New and Overwhelmed Please HELP!

[momcap]

I am so thankful for all this information. I'm reading Saving Sammy now and praying about what to do. For now he is own quite a few supplements and it has helped some. Especially the OCD symptoms. The Inositol has helped him a lot in that area. Unless it's just a coincidence that he is better. Our biggest issue is with him being scared of being alone in any room especially bathrooms and he will not sleep alone because of the scary intrusive thoughts. Any help in how to help him with this would be great.

 

My ds(7) is also afraid to be in any room alone and particularly hates bathrooms. This summer he was asking me to come in the bathroom with him, before finally refusing to go in there at all. He started peeing outside until he became convinced that there were bugs outside waiting to get him. This summer was pretty rough, and he cultured positive for strep in Sept. He also won't sleep alone, so we let him sleep in a double bed with his 4 year old brother. It's not ideal (especially when one of them gets sick) but it gets us through for now. The anxiety stuff is really debilitating! We tried inositol, but didn't have as much luck.

 

It's really hard to know what to do isn't it? I believe it is critical to find a doctor who is very familiar with all of this. We're waiting on Cunninghams and doing a phone consult with Dr. T next month. I hope to have a good sense of direction after that. Right now I'm just waiting...and praying.

[colleenrn]

Blessed-

Do you know how long they let the throat culture grow out? That is one reason why tests come back negative. Some labs only run it for 24-48 hours and it needs to be run for 72 hours. I have even known labs to read it at only 24 hrs. and throw it in the trash. IF that is the case, maybe they can reculture and allow it to grow out 72 hours.

 

My kids have had strep based on their PANDAS symptoms with a unmistakable strep rash and still tested negative on the throat culture. There are so many other places that strep can reside besides the throat (sinuses, gut, perianal area).

 

We did a phone consult with Dr. T and he has been helping us. We have not consulted with other PANDAS drs yet, but will if we need to.

 

Good luck and hang in there.

 

Colleen

[EAMom]

Yup, I think it is the podcast with Dr. Latimer that mentioned that strep doesn't have to be in the throat, it can be other places.

[mom love]

Blessed mom, You may want to consider getting all your test results on paper copies and searching for a new doctor. Early on when we first suspected pandas and the doctors were telling me to stop being a paranoid mother and to stop reading the internet, I found an older doctor in our group who had seen an OCD case directly after strep and he didn't think I was crazy. He wanted to see high titers though to treat. We have not had high titers but you do! Our daughter was in remission then so we were not sure what to do then anyway.

 

Saving Sammy's doctor treated for only high titers and symptoms. I think you could find someone. Also, Dr. Trifilleti in New Jersey is a very smart, experienced doctor and does phone consults withoug a long wait I believe. I would definitely call him if I were you to get things going and to have someone to consult with your local doc. You may really want to consider hunting for a new local doc. DO's are generally more open minded and often think outside the box.

 

Have you posted yet where you live? If you do, some may pm you information about docs. Since there are no abx in the picture right now, read some of Stephanie2's posts about olive leaf extract (OLE) you could do that to see if it helps.

 

And yes, IMO you should believe that strep was and is doing a number on your child. You have the titers. He needs antibiotics IMO. At the very least look into OLE for immediate time being. You and your family are in my prayers.

[kimballot]

Your son may not be in the WORST exacerbation he has ever been in, but I am hoping this is the worst he will be in from this point forward. Once you get a handle on this, you will be able to help him quite a bit. The point is to get all the bloodwork you can before you start medications or OLE - and the second point is not to delay treating with medications or OLE. Not an easy task! Getting the bloodwork done first will give you a baseline to work from. Decide if you can travel to a PANDAS doc or need to do a phone consult. PM parents who work with different docs if you want to hear experiences - we try to support all the docs, but they have different approaches and you can learn about their approaches from parents. Once you've decided on a doc (based on location / costs / speed of appointment / approach, etc), then get a list of bloodwork from the doc and ask your pediatrician to order it. Consider the Cunningham test and the igenex lyme test as well - both of which are expensive- if you can afford it. My understanding is that the cunningham test helps to separate kids who have these symptoms in response to antibodies (like kids with PANDAS and even lyme) from kids who have these reactions as a primary brain problem (like kids with tourette). Lyme testing will help you to know if there is an underlying lyme infection, which will help you to target the treatment better. Mycoplasma testing is also a must. Strep, mycoplasma and lyme can work off each other to produce some nasty symptoms, from what I read on this board. Remember, too, that you can start with one doc and then switch to another - it is OK. The important thing is to get started.

 

Keep us posted on how things are going. As you can see from all the responses you received, this is a wonderful forum of knowledgeable and caring people. You have received several excellent ideas. We want to hear how things go!

[kimballot]

I am so thankful for all this information. I'm reading Saving Sammy now and praying about what to do. For now he is own quite a few supplements and it has helped some. Especially the OCD symptoms. The Inositol has helped him a lot in that area. Unless it's just a coincidence that he is better. Our biggest issue is with him being scared of being alone in any room especially bathrooms and he will not sleep alone because of the scary intrusive thoughts. Any help in how to help him with this would be great.

 

We've had similar issues. Bathroom was tough and so was bed at night. We have been dealing with this since infancy and my son is 13. I learned early on to lay down in bed with him when he could not sleep alone -rather than having him sleep with us. This worked for us because then I was able to wean myself out of the room once the antibiotics kicked in... I'd start with sitting on the bed with my laptop... then sitting on the floor in the doorway.... then sitting in the hall.. then the next room over, etc. He still has mild symptoms and someone needs to be upstairs when he takes a shower or goes to bed... but it is not horrible. We are still working on his treatment, but he is much better than he was 6 months ago!!

Hang in there~