WHAT TO ASK THE DOCTOR?

[HaylesJohnson]

Sorry for my multiple posts, I am trying to work out how to delete my topics and just put everything together in one?

 

I really need some help from other parents on this one prior to an appointment tomorrow please!

 

Brief history: DS is 10 years old, was diagnosed with Scarlet Fever by clinical presentation mid-August.

Weeks after, he was experiencing a severe, sudden onset of OCD and minor tics - we got a referral from the GP to Mental Health, he underwent assessments. Over the coming weeks, symptoms ranged from OCD, tics to personality changes and "immaturity" for lack of a better term. Speech became affected, walking became odd, stiff, robotic movements.

 

I was reading a book about OCD, came across a paragraph about PANDAS and made the POSSIBLE connection - phoned Mental Health, they had a quick meeting, all agreed PANDAS was the most likely cause of the symptoms. We were referred to a doctor.

 

Doctors ran bloods, we were told they were negative for Strep, so Scarlet Fever could never have been an accurate diagnosis.

 

My son began to develop severe head pain, I took him to the after hours clinic and was advised "It is all linked, you need to just follow up with a regular doctor" even though we wouldn't be able to see our GP for a week!

 

After many weeks, we finally were able to secure an appointment with a Pediatrician in a nearby city - His opinion is that DS has Post Infection Neuro symptoms, as well as Tourettes, and is still toying with the idea of other possibilities also. He again stated that the ASO titer was too low, and DS could not have had Scarlet Fever. So, we left without any form of treatment. He did however order for extensions to be done on the existing blood sample from last month (the 2nd ASO titers) and also for an MRI to be done at the end of next week.

 

Yesterday my son developed a Petechial rash on his torso, around his armpits and inside his elbows. I took him to Outpatients again as it was after hours. The doctor was very concerned this was indicative of low platelets and ordered for bloods to be done this morning.

 

Upon receiving the results of these - the platelets are apparently OK, however his white cell count is very low. We have an appointment to discuss this and the results of the extensions arrange by the Pediatrician tomorrow morning.

My question to you all is: Now that I am at this point, going around in circles and not getting anywhere, what questions do I need to ask the GP? What tests should I request? I want my son well and if there is something bacterial, he needs antibiotics!

 

It has been suggested that my son might have a weak immune system and that perhaps his ASO titer WERE in fact elevated for him during the scarlet fever, given that since that time, they have descended. Should I request any specific tests to check his immune system? I will be arranging for another ASO/Atni DNase also to see if the level is still descending - perhaps this will indicate a low baseline. The doctor we spoke with last night said this is highly possible. Surely this current Petechial rash and low white cell count means SOMETHING?

 

I would truly, truly appreciate any advice you are able to pass along to me Thank you in advance!

 

Blood results thus far - I will get a copy of recent tests tomorrow while with the GP hopefully

 

2nd day of "possible" Scarlet Fever rash) - Antistreptolysin-O: <80 IU/mL

- Anti-Streptoccal DNase: <100 IUmL

 

6 weeks after diagnosis of Scarlet Fever - Antistreptolysin-O: <59 IU/mL

- Anti-Streptoccal DNase: <80 IUmL

[kimballot]

Hayles,

 

I am so sorry you have to go through all this run-around and so many different doctor opinions. It sounds like there is SOMETHING going on with your son's blood... What does the doctor mean by "his white cell count is very low"? one type of white blood cell produces antibodies, which is what is measured in the titers you have talked about. Here are my questions:

 

1. What, exactly, is measured in the low white blood cell count?\

 

2. Are his overall number of IgG and IgA antibodies low?

 

3. Are specific sublasses of IgG and IgA low?

 

4. How are his strep pneumonaie antibodies? I believe there are 14 different kids of s. pneumonaie titers they measure - is he at a protective level in all 14? (s. pneumonaie is not the same as the strep in strep throat -but it is a frequent cause of sinusitis)

 

5. What is his ASO and dnase B titers now and how do these compare to the last set of ttiers?

 

6. What are his epstein barr levels?

 

7. What are his mycoplasma levels and lyme disease (and coinfection) levels?

 

8. What are his c3d levels? (a measure of immune complexes, which can indicate autoimmunity).

 

 

Given all of the above - really- your best bet is to get a referral to a good immunologist who can help to parse through your son's immune responses and measure even more things that my Non-MD brain does not know.

 

I wish you much luck - keep us posted!

[dcmom]

Hayles-

 

I am not sure I am following all of your post, but I can hear the panic in this one. I wanted to comment:

 

First- there is no way to tell, after the fact, that your son did not have strep/scarlet fever. I am sure what they did was run strep titers. The fact is that about 30% of the normal population to not mount titers to strep, so negative titers are meaningless. This is a point that many docs seem to not know. There is a study on this, I believe it is pinned to the top of the pandas threads.

 

Second- if you are concerned about your son't immune system, I agree with Kim- you need to see an immunologist.

 

Third- This is sometimes hard to hear- but it is VERY difficult (if not impossible) to successfully manage PANDAS with a GP or a pediatrician. You really need to have a pandas specialist on board. From my experience, the longer you delay in seeing a pandas specialist, the more circles you will be going in, the more money you will waste, and the worse your child will get. I hate to put it like that- but I was happy for the cold, hard, truth when we were first diagnosed. Have you stated where you live? Maybe we can all help with recommendations. Most of us travel for our docs, some across the country, some travel internationally.

 

Last- PANDAS can have many, many symptoms. While I think it is wise to fully evaluate a symptom on face value- in other words do an MRI for the headaches- for us 10 times out of 10 a questionable symptom is ALWAYS pandas, and goes away with appropriate and aggressive pandas treatments.

 

For pandas- your doc should do a battery of tests to rule out infections: viral and bacterial (EBV, mycoplasma, etc, I assume a throat culture for strep has been done). Any infections found should be treated. If no infection found, most pandas docs will still prescribe one to two months (minimum of antibiotic). After that many move to month long steroid courses if improvement is not sufficient. After that IVIG and plasma pheresis are considered.

 

Good luck!

[colleenrn]

Hayley,

 

Your physician is so wrong about misdiagnosing scarlet fever due to normal strep titers. Many people (especially PANDAS kids) do not get elevated strep titers with strep. I read back over your posts from last week and the rash you described sounds just like a scarlet fever rash. Did your son ever have a throat culture, if so was it a rapid one or grown out for 72 hours? What antibiotic did they put him on and for how long?

 

Can you describe what his petechial rash looks like? I would be concerned that this could be a bacterial infection (with petechial rash) and would want them to run a lot of tests. I would ask for a throat culture and insist it be grown out for a full 72 hours. You have to be sure that the person doing the swab on his throat vigorously swabs both tonsils and the back of the throat. You can also have strep in many other areas of the body that a throat culture would not detect (perianal area, adenoids, skin, GI tract). Is the area around his anus red at all? If so, I would have them do a swab of that(both a rapid and a 72 hour culture.

 

I would do a CBC with differential also. What was his WBC count? I would have them also check his sed rate (ESR).

 

I am sorry you are going through this. i know how scary it can be. Just know that you are the mom and you are advocating for your son and be as assertive as needed to get the answers you need. Hang in there!

 

Colleen

[HaylesJohnson]

Thank you all so very much, I appreciate that you have taken the time to reply and offer me your advice.

 

At this appointment this morning I will bring along my list of questions (that you have helped me with) and I will request that we receive a referral to an Immunologist ASAP. I am quite sure there are some only a matter of 4-5 hours drive from where we live.

I will ask for the rest of the tests that you have recommended (My poor DS will be upset, he is getting very tired of the blood tests!)

 

I will not be leaving that office today without antibiotics or some sense of direction! And I will update when I know more!

 

Thank you again

[HaylesJohnson]

Hayley,

 

Your physician is so wrong about misdiagnosing scarlet fever due to normal strep titers. Many people (especially PANDAS kids) do not get elevated strep titers with strep. I read back over your posts from last week and the rash you described sounds just like a scarlet fever rash. Did your son ever have a throat culture, if so was it a rapid one or grown out for 72 hours? What antibiotic did they put him on and for how long?

 

Can you describe what his petechial rash looks like? I would be concerned that this could be a bacterial infection (with petechial rash) and would want them to run a lot of tests. I would ask for a throat culture and insist it be grown out for a full 72 hours. You have to be sure that the person doing the swab on his throat vigorously swabs both tonsils and the back of the throat. You can also have strep in many other areas of the body that a throat culture would not detect (perianal area, adenoids, skin, GI tract). Is the area around his anus red at all? If so, I would have them do a swab of that(both a rapid and a 72 hour culture.

 

I would do a CBC with differential also. What was his WBC count? I would have them also check his sed rate (ESR).

 

I am sorry you are going through this. i know how scary it can be. Just know that you are the mom and you are advocating for your son and be as assertive as needed to get the answers you need. Hang in there!

 

Colleen

 

His rash came up as tiny little purple dots under the skin - about 1-2mm each. Some of them make lines around any body creases (near armpits etc) and some are just spread all over his torso, there are thousands of tiny dots, some spread apart, some more clustered, they are very severe inside his elbows. The doctor described this as Petechia. It did not change colour when pressed and is not raised.

 

He has never ever had a throat culture, I even asked for one, but was told there was no need (by the doctors who feel low ASO titer means NO to previous strep!) I am going to request one today at the GP. I just want this sorted out. We know SOMETHING is wrong, I just want to know what that something is!

[kos_mom]

My daughter had petichiae just as you describe. The ER doctor had dx'ed her with strep, the pediatrician said it wasn't and theorized it was Ebstein Barr, although DD had had that before. Strep can have the symptoms you describe, although it is not a very common presentation--it is unclear to me whether in this form it may be a type of scarlet fever. Petichiae will appear in about 5% of EBV, and there are other viruses that cause it.

 

Your son definitely needs a throat culture to rule out strep. I would not leave the office without a rapid strep, followed by a 72 hour culture if negative.

[HaylesJohnson]

My daughter had petichiae just as you describe. The ER doctor had dx'ed her with strep, the pediatrician said it wasn't and theorized it was Ebstein Barr, although DD had had that before. Strep can have the symptoms you describe, although it is not a very common presentation--it is unclear to me whether in this form it may be a type of scarlet fever. Petichiae will appear in about 5% of EBV, and there are other viruses that cause it.

 

Your son definitely needs a throat culture to rule out strep. I would not leave the office without a rapid strep, followed by a 72 hour culture if negative.

 

 

Thank you - I will request the 72 hour culture today. This is what is so frustrating - SO many doctors have agreed that ALL of this is indicative of Strep or perhaps EBV, yet the doctors who can actually help us, are not willing to. I wish I were able to see the hospital doctors privately as they have been so incredibly supportive! I will also request the test for EBV while we are there.

Dr K is willing to work with us via phone or Skype if I am able to organise certain tests he would need for diagnosis, I will push for these from the GP too, and try to get that appointment ASAP. I am NOT leaving that office without SOMETHING! My Mum even said this morning, "If you have to come out of these without an answer, an antibiotic or a referral, I do NOT want to be here when you get home!" lol, I guess I am looking very desperate and determined at this stage!

[kos_mom]

I can't believe the National Health is so strapped for funds it is rationing rapid strep tests. In the US anyone can order them off Amazon for about $35 for 25 tests. Perhaps you can buy them off the shelf in the UK as well. It doesn't help of course if it's negative and you need the 72 hour culture--for that you do have to see a doctor.

[HaylesJohnson]

We are back from the GP and have some results... as well as more new tests sent off to the Lab.

 

DS has tested positive to Mycoplasma titres in his blood from last month! Therefore, the diagnosis at this stage is Mycoplasma Encephalitis.

 

I requested the throat swab, which was easy as she commented that he seems to have had a persistent mildly red throat throughout this whole process. I am concerned this was not an adequate swab however, being that DS did not protest, gag or feel any discomfort which Dr. K told me was imperative in ensuring you've done it correctly! I am not the doctor though, so I just need to wait and see what comes of that - I did ask for the 72 hour culture.

 

She also did a nasal swab.

 

She would like his bloods done again early next week, given that DS still has the Petechial rash. As far as that goes, she wonders if that and the low white cell count are due to a current viral infection.

 

I enquired as to whether abx woiuld be worthwhile with the Mycoplasma, she said no, given the infection was obviously some time ago - I asked then, how could it currently be causing symptoms - she explained the affects can stay in the body, but still said antibiotics wouldn't help! Again, I don't know enough about this, so will do some reading now and see what I can find.

 

I thank you all so much for your advice and support thus far, I truly, truly appreciate it and will keep you updated

If anyone else has any personal experience with Mycoplasma, I would love to hear about it - I am assuming then, if the throat culture comes back negative for Strep, we are ONLY dealing with Mycoplasma and then it would not be any form of PANS?

[peglem]

We are back from the GP and have some results... as well as more new tests sent off to the Lab.

 

DS has tested positive to Mycoplasma titres in his blood from last month! Therefore, the diagnosis at this stage is Mycoplasma Encephalitis.

 

I requested the throat swab, which was easy as she commented that he seems to have had a persistent mildly red throat throughout this whole process. I am concerned this was not an adequate swab however, being that DS did not protest, gag or feel any discomfort which Dr. K told me was imperative in ensuring you've done it correctly! I am not the doctor though, so I just need to wait and see what comes of that - I did ask for the 72 hour culture.

 

She also did a nasal swab.

 

She would like his bloods done again early next week, given that DS still has the Petechial rash. As far as that goes, she wonders if that and the low white cell count are due to a current viral infection.

 

I enquired as to whether abx woiuld be worthwhile with the Mycoplasma, she said no, given the infection was obviously some time ago - I asked then, how could it currently be causing symptoms - she explained the affects can stay in the body, but still said antibiotics wouldn't help! Again, I don't know enough about this, so will do some reading now and see what I can find.

 

I thank you all so much for your advice and support thus far, I truly, truly appreciate it and will keep you updated

If anyone else has any personal experience with Mycoplasma, I would love to hear about it - I am assuming then, if the throat culture comes back negative for Strep, we are ONLY dealing with Mycoplasma and then it would not be any form of PANS?

Mycoplasma is a common PANS trigger, although if you think the swab for strep was poorly done, you can't really trust the accuracy of a negative culture. At any rate, most abx that treat myco will also treat strep.

 

I'm assuming, from what your GP said (myco was a past infection) that your child was IgG positive, but IgM negative. That does not necessarily mean there is no current infection. The way it is supposed to work is IgM elevates at the beginning of an infection, then recedes as the IgG elevates. That's what your doctor is basing the "past infection" on. But, in the case of chronic myco- the IgG would stay elevated when the infection is not going away and the IgM would have already gone down. You'd need to remeasure myco IgG in 4 weeks or so to see if it is going up or down. Also, often the IgM will only rise the 1st time the immune system "sees" that pathogen and future infections are met with a robust IgG response (because the immune system keeps memory Bcells) so the IgM is not needed. All that to say...the Myco infection may be current.

 

Congrats on advocating for your child and starting to get answers. I know how good it feels to finally be taken seriously after all the frustration of being dismissed.

[colleenrn]

Glad you got the swab and more blood work. If your son was positive for mycoplasma pneumo last month and was not treated with the right antibiotics/right dose and length of time, he most likely still has mycoplasma pneumonia and in my opinion and what I have learned he needs to be treated ASAP. The myco pneumo will not just resolve itself and if this is the cause of the petechiae, he really needs antibiotics. Mycoplasma pneumoniae can trigger PANDAS just like strep does. Hope you get answers soon!

 

Colleen

[HaylesJohnson]

WE FINALLY GOT ANTIBIOTICS!!!!

 

Poor DS got off to a rough start this morning, severe head pain, very sleepy and almost passed out while walking through the house - I was able to make an urgent appointment with the GP, who told me she had spent all night worrying about the fact that she hadn't just given antibiotics, she tried to get hold of the Pediatrician, however as he is on holidays, the calls went to voicemail - she then phoned a Microbiologist she knows well to discuss DS's case with her. She was going to phone me this morning to pick up the prescription anyway.

 

She also sent him for some more bloods this morning, including one for Systemic Lupus (as it is in two generations of my maternal family), just on the off-chance. She has definitely given this a lot of thought overnight and now I feel a lot more confident with my son's health in her hands!

 

In the meantime, I have given DS Ibuprofen today, but we are under instruction that if he does indeed black out at all to get him straight to the ED, which is obviously common sense anyway - as for the severe head pain, she said just continue giving him the Ibuprofen in the meantime.

 

He explains it as all of a sudden, its as though someone grips his brain and squeezes and then everything starts to go black, from the outside in, so he just sits down wherever he is at the time to stop from blacking out!!! This MRI next week cannot come quickly enough!

 

I thank you ALL so much for your amazing support to our little family throughout all of this, it definitely helps us get through our days knowing we are not alone, there are other people with advice, answers and experience to help us along our way