The kids are REALLY immunodeficient!

[sf_mom]

High lymphocytes could be viral and that is what we are trying to rule out with Dr. K..... we are waiting 12 weeks to retest and I am documenting any colds, fever and diarrhea etc. in between. Our DS, younger twin immune system was tested in Nov and Jan. Our DD, twin, was actually tested twice (forgot about one of the series of test) in the beginning of Jan and end of Jan. We've had one high fever with full body rash on Dec. 28th but since then nothing other than responsiveness to our older son being exposed to strep.

 

I'll be interested to hear what your Dr. says about results.

 

 

 

MamatoPandas and SFMom,

 

 

My dd recently had high lymphocytes and she is on high dose azith with no infections that I know of receiving monthly lower dose ivig? What do your docs think of the lymphocytes, does this mean there is an underlying infection? Or can it be tied to autoimmune? SFMom how often have your children had high lymphocytes? I thought this number was suppose to increase and decrease with infection? Any info would be great. Also my dd had low CD3 and high CD52 killer cells any ideas what that is all about and does it tie in with infection. If my dd has been on high dose azith for months, how could she have high lymphocytes? I am thinking that this means the azith is the wrong abx, or could this be viral that causes the higher lymphocytes. I recently just got back my dd's tests results and the doc wants to go over them with me personally. So I have no answers right now.

[momto2pandas]

I haven't yet spoken to the immuno about the lymphocytes but we are well aware from the sinuses full of green stuff that there is an ongoing infection, so the lymphocytes will not be a surprise. I assume it is that but perhaps the immuno will have more ideas about other contributors. I guess that we are lucky in our case that we don't have some kind of mysterious hidden infection but rather one that's in plain sight begging for treatment.

 

My sons get WAY better on zith (like 100% within 4 days or so) but get worse again, without fail, within 2-3 days of going off. I am hoping from this (and from the fact that the doctors always say "green" when they look in their noses) that we are dealing with a zith-responsive bacterial infection, but just not getting all the way there in eradicating it - hence the continued high lymphocytes. My deep-down fear is that it's actually a viral infection that we won't know what to do with, and that the zith is just helping the symptoms because of its antiinflammatory effects... so we're not even attacking the root of the problem. Guess I'll know more once they tell me the titers.

 

MamatoPandas and SFMom,

 

 

My dd recently had high lymphocytes and she is on high dose azith with no infections that I know of receiving monthly lower dose ivig? What do your docs think of the lymphocytes, does this mean there is an underlying infection? Or can it be tied to autoimmune? SFMom how often have your children had high lymphocytes? I thought this number was suppose to increase and decrease with infection? Any info would be great. Also my dd had low CD3 and high CD52 killer cells any ideas what that is all about and does it tie in with infection. If my dd has been on high dose azith for months, how could she have high lymphocytes? I am thinking that this means the azith is the wrong abx, or could this be viral that causes the higher lymphocytes. I recently just got back my dd's tests results and the doc wants to go over them with me personally. So I have no answers right now.

[sf_mom]

Our friends son has similar..... boy who had RF. Stawberry tongue would have happened at time of exposure during extended high fever of 5 days. AND, unfortunately not all symptoms present or some get missed because they don't happen all at once. The younger they are the more severe the symptoms 'typically'. My younger son was 5 1/2 months at the time so he was very SEVERE!!!

 

-Wendy

 

 

 

 

 

Both kids have ongoing problems with cracked/fissured lips and have had occasional mouth ulcers, in addition to the skin lesions around the mouth (looked like pimples). I have not noticed any of the other things. One of them has very red checks and lips, the other doesn't. I wondered about Kawasaki's in the past but they didn't seem to have quite enough symptoms. No strawberry tongue. Now that we have the immuno results, though, I will ask the doc about it.

 

Titers were taken but she didn't read those to me - still have to hear back on that.

 

We were in SF proper in between the Moma and Embarcadero our son attended Hills Plaza Marine Day Preschool and now in Atherton... near Palo Alto. Diana was in Fremont prior to moving to Menlo Park and that is where her child played with a kid who was diagnosed with RF prior to sudden on-set. Mouth lesions can be Kawasaki's.... does he have elevated titers? Kawasaki's is often missed and shares 93 symtpoms with RF.

 

Cracked lips

Erythematous lips/fissuring

Oral lesion/ulcer

Oral Mucosa Erythema

Strawberry tongue

Tonsil exudate

Ulcerative stomatitis

 

http://en.diagnosispro.com/disease_compari...5643-19125.html

 

IVIG 2 m.g./kilogram is the known treatment for Kawasaki's until symptoms resolve.

[momto2pandas]

That is interesting. I do remember my husband and I discussing my ds3's (at the time ds1's) extremely red (yes I would say strawberry) mouth back then, but I figured that if it was Kawasaki's it would have stayed that way. Thanks for the info and I will have to follow it up. It is always disheartening to go from one rare, hard-to-get-treated diagnosis to add on additional ones... but we have to keep going until we have done everything we can do for our children.

 

 

 

Our friends son has similar..... boy who had RF. Stawberry tongue would have happened at time of exposure during extended high fever of 5 days. AND, unfortunately not all symptoms present or some get missed because they don't happen all at once. The younger they are the more severe the symptoms 'typically'. My younger son was 5 1/2 months at the time so he was very SEVERE!!!

 

-Wendy

 

 

 

 

 

Both kids have ongoing problems with cracked/fissured lips and have had occasional mouth ulcers, in addition to the skin lesions around the mouth (looked like pimples). I have not noticed any of the other things. One of them has very red checks and lips, the other doesn't. I wondered about Kawasaki's in the past but they didn't seem to have quite enough symptoms. No strawberry tongue. Now that we have the immuno results, though, I will ask the doc about it.

 

Titers were taken but she didn't read those to me - still have to hear back on that.

 

We were in SF proper in between the Moma and Embarcadero our son attended Hills Plaza Marine Day Preschool and now in Atherton... near Palo Alto. Diana was in Fremont prior to moving to Menlo Park and that is where her child played with a kid who was diagnosed with RF prior to sudden on-set. Mouth lesions can be Kawasaki's.... does he have elevated titers? Kawasaki's is often missed and shares 93 symtpoms with RF.

 

Cracked lips

Erythematous lips/fissuring

Oral lesion/ulcer

Oral Mucosa Erythema

Strawberry tongue

Tonsil exudate

Ulcerative stomatitis

 

http://en.diagnosispro.com/disease_compari...5643-19125.html

 

IVIG 2 m.g./kilogram is the known treatment for Kawasaki's until symptoms resolve.

[sf_mom]

Another very noted symptom would have been what looks like 'pink eye' in both eyes prior to fever..... Honestly, they missed it with my older son and I begged any & all Dr's who entered the hospital room when my younger son was there to look at my older. They 'all' said highly unlikely that both would have Kawasaki's at the same time and my son seemed to recover on his own but we got the first TIC six months later.

 

The good news, two years later our son is getting better. Much better than he has been for a very long time. AND, if it was Kawasaki's the IVIG would absolutely be covered by insurance.... just hard to go back and prove it after the fact. Have you ever had an ECCO done?

 

-Wendy

[momto2pandas]

My younger ds did have the pink eyes associated with that infection, too. Can't remember about my older ds, but definitely the younger. We were given an antibacterial ointment for his eyes. We never had an echo, but he did have a heart murmur in all of this. His pediatrician didn't hear it last time he examined him this past fall, though. It seemed to have gone away.

 

Is Kawasaki's chronic in any way or is it something that would have been of the past but left a residual immune problem/infection? I am just wondering if it would be a current diagnosis or just a guess at what may have happened.

 

Another very noted symptom would have been what looks like 'pink eye' in both eyes prior to fever..... Honestly, they missed it with my older son and I begged any & all Dr's who entered the hospital room when my younger son was there to look at my older. They 'all' said highly unlikely that both would have Kawasaki's at the same time and my son seemed to recover on his own but we got the first TIC six months later.

 

The good news, two years later our son is getting better. Much better than he has been for a very long time. AND, if it was Kawasaki's the IVIG would absolutely be covered by insurance.... just hard to go back and prove it after the fact. Have you ever had an ECCO done?

 

-Wendy

[sf_mom]

Heart murmurs can resolve with antibiotics... Our younger son's aneurysm resolved in six months with only a daily baby aspirin. As for your other question, I don't think they know, there isn't enough long term studies. Kawasaki's enter US via Hawaii in the 1970s. Dr. K was the first individual to diagnose a non-japanese decent child in the mainland US.... I forget the year. Unfortunately, its just a guess at what happened with the residual problems/infection similar to Rheumatic Fever. Maybe looking back at the medical records might help you to determine if it was Kawasaki's. Dr. K is very aware of our issues and has great insight to Kawasaki's.

 

 

My younger ds did have the pink eyes associated with that infection, too. Can't remember about my older ds, but definitely the younger. We were given an antibacterial ointment for his eyes. We never had an echo, but he did have a heart murmur in all of this. His pediatrician didn't hear it last time he examined him this past fall, though. It seemed to have gone away.

 

Is Kawasaki's chronic in any way or is it something that would have been of the past but left a residual immune problem/infection? I am just wondering if it would be a current diagnosis or just a guess at what may have happened.

 

Another very noted symptom would have been what looks like 'pink eye' in both eyes prior to fever..... Honestly, they missed it with my older son and I begged any & all Dr's who entered the hospital room when my younger son was there to look at my older. They 'all' said highly unlikely that both would have Kawasaki's at the same time and my son seemed to recover on his own but we got the first TIC six months later.

 

The good news, two years later our son is getting better. Much better than he has been for a very long time. AND, if it was Kawasaki's the IVIG would absolutely be covered by insurance.... just hard to go back and prove it after the fact. Have you ever had an ECCO done?

 

-Wendy