Looking for help in my son's case

[borsooq]

Hello I am very new to this forum. I am looking for some answers regarding my son's problems. Probably, like other parents.

 

We're facing really big problem with our son. Will describe shortly what's state for today, why I am writing here and what happened before problems occured.

 

My son is now 3,5 years old. We're diagnosing ASD right now. But, here in Poland this diagnosis could take even more than year, especially, that his state/behaviour is uncommon.

Problems he has:

- completely regressed speech - he speaks nothing. Sometimes says 'nie' (no in PL)

- walking on his fingers

- hands waving

- brain fog

- some sensoric issues

- anxious, scared especially when children cries. We have younger son, which is 6 almost 6 months now, and when he cries older son is very, very scared

- isolated, but looking at children

- still asking for same things (by showing with his finger)

- for 100% liver problems - big belly, but thin legs and hands. Easily visible ribs

- emotional liability (he laughs and after a while cries), very easily irritating

- ADHD - especially recently he started to be very very hiperactive. Sometimes he focuses for a longer, for example with puzzles

- sensory activities - these walkin on fingers, loud sounds, baby crying

- developmental regression - very much. He was speaking. He knew at least 13 words and set them into simple phrases. Now he is unable to say a word. He knew lot of animals - now only few, I would say.

- sleep and night time difficulties - he has very huge problem with falling asleep. I do remember period in time, when he was awakening and crying for a long time. It was strange, because he was like still sleeping - didn't contact.

- urinary frequency at a day: would say - yes. It is very strange that he pisses quite often, but doesn't drink much. He also makes a pile very often (4-5 a day, but stool is quite good).

 

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Why I am writing here? Because we have a problem and looking for solution/origin. That's obvious, but why I suspect PANDAS or something similar? Becuase my son in november 2012 had sore throat and was treated with antibiotics - ampicilin. Of cours, our problems didn't start from november 2012, but we're dating it somewhere at spring/summer 2011. Will write why below. Anyway, after this treatment he started to be more communicative. After long period of time he started to talk something, at least trying to talk (he said very, very nicely 'nie' - 'no' in PL for my question if he finish eating an apple or not. It was so aware and nice with shaking his head correctly). He was much less hyperactive and focused. It looked like he is returning back. Now situation is worse, than before. Maybe the same.

This is the reason, why I am writing here.

 

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Some history.

My son was developing himself perfectly. He is preterm born (3 weeks) and was very little 2510g. We were so happy up to his 18-20 month of year, that he doesn't wait and develops so quickly and smoothly. He was early-babbling, turning in his stomach, crawling on his four, babbling, standing, walking sooner than his other children.

The reggression was after infection or vaccination. We don't know - it was really slowly and discrete. When we compare his speech from 18 and 30 months of life we can see dramatic difference, but it is quite big range of time. We were pointing our doubts to the doctors, but they always was saying that it is temporary behaviour or kids just behaves like this.

He had really lot of vaccinations too. But he had also very, very strange diarrheas when he was 13 months old. These diarrheas were investigating in our biggest polish children medical center (epic fail) without any conclusion. We're not sure of the regression didn't start from here (diarrheas). These diarrheas was very enigmatic and the only one clue about them is my wife's aunt. She is only one connection between our son and other child - her granddaughter which also had such enigmatic diarrheas, at least two times when she was at hospital with this. The times of occurence of these diarrheas could be bigger, but we're not sure how many times she had it. It can be caused by higher contact of the granddaughter with her grandma, my son sow my wife's aunt only two times in life - first month before diarrheas, and second... in the spring 2011, just after what the regression became really visible. My wife'e aunt up to today hasn't cured this issue - she has never finishing rhinitis, some skin issues, headaches and much more.

This is reason, why I am looking for solution here.

 

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What from my son's behaviour doesn't match ASD:

- he has perfect eye-contact

- he smiles very often

- loves to be with his parents, grandmas and other people, thet he knows

- no other ASD-like behaviours

- does not fear new places and people - just stays beside

- he is aware of himself. Answers with his finger, when I am asking where's my son

- it makes difference to him if we left room or not

- he point everything and questions with his finger

 

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Could you please tell me if it could be PANDAS? What to do to check that?

[SurfMom]

While it is important to be assessing your child for neuropsychiatric issues, please make sure your pediatrician is ruling the other half -physiological causes like strep or lyme. Really, the most thorough way to do that is to ask for a referral for a pediatric neurologist who will be much more extensive diagnostically.

[rowingmom]

I think I noticed one of your posts on an autism forum a couple of days ago. You said you have a DAN doctor that is doing stool testing - that sounds like a great place to start with the diarrhea symptoms you are seeing. These are the type of doctors that are going to be able to help you. Are you in Poland? I'm glad you found a DAN doctor. If you are in the US you will probably need to find a PANS/PANDAS specialist or perhaps an LLMD in your area.

 

Our daughter lost her speech and fine motor ability after her first MMR vaccination at 15 months. She communicated very well pointing her finger at things she wanted. She was diagnosed at the age of 3 (still no speech at this time) with oral apraxia (an inability to control facial muscles in a way that produces speech). After 3 years of speech therapy using the PROMPT method (the therapist would show us how to move her mouth and tongue to produce different sounds) she had age appropriate speech, and actually a very mature use of language.

 

She has always been very bright (could read at the age of 2, and point out words from books) and very aware of her surroundings, with good eye contact; also very sensitive to light/sound/touch stimuli. She would become very upset at loud voices and did not seem to be able to tell the difference between someone being loudly happy or loudly upset. She cried about everything. I even had to stop playing the piano because she would scream.

 

At the age of 9 she was given a diagnosis of high functioning autism because of her lack of understanding of social cues and age regressive emotional behaviour (she acted more like a 4 year old, tantrums, rages, very low tolerance for frustration, etc.). She wet her bed every other night. When she was 10 she went through a fairly traumatic experience and not long after that, developed the pain symptoms we now know were caused by a bartonella infection. At this time she also had cyclic IBS symptoms (diarrhea) that came and went a couple of times a month. She had terrible urinary frequency, and her teachers would often suggest that perhaps she had an infection. All the symptoms would become worse if she had a strep throat infection. While she was being treated for it the symptoms would get better. After treatment finished they would get worse. We never knew what was causing the problem.

 

We finally found out that she has lyme with a bartonella coinfection and is being treated for it. Her first lyme test (an ELISA test) came back negative, but the second test (a western blot done through Igenex) had a lyme-specific band and a positive bartonella PCR test. Her doctor (a lyme literate medical doctor or LLMD who uses many DAN protocols) has told me that her PANS symptoms (motor and vocal ticcing, some anxiety, not much OCD, loss of fine motor control) are likely the result of this infection causing an autoimmune reaction in her brain.

 

Her doctor thinks she was born with lyme, and that the assaults to her immune system by her vaccinations have only made things worse. At times, when we are using a good antibiotic protocol, all of her symptoms clear up. She is totally age appropriate. At other times, when she is having a reaction to treatment or is not being treated properly, she regresses back to her more autistic-like behaviours.

 

She has been in treatment for almost 2 years now, and does well most of the time, although we have not been able to totally withdraw anti-biotic treatment. We do use a lot of probiotics and she eats fermented vegetables to stop the overgrowth of pathogenic bacteria in her gut during treatment. We are hoping that some day her immune system with improve so that we are able to treat her with herbal antibiotics instead.

 

It sounds like you have come to a conclusion that perhaps an infection of some sort is causing your son's reactions/behaviours. Good for you, not many would have made the connection. This forum is so full of information. Best of luck to you in finding help for your son.

Edited March 1, 2013 by rowingmom

[norcalmom]

This labs should be open for testing in a few weeks - they may be able to help you figure out it pandas is the right path. Its so hard when they are that little.

 

http://www.moleculera.com

[3boysmom]

Not sure if it is PAANDAS as in the behaviors came from an infection that was caught or if this is a bad reaction to vaccinations alone. Many parents report their children's autism came from vaccinations. While you are looking into PANDAS/PANS, you may want to read up on some vaccine websites and DAN doctor protocol.

[tpotter]

This labs should be open for testing in a few weeks - they may be able to help you figure out it pandas is the right path. Its so hard when they are that little.

 

http://www.moleculera.com

 

 

Really...Dr. C's lab is finally opening? That is so good to know

[pr40]

if you suspect PANDAS, you can try to 1) do immune panel (blood work) 2) check for sensitivities (gluten, wheat, milk, corn, and so on -- diarrhea points in that direction) and low vitamins and minerals 3) start anti-inflamatory like ibuprofen and 4) antibiotics.

from what you say, how sudden it was, it might be PANDAS. IVIG seems to be the best treatment but it is not a cure.

good luck and do not hesitate to post again.

[T_Mom]

I don't know if this would be of help or not, but to me it does sound like a physical issue which if I were you I would start reading re: biological approaches to ASD diagnoses.

 

There is also a film called, "Autistic Like" which is a documentary a dad made of his experience with his son, named Graham, who was also diagnosed w/ autism symptoms, and through floor-time therapy was greatly helped--by much time put in by the parents of "getting into" their son's world, engaging him literally one to one for hours. It may be of interest.

 

www.autisticlike.com

 

Keep searching.

[borsooq]

Yes, we have DAN! doctor and we're waiting for tests results. I am from Poland, as you mentioned.

 

The lyme hypotesis is very probable. Month ealier before he had these diarrheas we were on vacation by the polish (Baltic) sea. On the way we went to wife's family and it was first time, when Dawid saw wife's aunt, which was very sick then. Without any symptoms we continued traveling by the sea. When we were on place he has got very high fever. After unsuccessful treatment we returned back to the wife's family for several days. He has got antibiotic and the treatment was quite long - 7 days. After he was cured we didn't see any problems with him. After a month he has got these damn diarrheas and just after diarrheas ended - vaccination (PRIORIX), but still we didn't see change. It was autumn 2010. On spring 2011 he has got another vaccination - Infanrix Hexa, wife's aunt went to us. It was march. May didin't bring any changes, at least we didn't see anyting. At the beginning of June something has changed. He started to be pensive, faraway. After that we were on another vacation, where he was more present and aware. When returned back, we noticed he speaks less. The change was on spring/summer 2011.

Wife's aunt and her husband are foresters. Lyme is their occupational disease.

We were suspecting lyme, but symptoms described in internet are different. But symptoms described are mostly related to adults.

Obviously, it looks like I am acting a detective now, but I do not believe it could be normal behaviour that child loses his abilities, this process wasn't spectacular, but slowly, so it looks like some chronic disease. Moreover my son's behaviour doesn't match austism perfectly. And another thing is that, according to J. McCandless - parent need to be partner in treatment for DAN doctor, so I am looking for possibilities to cure my son.

Edited March 2, 2013 by borsooq

[3boysmom]

There is a book you may want to read:

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders

by Kenneth Bock, Cameron Stauth

 

He also has PANDAS mentioned in his book.

 

Blessings,

Linda

[911RN]

Any child that has had "normal" growth and development then falls off the bell curve and also lacks the ASD hallmarks as you describe deserves a more extensive work up. From my prior experience with my son...I would suggest you insist on an overnight 24 hour EEG and a MRI. My son has Landau Kleffner Syndrome (LKS) that went undiagnosed for 4 years. A simple EEG early on would have detected this and allowed for better treatment at the onset and less permanent "damage" so to speak. My son also has many subtle ASD characteristics but he was ADOS negative not qualifying for that diagnosis. He also has PANDAS characteristics with strong Strep history (learned much later), however, he lost speech gradually and persistently from age 4 to age 6 due to abnormal nighttime spike and wave seizure activity in the temporal lobes. He had never had a seizure.This was not diagnosed until age 8. He also had CAPD as a result of his LKS. He has improved on anti seizure medication and a host of other treatments to support him academically.

 

Understand, this was a child that was on NOBODY's radar for issues that gradually went on EVERONE's radar for issues. He had absolutely no issues until about age 4. He had developed normal speech and achievement of developmental milestones that was actually ahead of peers and nearly lost it all. I am fortunate he has the ability to speak at all today and has recovered as well as he has. Much was missed and rationalized away by very experienced physicians and myself (a nurse) when more should have been done much earlier. Give him time, he'll catch up, let's just wait and see, he's OK, he's just a little quirky, he might be a little ADD, ....no, he had a major, rare problem!! This could have been picked up by very inexpensive, non invasive test- an EEG. As a mother, you want to believe everything is OK and accept the advice that is given to you by medical professionals even when your gut is telling you otherwise. No mother wants to believe there is a problem with there children at this age when there has not been one up until this point.

 

LKS has auto immune component similar to PANDAS. I consider my son to have LKS first, CAPD second (much improved), PANDAS with tics and OCD, third. The tics and OCD could also be just a sequela or remnants of his LKS, however, with the strong Strep history and other strong factors (dilated pupil history, loss of writing and math skills, neuro typical brother that suffered severe separation anxiety after strep)- I tend to discount that. Most important, the one link between all these diseases is the auto immune origin and abnormal brain, neurological response. There are theories of links to development of his diseases after a viral and bacteria insult which he had and fits with the timeline of his decline.

 

Fight for some additional testing- get an EEG for sure!

[borsooq]

We have refferal to the hospital to check EEG and MRI. Probably some other thing, like metabilism will be checked there as well. If not we have another refferal and we're doing these tests, I mentioned before (Organix, Comprehensive Stool Analysis).

 

Regarding allergies - do you know really good tests for that? We have done Food Detective, but seems it doesn't cover all allergenes (covers only 46) to which my son is exposed, because he still has some skin issues, even after all allergenes, detected by Food Detecitive were elimiated.

 

I thing about ImmuPro300, but we would need to take blood from his vain, what is pretty stressful.

[airial95]

I'd just like to shre with you that our son's story is very similar to yours. He was developing normally - far ahead of the curve than other children his age. After a strep infection, he also regressed verbally. He started having violent rages and tantrums as well. It was beyond what is age appropriate. When we had him evaluated, the pediatrician said that he met many of the standard criteria for autism - however, because he had been developing better than average prior to that - it couldn't be traditional autism and suggested PANDAS.

 

My son started antibiotics that day - within 2 weeks we saw a significant difference. He is now 5, and while he still has issues - he no longer shows any signs of autism and is even being tested for the gifted program for his Kindergarten.

 

It sounds like you did have some infectious thing at work (either bacterial or viral) that could be the culprit. I think you're on the right track looking at a PANS diagnosis.

 

Powodzenia!

[borsooq]

Looks like something (precognition?) redirected me here.

 

airial95 - thanks for you post. Unfortunately here in PL everybody looks at us as we were stupid, when we're assuring them that he was talking. Obviously, regardless of fatcs doctors are smarter and know more about our son than us.

 

Recently we were talking with my wife about her health issues in her childhood. She was shaking her hands when excited. She's doing it now as well and she doesn't know about this! She said, that when she was a child she was at hospital for long and hard antibiotics treatment, because she had many many times exceeded ASO in blood. Bingo!

I started to look into my son's Organix tests results and, according to my knowledge, Amy Yasko's book and my understanding if it, he is poisoned with aluminum. Aluminum is elevated when child has bacterial or streptococcus infection. It matches! We're on metronidazol (Flagyl) treatment right now. Will see the results. Furthermore my son has some flu-like infection for more than month already. He has got another antibiotic - it is for streps as well. We'll see what happen.

 

I wonder why doctors are so stupid and not checked ASO marker in my son's blookd after he was born. My wife had strep infection during all pregnancy. Obviously, she was treated with nystatine, but... there still was some probability that my son got this damn strep.

 

I hope, I will post here some optimistic news next time.