Please keep me from Googling and panicking

[tantrums]

So initially I thought I was very lucky today. I had my son at the immunologist. Honestly, I didn't even realize she IS an immunologist, just his regular allergist - DUH! She is wonderful!! I'd given a list of what is going on to the nurse to have the doctor read before she came in. She walked in with a shocked look on her face and asked me "Has anyone suggested PANDAS to you?!" Well yes thank you She spent a very long time with us and is going to contact the neuro to insist they seem him right away. Also contact the pediatrician to have her order an MRI and ASO titers. Since he'll have to be put under for the MRI, she wants the ped to order it.

 

But I'm sitting here now realizing she mentioned a concern as well for his frontal lobe and that is her primary reason for the immediate need for an MRI. I did a quick Google and got myself out of there fast. Quite honestly - I am exhausted after a very bad weekend with him and I NEED to sleep tonight!! I did see some similarities to my son.

 

I also checked his bookbag tonight to find a note from his teacher that it was a VERY bad day and he in fact tried to BITE another child! HE IS SIX!!! I'm beyond MORTIFIED here! He just seems to be getting so much worse every day! Tonight, he is good so far except for the obsessive drawing thing. Hasn't mentioned that he can't ummm... "find" his crayond - he's just using pens. But his mood is pleasant at least. I dont' even know what to say to him about the biting!! Obviously, we did adress it and took away all computer games, but I don't know what to do beyond that.

 

anyway - I digress... Has anyone else had a frontal lobe issue, or more specifically tumor (which she didn't say specifically) mentioned?

 

She did also order the abx to continue until all testing is done and the neuro sees him

 

I do have to say - I consider myself VERY lucky that the first two doctors I went to immediately acknowledged this problem and reckognized PANDAS. The major hurdle seems behind us at least. Just have to continue to navigate from there.

 

I'm sitting with Dr. T's number in front of me... He's only 2 hours from me, but I"m going to be out of work for 6 months after my surgery and I really don't know how I can afford it. I know he said he won't turn away for basis to pay, but if you just look at my salary, I can surely afford to pay.

[tantrums]

Wow! Literally as I hit post - my pediatrician called.

 

Strep culture was positive. She will write orders for MRI and ASO and will write me the ABX for as long as we need.

[Suzan]

So initially I thought I was very lucky today. I had my son at the immunologist. Honestly, I didn't even realize she IS an immunologist, just his regular allergist - DUH! She is wonderful!! I'd given a list of what is going on to the nurse to have the doctor read before she came in. She walked in with a shocked look on her face and asked me "Has anyone suggested PANDAS to you?!" Well yes thank you She spent a very long time with us and is going to contact the neuro to insist they seem him right away. Also contact the pediatrician to have her order an MRI and ASO titers. Since he'll have to be put under for the MRI, she wants the ped to order it.

 

But I'm sitting here now realizing she mentioned a concern as well for his frontal lobe and that is her primary reason for the immediate need for an MRI. I did a quick Google and got myself out of there fast. Quite honestly - I am exhausted after a very bad weekend with him and I NEED to sleep tonight!! I did see some similarities to my son.

 

I also checked his bookbag tonight to find a note from his teacher that it was a VERY bad day and he in fact tried to BITE another child! HE IS SIX!!! I'm beyond MORTIFIED here! He just seems to be getting so much worse every day! Tonight, he is good so far except for the obsessive drawing thing. Hasn't mentioned that he can't ummm... "find" his crayond - he's just using pens. But his mood is pleasant at least. I dont' even know what to say to him about the biting!! Obviously, we did adress it and took away all computer games, but I don't know what to do beyond that.

 

anyway - I digress... Has anyone else had a frontal lobe issue, or more specifically tumor (which she didn't say specifically) mentioned?

 

She did also order the abx to continue until all testing is done and the neuro sees him

 

I do have to say - I consider myself VERY lucky that the first two doctors I went to immediately acknowledged this problem and reckognized PANDAS. The major hurdle seems behind us at least. Just have to continue to navigate from there.

 

I'm sitting with Dr. T's number in front of me... He's only 2 hours from me, but I"m going to be out of work for 6 months after my surgery and I really don't know how I can afford it. I know he said he won't turn away for basis to pay, but if you just look at my salary, I can surely afford to pay.

 

Wow! What abx and how much? Positive strep, wow! Great doctors who know PANDAS, wow! I am happy for you!

 

The frontal lobe thing though, I don't have any experience with that. Good for you for getting out of google. Give yourself a rest for a while and absorb everything.

 

Regarding the biting, my younger dd did a lot of biting. For her it was sensory. I still push her away if she puts her mouth on me, afraid she is going to bite, even though she does not do it any more. I bought things she was allowed to bite on and told her if she felt like biting she was to get one of those things. This did help her but I had to keep reminding her. We talked about the biting and how it made others feel, blah, blah, blah, but really, she was having an emotion she didn't know how to handle. Allowing her to get her bites out on appropriate things helped. Just a thought anyway.

 

Susan

[matis_mom]

Wow! Literally as I hit post - my pediatrician called.

 

Strep culture was positive. She will write orders for MRI and ASO and will write me the ABX for as long as we need.

Count your blessings! To have an immunologist AND your pediatrician on board, that is awesome! Hopefully your son will see quick improvement on the antibiotics. Once all your tests are back, then you can panic, but for now, I would just be patient and see how he does. Also remember to test other family members...just in case

 

Isabel

[thereishope]

I'm happy you're getting answers. Was yours the one who didn't do the rapid or did the rapid come back negative?

[tantrums]

The rapid came back negative and I was honestly expecting the culture to as well. I have NO idea when he had strep! He's on amoxicillin 400mg 2x a day.

 

I realize I am very very lucky that these doctors have been so great!

[smartyjones]

first and foremost - do not panic - easier said than done, right?! it sounds like you have drs checking things out and you'll just have to get the mri and go from there. you just don't know right now and you'll do what you have to according to the mri.so you're doing what you need to - don't freak out about the frontal lobe until necessary.

 

secondly - if he's strep positive, that could certainly explain a lot. when my son first presented, his behavior was so whacked. he is now on a homeopathic remedy that appears to be helping with his exacerbation from the flu in the past few weeks. in the explaination of the remedy, it states, "disturbs the nervous system profoundly. it is as if some diabolical force took possession of the brain and prevented its function."

 

third - i have a 'good' story about a frontal lobe tumor - and aside from pandas, the craziest health story i know! about this time last year, a friend at work's mother was diagnosed with a frontal lobe tumor - left side, i believe. she had an operation and they removed the tumor which had been very slow growing - they estimate she'd been born with it - it was about the size of a lemon. a few years ago, she'd been diagnosed as bipolar. after the surgery, they decided they thought those issues were really related to the tumor and weaned her off the bipolar meds. further - she was wild as a teenager, generally out of control and pregnant at 16. the area where the tumor was is where inhibitions are, specifically sexual control and inhibitions. the dr's now estimate (of course, it's hard b/c she's in her 50s and so many factors influence so much) that much of her troublesome issues through her life have been related to that tumor - it was just slow growing and didn't present in a way to be diagnosed. currently, she is doing wonderfully. no meds, no trouble from the surgery, etc and more even-keeled than ever.

[T_Mom]

Wow--I have to echo the group here, what an amazing situation you have there!

Two doctors, one certainly willing to treat with antibiotics, a positive strep test, these are good (you know what I mean...) If it were my child I would do what finally helped us--ask for a month of antibiotics, to see if there is an effect.

 

Quite a few of us have had MRI's --and it is a safety issue just to rule out anything else, I was scared too. I would say try not to worry yet-- The fact that you found positive strep today may well be the key.

 

All the best, may it subside very soon-- (an incident of biting is not too far "out there", you have caught this early hopefully:)

[Joan Pandas Mom]

My son had an MRI Sat. pm. I haven't talked to the dr. yet but a friend had radiologist read it for him. It showed a Gliosis Deposit on the left temporal lobe. I was told it was from months ago and it wasn't anything to worry about. My son had a concussion months ago. I was also told adults have a few but they usually don't see them in 15 year olds. It wasn't on his MRI in 2005 when this nightmare started. I let you know what I find out.

 

So initially I thought I was very lucky today. I had my son at the immunologist. Honestly, I didn't even realize she IS an immunologist, just his regular allergist - DUH! She is wonderful!! I'd given a list of what is going on to the nurse to have the doctor read before she came in. She walked in with a shocked look on her face and asked me "Has anyone suggested PANDAS to you?!" Well yes thank you She spent a very long time with us and is going to contact the neuro to insist they seem him right away. Also contact the pediatrician to have her order an MRI and ASO titers. Since he'll have to be put under for the MRI, she wants the ped to order it.

 

But I'm sitting here now realizing she mentioned a concern as well for his frontal lobe and that is her primary reason for the immediate need for an MRI. I did a quick Google and got myself out of there fast. Quite honestly - I am exhausted after a very bad weekend with him and I NEED to sleep tonight!! I did see some similarities to my son.

 

I also checked his bookbag tonight to find a note from his teacher that it was a VERY bad day and he in fact tried to BITE another child! HE IS SIX!!! I'm beyond MORTIFIED here! He just seems to be getting so much worse every day! Tonight, he is good so far except for the obsessive drawing thing. Hasn't mentioned that he can't ummm... "find" his crayond - he's just using pens. But his mood is pleasant at least. I dont' even know what to say to him about the biting!! Obviously, we did adress it and took away all computer games, but I don't know what to do beyond that.

 

anyway - I digress... Has anyone else had a frontal lobe issue, or more specifically tumor (which she didn't say specifically) mentioned?

 

She did also order the abx to continue until all testing is done and the neuro sees him

 

I do have to say - I consider myself VERY lucky that the first two doctors I went to immediately acknowledged this problem and reckognized PANDAS. The major hurdle seems behind us at least. Just have to continue to navigate from there.

 

I'm sitting with Dr. T's number in front of me... He's only 2 hours from me, but I"m going to be out of work for 6 months after my surgery and I really don't know how I can afford it. I know he said he won't turn away for basis to pay, but if you just look at my salary, I can surely afford to pay.

[T_Mom]

One more thought--

If you don't see a change with the antibiotics within a few weeks, given the positive strep test you may want to consider a trial steroid burst via Dr. K's protocol (he does phone consults.) www.webpediatrics.com

 

He essentially uses steroids to almost "test" for Pandas (inflammation.) If your son's behaviors are truly "odd" and getting worse this may be helpful.

[tantrums]

Oh Joan - let us know when you get the difinitive results! Between my back and my head I could probably BE a radiologist myself I've learned what MOST of the terminology is and what I don't know, I know how to find it. Again, it stinks that I've had to learn so much for myself, but in a way, I'm thankful now because I know how to navigate so much and will help me shorten the time it takes to do so for my son with his similarly "unusual" (although I'm really thinking this is SO much more "usual" than anyone thinks!) condition.

 

I am so totally counting my blessings here. Dont' get me wrong. I'm on the verge of tears tonight. Mostly out of relief honestly. I do honestly realize how very lucky I am to have this diagnosis so quickly.

 

The ped and I had discussed an MRI for him to rule in/out Chiari a while ago and decided it wasn't worth it to put him through it as he was escalating with his health worries. It's obviously necessary now and I know it needs to be done. I've probably paid for that machine (or my health insurance has) so at least I'm comfortable to some extent with the process - just different when it's your six year old.

 

I guess i just could've lived without any mention of frontal lobe today.

 

But yes - I will NOT Google! I repeat - I will NOT Google!!

[Joan Pandas Mom]

I hear you. I was googling Gliosis a few hours yesterday.

 

Oh Joan - let us know when you get the difinitive results! Between my back and my head I could probably BE a radiologist myself I've learned what MOST of the terminology is and what I don't know, I know how to find it. Again, it stinks that I've had to learn so much for myself, but in a way, I'm thankful now because I know how to navigate so much and will help me shorten the time it takes to do so for my son with his similarly "unusual" (although I'm really thinking this is SO much more "usual" than anyone thinks!) condition.

 

I am so totally counting my blessings here. Dont' get me wrong. I'm on the verge of tears tonight. Mostly out of relief honestly. I do honestly realize how very lucky I am to have this diagnosis so quickly.

 

The ped and I had discussed an MRI for him to rule in/out Chiari a while ago and decided it wasn't worth it to put him through it as he was escalating with his health worries. It's obviously necessary now and I know it needs to be done. I've probably paid for that machine (or my health insurance has) so at least I'm comfortable to some extent with the process - just different when it's your six year old.

 

I guess i just could've lived without any mention of frontal lobe today.

 

But yes - I will NOT Google! I repeat - I will NOT Google!!

[ajcire]

Wow! I am glad for you that the culture did come back positive. When my ds tested positive for strep without any actual strep symptoms, just a throat clearing tic and emotional liability I was so relieved. It just made me feel not crazy.

 

Phew. That is really great that you are finding such help with your doctors... Hopefully soon it will be something that they all get and can treat.

[thereishope]

The first time my son's PANDAS surfaced, his rapid came back negative, but his culture was positive. That's why it is so important to demand cultures.

 

In my son's subsequent exacerbations, the rapid did come back postive. So continue to get a rapid as well if you should ever suspect strep again.

 

 

The rapid came back negative and I was honestly expecting the culture to as well. I have NO idea when he had strep! He's on amoxicillin 400mg 2x a day.

 

I realize I am very very lucky that these doctors have been so great!