Son stopped speaking

[ZJsmom]

Hi,

 

I'm new here, but PM'd a couple of members privately and got some wonderful information. Now I thought I'd throw it out to the group. My son just turned 13. In February, 2008 he had a cold/sore throat and headache, and stopped speaking. He saw a neurologist who put him on neurontin, and his speech came back in a couple of weeks.

 

He had a similar episode in 2010, and another in March of this year, except this time his voice has not come back. He had a terrible headache for several months, and some sleeping issues which seems to be under control now. The pediatrician initially did a throat culture which was negative for strep, and he has had an MRI, seen an allergist and neurologist, and his pediatrician, who say that it is all psychological.

 

My husband and younger son both have lyme, so he has seen an LLMD, and the Igenex tests are negative for lyme, but slightly equivocal for bartonella and babesia, so he was put on Rifampin, Azithromycin, and Mepron. (I haven't started the Mepron yet, - he doesn't seem to have any symptoms of babesia, and we wanted to make sure he's not allergic to the first 2). His mycoplasma pneumoniae IgG abs came back at 608u/ml, (normal is 0-99), but his IgM abs was normal.

 

A counselor thinks it might be related to PANDAS and/or lyme. Has anyone else had similar symptoms, or suggestions?

 

Thanks so much!

Edited September 3, 2011 by ZJsmom

[sf_mom]

All my children have congenital Lyme Disease. My older DS had a sudden on-set after a strep related illness. All our children and myself are either confirmed positive or suspected of having Lyme, Bartonella, Babesia, Viral component 'several', Immune Deficiencies and KPU 'mineral deficiency'. We caught the Lyme early for our twins, initially on antibiotics at 2 to 2 1/2 years of age and started treatment for Lyme at 3 1/2 years of age. Our DD had one word at 2 1/2. She just started preschool with age appropriate language at 4... She still has a slight slur in speech but has made huge advances with her language skills.

 

It is my understanding that selective mutism can be a symptom of both illnesses, PANDAS and Lyme. There are at least a couple of individuals on this forum that have had great success in treating for PANDAS... You should be able to find some medical journal's on line regarding the implications of selective mutism when Lyme is involved.

 

My older son had only one symptom of Babesia when we started treatment a 'dry unproductive cough'. That particular symptom could be an indication of Bartonella or Babesia. With this particular child he comes up negative for Babesia and Bartonella when antibody testing is preformed but shows positive via other means of testing of his stool and ART. My other son's only indication of Babesia were low WBC and night sweats when being treated for LD in addition to positive Babesia FISH. Sometimes unfortunately with Babesia you can have very few symptoms as an indication. If you have a positive PCR or FISH test result for Babesia those are fairly accurate forms of testing when positive.

 

"The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection)."

 

"If it were me" I'd treat the chronic infection but not rule out the possibility of PANDAS treatment. It can take a good 10 months to treat Babesia. Many see tremendous improvement after the first four months of treatment as the RBC get replaced (120 days). However, treatment responsiveness truly depends on the individual unique set of issues. It is my understanding that those with IgA deficiencies are known to have a much harder time recovering from Lyme and take much longer to respond to treatment. So important to know some of those underlying issues.

 

I believe Dr. J in DC has treated children with similar symptoms and wondering if he is your LLMD since you are in the vicinity?

 

-Wendy

Edited August 29, 2011 by SF Mom

[T_Mom]

Hi -- Our d stopped speaking for over 3 weeks, but it was due to OCD issues (or so we were told.) Essentially, she had sudden onset OCD which then worsened quickly, and within a month of initial onset she stopped speaking.

Does your son show signs of OCD issues?

Do you see a difference in his behavior when treated with antibiotics?

I hope you are able to find answers very soon.

[PhillyPA]

Does your son still read and write? Does he still attend school? How is his cognitive function?

[ZJsmom]

Does your son still read and write? Does he still attend school? How is his cognitive function?

 

Thanks for your responses. This is all so overwheming.

 

PhillyMom- Yes he does read and write, and communicates through writing notes, but says it's harder to focus and concentrate since starting the antibiotics. He's not attending school right now, but his cognitive function is still good.

 

T.Mom-We're thinking the not speaking is OCD behavior too. He doesn't really show any other specific OCD symptoms, but he does wash his hands a lot and has issues about cleanliness. He's only been on antibiotics about a week, but I haven't seen much change; if anything, it seems a bit worse, and he definitely feels worse physically.

 

SFMom-He's not seeing Dr J, but my husband is going to see him next month. My son is seeing Dr S in DC, who is a nurse practitioner, who was practicing in California but recently moved her practice to DC.

[PowPow]

I have a 13yo who also has (had?) lyme & babesia WA-1. We are also in VA.

She has been diagnosed with PANDAS- though technically not strep-- if you get my drift

We treated the tic-borne diseases first & then made our way to a PANDAS doc in MD (neuro). It is a very, very complicated situation you are in.

We saw a great LLMD in Fairfax, VA- who got the whole picture and was very helpful.

My daughter also would not speak for periods of time-- it was an "OCD thing". at the place she was psychiatric-wise and neurologic wise-- NO AMOUNT OF COUNSELING will help her (and many of these kids!).

Feel free to PM me, if you want.

Once it seemed the lyme & babesia was under control (a year & 1/2 of massive oral abx, mepron, plaquenil, supplements and even a few months with a PICC and IV abx) my child's physical complaints were mostly better, but OCD was still disabling. The autoimmune component was not fixed by the above treatment. Our LLMD was looking at Enbrel- but we ended up with IVIG then pex. hope that helps some?

Edited August 30, 2011 by PowPow

[sf_mom]

A big warm hug and I sympathize with your feeling of being overwhelmed. You are at the beginning of a long journey for your family but I do believe you'll see improvement for both your husband and son.

 

First off, you are very fortunate to know what you are dealing with "Chronic Infection with the potential of PANDAS/autoimmunity"... Many don't have the test results you do. You are also fortunate to be close to two wonderful Dr.'s specializing in Lyme and PANDAS. I am sorry but I don't recognize your son's current Lyme Dr.

 

Your son's inability to focus and concentrate since starting antibiotics is most likely a herxheimer's response from die-off. Our family has experienced many of these herxs and sometimes the increase in symptoms can last a long time. You'll need a lot of support in understanding the "worse before better concept" involved with chronic infection. Most recently, our younger son had a 5 month long herxheimer response when we rotated him to the antibiotic of Rifampin. We saw the return of OCD, rage behavior, potty training regression, etc. We pushed through this difficult period and about month ago we saw huge improvement in symptoms again. I am sharing our experience only to provide some perspective that things can temporarily appear worse with very little improvement for a long time... So, hang in there.

 

You'll soon get a feel for Dr. J and his treatment style with your DH and know if he is a good match for your son. He is experienced in treating a similar set of symptoms. He also is not opposed to the use of IVIG when appropriate in the course of treatment. He is seeing a few from the forum and I can direct you to those individuals privately. Many on the Lyme forum, that originally thought PANDAS or have a PANDAS component and later confirmed Lyme have tried hdIVIG and the results have been mixed. None of us are sure why it has been helpful to some and why it has not for others. There are couple of theories: One is the hdIVIG acts like one huge antibiotic and the massive die-off creates an extended herxheimer's response making "some" individuals appear worse for a very long time, the other is the hdIVIG suppresses the bodies "own" immune response while the donor antibodies take over to fight infection temporarily making "some" appear to be better until donor antibodies expire. Similar to PowPow it maybe more about timing of the IVIG/PEX and I would go with a Dr. that is experienced in both treatments if possible when chronic infection is involved or build a team of Dr.s. PEX has also been used to treat Babesia with success. Babesia is a RBC parasite and with PEX you are clearing out the bad stuff/blood for good stuff. However, you are also eliminating good antibodies probably along with bad antibodies and because the Lyme/co-infection is most likely still in the soft tissue and/or organs you would still need to contend with those particular infections post PEX. Anyway, my best recommendation is find some great Dr.'s.

 

Please take the time to watch documentary 'Under Our Skin' if you haven't already. Dr. J is featured in many parts of the movie.

 

-Wendy

Edited August 30, 2011 by SF Mom

[T_Mom]

Hi ZJsmom,-- So to recap, (and again I am so sorry you are going through this right now, I understand how devastating this must be.)

 

Your son is not speaking, and you believe this is due to OCD, (not the first time this has happened) and he "washes his hands a lot and has issues about cleanliness."

 

His lyme Igenex tests were negative but "slightly equivocal" for bartonella/babesia and he was put on a strong combo of: Rifampin, Azithromycin, and Mepron, was this by the NURSE PRACTITIONER?? and you note "it seems a bit worse, and he definitely feels worse physically."

 

I guess my first step would be to take him to a reputable PANDAS treating doctor if you believe this might be the case -- ASAP.

 

Has he had a thorough blood work up? MRI? to rule out other issues which may be affecting his speech? Who read his blood results?

 

The feeling "worse" may be from a host of things, including a positive "herx" I suppose, or too much abx, or...

 

Please feel free to pm me, I am happy to tell you about our experience with a professionally well respected neurologist, connected to a large well established University hospital, in the DC area.

 

Your son is not speaking, and if this IS due to OCD then it is a severe case of OCD and seeing a doctor with experience treating PANDAS successfully could be essential for long term health. If it is Ps...

 

I have no idea who the nurse practitioner is -- who recently moved from CA to DC... but I can highly recommend a PANDAS treating doctor in the same area.

Edited August 31, 2011 by T.Mom

[Kayanne]

Hi ZJsmom,

 

I'm very sorry that your family is suffering right now.

 

I just wanted to add that my daughter, too, stopped speaking because of OCD. What brought her back to us was a month of prednisone prescribed by the same neurologist that TMom mentioned.

 

We've never tested or pursued lyme, so I have no advice in that area.

 

Also, feel free to pm me.

 

Best of luck.

 

~Karen

[ZJsmom]

Thank you so much for all your responses! They are so helpful. My gut feeling is that it is PANDAS, but we're pursuing everything... Is the neurologist you're referring to Dr L in Maryland?

 

 

Sydne

[T_Mom]

Thank you so much for all your responses! They are so helpful. My gut feeling is that it is PANDAS, but we're pursuing everything... Is the neurologist you're referring to Dr L in Maryland?

 

 

Sydne

 

Yes, Sydne, it is Dr Latimer in Bethesda MD. and she (like other Ps doctors) is literally 'saving lives' on a regular basis. I do not say that lightly, but as one for whom her insightful treatments have restored 'life' to our home.

 

I forgot to mention, that when my d was not speaking 3 years ago, it was before we had found Dr L -- another local neurologist suggested a steroid burst. He said it was "out of the box" , and others would think he was crazy, but that was what HE would do if he was the parent. We asked him to use Dr. K's protocol, which he did (with a longer taper) and my d literally "walked out" of the OCD storm, started speaking, etc. It was then 9 long months after that when we found Dr L. Our d was still struggling but much, much better with each progressive week until hitting a plateau in healing at which time we thankfully found Dr L.

 

Dr L suggested another prednisone burst and that one brought my d back to 110% herself, a VERY dramatic effect literally within 48 hours...even her teachers noticed (we had not told them we were doing a steroid burst.) All the best to you.