal academic environment! Thanks, as always, for your support!

I am so happy for you and Danny. We sure do treasure the good days. I know how hard it is to wait on a trmt that you know will help. My dd had IVIG in May. She started to deteriorate again and we had to wait for insurance also. It is a painful wait and so frustrating. My thoughts are with you!

I think it is a severe case of your autoimmune condition. Thyroid antibodies run amuk. Its my favorite line to docs whom are non believers in the immune system causing antibodies that cause movement disorders and ocd. I just mention hashimotos encephalitis and lupus and they are suddenly thinking a little harder and more open to searching for physical solutions. date='Dec 14 2009, 01:05 PM' post='48636'] Mine is Hashimoto's Thyroiditis which I believe is related but not the same. I got it when I was 29 when I was exposed to disel fumes (at least we think that is what activated my immune system in this way). Susan

Yeah, she has CVID and gets monthly infusions. I know what your thinking, abx doesn't kill strep just weakens it so the immune system can then attack it easier. I think this is a rather simplified version of the process. So I guess exposure to strep will still cause her to get strep, whether she is on abx or not. Its just whether or not she will start over producing antibodies against it. Maybe thats the reason why these kids still react when family members have strep because they have it too just not anything that the doc can measure in their throat becuz they are on abx. I guess then strep titers is a better measurement of recent exposure? And when exposed even in small doses creates an immune response. If I can get this why can't the neurologists get this too. And move these kids on the immun docs?

My dd when she was young had hyper loopy behavior before every illness (fever) came on. She later developed pandas. She also has cvid and probably SAD. I say probably becuz we would not vaccinate her with the pnuemoccocal vaccine to validate the diagnosis but she failed the titers test terrible first pass. If your child has CVID then I would treat. This may stop that strange behavior with illness. I know monthly ivig's help my kids overall well being and health. They have definately eliminated the hyper loopy behavior and OCD.

Plz keep us infomed with what dr k says about your dd. What does your local doc say as to why your dd's antidnase is so elevated?

Susan, You probably already know this but just in case, hashimotos encephalitis presents very similiar severe symptoms as PANDAS. Mom2pandas, Maybe I am confused? But You had sc as a child?

Because they are not protected from all strains of strep.

My pediatrician use to think it was ridiculous to swab my dd when she had a sore throat while she was on preventative penicillin VK. She would say she cannot get strep while on Pen VK. I know some strep is resistent to azith, so my question is has anyone ever had their children test positive or have a raise in strep titers while on high dose azith (250 mg per day or more depending on childs weight) I know azith gets intracellular strep and is immune modulating, but doesn't it also expose our kids to potential full blown pandas again. If I think my child may have been exposed to strep should I switch her abx just to be conservative? (Even if she is not showing any symptoms at this point). And with a long half life of azith how long should one wait to switch?

How both? I thought you had a dd? I must be confused about the dominant recessive thing? For us it could be either one.

Great idea mom md, I do that because it keeps my MS symptoms from flairing. I always thought if my dd has hormonal changes and it makes her pandas symptoms worse I would put her on the pill continously too. I have always felt estrogen is immune modulating and maybe it strengthens the BBB. Funny how people with MS seem to do better while pregnant, when the immune system is calm. But I have also read where Sydenhams Chorea can flair again during pregnancy. So, this interests me with the hormonal thing, and I am concerned because my daughter is about 1 year off from puberty. Mom md, any ideas why sc would flair during pregnancy?

X link dominant for us

Melanie, Maybe help with the BBB, like blueberries (at least half cup a day), fish oil, adequate sleep, cardio everyday. Selenium. Do whatever you can to reduce him getting an infection. Your question is a good one and many docs and pharmaceuticals would love to figure it all out. I have heard Lexipro has a different mechanism than normal SSRI's, have you tried that one? What about GABA for calming him??? IVIG of course reduces inflammation, its been proven on MRI results from SWEDO. I hope the IVIG is approved soon! Take care, I am praying for you. uote name='melanie' date='Dec 13 2009, 08:35 AM' post='48475'] VERY VERY WELL said !! I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Risperadal helped for about 1 month Every SSRI has been a disaster A freaking nightmare. has anyone had any medication that has been successful? If the basil Gaglia is swollen is there a antiswelling medication I know the steriods help but anything long term,aside from IVIG(still waiting for that) I guess what Im asking is what medications work on that area of the brain? Just want things to be ok I guess Have a good day Melanie

For me the key to understanding and analyzing your kids successes and downturns is clearly understanding the differences in psych illness and autoimmune illness. (However many psych illness wax and wane also and may also be another autoimmune mechansim but that is another forum) Lupus, hashimotos enceph, MS, head trauma, chrohns, all have residual symptoms of depression. When the brain is injured, it obviously messes with it chemical balance. Many kids are finding relief with Lexapro recently for depression. Seems to be a good alternative for teenage depression. Kids with PANDAS, have later in life come down with depression. The key here is why does your child have depression and does your child have SUDDEN spikes in his OCD, including ADHD, attention illness, potentially balance issues, fatigue etc... OCD that stays consistent but may increase slowly and decrease slowly is what most shrinks call regular OCD. Most children however, suffer from Sudden ONSET OCD with remission. I am sure your doctors have told you that it may go away, it does for many children. Thats why the SSRI studies look so pitiful with results, because when they do blind studies, many kids with or without the drug still go into remission. Obviously some of these drugs make our kids feel good or happy, a lot of these drugs make adults feel good. And symptom management is helpful. But immune modulation is trying to eliminate the relapses not treat the symptoms. We have found the high dose abx, steriods, IVIG and even PEX which are all immune modulating help the autoimmune side of this. Kids whom are older seem to have more persistent cases and need more immediate help. The medical community is so far behind on this stuff. I have 1 pediatrician, 2 immunologists, 1 forensic psychiatrist, 1 emerg med doc in my immediate family. All, 7 yrs ago struggled with the PANDAS diagnosis. However, after digging deeper and deeper and doing the Cunningham blood tests and many rheum and immun tests it is very clear that my kid does not have OCD, she has an immune deficiency compounded with an autoimmune problem causing brain inflammation in the basal ganglia. So to get around the skeptics we call it something other than PANDAS. Could all of the brain assaults have hurt her chemical balance and glutamate, sure, could she benefit from SSRI or other psych drugs, sure. Will this help prevent another attack, probably not. Will it add some relief yes maybe. Its about treating symptoms or treating the cause. I say do both. But our current medical community is only on board with treating symptoms, not the cause. You have to find the cause first. I did, there is no physician right now that would not agree my dd has an autoimmune condition causing tics, chorea and ocd. Its whether they know how to treat the problem???? The issue is will your children have permanent damage if they keep relapsing? How severe are the relapses? And are you willing to fight like **** to determine what is going on. I watched my child turn into a different person three times in 7 years. I am very familiar with autoimmune conditions like ms because both myself and my mother have it and I could see the slight neuro issues in coordination, memory, obvious movements disorders, and crippling intrusive thoughts. I am very aware that each one of these attacks (my dd) set her back and she never really has returned to 100 percent. I am so glad you are trying to understand this illness. You will have to fight for your child on this one. My family is a strong believer that you see docs who are the leading experts, whom have done clinical trials and seen SUCCESSES in their trials. Careful though, not docs just looking at genetics of this rather studies of TREATMENTS with SUCCESSES. Docs whom are looking at the autoimmune component of this. I will never forget for 5 years my ped told me my dd has a great immune system there is nothing wrong with it. Finally when I got to the Immun docs and we ran tests the markers started showing up left and right. However there were still non believers. Even still in my family. Then the cunningham tests helped and of couse a horrible relapse with chorea sent them all in a tail spin. This fight is not for the weak at heart, it is overwhelming and time consuming. Some moms choose to listen to their local peds and shrinks and treat the symptoms for now. And in some ways I feel that may have made my life much easier. But deep down inside I knew it was physical not psychological and I couldn't watch my child get the wrong treatments. Not to mention pay out of pocket shrink bills whom didn't get it. Dig deep inside, use your mother instinct. You'll know if it is OCD or physical. I have a friend whose dd is suffering from typical OCD and the mother knows it is not PANDAS. Her dd does not have extreme spikes and her gut tells her it is not triggered from infection. I encouraged by all the press and seeing all the moms looking for answers lately on this forum!