In a childrens hospital right now, !4 year diagnosed w Lymes in October.... treated fw days on amox.
Next treated w doxy less than 10 days.
Betty G this is for you!
BNext treated w Ceftrioxone, 2 weeks, then dermoid cyst shows up.
Brain surgery jan 28th
In and out of hospital w Menningitis twice. Sent home w steroid, soon as steroids stops crushing heachahes...
spinal tap this am... increased pressure 38... draines 20 mls off.... still SEVERE headache
Hospital wants to put shunt in???
WHERE SHOULD I TAKE HER? ANSWER QUICKLY, NEED TO MAKE DECISION NOW!!!!!
Posted by daise (Member # 13622) on :
Hi waterfam2,
I just sent an urgent, private message to BettyG.
I'm so sorry. I understand your fright, from your post. I think she usually gets on the forum in the evenings.
I'm so sorry, but this is way over my head. I'll PM Lou. OK?
daise Posted by daise (Member # 13622) on :
Everybody:
Who has experience in this? Please reply. Help needed!
daise Posted by bettyg (Member # 6147) on :
waterfam,
this is above me too, but let me ask you these questions to get a better handle on things on my end, and for me to send SOS to 3-4 folks whose opinions i really respect.
1. which children's hospital are you at? name and city please.
2. is your daughter under the care of a KIDS LLMD? which one since there are 4 in NEW JERSEY!
USE INITIALS ONLY on LAST NAME ... OK! None of them have same last initial so it will help.
they gave her steroids and did spinal tap this am!
they want to put a SHUNT IN!
let me send your post here to several folks and hopefully they can post on here QUICKLY. i never know IF THEY ARE ON PCS or not. I don't have their phone nos.
others reading this post, send out SOS's too.
mom, try this too NOW! i'll send my SOS to tincup and PAT SMITH, LDA PRESIDENT...
***********
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
20-30 listed....1 of them should be directly in YOUR area where you live!!! ************************
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *****************
mom, this is as much as I know! best wishes to you/daughter! my thoughts/prayers will be with you both.
update us all please! thx *********************
Posted by bettyg (Member # 6147) on :
mom, have YOU CALLED YOUR CHILD'S LLMD??? if not, please do immediately!!
i just sent out my SOS to those above plus to all 70 folks on my lyme group list!!
hopefully, the cavalry will come and respond SOON to you. Posted by waterfam2 (Member # 14956) on :
Im at children hospital philadelphia. I do have a LLMD DR P in absecon. I am waiting for him to call me.
He put her back on ceftiroxone for a clear 4/6 weels. We did miss a dose yesterday. SHes two weeks into ceftrioxone.
I am uncertain if Dr P will tellm e what hospital he advocates.
Posted by bettyg (Member # 6147) on :
i just got 2 automatated replies back:
TINCUP IS OFFLINE FOR NOW UNTIL FURTHER NOTICE.
LDA PRES. PAT SMITH IS GONE UNTIL MARCH 19....
I just sent this link to a new person treating lyme; hopefully, they will respond immediately!
signing off lymenet until late tonight! Betty -**************************************
Posted by pab (Member # 904) on :
Is her headache different after the LP? My son has had 50 ml drained with a pressure of 45. It takes awhile for the brain to adjust to the lower pressure.
I would think most neuros would do several LPs before shunting.
Good luck!
Posted by daise (Member # 13622) on :
Up
Posted by bsigel (Member # 11810) on :
I'm with PAB,hopefully they will drain off more with an LP or maybe give her diamox, if they can before they rush in to do a shunting procedure.
My daughter had 2 LP's that showed intracranial pressure, the first one didn't do much of anything to relieve headache. The second one they must have drained off enough, because it stopped her from projectile vomiting which had been going on for awhile.
We will pray someone can help you all!
Posted by mikej2323 (Member # 8913) on :
Waterfam2-
What was the reason for the brain surgery on Jan. 28th?
Was there a pleocytosis with the LP this morning? This would show if there were any WBC's in the fluid. I would see if you can get a specimen to culture. Sounds like some form of encephalitis. Encephalitis can have numerous different causes.
Obviously, they are checking for the bugs that cause meningitis, but should also check for mycoplasma, bartonella, herpesviruses and echoviruses. Blood tests for those would be needed, too.
Was there ever an MRI done? Doublecheck with the neurologist to see if there is what's called a Chiari malformation. Without more information, it's hard to know if this would be it, but a Chiari will have headaches that present like this.
If they want to shunt, they must want to redirect the CSF. There is a special MRI that can be done called a cine-MRI that will show how the CSF is moving around the brain and spinal cord.
If a Chiari wasn't being looked for on the MRI, then it could have probably been missed. If you do another MRI, you need to get the maximum multiple angles; sagittal, frontal, transverse, and mid-sagittal planes. This is CRITICAL!!!
quote:Originally posted by bsigel: I'm with PAB,hopefully they will drain off more with an LP or maybe give her diamox, if they can before they rush in to do a shunting procedure.
You would think they would try that first!
Posted by blackpowder (Member # 13637) on :
So sorry you are going through this. Fin, a former poster is a wealth of information and resides in NJ. She can help you. I'd trust her info for my own family and myself. Here is her e-mail. [email protected]
Contact her. She knows alot about the docs in New Jersey. Good luck and God bless
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by waterfam2: In a childrens hospital right now, !4 year diagnosed w Lymes in October.... treated fw days on amox.
Next treated w doxy less than 10 days.
Betty G this is for you!
BNext treated w Ceftrioxone, 2 weeks, then dermoid cyst shows up.
Brain surgery jan 28th
I am unclear about this: Is she's had lyme since October, how come she only had three weeks of treatment in four months -- ??? Did she have a regular doc and not an LLMD during these months?
quote:In and out of hospital w Menningitis twice. Sent home w steroid, soon as steroids stops crushing heachahes...
spinal tap this am... increased pressure 38... draines 20 mls off.... still SEVERE headache
Post spinal tap = crushing headache, as in, WORST EVER headache, even using every precaution. Did they try a blood patch?
Has she been tested for coinfections? At what lab? Babesia can cause wretched headaches!!!
Hospital wants to put shunt in???
I would do this only if she was in danger. I hope by now an LLMD has responded who is familiar with your situation. Neurologists are notoriously unfamiliar with lyme disease and its manifestations. It would be very reassuring to have one overseeing.
quote:WHERE SHOULD I TAKE HER? ANSWER QUICKLY, NEED TO MAKE DECISION NOW!!!!!
I'm not local so can't help with that.
I pray for the best outcome for you. I would think she should STILL be on IV ceftrixiaxone; two weeks is not nearly long enough, especially in light of having had steroids, which inhibit the immune system, allowing any remaining lyme bacteria to flourish.
Please keep us posted when you are able as I know you must be terribly busy and stressed; you'll be in our thoughts and prayers.
Michelle
Posted by cantgiveupyet (Member # 8165) on :
Ive only heard good things about childrens hospital of phila.
My mom works with someone whos son has a swollen knee they drained it and tested it for lyme. They made the lyme diagnosis after this three year old just stopped walking suddenly.
Im not sure if any of the other top Philly hospitals would treat a child. Im thinking they most likely would refer her to childrens.
From my limited knowledge of brain surgery, I think menengitis can be a side affect of the surgery.
I hope your LLMD was able to guide you.
Posted by bettyg (Member # 6147) on :
mom, i hear my close friend, ICESKATER, was aboe to make contact you! so glad since she's a former RN, and dealt with that hospital all the time.
hope things are better now then when you first posted late afternoon.
by the way, WELCOME to the board; and glad you found us!
edited to add: since blackpowder showed FINETTE'S HOME EMAIL, thank you; finette sent this to me by way of another forum.
[ 17. March 2008, 02:34 AM: Message edited by: bettyg ]
Posted by waterfam2 (Member # 14956) on :
SHe has been on ceftrione again throgh IV. She is 2 weeks into treatment but has missed the last two days doses. The docs here believe she has been treated sufficiently "probably". My LLMD put her on it however the IV failed saturday right before w left for the hospital. I have the anitbiotics at home but I would need to get her out of here or sneak it in like ai did last time.
The military is currently flying my husband home so I can get some relief and help!
Posted by hshbmom (Member # 9478) on :
Hi Mom, I forwarded your message to a semi-local person who has experience with CHOP and Lyme.
I'm praying for your family!
Posted by lymemommy (Member # 12495) on :
Waterfam, I am going to pm you with some local contacts.
kp
Posted by Michelle M (Member # 7200) on :
1. How long has she been treated by the LLMD?
2. Has she been tested or treated for coinfections like babesia or bartonella?
3. I would ignore the hospital's BS about 2 weeks being long enough and demand she be put back on IV Rocephin (Ceftriaxone) assuming your LLMD's OK. Hope you have heard from him by now.
Michelle
Posted by just don (Member # 1129) on :
I am unclear as to wether this is a 14 year old,,,or a 4 year old??? Has shown both ways .
Either way I would get them to the famous DrB(oops,,,edited to say I REALLY meant Dr. J,,my bad))) as soon as possiible,,he is the BEST kids doc
IF anyone can make a difference for this poor child HE can!! wishing the best for you and yours--just don--
[ 17. March 2008, 07:14 PM: Message edited by: just don ]
Posted by Lymetoo (Member # 743) on :
[
[ 17. March 2008, 01:45 PM: Message edited by: Lymetoo ]
Posted by waterfam2 (Member # 14956) on :
My daughter is 14 years old. To give everyone information, My LLMD answering service failed to forward the message to him yesterday so I am glad to know he still loves us. My husband is currently in a helicopter flying to us from the carribean. (USCG)
I have opted to give her a couple of meds to sedate her enough to get her in another ambulance to transfer her from chops to john Hopkins. My LLMD recomended someone...a woman at stoneybrook in Long island. Unfortuanetly my insurance I dont beleive is accepted there but I did bring up this dr's profile and she has been trained, interned, and fellowed at JOhns Hopkins.
So off to another hopital and another 3,000 doctors. Amazing this all started ecause I thought it would help my child's self esteem to have her own thing. a horse on a farm w LOT AND LOTS OF DEERS AND TICKS.
Will this nightmare ever stop? Has anyone ever overdosed from eatting to many oreo cookies and lorne doones. They have cases and cases of them here at Chops. I guess if they cant fix your child you can always soak your sorrow in a cup of milk w unlimited cookies. Dont worry my husband the commander will be here soon and make sure I dont ovedose! Posted by Melanie Reber (Member # 3707) on :
I just want to interject that Johns Hopkins is well known to be a very poor choice when treating Tickborne diseases.
Please, speak with your LLMD before making this decision.
Posted by Michelle M (Member # 7200) on :
Waterfam, I know you're under a lot of stress and pressure right now. But can you please answer the questions above. Briefly restated, those are:
1. Has your LLMD been treating her since October or did you only just recently start up with him? 2. Has she been tested for coinfections like babesia and bartonella, etc? 3. Why was she on only a few weeks of treatment if she's been sick since October?
Thanks.
Michelle PS Melanie is really RIGHT ON about Hopkins. Do a search here and put the word HOPKINS in the title line. It's scary. Have you been in contact with anyone who has PM'd you?
Posted by Lymetoo (Member # 743) on :
HOPKINS???? THAT'S AS BAD AS MAYO FOR LYME!!!! Posted by Mtgirl (Member # 13278) on :
Definitely have Chiari ruled out. Even a herniation of less than 5 mm can cause a huge amout of CSF issues. As mentioned above, DEMAND a cine MRI to look at flow dynamics within the CSF. I actually had encephalitis and a resulting Chiari Malformation from my neuro-lyme infection. After 10 weeks on IV rocephin, my herniation went from a 6.6 mm to a less than 5 mm herniation. Absoluetly continue on with the IV antibiotics, and maybe a shunt will not be necessary.
I'm sending you and yours lots of positive energy and wishes of luck for a good pediatric LLMD neurologist!
Posted by lymednva (Member # 9098) on :
I have to agree with the others about Hopkins. It's not known for being Lyme literate or friendly.
I believe that Don meant to suggest you contact the famous Dr. J (not B) who is the foremost Lyme pediatrician, located in CT.
I can't imagine the stress you are under, and I know it's tough making decisions when you are limited by insurance and you are talking about lots of $$ here, but do try to get to the best hospital for treating Lyme that you can find.
Posted by AliG (Member # 9734) on :
I'm sorry, I wasn't at my computer last night. When I just checked my e-mail, I saw a message asking me to relay information to you.
Cave76 (recently banned) e-mailed asking me to tell you to contact [email protected], Fin (also banned) had read your post and wanted to help you, but couldn't so she posted on Lymeneteurope to try to find someone to get word to you to contact her.
I did see that Blackpowder already gave you her contact info. Fin is very familiar with children's doctors/hospitals in NJ. I hope that she was able to give you the help you needed.
I'm so sorry you're in such an awful situation. I'll keep you & your daughter in my prayers.
Ali
Posted by bettyg (Member # 6147) on :
thanks everyone for jumping in and helping mom and her sick daughter in hospital.
yes, i agree with rest; HOPKINS IS NOT A GOOD CHOICE OF WHERE TO GO! ***********************
mom, have you talked to ICESKATER/Sandi who sent you a PM; she is WELL VERSED on this children's hospital, and would be a good person to bounce things off since she was a pediatric RN in her former life before lyme!
mom, thanks for all the updates, and keep them coming, and please try to answer michelle's questions who is quite the RESEARCHER also. Posted by Michelle M (Member # 7200) on :
Is there any update on this? Would be great to hear some good news!
Michelle
Posted by mtree (Member # 14305) on :
any news...??
mtree
Posted by Lymetoo (Member # 743) on :
Hopkins is probably working overtime to convince her there's no such thing as lyme. Posted by waterfam (Member # 14379) on :
Hi everyone!!!
Well They schediles ny daughter for an eye exam and could not see any pressure in her eyes. SO I was able to just send her medical recoreds to John Hopkins.
The Drs sent her home on steroids and gabapentin so we are just waiting to see if the fluid comes back in ten days after we cut her off the steroids. I'm Praying but IM afraid it will.
If the swelling comes back then she will have to have the shunt??
Will see our LLMD tomorrow!!
Posted by waterfam (Member # 14379) on :
Hi everyone!!!
Well They schediles ny daughter for an eye exam and could not see any pressure in her eyes. SO I was able to just send her medical recoreds to John Hopkins.
The Drs sent her home on steroids and gabapentin so we are just waiting to see if the fluid comes back in ten days after we cut her off the steroids. I'm Praying but IM afraid it will.
If the swelling comes back then she will have to have the shunt??
Will see our LLMD tomorrow!!
Posted by Michelle M (Member # 7200) on :
Waterfam, thanks SO much for checking back in. I know you've been really busy. Have you had time to read the posts above?
I'll re-ask my questions here!
1. Were you able to speak with anyone who contacted you regarding a better hospital if daughter needs to go back in?
2. How long have you been with this LLMD? How come only a few weeks of treatment if treating since October?
3. Has she ever been tested and/or treated for coinfections like babesia or bartonella? Please advise about that.
The answers to these things will give a lot of insight and ideas. Thanks!
Michelle
Posted by Lymetoo (Member # 743) on :
The steroids will make her worse, I'm sorry to say.
I do hope you find the time to answer Michelle's question. Very important.
Posted by Michelle M (Member # 7200) on :
Up for answers to questions, and an update from your LLMD on his opinion!
Posted by Lymetoo (Member # 743) on :
up
Posted by mikej2323 (Member # 8913) on :
Yep, I agree the steroids will probably not help, if not make matters worse. If there is swelling somewhere, the macrolides, rocephin, some of the fluoroquinolones, doxy, and minocycline all have anti-inflammatory effects.
Current Molecular Pharmacology, 2008, 1, 68-79 Bentham Science Publishers Ltd.
Immunomodulatory Properties of Antibiotics S.C. Tauber and R. Nau*
Department of Neurology, Georg-August-University, G�ttingen, Germany
Abstract: There is growing evidence that certain antibiotics exert their beneficial effects not only by killing or inhibiting the growth of bacterial pathogens but also indirectly by immunomodulation.
This review aims at giving an overview of the immunomodulatory properties of antibiotics in different diseases:
The antiinflammatory properties of macrolides in chronic inflammatory pulmonary disorders were recognized more than 15 years ago and have been well documented in the last decade.
Recent data suggest that several antibiotics such as tetracyclines and cephalosporins may have a beneficial immunomodulatory or neuroprotective effect on neuroimmunological and neurodegenerative diseases including multiple sclerosis and amyotrophic lateral sclerosis.
Moreover, the non-bacteriolytic but bactericidal antibiotics rifampicin, clindamycin and aminoglycosides kill bacteria without releasing high quantities of proinflammtory cell wall components.
The use of bactericidal, non-bacteriolytic protein synthesis inhibitors reduces mortality and long-term sequelae in experimental bacterial sepsis, plague and meningitis.
Clinically, macrolides have been well established as an adjunctive treatment to Beta-lactam antibiotics in pulmonary diseases. For other indications, appropriate clinical trials are necessary before using the immunomodulatory properties of antibiotics in clinical practice.
I would scream as loudly as possible to get an MRI, or another one along with the cine-MRI. There should be no way to put in a shunt without a good CSF dynamics study!!!!!!!!!!!
[ 20. March 2008, 08:35 PM: Message edited by: mikej2323 ]
Posted by daise (Member # 13622) on :
Up
Posted by waterfam (Member # 14379) on :
Greetings everyone!!!!
After our last discussion, we were able to only send my daughters medical records to John Hopkins. They sent her home w neuortin and more steroids. Naturally she lasted for another 19 days. At that point we went back and opted for the shunt. We wondered if it would help>????? But i am glad to report we have finished our IV therapy for Lymes, the headaches are gone and so is the hydrocephalus... NOW WE WAIT TO SEE IF AND WHEN IT RETURNS!!
Thank you for all the prayers and advice!!!
Lori
Posted by bettyg (Member # 6147) on :
lori, i wandered how you came out; this was on page 2 !!
Posted by pab (Member # 904) on :
Lori,
What kind of shunt does your daughter have? I hope it works for her!
Posted by mikej2323 (Member # 8913) on :
UP for update
Posted by RDaywillcome (Member # 21454) on :
And the new President uses John Hopkins and Cleveland Clinic as prime examples. I heard him speak this on t.v.. So sad.
Posted by RDaywillcome (Member # 21454) on :
Is she still on antibiotic therapy? I have been ambulanced to the E.R. with severe pressure in my head but my b.p. was way over the limit.
They gave me something that made me feel weird and did take a scan of the brain. Gave me i.v. fluids, and eventually sent me home.
Posted by hshbmom (Member # 9478) on :
Waterfam, you can put your update here.
Posted by Pinelady (Member # 18524) on :
In my opinion, she should have never had the surgery. This was horrible. Absolutely horrible.
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