My 5 yr old daughter got very sick about 2 weeks ago,
complaining of a debiitating headache, and nausea and vomiting.
We thought it was a stomach flu, but it went on and on.
After 9 days of this, and repeated trips to the Dr and ER who said it was just stomach flu,
one day she woke up with one of her eyes turning in, and said she saw double and could not walk.
After going to the hospital and getting checked out, they suspected Lyme, and did a lumbar puncture and spinal tap
- her pressure was so high it was off the charts.
they drained enough fluid out to being her back to normal.
She now has the central hickman catheter in place, and is home from the hospital, working on her 28 days of IV antibiotics.
She has Lyme meningitis, along with paralysis/palsy of the 6th and 7th nerve on her face,
and still sees double, and has the messed up eye.
The neuro-opthamologist said it may take 6 months for the eyes to get better.
When he first saw her, before the tap, she also had a lot of pressure on her optic nerves.
She's been extremely sick, and didn't eat for almost two weeks while being sick and figuring out what was wrong her.
She also had an MRI which was normal.
She's had quite a bit of mental and emotional changes, with regressive behavior.
I am just wondering if anyone else has had a small child with an experience like this,
and what happened to them on the road to recovery,
and any tips, ideas, things to look out for, etc.. Thanks!!
[ 09-20-2009, 10:08 AM: Message edited by: jilly ]
Posted by feelfit (Member # 12770) on :
Jilly...nothing to add to help except best wishes for a complete recovery.
Feelfit
Posted by Sammi (Member # 110) on :
Hi jilly, I sent you a private message.
I hope your daughter feels better soon.
Posted by bettyg (Member # 6147) on :
welcome jilly
would you kindly break up your long paragraph into many, SHORT paragraphs and double space between them so we extremely neuro lyme folks like me/others are able to comprehend and read your posts? then we can offer assistance to you.
big thanks, and use my guidelines below to edit your post.
**************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most 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. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Okay, I edited and and put the space between the lines - hope that helps it be more readable!
Posted by Stacyb (Member # 13084) on :
Oh Jilly,
So sorry you have to go through this with your young child. I have 2 boys that have Lyme and our in tx. Have you contacted Dr J in Conn.--the pediatric Lyme specialist? I would as he is the best for kids. He does have a wait list but in your daughters case I am sure they may be able to get her in sooner or on a cancelation.
Prayers for your daughters full recovery and to your family as well.
Posted by Pinelady (Member # 18524) on :
I agree-you need a pediatric LLMD. Many docs will
not give the probiotics to keep bowels in check
and give something to keep yeast away while in
treatment both of which can be devasting to the
patient. There are a lot of parents here to help
with things that helped them with all symptoms. Prayers.
Posted by LisaS (Member # 10581) on :
Wow how traumatic this must be! I am so sorry your daughter is so sick. I hope she gets the right help that she needs and gets better soon. Posted by pab (Member # 904) on :
Jilly,
Did the doctors mention pseudo-tumor cerebri(intracranial hypertension)? My sons have PTC and it's diagnosed by a lumbar puncture/spinal tap. Do you know the opening pressure from the LP?
Wikipedia has good, basic information on it.
Posted by jilly (Member # 22469) on :
pab, yes, she had the PTC, diagnosed from the lumbar puncture test. That's what they think was causing her headaches.
The opening pressure was so high the doctor told us it was way off the charts, and he was shocked how much air/fluid/whatever they had to let out before it got down to a readable level.
Posted by Lymepool (Member # 15827) on :
So sorry to hear that your child is sick. I am glad that you were able to get on the path of a reasonable diagnosis so quickly. It took two years to get our first accurate diagnosis.
I wish that I could add some useful info for you, but the excellent advice above covers the next steps. The only thing I would emphasize is to check out all of the coinfections as well.
My child had babesia, bartonella, and Rocky Mountain Spotted Fever, but the infections weren't all found at the same time. It took 7 months of evaluations, treatments, testing, and retesting to piece together the entire picture.
The babesia treatment lasted about a year. Bartonella treatment has been ongoing these past 5 months. RMSF was "accidently" treated by antibiotics taken along with the babesia treatment: mepron. Getting a consultation from a pediatric LLMD will support your efforts.
The good news is that over the year my child went from really sick, often bed ridden kid to an active teenager. She is back in school and enjoying life again. TAKE COURAGE! The road to recovery may have peaks and valleys, but the general trend is likely to be up from here.
Lymepool
Posted by Brussels (Member # 13480) on :
So sorry you're going through that. My daughter was first sick at the age of 2. Then got re-infected again by the age of 3, by 4 got infected with tick born encephalitis virus, she got better of all these acute infections.
Only to fall sick again by the age of 5 with a relapse, very bad lyme arthritis. She's well now again.
We tried the abx route and then changed to fully natural though. It was not simple, it was awfully hard, stressful, but she's fine. Last treatment that put her to remission was photons and homeopathy. Check my thread PE1 and the bionic therapy.
Posted by jilly (Member # 22469) on :
Is there a fact sheet or 'suggested path' sheet I could take to my pediatric neurologist,
about the other things she should be tested for, and why?
I think he might be open to checking all these other things for her,
but I'd like something to print off and present to him, to make it easier.
And something that seems professional, and in 'medical terms' would probably make it easier too.
Thanks
Posted by MY3BOYS (Member # 17830) on :
PM sent for medical info for your MD
Posted by pab (Member # 904) on :
quote:Originally posted by jilly: pab, yes, she had the PTC, diagnosed from the lumbar puncture test. That's what they think was causing her headaches.
The opening pressure was so high the doctor told us it was way off the charts, and he was shocked how much air/fluid/whatever they had to let out before it got down to a readable level.
I was wondering what the number was. My kids pressures were around 450. PTC can cause constant, severe headaches. My kids have had this type of headache for 10 years.
Posted by Dekrator48 (Member # 18239) on :
jilly,
I can't add any other advice, but I am praying for your little daughter's full recovery.
What a scary time....so sorry you are all going through this.
The others have given you good advice....call Dr J in CT.
Posted by Veromia (Member # 22031) on :
My heart and prayers go out to you. I know everything will turn around.
Posted by Veromia (Member # 22031) on :
My heart and prayers go out to you. I know everything will turn around.
Posted by cjnelson (Member # 12928) on :
Bless you and your family...HUGS for you little girl...
Posted by lymeladyinNY (Member # 10235) on :
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