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Is anyone's other non PANDAS child the carrier


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Hi there,

 

I know there is a very similar thread going on right now, but I didn't want to derail it with this question and story. Just a quick recap. We have 2 children that are 17 months apart and are now 2 1/2 and just turned 4. Our PANDAS daughter appeared to have gotten PANDAS out of nowhere on Jan 1st 2009 after the baby got scarlett fever. Fast forward to now - One PEX and 5 IVIG's and only temporary and day long relief for our family during all this time.

 

Our youngest daughter has had a horrible diaper rash her entire life. When she was 9 months old, I took her in for it and the ped told us to use triple paste ointment which didn't work. Then she gave us Slivadene (?) which seemed to calm it down. Our youngest would get this rash all the time but soon we were dealing with PANDAS and I didn't have time for really dealing with this rash. Well, our youngest had the rash again last week and we were out of the cream. I asked the ped for a refill and a lightbulb went off in her mind that the rash oculd be strep. So we cultured our youngest and it is STREP!!! Our youngest has been cultured many times this past year and has always been negative. But each time she has been cultured, she didn't have a diaper rash. The ped, my husband and I are floored!! The youngest is the carrier! And she gets this rash ALL the time!!!

 

But, or course there is a problem. We tried to give our youngest the abx of choice and she is unable to do it. She keeps throwing it up. She has a horrible gag reflex and is completely unable to palate the clyndamiacin.

 

My question is whether anyone else has the carrier living in their house? Were you auccessfully able to eradicate it? How much does fixing the carrier improve things for the PANDAS child?

 

Thanks!

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That sure is a big piece to the puzzle! I hope you scrubbed your hands after diaper changes.

 

My 2 non-PANDAS kids I are not carrriers, since they clear on amoxicillan, but they both do not get symptoms of strep even when they have it. It's like a possible hidden monster that can be lurking waiting to strike your PANDAS child. It is very stressful.

 

Clindamycin tastes awful. When my daughter was a baby she had a stubborn ear infection and I think that's whta they tried to give her. threw up the first dose. Omnicef ended up clearing it up for her.

 

If the strep is on the skin only, would that still make the child a carrier? Has she been given oral abs for it before?

 

I was just having a disussion with a friend who's a ped and she broke down which abs are most pleasing tasting for a young child. I'll try to pull it up later and post it.

 

Is there a topical ab they are giving for it?

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Wow! So, sorry but hopefully this will improve the overall state of your family. I would also run ASO and Anti-DNase-B Tests on yourself and your husband.

 

AND, perhaps you know our story but our 2 1/2 year old twins are immune deficient with some underlying infection based on elevated Lymphocytes, low WBC, low RBC..... We ran the CaM Kinase for our little boy because he had some worrisome behavior and it was 148. We are now awaiting results on our little girl. It looks like this 'BUG' has hit our house hard.

 

I am also hearing rumors of a similar situation for other families. I would definitely run further labs on your younger daughter.

 

-Wendy

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yes, that liquid clindamycin is majorly NASTY tasting. That was rx'd my younger strep carrier (5 at the time). She cried and cried before each dose (we made it through 2 doses). We ended up switching to liquid Azith. (just 5 days worth) which cleared her carrier state. When she's gotten subsequently reinfected (from school) she's always cleared with the Azith. I don't know if skin strep is harder to clear? So maybe you'd want to ask for 10 days worth?

 

One other thing you might try on the rash (in addition to oral azith) is putting honey on the rash. It's supposed to have all sorts of antibacterial and wound healing effects. I don't know if it would get to messy, but a little (under the diaper) might be worth a try.

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I really would not even try the liquid Clindamycin--it is so horrible! Go back to the pharmacy, and ask for capsules instead. We carefully opened the capsules on a spoon with a thin layer of chocolate pudding, and then we would put a dollop of pudding on top of the antibiotic, so that it was all covered.

 

My dd6 knew we were giving it to her, so we let her have a regular spoon full of pudding, then the medicine filled pudding, and then another spoon full of regular puddding...she was able to tolerate it that way.

 

EAMom has said that they couldn't get their daughter to take the liqud Clindamycin either, and they successfully swithed to azith.

 

I hope this is helpful!

 

~Karen

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A couple of thoughts: our non PANDAS DD has been on prophalactic Azith twice weekly for 6 months. THat is why the ped didn't prescribe Azith for this. We are working on asking a compounding pharmacy to make something for us but they were closed over the weekend.

 

As for the labs for this daughter, now I am a bit scared after reading your post, Wendy. I agree with you that we should test her. But, this DD is the most even tempered, sweetest child in the world. She really has no issues. So, when we figured out that she has had strep for over 2 years, the ped and I were thrilled and assumed this meant she would be immune to PANDAS. But I think what you are telling me is that this is not necc the case. Is that right?

 

Lastly, the cream that the ped prescribed way back when actually was an abx cream which is why this kept clearing up on it's own...

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I know your fears and concerns. BUT, for as difficult as it is to hear, it is also important to know for the overall health of your family.

 

Our daughter doesn't seem to have any symptoms either except the following 'Velcro Syndrome' wants to be held all the time, she mysteriously dropped from the 40% in weight to under 10%, slight delay in speech.... prefers to point/motion for things, she has shared every illness with her twin brother since the incident in 2007 which were frequent flues and colds. In December she had a 3 day fever followed by a full body rash and had inappropriate eye blinking for 3 days after fever started. We culture her at the time and she was negative.

 

Given the circumstances we decided to test her and found the resulting abnormal labs. Her twin brother labs are not that different and even slightly better. We are praying they will treat them both for PID locally.

 

RESULT / RANGE

 

IgG Subclasses

 

IgG 1 270 L 315 -945

 

IgG 2 55 38 – 225

 

IgG 3 15 L 17 – 68

 

IgG 4 7.0 1 – 54

 

IgG Serum 415 L 533 - 1078

 

WBC 4.2 L Above 6.0 Normal

 

MCHC 36.5 H 31 – 36

 

Neutriophil % 16 L 23 – 45

 

Lymphocytes 70 H 35 – 65

 

Basophil % 3 H 0 – 2

 

Neutrophil Count 0.7 L 1.4 – 7.9

 

 

 

 

PNEUMOCOCCAL AB TITER 14 SUBTYPES

 

STREP PNEUMO 12/30/09

TYPE 1 <0.3

TYPE 3 <0.3

TYPE 4 2.1*

TYPE 5 <0.4

TYPE 8 <0.3

TYPE 9 <0.3

TYPE 12 <0.3

TYPE 14 0.8

TYPE 19 2.4*

TYPE 23 3.0*

TYPE 26 6.4*

TYPE 51 <0.3

TYPE 56 1.0

TYPE 68 6.0*

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One other thing you might try on the rash (in addition to oral azith) is putting honey on the rash. It's supposed to have all sorts of antibacterial and wound healing effects. I don't know if it would get to messy, but a little (under the diaper) might be worth a try.

 

 

I can say I've seen honey heal wounds. My former mother-in-law was a diabetic and had had foot surgery. Doctors treated her wound with honey after each cleaning twice a day. The foot healed. No evidence of anything ever happening. I thought back then how 'third world' because this was in Mexico. After reading about what honey could do I was convinced that it was anti-bacterial.

 

For the diaper rash... my daughter (17 yrs old).. my oldest of my two kids... would get an awful rash as a baby. A co-worker recommended that I use Lotrimin and it WORKED! I would only apply it once a day because I wasn't sure how often to apply it. I would cleanse the area carefully with a warm wash cloth and apply the ointment after making sure the area was dry. My co-worker explained that her doctor had said that a diaper rash is caused by fungus and that Lotrimin is an anti-fungal ointment. She tried it and it worked. Maybe this isn't a cure for the diaper rash but maybe a relief until the correct antibiotics can be found to help.

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I think the best diaper cream is that Bordeaux's Butt Paste. I probably misspelled it since I haven't had to use diaper cream in a year. Thank God my youngest potty trianed pretty quick! Anyway, it's not an antibiotic, but that stuff is great.

 

My friend who is a ped said you may be able to clear a carrier state with Augmentin. She said usually docs give Augmentin or Clindamycin.

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Our PANDAS son just a severe regression post his monthly IVIG, and we checked our daughters ASO titers and they were high at 322. Crazy!!! At least it can explain our regression.

 

What a journey we are all on.....

 

Elizabeth

 

 

Carrier State??!! Our family has been a strep FACTORY!!! We had no clue---negative CULTURES to boot. I finally got my GP to listen and run titers on all the negative cultured members. Our son has tanked and is currently hospitalized. IVIG Oct 2/3. Downward spiral started in Dec.

 

Myself 756/1920 2 neg throat cultures

DH 189/1920 neg throat

13 dd neg/177

15 dd 752/5500 lightly positive. dx 12/09 adol. variant PANDAS. high dose Aug. Symptoms, for the most part, have waned.

 

Makes me sick. Can post more later. Gotta run to get to the 1 hour visiting time we have with son!! DAwn

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Dawn, I plan to run titers on the entire family too. I'm fearful our family has the same issue. All three children are looking like PANDAs. We are still waiting for CaM Kinase results on our 2 1/2 year old daughter.

 

Will you be getting another IVIG for your son? We have done three IVIG treatments and with each treatment he improves.

 

 

-Wendy

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Wendy,

 

We have mentioned to Dr. K that we are figuring that a second IVIG will be needed. He never comments. Right now the other 4 of us are on Aug. 875 BID x 28. Cleaned out the Pharmacy--IOU's on each bottle!! HA Dr. K says if it doesn't work in that length of time, it won't.

 

We had to admit our boy yesterday. So dangerous to others & himself. Back to square one now, we feel. Could be a blessing as we we all be on abx by the time he returns home. He is on the same amount. Dr. K said he could have this until conversion. Well, I don't think conversion is going to happen during this round. Diana P said to be patient. The high dose abx is a new arena and we just may see improvement w/o IVIG. I'm not holding my breathe, nor will I wait too long to find out, due to his age.

 

Get tested. My gut has been right soooooo many times during this journey.

 

Dawn

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Guys can you explain "get tested" to me? I mentioned this to our ped and she said that getting our family's ASO (I believe that is the one she said) would only tell us if we had been exposed to strep in the past year. Can you explain this to me? I'm sensing that there might be more to this story.

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