Trying to find help...

[MadisMom]

I am the mother of a once very healthy child. About six months ago my little girl was sent to the hospital in the middle of night she had a rash and a high fever of 103 that wouldn't go down. Once we got to our local hospital they sent us to a children's hospital in Memphis. After hours and hours of tests the only thing that came back was and elevated strep level. Sent us home and told us to see her pediatrician. She seen her dr the next day he put her on a 10 day treatment of antibiotics for strep. A few days later she returned to school. But she started to complain of sever knee pain so again I took her back to her dr. The doctor did a scan on her knees said she was fine and it could be just her growing and something she would out grow. The pain in the knees got so bad that Madi couldn't even walk I ended up having to carry her everywhere. She was wheel chair bound for about a month and then began having seizure like episodes that progressively got worse we have spent days in the hospital had eegs ekgs ex-ray cat scans etc nothing at all except the elevated strep levels. Well she slowly got better went back to to school for a month and half I thought it was over and had my little girl back. Then I get a call one morning my daughter was had fallen out of her seat at school and was having one of her seizure like attacks. I say seizure like because every one who sees it thinks that what it is but the drs say that is not what they are because she had 1 eeg and they say that's not what it is. She had a sore throat the next days and was treated for strep. Well the last incident at school was the beginning of what seems to be a reccurance of some of the symptoms now shes having the seizure things get more frequent but now in the middle of these she wakes up ans acts very childish like a 5 year old nothing like herself she will barely recognize me or herself and wants to just hold her kitten and during the middle of one of these episodes will pass out and have another siezure like spell. And eventually she will come out of it and have no memory of it. WE have been to neurologist,rheumatologist and it goes on and on. NO ONE can figure out what this is. Our family doctor is baffled all the "experts" try to say its psychotic episodes..but my instincts know better. Something is wrong with my daughter and I just cant seem to get anyone who wants to listen.

[Ebersolk]

I am not sure where you live but you should definitely check into PANDAS/PANS and Lyme. My daughter treated for 1 year for regular then we learned it was Pandas and was linked to a strep infection and 2 years later learned it was LYME with co-infections. I do know that if you have strep that won't clear Lyme is often the culprit. My daughter's Western Blot was CDC negative but when we took the Igenix test for Lyme and co-infections and went to a Lyme doctor, she was diagnosed with Lyme. If you are near NJ, I would recommend Dr. Trifilletti or near CT, Dr. Bouboulis and near MD, Dr. Latimer. Dr. T and Dr. L are pediatric neurologist and Dr. B is an immunologist.

 

I also know my niece who had a virus also had issues walking for awhile and when the virus went away she was better but it took awhile- so I definitely think your daughter has some type of immune system issue-whether caused by strep or some other virus/bacteria.

[peglem]

Madismom, tell us where you live and we'll see if we can help you with a doctor. Most of us have had trouble finding doctors who will help.

[MadisMom]

I live in Arkansas about an hour from both Memphis Tn and about an hour from Jonesboro AR

[ThinkGutBacteria]

Sounds to me like you should look into post-streptococcal glomerulonephritis with cerebral vasculitits. It sounds scary, but if (HUGE "IF") it is this/these, the prognosis is not bad. I assume you're looking for a good pediatric neurologist?

 

See

http://cdn.intechopen.com/pdfs/22828/InTech-Atypical_clinical_manifestations_of_acute_poststreptococcal_glomerulonephritis.pdf

[Hopeny]

Madismom I am so sorry you are going through this. Many of us have had similar types of stories. I think Kerry has given you some good advice, personally my advice is to get an emergency appt with one of these doctors and get you and your daughter on a plane. My guess though we don't see him is that you could get in quickest with trifileti who is also a neurologist which might be your best bet due to seizures. There is another neurologist in New York, I will locate and pm you name , who is supposed to be an excellent diagnostician . I know how scared you must feel as I have felt scared and alone too. You are doing the right thing by advocating for your daughter. As one of my wonderful doctors told me if a child complains of pain it is significant. Today your daughter starts the road to recovery.

[Hopeny]

Sorry to add the costs of travel, doctors and testing can mount up pretty quickly so it will be good to get a financial plan together so you are prepared and the cost of treatment doesn't stand in your way if getting your daughter help.

[WorriedDADNMOM]

Sounds all too familiar-----MadisMom----PM me if you want.

 

For us, Strep has in the past couple years been a severe strain or something.Between 2010 fall thru Fall of 2011------------1) one DD with severe tics post strep infection, tremors ect.. 2) Other dd with severe anxiety post strep.

3) Teacher in first DD class that year with RA 4) 2-3 other kids in same class with immune issues, glomerulonephritis, knee pain not being able to walk.

 

Google DAN doctors near your location. Many of the peds in NW Ohio where we are at were no help. If you need anything else, please let me know.

[nicklemama]

You need to find a good neurologist. Sorry to say but get out of Arkansas. Most of us here have to travel. I would d get on Dr Latimers schedule. It takes many months. You could get in to see Dr Trifilletti pretty quickly. I would not do a phone consult with the description you've just given. I would also look into NMDAR receptor encephalitis just to make sure that is ruled out. These are not psychotic episodes. Don't let anyone convincenyounotherwise. They don't know what it is so they figure its mental.

[peglem]

You need to find a good neurologist. Sorry to say but get out of Arkansas. Most of us here have to travel. I would d get on Dr Latimers schedule. It takes many months. You could get in to see Dr Trifilletti pretty quickly. I would not do a phone consult with the description you've just given. I would also look into NMDAR receptor encephalitis just to make sure that is ruled out. These are not psychotic episodes. Don't let anyone convincenyounotherwise. They don't know what it is so they figure its mental.

Exactly! My pediatrician told me they are taught to refer what they can't figure out to psych.

[stacyH]

I would just add that if you take an appointment with Dr. Latimer in MD they will also put you on a cancellation list and move you up as people cancel. We got moved up months and were able to get in quickly. Get on all the cancelation lists and get you daughter in as soon as one of the Pandas doctors has an opening. Just remember that your daughter is going to be OK. It's hard to believe now but you will figure this out. Good luck

Stacy

[Hopeny]

I re-read your post on my computer and also wanted to mention that some of the symptoms you mention can also be Lyme/co-infections. The knee pain is a classic Lyme symptom, again I think you need to rule out many things. Sorry if this seems overwhelming, but my recommendation would be a full infectious disease workup, a neurology workup by a PANDAS knowledgable doc as provided above, a Lyme test from Igenex and an evaluation by a Lyme Literate doctor. One other thing to consider, as you mention a kitten, you should test for Bartonella with a good lab like Galaxy Labs, you might ask your ped to do this. Bartonella is spread through ticks and cats, especially kittens, and can be difficult to test for which is why I recommend Galaxy. The treatment for Bart can start with Rifampin and Doxycycline paired. Does your DD have any purple streaks that look like stretch marks? Sometimes these will show up with Bart, sometimes if you have it they only come out with treatment. When did she get the kitten? Did it coincide with these incidents?

 

You will need to act as a sort of captain with all these doctors if you do not have a pediatrician on board to help. Keep copies of all your tests and do not completely rely on the doctors for their interpretations, do your own research on these boards and the internet. Mainstream doctors may discount findings that are significant.

 

Please note your child can have multiple infections. It seems that one major infection causes chaos and enables others to flourish.

 

This info may be helpful:

PANDAS: http://www.ocfoundation.org/default.aspx?id=2529&terms=pandas

Lyme: http://www.ilads.org/files/publications_pediatric_school_psych.pdf

Bartonella: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546763/

[pr40]

NIH study may be still looking for cases. see info at http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-M-0058.html

[MadisMom]

Thank you guys for all your responses and advice. Well since my last posting things really haven't changed with my daughter. We went to a neurologist at LeBonuers Childrens Hospital in Memphis a week ago. He "diagnosed" my daughter with Migraines and tension headaches. He is trying to treat her migraines with Amitriptyline. My daughter has only had one of her seizures like episodes and a small one at that since being placed on the medicine but she has gone weeks and months without them before then they flare back up so I dont know if the slow down is the meds or what. Her headaches are still there but I have been told it could take up to a month for the medication to work...so I am nervous wreck not knowing what to think or do. I want to trust the Doctor but my guts telling me its something else. The doctors make me feel like I am crazy... but in reality I just want to know whats wrong with my daughter so she can either learn to cope with it or get better.... this limbo stuff is killing us both.

[TOaksMom]

Have you contacted St. Jude's in Memphis? Here is their infectious diseases page: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=187b6f9523e70110VgnVCM1000001e0215acRCRD&vgnextchannel=aba413c016118010VgnVCM1000000e2015acRCRD

It has the department chair's email and says it is the preferred contact method. I would summarize everything and send it to her and see what they say. Maybe not mention PANDAS, PANS, Lyme, possible diagnoses, etc. Just explain all the symptoms, etc. and hopefully they will have you bring your daughter in for an evaluation.