Immunological Blood Work Results

[Debbie1]

The doctor called yesterday with our lab results. I still need to pick up a copy of the results at the office so I do not have the exact numbers in front of me, but here are the results from our phone conversation:

 

We ran CBC, pneumoccocal titers, IGG, IGG A, IGG M and IGG subclasses, Diptheria and tetanus titers, HIB and complement. Everything was normal with the exception of 4 out of 12 pneumoccocal titers which were low. (He said the 8 main ones were normal). However, she never received the pneumoccocal vaccine, so unless she contracted the virus, he said she would not have the antibodies. So he felt even the low numbers were normal in her case.

 

I am not sure where this leaves us in terms of IVIG and insurance coverage.

 

The doctor also repeated her strep titers due to her recent (and ongoing) exacerbation following exposure to strep. ASO has remained pretty flat at 371. AntiDNAse is back up to 960. It was 680 at the beginning of August and 340 at the end of June. The doctor started her on a 10 day course of Duricef. If it doesn't work, our current neurologist will put her on a course of prednisone.

 

We made the decision to go see Dr. Latimer. I contacted her office last week and the wait is not too long. I have to call back on Monday to go ahead and schedule. I really hope she can help us. Everything we have done so far seems to temporarily fix things, but it keeps coming back...

 

It has been very inspiring to read so many success stories here lately. It's what keeps me going. Thanks.

[bronxmom2]

Hi, we're in a pretty similar position... we made one appointment with Dr. Latimer, canceled it amid uncertainty over whether it would help or be worth the $$...then made another when we realized this thing was just going to keep coming back and the antibiotics are just a temporary and imperfect fix whose efficacy slowly erodes over time.

 

As you've already realized, it seems that pneumoccocal titers are useful primarily to get insurance to cover IVIG. (Also to help understand underlying problems with our kids' immune systems.) How crazy that we find ourselves "hoping" for evidence of immune deficiency in our children! I've been kicking myself over not getting those titers before seeing Dr. Latimer as I know she will TRY to get IVIG/PEX covered (the nice lady in her office says it's getting easier)... so I'm hoping she will have some trick up her sleeve for us even though your pneumo titers are "normal" and I don't have them.

 

I have five sets of ASO titers from the past year, which have fluctuated between 400-600, plus the Cunningham blood test results (do you have those?), plus one frantic mother.

 

You are one step ahead of me-- at least you have a neurologist willing to try prednisone, I have not been able to find anyone locally willing to do this-- but I have not heard of anyone regretting an appointment with Dr. Latimer.

 

Good luck.

[sf_mom]

I'd say you definitely made the right decision by making an appointment to see Dr. Latimer!

 

Does your daughter have swollen tonsils or dark circles under her eyes? My son had both and I couldn't help but think the strep was so resilient it was just hanging out in his tonsils and adenoids continuing to make him sick. AND, his strep titers were much lower than your daughters.

[KeithandElizabeth]

SF Mom:

 

Did your son ever have the tonsillectomy? This was such a hard decision for us...... Dr. K said that it was irrelevant to our PANDA situation. We ended up NOT having the tonsillectomy, but our son's tonsils are huge and red... We get such conflicting advice from all of our doctors/nutritionists, etc.... What finally swayed us against getting the tonsillectomy is that one doctor told us that we may see a short term solution, but strep can go anywhere in the body and a tonsillectomy would not stop our long term problem... At least if it is in the tonsils, you are better able to detect strep....

 

Any thoughts? I am hoping the year of Augmentin will decrease his inflammation in his tonsils.

 

elizabeth

[KeithandElizabeth]

Okay, I am replying to myself... I found this website which describes ways to rid the tonsils of strep naturally and it also mentions a partial tonsillectomy if the other measures do not work....Interesting! A partial tonsillectomy decreases the size of the tonsils and uses a laser, I believe, to rid the tonsils of the scars. The good news is that the tonsils remain intact and the first line of defense against strep since they are a strong component of your immune system...

 

http://www.ehow.com/how_5235550_treat-cryp...onsillitis.html

 

elizabeth

[Debbie1]

Her tonsils have been ok since finishing steroids and starting on prophylaxis in December. From December to June she was entirely symptom free. We thought she was over this. Our problem since June has been that when she is exposed to strep, her titers rise and her tics severely flare. She has not tested positive to a throat culture since being on prophylaxis. This has really confused our doctors. They do not understand how should could be reacting to strep without testing positive on throat cultures recently (although she has had several episodes of positive cultures before prophyaxis).

 

Does anyone else also see this with their child?

 

My daughter has begun to show some improvement on the Duricef which she started Thursday night. Still tics, but less severe. We are switching to Duricef for prophylaxis after she finishes the full 10 day course. I'm a little afraid she might develop resistance to that one as well. That is what our doctor thinks happened with the amox.

 

Just made an appointment with Dr. Latimer for the end of next week.

[sf_mom]

I recently read somewhere and hopefully I'll make sense.... I'm paraphrasing.

 

The strep remains resilient in the adenoids and tonsils and when they get a cold or other virus it releases into their intestines through the intestines 'leaky gut' and into their system. Important to repair the 'leaky gut' to improve overall health. Therefore, probiotics that can attack the bad bacteria and less toxic diets (perhaps gluten free/casein free) & environment so the good bacteria can focus on bad bacteria and their systems are not in overdrive.

 

My sons tonsils/dark circles have improved tremendously since antibiotics and steroids too but I'm not convinced the strep is completely out of his system. My hope is the IVIG will take care of any remaining infection, the antibiotics will take care of ongoing exposure and we will work on the gut for overall immunity improvement and attempting to get him out of overdrive.

 

Glad you made the appointment and she is responding to the Duricef.

[dcmom]

There is NO question in my mind, that my daughter reacts when around others with strep. This has happened three times. All three times she was on antibiotics. She would have a flare up of pandas symptoms, mostly mood and separation issues- a little of the ocd stuff- I would then find out a day or two into this that a friend or classmate has strep. Within a few days she would be much better. I know another pandas child who has the same issue.

 

That is what makes this so difficult! I might be able to prevent her from contracting strep, but I can't keep her away from other kids (before they even know they have it).

 

My dd did have her tonsils out. My two neurologists and ENT felt this was a good thing to do. I don't know if this was the right thing to do- but can say her tonsils were infected when they got them out- he couldn't totally see that before they came out. I personally felt I wanted to have this done before doing pex. She did have another exacerbation exactly one week after the T&A- so I feel she was exposed during the surgery.

 

These decisions are so hard...

[Debbie1]

dcmom,

 

Your daughter still reacts with PANDAS symptoms when around strep even after you did PEX? Did she ever culture positive or have elevated titers during these exacerbations?

[dcmom]

Hi Debbie-

 

I am sorry: She has NOT had pex yet. We are working on it! But we had the t&a done in advance.

 

I haven't swabbed her during these mini-flare ups since she was on antibiotics (and the culture is tramatic to her ). I really don't think she contracted an active infection from these exposures because they didn't in anyway derail her recoveries (just small blips).

 

Eileen

[ShaesMom]

There is NO question in my mind, that my daughter reacts when around others with strep. This has happened three times. All three times she was on antibiotics. She would have a flare up of pandas symptoms, mostly mood and separation issues- a little of the ocd stuff- I would then find out a day or two into this that a friend or classmate has strep. Within a few days she would be much better. I know another pandas child who has the same issue.

 

 

My dd also reacts when around others who are ill and it doesn't have to be strep either. I had bronchitsis in May after she had started on her prohabx and she had highly elevated Pandas symptoms for three days while I was sick but she herself never became ill. Last week my husband and I both commented that she was "off" - minor flares in anxiety & tantrums-this started on Tuesday evening and continued through the week-she was back to sleeping in our bed again. Her brother came home sick on friday. They were not together all day Saturday until after 5 pm-she was fine all day-played with the neighbor kid, in a great happy mood. She spent a couple of hours around her brother that evening and she was having tantrums again and on the path to a major raging incident that we were able to quicky derail.

 

I am awaiting the results of his throat culture-the doctor suspected strep. ARG!!

[ShaesMom]

Just received confirmation that my older son does indeed have strep. Since I have a sore throat too I guess I'd better go to the doctor myself. Well, that definintely explains her moods last week.

 

Sam