[Contamination obsessions and poor self grooming]

My daughter would also refuse to shower and constantly washed her hands. OCD does not make any sense an can't be made logical. One day she finally told me that she was afraid of the chemicals in the body wash and hair soap and it ran down her whole body and she could never get it all off. I was afraid to ask her why the hand soap was different because I did not want her thinking about it too much. She was also afraid of the soap the dishes were washed in and laundry detergent.

 

At one point she had so many different OCD issues I thought I was loosing my mind that I could not help her. One Christmas morning was the worst after she opened her gifts she started sobbing that she could not play with any of them because she touched them and they were contaminated. I went to hug her and she was afraid she would contaminate me. She ripped off all her clothes ran outside and laid in the snow naked. She said there is nowhere she can be that is not contaminated and where she felt ok. Everyday I would have to buy her new clothes because we could not wash them and after a few hours they were contaminated again. Shirts, pants, underwear, socks, shoes, jackets. These are things that many people can't understand and even if they say they do they can't really. The good thing is everyone hear has a better understanding of the confusion, anger, sadness, triumph, fight, dedication and energy it takes to see this through.

 

On the upside the CBT helps and we reinforced it at home. Her friends knew she had PANDAS OCD and also worked at helping her. She also took SSRI. We were lucky that the IVIG seems to have cured all her symptoms for almost 2 years.

 

It takes time and effort but it does get better. There are really tough days and then days you can see glimmers of your child again. Hang in there!

[son won't increase his meds]

My child 16 refused to take any type of medication. When speaking to her psychiatrist he told us that when someone is experiencing mental health problems they normally refuse medication and this adds to the complexity of the treatment.

The psychiatrist prescribed her prozac to try since her sister was taking it at the time.

 

She was 16 mild OCD and general anxiety disorder and would never complete any medication prescribed or stopped it early. This time I told her I would not allow her to drive if she was not going to take this medication. If my child needed an antibiotic for treatment of pneumonia it was my job as her mother to make sure she took it to help her heal. I would not allow her to decide not to take the medication.

 

It was a battle everyday but when she hit a level where it started to relieve her symptoms she told me she thought not taking the medication was part of the disorder.

 

She takes her medication everyday without me reminding her because she feels so much better. However, I have also explained to her if she should reach a point where it is no longer working she might not recognize it and we may have to go through this again. She wrote it in her journal so if she ever get to that point of experiencing poor mental heath again she can see her own words.

 

Hang in there sometimes being the bad guy actually produces great results.

[extreme expense of IVIG-88K !]

That sound crazy. My understanding is IVIG drug is normally $1000 for every 10 lbs.

[New Here, Just Learned About PANDAS today, feeling hopeful!]

I have a child with PANDAS and a child with general anxiety disorder mild OCD and sensory sensitivity. Your child sound very similar to my daughter with anxiety disorder. She got very angry at noises, humming, TV, sound of bags especially the more stressed she was. She had difficulty sleeping because of the anxiety and she also experienced the full body shiver thing. I thought it look like a seizure sometimes. She had intrusive thoughts and racing thoughts and sometimes could not keep track of anything. I thought she had ADHD. She refused to wear certain things and did not like us touching her. The psychiatrist said it appeared as though she had ADHD but it was her anxiety and she also had a sensory disorder. They went through a few medications before finding the right one. The put her on prozac that finally worked.

 

Intrusive thoughts gone, no shivering, sleeping, not snapping at everyone for noises and demanding everyone is quite while she talks. Decreased anxiety, able to touch dirty dishes, touch people, have people touch her.

 

She had CBT to help with sensory disorder and OCD and most all symptoms are gone unless she has abnormally high levels of stress. but she has tools to help her get through the really tough times.

[A new norm?]

That is pretty much the same with my child except she never really had a bad flare after the IVIG. Almost 2 years since treatment no real symptoms. When she is around someone with strep or gets strep she wakes up and is off. She experiences very mild symptoms. We start her the antibiotic and by the third day she is symptom free again. I try not to look back and stay positive looking forward. We are very blessed.

[Intrusive Thoughts, Depression, Anxiety]

Intrusive thoughts are the hardest to deal with. You don't know everything they are thinking because the psychologist told us if they even have to repeat it may set them over the edge. Most of the time they only tell us the small stuff. I feel for you PANDAS does suck to watch children suffer and be almost helpless. Advil made some relief and maybe an SSRI while waiting for PANDAS treatment.

 

We did therapy with my child and tried to get her to take her bad thoughts and insert something funny with it to divert her mind on a new path. We also assured her no matter what she thought no matter how horrible would always love her no matter what she said.

Hang in there with the right course of treatment. It will improve. I'll pray for you to have strength. Having three children suffering must be overwhelming. Remember to try to take some time for yourself so you can be at your best for your children.

[Intrusive Thoughts]

I have a child who has and general anxiety disorder and another child who has PANDAS. My daughter with general anxiety disorder intrusive thoughts, racing thoughts and mouth her words. She was treated with prozac and and it stopped the symptoms. She said she feels so much better and can think straight without stress overwhelming her life.

My daughter with PANDAS had the IVIG and has had no symptoms for almost two years. It was fantastic we saw the best results around 6 month mark.

[IVIG - really worth it?]

IVIG gave me my 7 daughter back. I would do it again in a heartbeat.

[New here - missing school question]

My daughters school has been extremely supportive. My husband and I had a meeting with all the teacher, nurse, office staff and cafeteria employees. She had a letter from her psychiatrist and neurologist about PANDAS. We supplied them with educational material to help them understand some of the problems she was having. We also explained that it may be better and than worse again. We received a 504 about past an current symptoms she was experiencing.

 

We normally gave the counselor a heads up in the morning if symptoms were bad and what problems she was experiencing. They were excellent working with her and she never missed a day of school. There were times I did not know how the school handled her through out the day but our psychologist told us once she misses school it will be harder to get her back.

 

Each day we received a report of her behavior or any problems she experienced. It was so detailed it told us if she ate her lunch. She had lunch with the counselor at school once a week and also took self esteem classes at school.

 

I was nervous about explaining all this to them but they were so receptive and helpful. It also let me know how may services they had that I was not aware of. I am thankful for them every day. The best part is they just did her plan for next year and said they will still keep the 504 but she has not needed it this year.

[Seasonal Allergies and Flares]

Our doctor recommended sublingual allergy drops. He felt allergy symptoms tax the bodies immune system so anything that can decrease an immune response would help. Allegra and Claritin never really helped that I noticed. However, the allergy drops seem to be making a big difference.

[Can these symptoms go away after IVIG or PEX treatment?]

Before IVIG, separation anxiety, contamination issues, fear of chemicals, obsessive thoughts, urination frequency, rages, baby like behavior, sleeplessness, refusal to eat, difficulty walking, facial grimacing, poor handwriting, excessive energy, fear of bugs, electricity, showers, and more. After IVIG she was sick for two days with headache and vomiting. Four weeks out spike in behavior problems, 3 months out was eating, taking showers, wearing same clothes, 6 most symptoms gone except fear of poison. By one year out all symptoms gone. I would spend the money again for the IVIG it was worth every penny it gave me my child back.

[PANDAS/PANS in Italy -- Family needs help]

try: www.pandasitalia.it

[How often have you done IVIG]

Once at age 7 had IVIG, had mild set back at 4 weeks. Each month after that recovered from different symptoms. By 6 month most symptoms were gone. One year later it is like it never happened. Once she gets exposed to strep she has mild symptoms for the first three days. We choose not to keep her on antibiotics they make her ill. By the third day on the antibiotics they symptoms are gone. We always found that Advil seemed to help best when she was having symptoms. Going on 1 1/2 years with no symptoms.

[West Coast PANDAS/PANS Symposium April 26 by SFO]

This is great! I wish our family could attend. Hopefully next time we get something on the East Coast.

[Help, I am losing my mind]

My child took quite some time to tell me about her bad obsessive thoughts. When she first told me they were little things like I am having bad thoughts about things. I took me a long time to convince her I would love her and understand any bad thoughts she had. I told her bad things I think sometime to get her started. She overtime expressed she was having thoughts of dying, killing other people, hated god, she hated us and wanted us dead, could not get cuss words out of her head and more. I just hugged her while inside I was struggling with this information and scared.

She said she knew her thoughts were not normal and did not want anyone to know. She said she really did not feel this way and loved us but could not get the thoughts out of her head. She was afraid we would not love her, people would make fun or her be afraid of her. If they let any small detail go they are feeling you out for what they can share with you and are having more difficulty than you know. Make sure you let him understand you will love him no matter what he feels and can share anything with you. We consulted a psychiatrist for PANDAS OCD with his care and the neurologist all the symptoms resolved.

[Were there little signs early on?]

My child had no symptoms and i could not even understand the change that happened over a few weeks. I thought back because normally with OCD there are some signs she had no signs at all. I think that is why we got the PANDAS diagnosis in 3 months after it started. By 5 months onset IVIG and today no symptoms for almost 2 years.

[5 weeks post ivig please advise]

My child's experience was not much in the first 4 weeks, the over the next month recovery from different symptoms. Each month she improved by 6 months all symptoms were gone except for still got upset quickly. By one year out everything including tics were gone. The only time we had any backtrack and it was not too bad was when she got strep about 3 months after the IVIG but subsided after additional antibiotic added for 10 days. No symptoms for over a year. Stay positive this treatment really worked for us.

[Is there any role for psychiatry with PANS? Feeling frustrated!]

When my child's symptoms first began I brought her to a psychologist and psychiatrist first. The psychiatrist gave her cloxipam and lexapro. Only made the symptoms worse said she had OCD. The psychologist said ADHD but something was not right. Finally diagnosis of PANDAS that neither doctor had experience with or accepted as a diagnosis. The psychologist has a PHD and instructed us how to do exposure therapy and behavior therapy for OCD. The psychiatrist switched to her to prozac.

 

The IVIG was what worked. A few months after that treatment we were told she no longer needed to see the psychologist and she is a firm believer in PANDAS now. The psychiatrist removed her from the prozac because all symptoms are gone.

 

I like I having another support group in addition to the neurologist. I feel like they understand PANDAS better and can recognize the symptoms for other children. Sometimes its nice just knowing you have somewhere to turn if things are bad. My older child sees the psychologist still because the experience of the PANDAS in our house was very traumatic for her. You should try to get a good network of doctors and a good psychologist not only for the child with PANS/ PANDAS but helps for the whole family to be counseled.

 

[Need feedback on Dr. L.]

I have to say Dr. L gave my child back her life. She had the IVIG and had no symptoms for 1 1/2 years. It is amazing. I am so happy that she is part of the fight to help children with PANDAS. She has a great heart and great compassion for these children. I am thankful everyday that she treated my child.

[Need to Vent]

I feel for you and understand your anger. When my child was experiencing her worst symptoms there were times I thought I would have a nervous breakdown. Family and friends could not understand the suffering of our child and her siblings and my husband and I. I learned to develop and action plan for times like this because my child did not want to tell me her symptoms were back. She did not want to make me unhappy because we were so happy when they were gone. I decided that even though I felt I was hiding my feelings she could see a change in me. I had to figure out how not to let the symptoms effect her and me in a negative way. I am not sure how I did it but I managed to accept it not worry about what might happen and only deal with it day by day. I only worried about it if the pattern lasted for a few days. Otherwise I had to make myself remember my older daughter had similar quirks and had no problems. I remember all the stories of my friends children that do normal kid stuff that I would over analyze in my child to stop myself from starting to panic. Hang in there it gets better as time goes by my child has not had any symptoms in 1 1/2 years now.

[Request for success stories please!]

My daughter is 9 and a complete success story. When she was 7 in August she woke up one morning saying she did not want to eat. Within 3 weeks she was no longer the child I knew. Once a child who was afraid of nothing, outgoing, happy, smart as a whip child was gone. She was convinced her food was poisoned, could not leave my side, aggressive, having terrible obsessive thoughts. Her clothes were contaminated everything she touched was contaminated. She was afraid of chemicals, people everything. Her handwriting was on a preschool level, she started developing problems walking, and developed facial tics, and her hands began to turn inward. I brought her to a psychologist because I thought she had OCD. She call the psychiatrist to see her the next morning. The put her on medication, clozipam, and medication for OCD. Her behavior was worse up for 3 days straight running and screaming. The only time she was better is when taking Advil. I could not accept my daughter would wake up with OCD and researched it and found PANDAS. I decided to bring her to neurologist for a consult. She was diagnosed with PANDAS treated with antibiotic for several weeks and received IVIG December of that year. By January she started eating and walking like normal, and touching things, and wearing the same clothes, by March her facial ticks were gone. She has had no symptoms for a 1 1/2 years now. No OCD, no separation anxiety, no aggression, straight A's, handwriting is beautiful like it never happened. She continued to see the psychiatrist and psychologist for behavior therapy. That did not last long because her recovery was so fast. The psychologist never had any experience with PANDAS and is now a firm believer. She said she never saw a child who was so mentally compromised come back so quickly. She now looks for the symptoms. We are blessed that we caught this so early and found people who could help us. We decided to give her the antibiotic when we know someone has strep. However, when she gets exposed she wakes up in the morning not quite right maybe wanting to organize her closet. By the third day of the antibiotic that organization has gone away. Never thought I would say I did not want my kid to be organized. Don't give up I would recommend the IVIG it gave her life back to her.