Someone tell me it gets better

[momcap]

DS(7)-probably PANDAS-screamed all evening because his throat hurts. The screaming made it hurt more which made him even more angry, so he screamed some more. I took him to the E.R. but they said his throat looks fine. Nevermind that he has a fever. Nevermind that he had high titers (512) in August and positive throat culture in September (his throat looked fine then too). At least they did a culture, but it took 4 people to hold him down and the threat of doing a swab through his nose before he gave up and opened his mouth. What a night. And now we wait several days for the culture...The strep seems to be moving from his sinuses to his throat and back again. Everytime he gets an antibiotic it just moves to a new place. 5 antibiotics in 2 months and he's still spiking fevers. Yesterday he was spinning so I was pretty sure we were dealing with strep again/still. But who knows? DS(5) spent the evening sobbing because his arm hurts. He didn't do anything to it, it just hurts. DS(4) complained all evening about his knee hurting. What on earth is wrong with my children???! I'm saving up to do the lyme tests on all of us. By the time DH came home I was a basketcase listening to 1 kid screaming, 1 kid sobbing, and 1 kid complaining. DS(7) is aggressive, angry, irritable, defiant and his sensory processing disorder is in overdrive. He went to school in snow this morning wearing shorts. Strangly his OCD is absent. And he's never had motor tics (vocal tics, yes). Is this really PANDAS? I wish the cunninghams that we sent a month ago would come back faster! DS(5) is a strep carrier. I have asked 4 different doctors to treat him. No one will even consider it. I get that they don't treat carriers in normal cases, but if they took one look at our family history and current strep issues, what doctor would deny that this problem needs to addressed? Do they not care, are they scared to get in trouble? Why on earth won't they do something? I've asked every doctor I have access to. I've even started begging E.R. docs. I'm out of ideas to get help for DS(5). I'm going to buy some OLE tomorrow. But will that be strong enough to tackle carrier status?

 

For those who pray, please remember us on Monday as I have to try to convince DS(7)'s pedi to order 10 blood tests suggested by Dr. T. I don't have a good relationship with this pedi after being so pushy about PANDAS, so it might be a long shot. I'm really worried. I know my stress level is not helping our situation. One day at a time...

[Mary M]

It will get better with the help of PANDAS docs and the support of this forum. Yes, this is hard, very hard. Prayers are coming your way...you're on the right track.

With hope,

Mary

from Michigan

[tired mom]

I will keep you in my prayers as I know the struggle all to well. If it helps you feel better about your son wearing shorts my sisters dd will only wear her crocs to school with no socks. The effort it takes to just get her dressed is unbelievable. I feel your stress and hope your ped. has a sympathetic ear. Been there and know the feeling that you might as well have spoken to the wall. Good Luck and God Bless!!

[Stephanie2]

OMG, I only have 2 pandas kids and when they both exacerbate at the same time I completely wig out! I am so sorry!

 

You asked if OLE would break the carrier status. I have no idea but it MAY reduce the level of strep enough to help out the situation in the meantime...don't waste your time with substandard OLE, get the good stuff:

 

http://www.ourkidsasd.com/products/?s=olive+leaf

 

I have been told that you need to use rifampin along with another antibiotic to break the carrier state.

[thereishope]

I'm sorry! The hardest thing to do sometimes is to realize it might get better, but that's the only things that can help you keep your sanity. PANDAS can just hault life and ruin it for the time being. Believe it WILL get better and time will heal the family. The kids will not forvever blame their sibling for changing things or for the hard times. Keep strong. Keep fighting.

[Fixit]

DS(7)-probably PANDAS-screamed all evening because his throat hurts. The screaming made it hurt more which made him even more angry, so he screamed some more. I took him to the E.R. but they said his throat looks fine. Nevermind that he has a fever. Nevermind that he had high titers (512) in August and positive throat culture in September (his throat looked fine then too). At least they did a culture, but it took 4 people to hold him down and the threat of doing a swab through his nose before he gave up and opened his mouth. What a night. And now we wait several days for the culture...The strep seems to be moving from his sinuses to his throat and back again. Everytime he gets an antibiotic it just moves to a new place. 5 antibiotics in 2 months and he's still spiking fevers. Yesterday he was spinning so I was pretty sure we were dealing with strep again/still. But who knows? DS(5) spent the evening sobbing because his arm hurts. He didn't do anything to it, it just hurts. DS(4) complained all evening about his knee hurting. What on earth is wrong with my children???! I'm saving up to do the lyme tests on all of us. By the time DH came home I was a basketcase listening to 1 kid screaming, 1 kid sobbing, and 1 kid complaining. DS(7) is aggressive, angry, irritable, defiant and his sensory processing disorder is in overdrive. He went to school in snow this morning wearing shorts. Strangly his OCD is absent. And he's never had motor tics (vocal tics, yes). Is this really PANDAS? I wish the cunninghams that we sent a month ag

o would come back faster! DS(5) is a strep carrier. I have asked 4 different doctors to treat him. No one will even consider it. I get that they don't treat carriers in normal cases, but if they took one look at our family history and current strep issues, what doctor would deny that this problem needs to addressed? Do they not care, are they scared to get in trouble? Why on earth won't they do something? I've asked every doctor I have access to. I've even started begging E.R. docs. I'm out of ideas to get help for DS(5). I'm going to buy some OLE tomorrow. But will that be strong enough to tackle carrier status?

 

For those who pray, please remember us on Monday as I have to try to convince DS(7)'s pedi to order 10 blood tests suggested by Dr. T. I don't have a good relationship with this pedi after being so pushy about PANDAS, so it might be a long shot. I'm really worried. I know my stress level is not helping our situation. One day at a time...

 

Can i also suggest getting a good pan/pit DAN...they are much more accessible and i sometimes I call weekly-bi-weekly..and at the end feel like it was also a mini conseling session in affirmation of thoughts and protocal...and keeps me going

We use creations own in fl and scott smith...he moved to nj...and this is in conjunction with the main panda docs(L and B currently.. K and T in past...though no Doc ever goes off my books, as you never know when you feel their guidance may come back into play) ...i feel like i need the bi-weekly contact and discussion on next step....and the use the main panda docs for affirmation of any new major direction change.....everyone is kept abreast of changes made/seen...

 

prayers sent fo all of you

[kimballot]

Momcap - It DOES get better and I know you are really trying - so I am sure it will get better. I hope you find a PANDAS doc to work with so you can figure out what the infection is and get the right medication. That really made all the difference for us. In the meantime - don't forget to to try ibuprofen for short-term help. Some other things I've read others recommend on this forum are:

 

1. Peanut Butter - to calm rages

2. Valerian root - for rages

3. 5htp at night - to promote sleep and promote calm the next day

4. Melatonin at night - for sleep

5. Quercetin - to reduce inflammation and to help allergies

 

 

That's all I can think of now. Perhaps others can add more. We need to have a pinned post on "things to think about trying when you are in crisis"!!

[peglem]

Oh, you so have my prayers, honey! I have no words of wisdom.

[momcap]

You guys are wonderful!!! Thank you for reading my whining post and helping me feel better. Today is going much better than last night. DS(5) and DS(4) are back to normal and out for the afternoon with Daddy. DS(7) is not doing well, but it is so much easier to manage when we're one-on-one. Kimballot - thanks for the suggestions! I agree that we need a thread on crisis management. Motrin is my lifeline right now. Well, that and this forum!

[JAG10]

Momcap- I know Dr. T can scan certain things...can a doctor scan a script and send lab orders as an attachment? I don't know if that is allowed. Why don't you ask him to snail-mail you lab orders? Or ask him to write an email requesting lab orders be written by the ped, you print it out and take it with you and if the doc has any issues, tell him to call Dr. Trifiletti.

 

I hate the inappropriate clothing for the weather one; I've been peeling off gloves and scarves all week as it has been in the mid 60's here.

[thereishope]

I read the food list that kimballot listed and that made me remember when my son was in his exacerbation with out of control rages, when he started to get better he went on a big carb diet. He ate so many bagels and bread at that time!Then I read that..."Complex carbohydrates increase the release of serotonin, which has an entirely different purpose. Serotonin alleviates depression, calms your nerves and induces sleep. A snack of complex carbohydrates in the evening will enable you to get a more restful sleep." ...So his body knew what he needed.

Edited October 23, 2010 by Vickie

[momcap]

Momcap- I know Dr. T can scan certain things...can a doctor scan a script and send lab orders as an attachment? I don't know if that is allowed. Why don't you ask him to snail-mail you lab orders? Or ask him to write an email requesting lab orders be written by the ped, you print it out and take it with you and if the doc has any issues, tell him to call Dr. Trifiletti.

 

I do have a list from Dr. T on his official script with all of his contact info!

[momcap]

I read the food list that kimballot listed and that made me remember when my son was in his exacerbation with out of control rages, when he started to get better he went on a big carb diet. He ate so many bagels and bread at that time!Then I read that..."Complex carbohydrates increase the release of serotonin, which has an entirely different purpose. Serotonin alleviates depression, calms your nerves and induces sleep. A snack of complex carbohydrates in the evening will enable you to get a more restful sleep." ...So his body knew what he needed.

 

Oh ya, my ds does the carb cravings too and I can't believe what he packs down. Right now his throat hurts so badly that he isn't able to eat. I wonder if he'll jump into carbs when he feels better. Do you worry about the carbs (gluten) being inflammatory? I've been wondering about going gluten-free but trying to figure out how on earth I can do it.

[JAG10]

Momcap- I know Dr. T can scan certain things...can a doctor scan a script and send lab orders as an attachment? I don't know if that is allowed. Why don't you ask him to snail-mail you lab orders? Or ask him to write an email requesting lab orders be written by the ped, you print it out and take it with you and if the doc has any issues, tell him to call Dr. Trifiletti.

 

I do have a list from Dr. T on his official script with all of his contact info!

 

He gave me the same thing and I took it right to the lab....bypass the pesky ped.!!!!!

[thereishope]

At the time, I didn't know carbs caused inflammation so I didn't hold him back. It was also the exacerbation where he didn't eat so I was just happy to see food going in his mouth. At the time, it didn't seem to cause anything negative in him and the carb cravings started very early in recovery. Like the day he stopped the spiral down, the carb crave started. Over time, I've seen that my son's body seems to "guide" him in what he should eat/avoid. It wasn't until PANDAS hit, that he now rarely drinks milk. He doesn't want it, even though he likes it. So, that's something I don't push now. My gut just tells me his body knows what he needs (for the most part, he IS a child)to keep in balance.

 

I very briefly tried gluten free during one his exacerbations, but don't know if I tried it long enough that I even would have seen any results if it would have helped. I don't think my son has any gluten sensitivities or allergies or celiac sicne he's okay now and even though we've altered our diet to being healthier, avoiding gluten is not part of it.

 

I read the food list that kimballot listed and that made me remember when my son was in his exacerbation with out of control rages, when he started to get better he went on a big carb diet. He ate so many bagels and bread at that time!Then I read that..."Complex carbohydrates increase the release of serotonin, which has an entirely different purpose. Serotonin alleviates depression, calms your nerves and induces sleep. A snack of complex carbohydrates in the evening will enable you to get a more restful sleep." ...So his body knew what he needed.

 

Oh ya, my ds does the carb cravings too and I can't believe what he packs down. Right now his throat hurts so badly that he isn't able to eat. I wonder if he'll jump into carbs when he feels better. Do you worry about the carbs (gluten) being inflammatory? I've been wondering about going gluten-free but trying to figure out how on earth I can do it.

Edited October 24, 2010 by Vickie