MRIs?

[sosudden]

I am new to this forum and my brain is bursting with questions! My 9 year old has "disappeared" into this awful thing called PANDAS. I am just trying to piece everything together to present to her Pediatrician (who has willingly started her on antibiotics!!) Question 1 is has anyone had an MRI to see inflammation of the basal ganglia?

Question 2 is has Keflex (cephalexin) worked for anybody? That is what my DD is on. Day 7. There are moments that I think I see the old sparkle in her eye...few & far between. We are getting copies of her medical records and starting to put things together---trying to trace back as far as we can remember. I believe she has had this since 3 or 4 years old. that's 6 years!!! :(

Question 3 is will she come back!!?? She used to love life!!! Now she looks pale & petrified and pissed off 95% of the time!! ((Note that up until a week ago she looked pale & petrified & pissed off 100% of the time))

I am screaming inside a lot of the time!!! Help these kids!!!!

Thanks for any reply & support

[Chemar]

welcome though sorry to hear what brings you here

 

bumping your post up so others will see and respond

[smartyjones]

I Question 2 is has Keflex (cephalexin) worked for anybody? That is what my DD is on. Day 7.

 

 

so sudden -- sorry to hear you are here but you sound on a right track to find some answers!

 

i don't know so much that many use keflex -- however, we did an saw great results. ds7 had sudden onset at age 4.5. after a few months figuring things out, he was put on azith for 5 days. it made things so much worse. we switched peds, new one did 30 days of keflex and in about 3 days, ds was 100% back to himself. after about another 30 days off, he started backsliding. he went back on, although not same higer dose and while saw some results, not so dramatic as the first.

my advice would be to keep her on the keflex, or another abx if you switch, until you feel you have a good gameplan.

good luck!

[Mayzoo]

We have an MRI scheduled for the 23rd, if we can ever get a negative strep test (Hosp does not want her there if she is sick).

[dcmom]

sosudden-

 

I think the general concensus is that a regular MRI cannot detect basal ganglia information. However, an MRI is probably a good idea just to rule out other causes.

 

I don't know about the Keflex, all kids seem to react differently to different antibiotics. Most on this forum seem to settle on zithromax or Augmentin. Did she have a positive strep test? If Keflex doesn't work, move to one of these antibiotics. My daughter was only "sick" with pandas for about 5 weeks when we put her on zithromax. It took 30 days at full strength dosage for her to get better. The improvement is slow, and somewhat "saw-toothed", try to look at progress week over week- not daily. If progress is being made weekly- stay the course!

 

IMHO it is imperative to treat pandas with a very knowledgeable doc, not a ped. Do you have a specialist working with you?

 

And, YES, you will get her back

[nicklemama]

If your daughter has been sick w/ PANDAS for a long time, its going to take a while, unfortunately, to see major improvement. Look for the little things and keep after it. I would not expect any major improvement before 30 days of abx. If you get it before then, great. Don't lose hope. As for the MRI, great for ruling out other things. I do not believe it will show inflammation of the basal ganglia. Only one test supposedly shows that.... a PET scan w/ a very special tracer. Its only done at Detroit Children's Hospital by Dr Harry Chugani. I would caution you that it is highly experimental and there have been PANDAS kids who's PET scans were negative.

[sosudden]

Hi! Thanks so much for moving this up & for those who responded! I believe the support on this forum is going to help me tremendously!!

We do want an MRI so hopefully we can get one.

Pediatrician wrote for 20 days of Keflex so 12 more days til I need to make sure I have him on board to keep treating her with more if needed.

We have an appointment with a Dr on Feb 10th ~ found him on an OCD website link! He is an allergist & immunologist & treats PANDAS patients!! So excited yet nervous to get my DD to him ~ time is in sloowwww motion. He was the only one in our state by the way which is just CrAzY to me!!!

That being said, I think there is a little tiny more sparkle in those big brown eyes of hers. Still anxious, nervous, ticcing, moving, screeching BUT able to interact with me & her dad & siblings (who have missed her too of course:()

I will share our story soon! DD staying home from school today because there is a substitute so I don't want her reading over my shoulder.

May all of our littles have a piece of peace today!!

[concerned mom]

My son had an MRI but it didn't show inflammation of the basal ganglia, but like others said above, I think the MRI was mainly ordered to rule out other causes of my son's symptoms.

 

My son is allergic to Augmentin. So the first antibiotic he was prescribed was Keflex. We saw improvement right away. I'm not sure why, but after about a month or so our doctor changed the antibiotic to Ceflacor which is in the same family of cephalosporin's as Keflex. He has continued to do well on that. He's been taking it for about a year and a half.

 

I remember the early days of our PANDAS experience and had the same fears as you did. Hang in there! I'm happy to report that my son is back to his old happy self. We still see tics once in awhile if something is going around the school but we don't see the more extreme emotional symptoms and separation anxiety that scared us so much at the beginning.

[oivay]

We had a brain MRI done, which was negative. They had to do it under general anasthesia because she was practically convulsing at that point.

We also had a video brain EEG, which was also negative.

It's also my understanding that Pandas kids generally have negative brain MRIs.

 

As far as the abx go, we initally saw improvement in under a week with zithromax, until the next time.

 

When we used clindamycin and a prednisone burst, there was a dramatic improvement within 48 hours. Complete resolution within about a week. That worked pretty well until the next time.

[mkur]

My son has had 3 MRIs - all normal - except the 2nd one showed sinus problems. You will have to ask them to check the sinuses beforehand - not done automatically.

[Dedee]

Just want to say welcome to the board and I am sorry you have to find yourself here. You have come to the right place and you will get great information and support from the wonderful people here. It's great that you have already started antibiotics and have an appointment with a specialist. I applaud your quick action. You may want to PM someone on this board from your state and see if they know anything about your specialist. Unfortunately, some here have gone to see physicians claiming to treat PANDAS only to find that they really are not true PANDAS advocates. Long story.....lots of politics. That is most likely not the case in your situation, but it never hurts to check with someone who has BTDT. If you aren't getting much improvement from your current antibiotic after about two weeks, it wouldn't hurt to consider a different one. Zithromax has a good reputation for turning things around quickly with these kids. It has an additional immun-modulating affect that most of the other antibiotics don't have. Also, if you aren't using steriods or Motrin, you might consider going ahead with that. Giving Motrin or Advil a few times a day can help with symptoms by decreasing inflammation. I feel sure with your diligence you will get your daughter back. It takes persistance and determination but I sense that you have what it takes. Best of luck in your journey. Please stick around and keep us updated.

 

Best Wishes - Dedee

[EAMom]

My son has had 3 MRIs - all normal - except the 2nd one showed sinus problems. You will have to ask them to check the sinuses beforehand - not done automatically.

 

Which is significant b/c strep can hide in the sinuses.

[EAMom]

I am new to this forum and my brain is bursting with questions! My 9 year old has "disappeared" into this awful thing called PANDAS. I am just trying to piece everything together to present to her Pediatrician (who has willingly started her on antibiotics!!) Question 1 is has anyone had an MRI to see inflammation of the basal ganglia?

Question 2 is has Keflex (cephalexin) worked for anybody? That is what my DD is on. Day 7. There are moments that I think I see the old sparkle in her eye...few & far between. We are getting copies of her medical records and starting to put things together---trying to trace back as far as we can remember. I believe she has had this since 3 or 4 years old. that's 6 years!!! :(

Question 3 is will she come back!!?? She used to love life!!! Now she looks pale & petrified and pissed off 95% of the time!! ((Note that up until a week ago she looked pale & petrified & pissed off 100% of the time))

I am screaming inside a lot of the time!!! Help these kids!!!!

Thanks for any reply & support

 

Where do you live?

 

Depending on your dd's size (if Keflex doesn't work) another good antibiotic is Azithromycin. Either 250mg or 500mg/day depending on her weight. Azith. was the 4th antibiotic we tried, and the one that did the trick for us after 5 mo. long PANDAS exacerbation in 2008 (she was 7). In hindsight, think she had low grade (flying under the radar) symptoms since at least age 4. Mood started to improve after 5 days, OCD started to improve after 2 weeks, and tics went away after 6 weeks...so whatever antibiotic you use, it may take some time. Also, dose is important. Low prophylactic doses don't seem to cut it in these kids.

 

We did do an MRI, mainly to rule out any other problems. It was normal.

 

Try adding in Motrin/advil/ibuprofen. It may help with some symptoms. (Don't give it on an empty stomach.)

 

Yup...when we were in the midst of our awful PANDAS explosion of 2008, my dh also was worried that she would never come back, but she did.

 

PS. this is a good information sheet on PANDAS from the IOCDF

http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS(1).pdf

Edited January 31, 2012 by EAMom

[Kiera]

My ds's mri was neg except for clogged sinus - t&a planned in a couple of weeks and plan to culture tonsils, sinuses and whatever else he can stick a swab in:)