Child with pain and now hallucinating

[Tascha]

My son is 10 years old. August 19th I took him to the Pedi. for Strep symptoms, Sore throat, Headache, temp 99, Nausea, Fatigue and general aching. Doctor said his throat did not appear to be strep and said it was a virus that was going around. September 15th I took him back to the doctor symptoms were still there and much worse. He had pain that migrated through his body It would go from his feet to knees, legs, stomach, chest, and so on. Every few days the pain would rotate around his body. He started to have shooting pains in his back, chest, head, stomach, feet, hands. The doctor ran labs on him and found nothing in the labs that she ran. A week later we came back again and I asked her to please check for Strep. 3 days later she called with a positive test for Strep A she prescribed 600 MG of Cefdnir for 10 days. Symptoms did not get better at all. He could not go to school anymore because the pain was so intense and he was always sick at his stomach, had a hard time even getting out of bed. We went to Texas Children’s Rhematology and the doctors could not find any reason for the pain and said they did not feel that he had Rheumatic fever and that they assumed that his Strep Test was a false positive that he was just a carrier and he had Depression issues and needed Elevil, PT,OT, Psychology and to be pushed back into school, we should show tough love. I then took him to an Infectious Disease Doctor and his labs showed a different story. ASO tilters were 390 this labs high was 200. And Anti-DNase B Strep Antibodies 1:1920 We then took a different look at what was happening. The Pedi and Neurologist that we had seen as well in those few weeks both said we should go ahead and start the Elevil. We then saw a Cardiologist and he said his heart seemed fine. We started 10MG of Elevil. We started to notice new behaviors, not wanting to eat meat, crying if we ate meat, crying for inappropriate reasons, Angry, Aggressive, not sleeping well, not wanting to sleep alone, obsessed with gaining weight, constantly cleaning his Electronics, could not concentrate, he also complained of his body moving when he did not tell it to, he could no longer take a bath without having pain all over his body. He said it felt like burning salt water all over him. His pained seemed to be getting a little better but not the behavior. The biggest problem was about 30 to 40 minutes after taking the Elevil he would have horrible stomach pains. We went to the Physiologist as suggested October 25th. She said it sounds like he has Pandas and we should change to an SSRI. The Pediatrician agreed and put him on 10MG of Fluoxetine. The pedi wanted us to stop taking the Elevil immediately. She also prescribed 600 MG of Cefdinir again for 3 weeks. He has been on the Medications for 3 weeks.

Behavior is better, happy, most old behaviors gone. Although, he still thinks he is not getting any better but the OT said that is normal for kids that have been very sick. Energy is coming back, but pain is also. It is not at all the same intensity as before but it is becoming present again. I have written several leaders in the country on PANDAS since I have not been able to find one doctor in my area that has a foggy clue about PANDAS, and they say my son is not typical with his pain but that they still do not know all there is to know about PANDAS. He has started to have insomnia and hallucinations. Are we on the right Medicines? Shouldn't he have gotten better from the antibiotic alone? Is Omnicef not the best antibiotic for treating this? Has anyone read studies where this kind of nerve pain fit with Pandas? The Neurologist told me the other day that he has to have Tics and much higher tilters to have PANDAS and I have not read that anywhere. None of our doctors have a clue how to treat my son and I live in one of the largest healthcare communities in the world. He is now off antibiotics and taking 20 MG of Prozac. Still says he feels pain but it is better but still has huge problem with insomnia and the hallucinations that are increasing and making me feel like we could be heading backwards.

[kimballot]

Tascha -

 

I am so very sorry that you have been going through this. What a nightmare this must be for you and your family. I don't know how much time you have spent looking around the posts here, but if you poke around you will find lots of kids who have PANDAS and do not have tics. You will also find many kids with PANDAS who do not have elevated titers (not even as elevated as your son's titers).

 

It sounds like your son had a positive throat culture and elevated strep titers, and a change in behavior that worsened with medications (antibiotics and psychotropic meds). You are correct that omnicef may not be the best medication for your son. Omnicef is a very good medication - it just is not what every child needs every time. It really depends on what the infection is. For strep, most people use augmentin or azithromycin. Regarding the psych meds - while some families have had positive results, many families on this forum have had negative results when using them. I think they need to be given systematically to get to the right dosage of the right medicine.

 

I think it is really important right now that you get your son to a PANDAS doctor. There are some folks on the forum from Texas, and I am sure they will join in soon to offer suggestions of doctors. Until then - please know that you are in the very best place now. Read through the posts and PM me if I can help you.

[dabel]

I am so sorry that your son is going through this! I am also sorry that it takes so long to get these kids properly treated. I have to say your child sure sounds like PANDAS. My son had a lot of pain with his biggest exacerbations but not quite like you are describing. My child also hallucinated! It is so sad to watch your kid go down this path! Antibiotics are a must!!! I recommend you get him to one of the well known PANDAS doctors. You are lucky to have caught this early and hopefully they can get things turned around quickly. Some of us go years wondering what is wrong. As far as titers go....some kids' titers don't even go up. Your son's antiDNase b is quite elevated....I'm not sure that doctor knows what he is talking about as far as that goes! This forum is full of great people who will guide and support you on your journey. I am sorry that you are here but it is a good place to be when you need it! Hang in there and educate yourself!!

[Tamistwins]

Hi tascha,

I don't have much to offer as I am also struggling to find what best works for my children. But, I did want to acknowledge your post and am so sorry for what you are going through. I hope your son gets better. Please test him for other infections aside from strep such as mycoplasma pnemonia and ebv, mono.

Good luck!

[Suzan]

I agree with the others, it sounds like pandas. The pain makes me think that it would be a good idea to get the Igenex Lyme test's #188 and #189 (western blots) to check for Lyme. My dd's have pandas and lyme and my older dd has very bad pain along with her other symptoms that we could never explain.

 

HUGS to you and your sweet boy.

 

Susan

[butterflymom]

=

Edited February 2, 2016 by tampicc

[momcap]

Hi Tascha,

 

I am mostly a newbie myself. We just heard about PANDAS this summer. I'm not sure I have any great advice to offer. I'm just trying to get my own son well first. But they do sound very similar. Here's our journey in a nutshell:

 

My DS7 has similar symptoms - no motor tics, but almost all other PANDAS symptoms. Most troubling to me is his chronic and severe pain episodes. We did 4 years of psych therapy and meds before hearing about PANDAS. Last January he had one episode of mania with auditory hallucination (he told me he was hearing crying and beeping sounds that he knew weren't real). A week later he cultured positive for strep. I never connected those 2 events until hearing about PANDAS this summer. Then this fall he was talking about not feeling real and how all of our stuff seemed different. With the return of the "crazy talk" I had him cultured and sure enough he was positive. He has had negative cultures too, so I don't think he's a carrier, although our doctor questions whether he might be. Our 5 year old is a carrier - always positive and no symptoms at all. I would get throat cultures and titers on the whole family. If this problem is fairly constant then chances are a family member, or best friend, or even a pet, is a carrier.

 

In our experience, ibuprofen is a good bandaid. It helps the psych symptoms as much as the pain. We also did a 10 day trial of penicillin and saw a complete transformation. After 5 days he did not have any pain, started sleeping through the night, and had a completely different personality - calm and happy. It was amazing. Unfortunately it all came back 24 hours after the penicillin trial ended. We are starting augmentin this week and I'm feeling hopeful.

 

I also had the same symptoms myself as a teenager. At times the pain was unbearable. My mother took me to every doctor under the sun and we never got any definitive results. I remember seeing a rheumatologist who said my levels were higher than normal, but not high enough to diagnose juvenile rheumatoid arthritis. In my early 20s I just got better. I have no idea why, except that perhaps my immune system finally matured and started working properly. Who knows?

 

In any case, welcome and I hope you find lots of answers here. I know I have. Working with a PANDAS doctor has been a critical puzzle piece for us. We're in Canada, so we are consulting over the phone. Far from ideal, but much better than any other option we have found so far. I am also working hard to educate our doctors here, and making some headway.

 

Good luck and welcome!

[lyme_mom]

You should absolutely test for Lyme w igenex labs (other tests are wrong fifty percent of the time ), bartonella, babesia, myxoplasma, etc. I'd see a Lyme literate doctor because these symptoms sound like Lyme to me and the number of members of this forum who have discovered that strep is just one of the infections their child has is growing every week. The right combo of medications can make a huge difference because different antibiotics treat different infections..

[KeithandElizabeth]

I agree with lymemom about testing for lyme via IGEXEX.

 

Our son had horrible hallucinations on top of his many other neurological/psychological symptoms and we discovered he had lyme disease along with many coinfections.

 

The hallucinations are so scary for the child and the parent!

 

Elizabeth

[norcalmom]

We only had one scary event like this. And it was in the worse of my DS's exacerbations. But might want to talk to doctor about that and try to get a scan done, because pandas isn't the only thing that can cause symptoms like this.

 

Here is a great page from the pandasnetwork page that summarizes some studies on pandas and encephalitic like episodes:

 

http://pandasnetwork.org/strep-controversy/encephalopothy/

[3boysmom]

Wow! I feel like I just read about my own 10 year old son here in Texas. Their stories are too similar! We have begun a support group here in the Woodlands area. PM me if you are interested. Our son only got worse on prozac and went into Sydenhyn's Corea (Spelling?) He only improved after getting on Augmentin XR 1000 twice a day. I have a great pediatrician, but he IS NOT a PANDAS doctor. (only willing to work with us because he has become a believer since knowing our boys since birth and seeing the changes overnight) Also, He seems willing to do what he can because we are in the care of a PANDAS doctor in Maryland (Dr. L)and he seems more comfortable taking a back seat, but doing whatever he can. We too had all of the pains and the scary hallucinations. When we began the Augmentine XR 1000, the face and body tics stopped within 3 days. It has been 8 months since we becan antibiotics and we still are not completely well, but compared to last year...WE WILL TAKE THIS.

 

Can you believe that we are so close to one of the world's leading medical centers and there is NO help available for us?! Some doctor could come to Houston and make a killing! PM me and I can getr you our support group info.

 

Prayers to you and your family,

Linda (3boysmom)