At wits end, need a plan of attack

[nojo]

It is the start of school, and yes, we have strep. We decided to do things differently this year, and we were diagnosed the week before school started for a change.(instead of the first week of school) This is exactly four weeks to the day after starting our second round of antibiotics for the previous round of strep that didn't clear up. My daughter has been off the deep end for over six weeks now. I can objectively see some progress that we are making. 1. We get strep frequently during the school year, but realized after this last bout, we may be reinfecting ourselves with our inhaler chamber. ( I know, seems obvious now, but even after throwing out toothbrushes and sterilizing the house, we didn't make the connection until recently). Hopefully this will help. 2. After reading about the blood work with the IGG and pneumococcal titers, I am confident we meet this profile. Two years ago, when trying to figure out her asthma, we had this blood work done, and I know this came back to fit the profile that so many others have had because the re vaccinated her, and talked about ivig. I am going to get a copy of the blood work.

 

I need to figure out what to do next, I can't keep living like we are, she is crazy, raging and yelling, out of control. She is obsessively sorting things from her pencil box to french fries. When she gets likes this, she shuts down on what she will wear and what she will eat. We are still on antibiotics, and her pediatrician does agree she has PANDAS, so getting him to believe is not a problem. He said he will put her on prophylactic zithromax (he said one dose every fourth day is what he has read). Should I be trying to control getting the strep? So far that hasn't worked too well. Or should I be trying to control her body's response to strep? We are in Richmond, VA, so I could also go to see Dr. Latimer. Is that something worth doing? For those of you who have seen Dr. Latimer - what would Dr. Latimer be able to do for us? Would it help to bring certain blood work/tests to her? There is also an infectious disease person in Richmond. If prophylactic antibiotics is my goal, do I need to go somewhere else? I want to start with the least invasive route, but I want to help my daughter. We cannot keep living like this.

 

In some ways, I think we have been fortunate because her asthma has been so severe, we end up on prednisone many times a winter, and I think that has kept her PANDAS from becoming as crazy as it could be. When I read other stories, I know it can be more severe, and I am so profoundly exhausted.

 

Also, a while back I had posted about our cockapoo possibly having strep, 92 dollars later, she was negative.

 

Any and all advice is welcome. Thanks for understanding

[colleenrn]

Hi. I only have a second for a quick response right now, but can post more later. I would start by aggressively treating this strep infection for at least 2-3 weeks until you are sure it is erradicated. Then I would decide what prophylactic dose to use, but IMO, every 4th day is not enough. What antibiotic is she on now, what dose, and what is her weight?

 

Colleen

[thereishope]

My son was like yours. He had back to back strep infections. He got it again a little less than a month after being off antibiotics for strep. I'll let you know that second back to back strep infection hit him hard. Like your child, getting dressed was a problem, choosing food was a problem.He'd stare in the dresser and in the fridge for over an hour. Yet, I couldn't make the decision for him either. He had rages, threats, agoraphobia, went through a bout of no eating at all. The list goes on and on. That time, it took longer to see improvement when I compared it to the timeline I observed the first time. During the second infection, he went on a steroid about 5 days into taking antibiotics. I believe starting a steroid that early on ultimately saved him. He spiralled down very fast. He was still recovering from the first bout of strep when the second one hit.

 

How old is your daughter? I would still try to control getting strep. I would also drag the whole family in for strep tests (including cultures). Even if you did last time, do it again. You can skip the bird, though. Just make she washed her hand really good if she handles it.

[bronxmom2]

I would skip the local specialist and go straight to one of the two people who are really treating this thing-- Dr. Latimer in Bethesda and Dr. K. in Chicago.

 

It see

[bronxmom2]

oops my baby post while I was typing.

I was going to say it seems like you could catch it early.

[dcmom]

Nojo- I am so sorry that you are going through this. Dr Latimer is great, but it does sound like you have some local docs willing to help. I think you should try to:

 

1. Eradicate the strep (it may have gone intracellular). I would consider one month of a daily treatment dose of zithromax. Only after you have a major improvement, consider slowly backing down to a prophylactic dose (always with the option to up it if you see symptoms).

 

2. Definately asap get the bloodwork done by Dr Cunningham (CamKinase and antineural antibodies). Dr Latimer will want to see this, if you eventually see her.

 

3. Try to get one of your docs to prescribe a steroid burst. I am sure they can consult with Dr Latimer. She does 2 weeks of a full dose, then two weeks of tapering off. Hopefully this will get the behavior under control.

 

4. With the asthma, and some immune deficiency, you may be able to get monthly IVIG covered by insurance. This could be the answer you need! (A friend of mine has a daughter who has severe asthma, and makes no antibodies to strep- she isn't pandas. She gets in home monthly IVIG- it has been a life changer for them.)

 

Good luck and keep us posted!

[EAMom]

You can skip the bird, though. Just make she washed her hand really good if she handles it.

 

ha ha Vickie. I had no idea what you were talking about. Then I saw the blurp about the cockapoo (not cockatoo!)

[ShaesMom]

I agree with every else. Try for a longer dose of the abx-30 days is good. I would also get a copy of that blood work ASAP and followup with an Immunologist to see if you can get the IVIG started sooner rather than later. If your daughter has an underlying immune issue she is going to continue to get sick.

[nojo]

Thank you all for taking the time to write. I've spent alot of the morning crying because I'm just so overwhelemed, and not ready to face another afternoon of the crazies after school. I know I'm fortunate she can hold it together at school, but the harder it is for her to do that, and the more tired she becomes, the more I bear the brunt of her rages afterwards. Yesterday, I just held her with her blanket while she screamed.

 

For those who asked, she is 7, weighs 45 lbs. Currently she is on Keflex 250mg. The dr. put her on that because the time before she was zithromax (ended aprox 3wks) time which was second antibiotic after omnicef. Her sister(6) also gets strep often and is being treated currently. Will she have to be on prophlactic also? I know we are just coming into the start of the school and strep season. I have to do something different. FYI, I did laugh about the bird, Mollie, our cockapoo, is a dog.

[EAMom]

I would do at least a month of full-dose Azith before going to a lower dose. I don't think (many) PANDAS kids have a normal immune system against strep, so I don't believe the "typical" rules of treatment apply to them.

[EAMom]

We asked about putting our other dd on abs (to keep strep out of the household) but our ped vetoed the idea. We may attempt to override that although I would like to get her Cuuningham values done too as she does have some issues which could be low grade PANDAS.

 

Our PANDAS dd has been on 250mg/azith daily since June 08 (almost 8 years old at the time). She was about 45 pounds when she started at that dose, now she is 54 (9 years old).

[ShaesMom]

If you haven't already done so, I would get copies of all her medical records and start a three binder with different catagories. After I started a binder and found the time to look over her medical records we really began to see just how sick she had been her whole life. I take this binder with me to every doctor's visit-they laugh at me but they also know I've been thorough. Having the complete picture there in front you is eye opening.