2weeks post ivig and strep throat

[Johnsmom]

We took ds to urgent care last night. We r two weeks post ivig so we have had numerous behaviors on top of this. It began Friday night with ds walking around thinking he was going to throw up. Saturday more of the same. Crazy leg movements, slightly pale and not wanting to do anything. He said his throat felt funny. He began drinking lots of fluids. A lot!!!! We checked it and it was red so we took him in. Rapid is negative. He's only tested positive once on a throat swab.

Dr k left us with 250 augmentin daily after ivig. Don't ask me why. He responded to my email and said to bump him to 500 a day.

I am freaking out here. R we screwed now that we have been exposed. Even though rapid is negative, I think he has it. Now does his body start making more of the crappy antibodies. Ugh I am coming out of my skin!! Help!!!!

 

 

DS is 78 lbs. Woke this morning in a good mood. Says throat feels funny but doesn't hurt. Wont let go of the puke bucket.

Edited July 5, 2010 by Johnsmom

[laurenjohnsonsmom]

I'm so sorry this is happening to you. Take I to the lab and check his aso/antiDnase tigers for strep. if Dr. K did his I if he should be able to order the labs. Have you tried giving home some ibuprohen? Lauren had strep 3-1/2 weeks after both ivig #1 and Ivig #2. she breezed through the first strep with no symptoms but strep after ivig #2 came with an increase in her eye blinking tics and new tics (throat clearing/coughing) plus her anxiety damped up and we actually heard her "snneze tic" Luke 5 times (let me tell you I had dr. B on the phone so fast your head would have spinned)!

Both times she was exposed to these strep bacteria we changed her from her normal azirh 500mg/once a day prof dose to 875 augmentin for two weeks. It seemed to do the trick as when the cold/strep went away the pandas symptoms subsided as well.

 

Dr. B said that the ivig will not prevent them from"slipping a foot off the wagon" if they become exposed but should help keep them from completely "falling off the wagon".

I know every child is different but I hope this helps.

 

Lynn Johnson

www.pandasresourcenetwork.org

Edited July 5, 2010 by laurenjohnsonsmom

[thereishope]

Did they do a culture on it? Also, I know it's not fun, but get all family members tested again. I agree with the Ibuprofen. If not giving it, start. Good luck!

[Mary M]

Johnsmom,

 

I am so sorry. I wish there were answers to your questions..there seems to be very little conclusive information. Please know you are not alone in this.

[kim]

Johnsmom,

 

Was any blood work done?

 

I'm wondering if your sons blood sugar levels are ok. I sure hope I'm not adding to your anxiety here, but I personally know of 2 children who have developed diabetes with strep infections. Did you mention his increased fluid intake? Has that subsided?

 

Sure hope things are improving

[Megs_Mom]

Does he have a physical symptom that makes him think he may throw up? Our daughter got severe stomach issues (but no pain that she could express) with PANDAS - she was always afraid that she would throw up. We since learned that kids have a hard time describing acid reflux or nausea, and often just say they are going to throw up. With a PANDAS child, this is quickly incorporated into their OCD. We use prevacid, but you might want to ask your doctor about a dissolvable over the counter, such as Pepcid. If this stopped his feeling of barfing, then then you'll know that a physical issue is causing the feeling.

 

Hope it is not strep, sorry not to have more suggestions. Hope he is ok.

[Johnsmom]

I really just think it's an OCD thing. I think anxiety and nerves are wearing on him.

Thank you for your response.

 

 

Does he have a physical symptom that makes him think he may throw up? Our daughter got severe stomach issues (but no pain that she could express) with PANDAS - she was always afraid that she would throw up. We since learned that kids have a hard time describing acid reflux or nausea, and often just say they are going to throw up. With a PANDAS child, this is quickly incorporated into their OCD. We use prevacid, but you might want to ask your doctor about a dissolvable over the counter, such as Pepcid. If this stopped his feeling of barfing, then then you'll know that a physical issue is causing the feeling.

 

Hope it is not strep, sorry not to have more suggestions. Hope he is ok.

[Johnsmom]

Hi Kim-

 

WOW the PAC at urgent care did a blood sugar test and I told her I didnt think it was necessary but she did it anyway and he was fine. I think he was panicking as his throat felt "funny" and then when we took him to urgent care his anxiety increased and he kept asking for more water. Today he is back to normal. I am sure glad we had that test done.

thanks for your post-

 

johnsmom

 

Johnsmom,

 

Was any blood work done?

 

I'm wondering if your sons blood sugar levels are ok. I sure hope I'm not adding to your anxiety here, but I personally know of 2 children who have developed diabetes with strep infections. Did you mention his increased fluid intake? Has that subsided?

 

Sure hope things are improving

[Johnsmom]

Thanks for your post Lynn-

 

I dont think Dr K would agree to a titer test anyway. It wouldnt tell us much so close to IVIG. Anyway DS has always had elevated aso's. Your last paragraph gives me a little less anxiety though.

 

thank you again

johnsmom

 

 

I'm so sorry this is happening to you. Take I to the lab and check his aso/antiDnase tigers for strep. if Dr. K did his I if he should be able to order the labs. Have you tried giving home some ibuprohen? Lauren had strep 3-1/2 weeks after both ivig #1 and Ivig #2. she breezed through the first strep with no symptoms but strep after ivig #2 came with an increase in her eye blinking tics and new tics (throat clearing/coughing) plus her anxiety damped up and we actually heard her "snneze tic" Luke 5 times (let me tell you I had dr. B on the phone so fast your head would have spinned)!

Both times she was exposed to these strep bacteria we changed her from her normal azirh 500mg/once a day prof dose to 875 augmentin for two weeks. It seemed to do the trick as when the cold/strep went away the pandas symptoms subsided as well.

 

Dr. B said that the ivig will not prevent them from"slipping a foot off the wagon" if they become exposed but should help keep them from completely "falling off the wagon".

I know every child is different but I hope this helps.

 

Lynn Johnson

www.pandasresourcenetwork.org

[laurenjohnsonsmom]

Hi Johnsmom,

 

Duh! Forgot about the fact that your were so close post ivig.

 

My DD10 (just two years younger than Lauren) is used as the guinea pig so to speak (also she's an asymptomatic carrier)-Uuuh! So usually she'll be positive when laurens having issues (canary effect) or she'll be symptomatic sick just before Lauren starts "chirpping". Do you have any siblings that may be doing the same?

 

When we suspect Lauren to be ill (strep or other) post ivig we always switch her from the 500mg/day azith to augmenting for 14 days and it has worked both times even when the last time (3wks post ivig #2) she had new tics manifest.

 

Something to consider even though every child is different.

 

Lynn

www.pandasresourcenetwork.org

"educate, communicate, cure"

 

 

Thanks for your post Lynn-

 

I dont think Dr K would agree to a titer test anyway. It wouldnt tell us much so close to IVIG. Anyway DS has always had elevated aso's. Your last paragraph gives me a little less anxiety though.

 

thank you again

johnsmom

 

 

I'm so sorry this is happening to you. Take I to the lab and check his aso/antiDnase tigers for strep. if Dr. K did his I if he should be able to order the labs. Have you tried giving home some ibuprohen? Lauren had strep 3-1/2 weeks after both ivig #1 and Ivig #2. she breezed through the first strep with no symptoms but strep after ivig #2 came with an increase in her eye blinking tics and new tics (throat clearing/coughing) plus her anxiety damped up and we actually heard her "snneze tic" Luke 5 times (let me tell you I had dr. B on the phone so fast your head would have spinned)!

Both times she was exposed to these strep bacteria we changed her from her normal azirh 500mg/once a day prof dose to 875 augmentin for two weeks. It seemed to do the trick as when the cold/strep went away the pandas symptoms subsided as well.

 

Dr. B said that the ivig will not prevent them from"slipping a foot off the wagon" if they become exposed but should help keep them from completely "falling off the wagon".

I know every child is different but I hope this helps.

 

Lynn Johnson

www.pandasresourcenetwork.org

[laurenjohnsonsmom]

Edit..(double post)

Edited July 5, 2010 by laurenjohnsonsmom

[Johnsmom]

yea I thought maybe you missed that.

My son has always had elevated ASO's. Never DNASE. However my husband has elevated DNASE the past two times we tested. He had a stomach bug and had a physical scheduled. This was several months ago. I knew he was going to have bloodwork done so I asked him to get ASO's and DNASE. DNASE was elevated with no "typical' strep symptoms. Prior to IVIG I asked him to be tested again and they went up. My guess it was that stomach bug was strep???

 

I only had elevated Myco p's but had an awful upper resp infection 6 weeks prior. John does not have the typical raging that I hear about with elevated myco p's

 

 

Do we need to send hubby again? I never did understand all of this and should have asked these questions when we were in for the 2 day ivig!! UGH!! I know the whole family next door had strep last week but they have not been at our house except for the trampoline in our yard when John wasnt on it and when they left, I BLEACHED IT!

 

thanks again

Ann

 

Hi Johnsmom,

 

Duh! Forgot about the fact that your were so close post ivig.

 

My DD10 (just two years younger than Lauren) is used as the guinea pig so to speak (also she's an asymptomatic carrier)-Uuuh! So usually she'll be positive when laurens having issues (canary effect) or she'll be symptomatic sick just before Lauren starts "chirpping". Do you have any siblings that may be doing the same?

 

When we suspect Lauren to be ill (strep or other) post ivig we always switch her from the 500mg/day azith to augmenting for 14 days and it has worked both times even when the last time (3wks post ivig #2) she had new tics manifest.

 

Something to consider even though every child is different.

 

Lynn

www.pandasresourcenetwork.org

"educate, communicate, cure"

 

 

Thanks for your post Lynn-

 

I dont think Dr K would agree to a titer test anyway. It wouldnt tell us much so close to IVIG. Anyway DS has always had elevated aso's. Your last paragraph gives me a little less anxiety though.

 

thank you again

johnsmom

 

 

I'm so sorry this is happening to you. Take I to the lab and check his aso/antiDnase tigers for strep. if Dr. K did his I if he should be able to order the labs. Have you tried giving home some ibuprohen? Lauren had strep 3-1/2 weeks after both ivig #1 and Ivig #2. she breezed through the first strep with no symptoms but strep after ivig #2 came with an increase in her eye blinking tics and new tics (throat clearing/coughing) plus her anxiety damped up and we actually heard her "snneze tic" Luke 5 times (let me tell you I had dr. B on the phone so fast your head would have spinned)!

Both times she was exposed to these strep bacteria we changed her from her normal azirh 500mg/once a day prof dose to 875 augmentin for two weeks. It seemed to do the trick as when the cold/strep went away the pandas symptoms subsided as well.

 

Dr. B said that the ivig will not prevent them from"slipping a foot off the wagon" if they become exposed but should help keep them from completely "falling off the wagon".

I know every child is different but I hope this helps.

 

Lynn Johnson

www.pandasresourcenetwork.org