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Just need PANDAS support


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We have been dealing with PANDAS since 3/07 and the symptoms come off and on. As I type this my 6 year old is in his room screaming at the top of his lungs kicking the floor. He is yelling he hates me and wants to kill me. His school work has declined this week due to lack of focus and he has been very emotional. The OCD is back full force along with his fear of everything. The only thing I could think to do was get on this site and ask for prayers. I'm taking him for a strep test tomorrow, but I know even if it is negative this is just something we will be dealing with for a long time. It is so weird that he will be in this uncontrolable fit for a few minutes and then he will be upset and tell me how sorry he was for saying mean things to me. The pattern is always the same! I will sit with him for about 30 minutes as he crys and apoligizes over and over again. I worry about him as a teenager. Will he be able to control his fits of rage? When I ask him why he says such hurtful things to me he says his brain told him to. I keep telling him when he has a thought like that he has the control to stop it. Ahh!! I just feel like crawling in bed and putting my pillow over my head for a few hours. Just when I think we have fixed the problem PANDAS rears it's ugly head! :)

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trubiano,

 

You just hold on tight to good thoughts. Since your son is only 6, we have to believe that they will have more of the pieces to this puzzle before he hits the teen years. Many behaviors come and go, even with kids who aren't dealing with these conditions. Don't dwell on what very well, may never come to pass.

 

I'm glad you thought to sign on for support! Everyone who reads this, is right there (in spirit) with you, I'm sure.

 

Kim

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((((trubiano)))))

 

hoping you can bring this under control quickly and that if there has been strep exposure, the test will be clear and the treatment effective

 

we never dealt with PANDAS, but I know how the waxing of Tourette tics and OCD for my son would drain me and leave me feeling so very helpless too.

I pray God will give you strength to get through this and give you wisdom and guidance. Also for a healing touch upon your son so that these symptoms dont manifest with such severity.

 

dont forget the value of calminatives like Bach's Rescue Remedy and Epsom Salts tubs

 

hope things quickly improve

 

Cheri

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Chemar, Thank you! As expected he feels guilty and held on to me for over an hour saying how sorry he was. I just keep telling him it is ok. He acts very tired and on edge like he hasn't slept in a few days. I stopped giving him the Child Calm since he is so drained. Should I keep giving it to him until this passes? I'm so glad I found this sight, I just needed to vent to others that would understand. :)

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Trubiano,

 

My heart goes out to you. I will pray for you & your son that this will pass quickly. Please do not start worrying about what the future may bring, because i have been there and it only brings on more fear & frustration. Your son's symptoms only started in March of this year and you have already done alot to get help for your son.

 

My son's tic is approaching almost 2 years and what i have learned is that the body is an amazing thing. If you give it the proper care it will heal itself. It is a journey but you will get there. We have been thru some bumps along the way, and i have to tell you, my son is so much better than the beginning.

 

God bless and take care!

 

Pat

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Your whole family is in my thoughts. I hope that things improve soon. It is so hard for us....and for our kids. Seems so unfair. There seem to be so many new PANDAS moms - so I am not sure what your treatment plan is with your son. Don't spend energy worrying about what the future will bring - (I know it is hard, and I am guilty of it too) My son is now 9 - PANDAS was diagnosed at 6. Things are soooo much better. That seems to be the general outcome for these kids. Things were very dark that first year - but it is amazing how far we have come, and I am sure you will be fortunate enough to also look back one day and be so thankful for how much better your son is doing and all that you have learned from the journey. Sending good vibes your way.

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Trubiano,

I was trying to remember if your son is on long term antibiotics? If so he may be getting a PANDAS episode from exposure to strep or a virus and he may not get the actual strep if he is on antibiotics just the symptoms. Maybe there is a carrier in the house so you should all be tested for strep and put on an antibiotic if testing positive. I know what you are going through. Everytime they seem to make progress they get set backs and it is a guessing game as to the cause because alot of times they don't actually get sick just exposed. I really hope your son is feeling better tonight. My son had a rough day today too. Just when I thought the stronger antibiotics were helping. He starting cracking more again against his face and getting angry at people and short tempered. It is very upsetting. My daughter finished her antibiotics so I will need to have her rechecked for strep. Then you start guessing was is something he ate, what did he eat, did he get enough rest, was he under unusual stress, was he around anyone who was sick? Tuck him in and give him a hug and pray tomorrow will be a better day. You are so sweet and patient and it was such a good idea to vent here. Keep us posted. It helps us to relate because we are going through this with you.

Blessings,

Michele

 

Trubiano- My heart goes out to you at this difficult time. Your little guy is so lucky to have YOU as a mom. My thoughts are with you and your family....
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He is on PCN 250mg twice a day. After about an hour of apologizing he was back to the sweet little boy he normal is. Michele was your son addicted to carbs before you started him on the wheat free diet? My son could eat cheerios and bread all day if I let him. We stopped sugar and white refined breads, but I wonder if I should pull all breads and cereals from his diet. Is it the OCD or is it really a food craving? Thank you to all who responded yesterday. This morning was a little ruff getting him to take a quick shower(drought in GA), but after the rush he was better.

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Our boys do sound alike. How old is your son again? Both also have an impulse control problems. Andrew is quick to get mad and fast to make up too. He slams the door says he hates us then comes back in five minutes for a hug. Andrew also loved cereal before and sweets. I have him on a GF /CF diet now. Sometimes he has an occasional icecream though. He drinks soy milk. Loves chocolate too. There are GF cereals out there like choc puffs. He doesn't eat it like he did before though. He has been having GF preservative free lunch meat Thumans or Boarshead for lunch eather rolled up with mayonaise or on a GF mini pizza crust. I found a great bakery that is only GF. We get things weekly. Her cutouts are wonderful and pizza crusts and brownies, and toasting muffins. Here is the website www.kathyscreationsbakery.com . Although not sugar free I feel he is not being deprived while the others eat cookies. I get them with white icing. Kathy is a celiac who quit her teaching job to bake GF. Glutino makes good things too like wafer cookies and pretzals and pizzas. He likes gf nuggets and corn dogs from Wellshire KIDS. Midel makes Arrowroot cookies that are good too.How is your son doing in school? My son won't get out of the shower either. He takes the longest showers! Wouldn't it be a hoot to get them together! On pen v your guy should not get strep. Remeber he can get the symptoms though if he is round it. When he gets them he may need a stepped up antibiotic. My baby is crying alot today so I am taking her in to get the ears checked. I think I will take my eight year old along to get her throat reswabbed since she finished her antibiotic earlier this week. I have a feeling this will be a long winter. Where do you live? Here in Ohio sickness starts in Oct. and runs through May. We have had a very mild fall though. Alot of coughs and pnemonia in the schools. Talk to you soon.

 

Michele

 

He is on PCN 250mg twice a day. After about an hour of apologizing he was back to the sweet little boy he normal is. Michele was your son addicted to carbs before you started him on the wheat free diet? My son could eat cheerios and bread all day if I let him. We stopped sugar and white refined breads, but I wonder if I should pull all breads and cereals from his diet. Is it the OCD or is it really a food craving? Thank you to all who responded yesterday. This morning was a little ruff getting him to take a quick shower(drought in GA), but after the rush he was better.
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Everyone was strep negative. Thank you for GF ideas and website. I asked today about getting some blood work done, but my doctor was reluctant. She said they can test for allergies, but sometimes things come out abnormal when they aren't really so she thinks we would do better eliminating foods one at a time. I have started watching labels and trying to get as much GF as I can. I found GF Omega 3 tonight! Who would of thought it was in there?!? Thank you again for all the help! Oh, we are in Ga and my son is 6.

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Both of mine were strep negative too. I guess then all we can do is look back at the day and write what they ate and what they did in a diary. Start a log when they have a bad day and replay that day or the day before. I am not sure how fast the foods react in their bodies? I think Halloween will be difficult because of all the artificial colors in the candies. As far as the blood work for allergies we were negative to all and it was explained by the Dr.'s to me it is an intollerance that develops over time to repeat exposure to something and your body becomes unable to tolerate it and develops antibodies when exposed to it. This is the case even if you test negative to small amounts of the item in the bloodwork. In the case of the PANDAS kids the antibodies then heightein the immune system which sends a message to the brain of a foreign invader and begins an attack on the brain. Then the vicious cycle of the PANDAS symptoms and behaviors come on. What was the brand of GF Omega 3? Try the elimination diet. You may be pleasantly surprised when you see some changes. Try to find foods he likes to give in place of the ones you take away.

 

Michele

 

Everyone was strep negative. Thank you for GF ideas and website. I asked today about getting some blood work done, but my doctor was reluctant. She said they can test for allergies, but sometimes things come out abnormal when they aren't really so she thinks we would do better eliminating foods one at a time. I have started watching labels and trying to get as much GF as I can. I found GF Omega 3 tonight! Who would of thought it was in there?!? Thank you again for all the help! Oh, we are in Ga and my son is 6.
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Coromega is the brand i use...i got it at the grocery store near the pharmacist---it's the omega 3 you need...you can also go to coromega.com

Hang in there, my daughter is like your son. she can be so wonderful and loving and then will rage. My daughter was on prozac which helped a great deal but we recently took her off and are doing only supplements. i don't want to use the prozac unless i really have to, i will bring it up at my next dr's appt.

 

You're a great mom, try to be patient...easy for me to say...it's so difficult sometimes and the swings are incredible. none of us are perfect so try to go easy on yourself---and try to get the breaks you need and take care of yourself. I find that if i run or exercise it's my way of "checking out" and feel better able to deal with everything.

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